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					                          Matters                                                    No. 48

T H E   O F F I C I A L   N E W S L E T T E R   O F   T H E   P S P   A S S O C I A T I O N
                                                                             Summer 2010
The PSP Association Symposium
                A Conference on PSP and CBD
             For Carers and Medical Professionals
        Wednesday 15th September 2010, 9.00am - 4.00pm
at St Thomas’ Hospital, Westminster Bridge Road, London SE1 7EH
Leading neurologists and health and social care professionals will speak about
research and support for those affected by PSP and CBD. The Symposium is open
to carers, therapists and health and welfare professionals with an interest in PSP and
CBD. The study day will be accredited and certificates will be provided.
                                 Sessions will include:
• Introduction to PSP and CBD                                            • Communication issues
• Overview of research                                                   • Support for carers
• Behaviour and cognition                                                • Palliative care
• Balance and mobility                                                   • Continuing Care appeals
Tickets*: £35 for Carers / PSP Association subscribers and £60 for Professionals and
non-subscribers. Book by 30th June for the early-bird professional rate of £50!
*Price is subsidised and includes Tea / Coffee and Lunch. Tickets are available on a first come, first served basis.
Space is limited, so book early!

For more information and a registration form contact:
Deborah Wheeler, The PSP Association, PSP House,
167 Watling Street West, Towcester, Northants NN12 6BX

T: 01327 322415 F: 01327 322412 E:

                Working for a world free of PSP
                 The PSP Association Registered Charity numbers:
                 England and Wales 1037087 / Scotland SC041199
Editorial                                                       he General Election result is now
 Introduction from Jane Hardy                       1           known and already we are learn-
News Update                                                     ing of significant cuts to funding
 Latest news from The PSP Association               2
                                                        across a wide spectrum of Government
Letters from Readers
 Your chance to have your say                       4
                                                          This, unfortunately, may well result in
 Introduction from Dr. Angela Wilson                6   the most vulnerable in society having a
 Research Reports                                   7   more challenging time than they might
Focus on Care                                           otherwise have had. A key example is
 Continuing Health Care                            14   that of Health Care, which whilst its
 Paws for Thought                                  17
                                                        budget is not be cut, it is to be capped,
 Getting to Grips with Gadgets                     19
 Care and Support Update                           21   which in real terms will result in cuts to
 News from our Development Officers                23   services.
 Notice Board                                      28     As the BBC’s Political Journalist, Nick
Awareness & Fundraising                                 Robinson, states, “critics will be quick
 Tribute Funds and Legacies                        29
                                                        to point out that it may lead to bigger         Changing the subject completely to
 National PSP Awareness Week                       30
 Virgin London Marathon                            32   differences between good and bad public      that of fundraising, I do wish to take
 Supporters’ Fundraising                           35   services - that term “two-tier” will no      this opportunity to thank every one of
Contact Details                                         doubt return to the political lexicon.”      you who helps us so magnificently – be
 Telephone and email contacts                      36     For those with chronic or critical         it through, for example, running mara-
                                                        health conditions the budget news will, I    thons, holding Tea Parties, parachute
                                                        am sure, be concerning.                      jumps, mountain climbs, knitting and

PSP Matters
Executive Editor:
                                                          However, for those of you suffering
                                                        from PSP or CBD, or for those of you
                                                                                                     selling furry animals, raffles or golf days.
                                                                                                        The ways and means you find to sup-
                                                        caring for people in this situation, I am    port us is legion and both personally,
 Jane Hardy
                                                        pleased to be able to report that The        and on behalf of all my colleagues, may
Editor & Advertising Enquiries:                         PSP Association has commenced an             I say how extraordinarily grateful we are
 Rebecca Benney              01327 322416
                                                        early review of its 5 year plan which        to you.
                                                        was originally scheduled to run until           My best wishes to you all.
Design and Print:
                                                        2012, in order to ensure that it continues
 Falcon Press, St. James Mill Road,
 Northampton. NN5 5JW.                                  to focus its resources on key research
                                                        priorities; provides the best support to
Cover Picture:
Nigel Down, PSP Association Trustee, taking             people suffering from either PSP or CBD
part in this year’s Virgin London Marathon -            and their families and friends; and uses
one of the PSP team of 98 runners.                      every available opportunity to maximise
You can read about some of the runners’                 the engendering of awareness amongst           Jane Hardy
experiences in the ‘Letters from Readers’               relevant health and social care profes-        Chief Executive
section and on pages 32 and 33.
                                                        sionals, as well as the public generally.
The PSP Association                                       Regarding research specifically, my
 PSP House, 167 Watling Street West,
 Towcester, Northamptonshire, NN12 6BX                  colleague Dr. Angela Wilson has, with
                                                        Trustees’ approval, just launched the
T: 01327 322410 F: 01327 322412
                                                        Public Consultation on the draft PSP
                                                        Association Research Strategy and those
                                                        wishing to respond have until Friday 24th
                                                        September so to do.
                                                          I hope many of you will take this op-
                                                        portunity to let us know your thoughts.
Working for a world free of PSP
 The PSP Association Registered Charity numbers:                                                                                              1
 England and Wales 1037087 / Scotland SC041199
                    News Update
Public Consultation on The PSP Association’s Draft Research Strategy
   The PSP Association is seeking the views of people with PSP and CBD, their carers, health and social care professionals,
 researchers and all other interested parties on its Draft Research Strategy.
   The Draft Research Strategy sets out the broad focus for The PSP Association’s research for the five-year period from January
 2011 to December 2015.
   The PSP Association welcomes your comments on the Draft Research Strategy and your ideas for research that you believe
 could make a difference to the lives of people with PSP and CBD.
   To download a copy of the Draft Research Strategy please go to our website If you do not have access to
 the internet please contact The PSP Association to request a copy.
   The consultation will close at 5pm on Friday 24 September 2010.

Annual Symposium                               Scottish Registration
   Our annual Symposium on PSP and               We are delighted to announce that
CBD for carers and medical profes-             The PSP Association has finally achieved
sionals will take place on Wednesday           Scottish charity status and has been
15 September at St Thomas’ Hospital,           registered by the Office of the Scottish
Westminster Bridge Road, London SE1            Charity Regulator (OSCR). This means
7EH from 9.00am – 4.00pm.                      that, as an organisation, we are legiti-
   Leading neurologists and health and         mately able to raise money in Scotland
social care professionals will speak about     and it will also help us further raise the
research and support for those affected        profile of PSP and CBD.
by PSP and CBD.
   The Symposium is open to carers,            New Telephone Support                           The Reverend Lulu Pelly
therapists and health and welfare pro-            In response to a number of enquiries,
fessionals with an interest in PSP and         we would like to offer people with either       Staff Update
CBD. The study day will be accredited          PSP or CBD and Carers the opportunity,            It was with great sadness that we said
and certificates for professionals will be     should they wish, to talk about spiritual       goodbye to Nurse Specialist Maggie
provided.                                      care and support with our PSP chaplain,         Rose, who has been at the heart of The
   Sessions will include:                      the Reverend Lulu Pelly. When a person          PSP Association’s Care and Support
•	 Overview	of	research                        is confronted by an illness such as PSP         team since becoming the first PSP Nurse
•	 Behaviour	and	cognition                     or CBD it can often raise thoughts and          Specialist in 1995.
•	 Balance	and	mobility	                       questions about life and, particularly, end       Maggie has worked tirelessly for
•	 Communication	issues                        of life issues. We hope to further our          the Association over the past fifteen
•	 Support	for	carers                          care and support to you by providing a          years and made many friends along the
•	 Palliative	care                             means to receive spiritual and practical        way. We wish her a long and happy
•	 Continuing	Care	appeals.                    information relating to some of these           retirement.
   Tickets are £35 for carers or PSP Asso-     issues, which you might then wish to              We are delighted to announce that two
ciation subscribers and £60 for health-        discuss with your loved ones.                   new Nurse Specialists, Kat Haines and
care professionals or non-subscribers.            The Reverend Lulu Pelly has kindly           Katie Rigg, have now ‘taken over’ from
The price is subsidised and includes tea /     offered to help in the above way because        Maggie, covering, between them, Scot-
coffee and lunch.                              she was shocked and deeply saddened to          land, the north west and north east of
   Please note that tickets are available on   learn about PSP and CBD. If you would           England, north Wales, northern Ireland
a first come, first served basis.              like to talk to her, contact should initially   and Ireland.
   For more information and a registra-        be made through the PSP office and we             Kat and Katie introduce themselves
tion form contact deborah.wheeler@             will find a mutually convenient time for        later in the magazine, and we explain or call 01327 322415.               her to contact you by telephone.                their new areas in more detail.

  2                                                                              PSP Matters Summer 2010
                                                                               News Update
Volunteer Visitors                                                                          New Arrivals
   The PSP Association is aiming to pro-                                                      Congratulations to Seb Coe’s PA Susie
vide more frontline face to face support                                                    Swift (née Black) who gave birth to her
to carers and people with PSP or CBD                                                        second child, a “bouncing healthy boy”,
through the provision of a volunteer visi-                                                  Joseph Thomas (Joe) Swift in early De-
tor’s service.                                                                              cember last year.
   The service aims to offer regular one       your fundraising for the year? For more        Our best wishes also go to Jane
to one support, friendship and informa-        information call 01327 322419 or email       Boswell of IPC Media on the birth of
tion through the provision of volunteer                            Alexander James Boswell on Saturday
visitors who will pay regular home visits,                                                  3 April at 11:31am, weighing 6lb 14oz.
telephone calls or email if preferred. It      Virgin London Marathon                       (The PSP Association was IPC Media’s
is recognised that many carers are un-           We are immensely grateful to all 98        ‘Charity of the Year’ for 2009.)
able (or do not wish) to attend a sup-         runners who pounded the streets for
port group meeting and can feel quite          PSP in the newly branded Virgin London
isolated.                                      Marathon on Sunday 23 April. We thank
   The volunteer visitors would be             you for all your hard work in training,
trained, supported and vetted to ensure        fundraising and taking part.
that the service is delivered in the best        We would also like to thank all the flag
interests of all concerned. The volun-         wavers and supporters who offered en-
teers will provide a closer link between       couragement to our runners at the vari-
The PSP Association and subscribers and        ous cheering points on the course, and
will also signpost to other local agen-        to the staff and volunteers who helped to
cies and organisations able to provide         make the day such a great success.
support.                                         For a report and images of this year’s
   We are currently seeking funding to be      event, see pages 32 and 33.                  Joe Swift at one day old
able to start this service in a few areas to
ascertain how best to develop it across        National PSP Awareness Week 2010
the country. We hope to report further
on the development of this pilot scheme
in the next issue of PSP Matters.

Corporate Support
  We are pleased to announce that we
have been chosen as charity of the year
for the Northamptonshire Chamber of
Commerce, an organisation that pro-
vides a wide range of services to many
businesses across the county. This part-
nership will not only raise much needed
awareness of PSP in Northamptonshire,
but will also open many doors for The
PSP Association as we are introduced to
some of the most influential companies           A big ‘thank you’ to everyone who took part in National PSP Awareness Week,
in the UK.                                     from 3-10 April. Many of you got involved in organising a wide variety of Tea Parties
  If your place of work has a Charity of       and other fundraising events with families and friends.
the Year scheme, then why not nominate           It’s not too late to organise a Tea Party or other awareness /fundraising event. For
The PSP Association to benefit from            an update on our Awareness Week activities and to find out more, see p.30. PSP Matters Summer 2010                                                                                            3
       Letters from Readers

Letters from Readers
We welcome your letters by post or email. Please keep them coming in – this is your magazine
and we would love to hear from you! Our contact details are listed on P.36.

     My marathon experience
       I never thought I would be running the London
     marathon this year. I’ve always enjoyed watch-
     ing it, usually from the comfort of my sofa.
     Last year, in a moment of recklessness, I entered
     the official ballot for a place. Keen runners try
     for years to get a ballot place without success, so
     I was surprised and a bit shocked when my ac-
     ceptance pack arrived in October. I started won-
     dering if I could get out of it…
       Then, a month before Christmas, my dad was
     diagnosed with PSP. Now I had a cause to run for, so I started
     training in earnest. It was tough, especially with all the snow and ice in January,
     but I continued to pound the pavements on cold, dark winter evenings, and every
     weekend I added a mile on to my long run. I was amazed to discover that I could
     run 17 miles by the beginning of March, and once I started my fundraising the
     money started pouring in, too.
       I had heard stories about the amazing atmosphere and incredible crowd support
     on marathon day, but nothing prepared me for the experience itself. All through
     the 26 miles there were smiling Londoners waving from the pavements, shouting
     friendly words of support (I knew it was a good idea to have my name emblazoned
     on my PSP running vest) and offering jelly babies. Whenever another PSP run-
     ner came along we would have a quick chat and encourage each other, and it was
     always good to see the green balloons and flags among the crowd and hear an
     extra-loud shout from the PSP supporters.
       Crossing the finish line was one of the proudest moments of my life. Best of all,
     I have raised £1,300 for The PSP Association and the pledges are still coming in.
     The knowledge that this money is going towards the work of a charity which helps
     people like my dad is what kept me going and helped me to reach the finish line.
                                                      Ruth Connelly, Tonbridge, Kent

 4                                                 PSP Matters Summer 2010
                                                        Letters from Readers

 Just a little note to say thank you for all of your help and
 support during all those training months and on the actual
 day of the London Marathon.
 I am honoured to have run for The PSP Association and
 hope that the money I have raised will help you to continue
 all the great stuff you do.

  With best wishes,
  Rosanagh Hall, Bromley, Kent

              In 2008 I celebr
                                  ated my 60th birt
              disco. I had a fabu                    hday with my fam
                                   lous time as did all                 ily and friends at
             father was not ther                        my guests. My on                    a 60’s
                                 e with me. He die                           ly regret was that
             diagnosed with the                      d in 2004 from                              my
                                 illness, we had not                     PSP which, unti
            felt as though we h                       heard of. It is such                  l he was
                                 ad lost dad sometim                        a cruel disease and
            speak or communic                         e before he passed                          we
                                ate for sometime be                       away, as he could
           I realise how much                      fore he died.                              not
                                 more research is nee
           much The PSP                              ded before a cure ca
                              Association rely on                          n be found and how
          decided to set up a                      fundraising to conti
                                Tribute Fund in m                       nue this work. S
          to go into the fund                      emory of my father                       oI
                               instead of birthday                       and requested dona
         Setting up the Tri                        presents.                                 tions
                              bute Fund was sim
         and I feel positive                      ple with the help of
                             that I have done so                       The PSP Assoc
        helping the Associa                       mething to honour                        iation,
                             tion at the same ti                      my dear father, wh
                                                 me.                                      ilst
        Jan Close, Walsall

                                                                              new Larch-
                                             ce on Friday 2 April 2010 at the
 Our Go lden Wedding Anniversary took pla                                   ter Afternoon
                                          lden’ opportunity to hold our Eas
 wood  Sheltered Housing lounge – a ‘Go
 Tea Party for PSP.                                        en (grandchildren, nephews and
 Forty guests including  family, friends and eleven childr
                                                          oyed by the children and we all
 nieces) joined us for tea. An Easter egg hunt was enj
 had a lovely time.                                    0 for PSP. Please accept our goo
 We are very ple  ased that our happy day raised £60                                   be a
                                                     al PSP awareness week proved to
 wishes for the  future and hope the recent nation
  great success.
  Barry and Anne Linnington, Bright PSP Matters Summer 2010                                                                 5

In this section we update you about developments in PSP and CBD research.
Dr. Angela Wilson, Director of Medical Awareness and Research, writes:-

                                             which build up in brain cells. These cells    UK Centres (Liverpool, London and
                                             then die causing damage to different          Newcastle) are not looking to recruit ad-
                                             areas of the brain which, over time, pro-     ditional patients at present. The centre
                                             duces the progressive symptoms associ-        at Cardiff may open to recruit patients in
                                             ated with PSP and other brain diseases.       the near future. The trial will last a year.
                                               Noscira is conducting a clinical trial        NP-12 is expected to work in PSP
                                             to determine the safety and efficacy of       and Alzheimer’s disease by blocking
                                             a new drug called NP-12, or Nypta, as a       an enzyme called glycogen synthase
                                             potential treatment for mild to moderate      kinase-3β (GSK-3). GSK-3 is one of the
                                             PSP. NP-12 is also being tested in trials     main factors that makes the tau protein
                                             for Alzheimer’s disease.                      become ‘sticky’ forming the neurofibril-
                                               Previously, NP-12 has been tested on        lary tangles. By blocking GSK-3, NP-12
  Dr. Angela Wilson
                                             healthy people, both young and old, and       is expected to reduce the amount of tau

         his is an exciting time for PSP     was found to be well tolerated. In addi-      protein sticking together, thereby reduc-
         research. For years we have         tion, a study with 30 Alzheimer disease       ing the damage to brain cells.
         been waiting for commercial         patients dosed for 20 weeks provided             It is hoped that NP-12 will not have
companies to express interest in devel-      safety and tolerability data. In animal       the problematic toxicity of lithium. Both
oping a treatment for PSP and now we         studies (using transgenic mice) NP-12         lithium and NP-12 act on the enzyme
have two commercially sponsored trials       has been found to improve cognitive           GSK-3 but NP-12 is a more specific
underway.                                    performance and to reduce amyloid             inhibitor of GSK-3. The recent safety and
  The Spanish biopharmaceutical com-         deposits, hyperphosphorylation and tau        toxicity trial with lithium as a potential
pany Noscira and the Canadian biotech-       aggregation, neuro-inflammation and           treatment for PSP was terminated be-
nology company Allon Therapeutics are        nerve cell loss - all of which are factors    cause of lithium’s adverse effects on pa-
conducting independent clinical trials of    associated with Alzheimer’s disease.          tients. NP-12 is the only GSK-3 inhibitor
two new drugs. Tau protein is the target       NP-12 is the only compound reported         under clinical development.
for both. Tau occurs in all our brains but   to date that is capable of acting on all of      Allon Therapeutics is conduct-
in PSP, CBD, Alzheimer’s disease and         the histopathological lesions associated      ing clinical trials of a new drug called
some other neurodegenerative diseases,       with Alzheimer’s disease. That NP-12 has      Davunetide (also known as NAP and
the tau behaves abnormally, clumping         been shown to affect tau phosphoryla-         AL-108) as a potential treatment for PSP.
together to form neurofibrillary tangles     tion and aggregation, a feature of PSP as     It is also being investigated as a potential
                                             well as Alzheimer’s disease, is the reason    treatment for other tau-related condi-
                                             for thinking it may also have potential in    tions including Alzheimer’s disease.
                                             the treatment of PSP.                            Allon has reported that Davunetide
                                               The Noscira study is being under-           reduced tau impairment and preserved
                                             taken at centres in the USA, Germany          memory in mice bred to replicate
                                             and Spain and at four UK centres – in         Alzheimer’s or PSP tau pathology, and
                                             Cardiff, Liverpool, Newcastle and Lon-        that in Phase II clinical trials it has been
                                             don. Around 6 patients are planned to         shown to improve memory function
                                             be recruited to the study at each of the      in patients with mild cognitive impair-
The brain - anatomy and function             participating centres. Three of the four      ment, a precursor to Alzheimer’s. This,

  6                                                                           PSP Matters Summer 2010
Allon claims, makes Davunetide the              ing the neuroprotective proteins ADNP           The NP-12 and Davunetide trials are a
most advanced tau therapy in the world,         (activity-dependent neuroprotective           really exciting step forward in our quest
and given the involvement of impaired           protein) and ADNF (activity-dependent         to find a much needed, effective treat-
tau in both AD and PSP, provides strong         neurotrophic factor) to be secreted from      ment for PSP. Both drugs are new and,
scientific and clinical rationale for the       glial cells, also known as astrocytes or      on the basis of the work reported so far,
potential efficacy of Davunetide in PSP.        brain support cells.                          look promising. However, the work is
   In the UK, the safety and efficacy of           ADNP, in addition to its neuropro-         experimental and we will not know if the
Davunetide is being studied at four cen-        tective function, has been shown to be        promise they offer will hold true until we
tres – in Brighton, Glasgow, Newcastle          critical for brain formation. Specially       see what effects they have in people with
and Nottingham. Around 6 patients are           bred laboratory mice called ‘ADNP gene        PSP. We are still some way from having
planned to be recruited to the trial at         knockout’ mice do not form a brain dur-       an effective treatment for PSP but this
each centre. Because the numbers of pa-         ing embryonic development and conse-          investment in PSP research by Noscira
tients to be recruited is small, it is likely   quently die in utero.                         and Allon Therapeutics is a very much
that each centre will be able to recruit           Research into ADNP showed that             welcomed development and will help
sufficient patients from its locality and       an eight amino acid peptide (a piece of       move us closer to our goal.
will not be looking to recruit patients         ADNP) exhibited the neuroprotective
from further afield. The trial is sched-        properties of the larger parent protein.         For updates on the progress of the NP-12
uled to begin in the UK in September.           Davunetide is the eight amino acid pep-         and Davunetide trials please visit The PSP
                                                                                                   Association website
   Davunetide originated from work              tide derived from ADNP. Davunetide
on vasoactive intestinal peptide (VIP).         is thought act by preventing tau protein         For more information about the work of
VIP is a major central nervous system           from sticking together thereby reduc-          Noscira and Allon Therapeutics please visit
                                                                                              the companies’ websites at
peptide that early studies showed to be a       ing damage to brain cells, but the way in
broadly acting neuroprotectant caus-            which it works is not fully understood.

New Drug Trial in PSP
One of the lead investigators in the Noscira trial, Dr. Luke Massey from the Sara Koe PSP Research
Centre (SKRC), Institute of Neurology, London, writes:-

                                                science tells us that it might be possible    enables an objective assessment as to
                                                to interfere with the deposition of tau in    whether it really is the new drug which
                                                the brain and this new agent may act in       is having an effect or not. If, during
                                                this way.                                     the trial, there are any concerns about
                                                  This drug has not been tried before         adverse reactions then a participant can
                                                in PSP so we do not yet know about the        be ‘unblinded’ to determine if they were
                                                benefits it may or may not bring. In          taking the active or dummy medication.
                                                trials so far it appears to not have major       Participation in a trial involves fairly
                                                side effects.                                 intensive follow up appointments to
                                                  In drugs trials there is usually the        assess the effect of the drug in terms of
                                                possibility of being given what is called a   clinical benefit, side effects, and other
                                                ‘placebo’. This is a ‘dummy’ medication       tests such as MRI scanning and looking
   Dr. Luke Massey
                                                which looks exactly the same as the real      at the spinal fluid. Furthermore, it can-
  Noscira are sponsoring the first trial        medication but does not contain any of        not be guaranteed that the test medica-
in PSP of a drug which may have disease         the active ingredient. Neither the doctor     tion will be beneficial.
modifying properties - a very exciting          treating the participant, nor the partici-       Due to the nature of these studies
event.                                          pant themselves knows which is being          there are often very strict criteria for
  In PSP the protein tau is found in the        taken by an individual. This is called        inclusion, and long lists of factors which
brain at post mortem examination. Basic         being ‘blinded’. This is important as it      would exclude some from the trial. This PSP Matters Summer 2010                                                                                                  7
is so that the group studied is clearly         The trial is being run at four centres        This is an important event for the PSP
defined, meaning that any results will        in the UK (Newcastle, Cardiff, Liverpool      community and will hopefully be the first
be clear and not in doubt because of, for     and The National Hospital for Neurology       of many trials of new treatments for PSP
example, other medications being taken        and Neurosurgery, London), and at other       in the immediate future.
or any uncertainties in the diagnosis.        centres in Europe and the USA.

Looking at what causes PSP - The role of genetics
Control of tau gene expression
By Drs. Huw Morris, Elisa Majounie, Michael Owen and Michael O’Donovan, Cardiff University
School of Medicine

                                              intermediate step between the DNA             the same type of pattern in people with
                                              and the protein – the RNA. We have            and without PSP, suggesting that this
                                              looked at the amount of RNA and the           relates to the susceptibility to the disease
                                              form of RNA. (RNA for tau occurs in           rather than the disease itself. In terms of
                                              two main forms – short, known as three        the variants related to tau, one appears
                                              repeat tau and long, known as four            to increase the amount of tau whereas
                                              repeat tau.) Our aim was to determine if      another seems to increase the amount
                                              there are differences in the way that tau     of long tau. It is likely that both of these
                                              is produced in different brain areas, in      processes are important in the develop-
                                              relationship to genetic makeup, and in        ment of PSP. We have not found new
                                              different ways in people with PSP com-        variants that control tau expression.
                                              pared to those without PSP.                   What does the outcome mean
   Dr. Huw Morris
                                                 The work has been undertaken in            for people with PSP?
  We have recently completed our PSP          two phases - firstly, with a pilot study to      Future extension of this work is likely
Association funded grant on the control       establish the feasibility of the work fol-    to relate to therapeutic agents that can
of tau gene expression. I will outline the    lowed by a two year research project.         affect the expression of tau as these may
background to this research, its progress     What did this project involve?                be effective as disease modifying agents
and implications.                               •	Extraction	of	the	genetic	material	       for PSP. Understanding how expres-
  This work followed on from my own           (DNA and RNA) from control (non-PSP)          sion of the tau gene is controlled is an
and others’ earlier work looking at the       and PSP brain samples, derived from           essential part of this process. The results
genetic risk factors for PSP. Although        brains donated to the PSP Brain Bank.         of an ongoing research study on genetic
PSP is not inherited we know that com-          •	Determining	the	amount	of	tau	ex-         factors in PSP (the international collabo-
mon variation in the genetic code that        pressed in different individuals.             rative PSP whole genome study, funded
makes tau protein is a risk factor for PSP.     •	Determining	the	amount	and	type	of	       by Cure-PSP), is likely to shed further
The way that this works is unknown but        tau expressed in different brain areas.       light on the complex process that leads
understanding this will help our un-            •	Looking	for	new	genetic	variants	that	    to the development of PSP.
derstanding of the development of the         control the production of tau.                   Realistically, this is not going to trans-
disease.                                      What did we find?                             late into new treatments in the short
  We have studied the relationship               We have determined that the areas          term. Our results, together with similar
between the genetic code that makes tau       most susceptible to PSP (for example the      work by others, will be evaluated in the
(the tau gene-DNA) and the expression         globus pallidus, an area important for        light of the Cure-PSP study. We would
of the tau gene in brain. We also know        movement and speech) have the high-           hope that this will lead to new disease
that not all brain areas are affected in      est level of long, four repeat tau. This      models in the next 3 to 5 years, and the
the same way in PSP - some areas are          fits with the idea that long tau is more      development of potential new therapies
more susceptible. We have studied the         toxic than short tau. However, we see         over the medium to long term.

  8                                                                            PSP Matters Summer 2010
The international collaborative PSP whole genome study
By Professor John Hardy, UCL Institute of Neurology, London

                                                The first stage is complete and the lab    the other hits are new and all appear to
                                             work for the second stage is also com-        be involved in the interaction between
                                             plete but the analysis is ongoing. This       neurons and the support cells, called oli-
                                             study was funded by our sister charity in     godendroglia (or Schwann cells), which
                                             the United States, Cure PSP. Brain Tis-       surround them. This is an extremely
                                             sue was provided by the PSP Brain Bank        interesting finding which may eventually
                                             at Queen Square in London.                    lead us to develop novel therapies, as this
                                                So far in this study we have found         is an entirely new line of research. This
                                             5 genes involved in the disease: the          is an area of research where we expect
                                             ‘top hit’ is the tau gene which we have       rapid progress over the next few months
                                             known about for about 10 years, but           as we complete our analysis.

  Prof. John Hardy

   Drs. Rohan De Silva, Tamas Revesz,
Professor Andrew Lees and I have been
collaborating in a type of genetic study
called a ‘whole genome analysis’ which
has been led by Dr. Jerry Schellenberg
from the University of Pennsylvania.
   The purpose of this study is to look
comprehensively in our genome for
genes which alter our risk for PSP. In the
first stage of this study, DNA samples
from all the brain samples we have with
the disease were used and in the second
stage, samples from clinically diagnosed
people were used.

Haplotype regulation of alternative splicing at the MAPT locus
By Dr. Richard Wade - Martins and Ms. Tara Caffrey from the University of Oxford

                                               In PSP, as in many diseases, variation      tory has shown that the H1 form makes
                                             in a person’s DNA influences their likeli-    more tau carrying a fragment called
                                             hood of developing disease. Genetic           exon 10 than the H2 form. Additionally,
                                             studies show that people who carry a          we have shown that H2 makes twice as
                                             common form of the MAPT (micro-               much tau containing the exon 3 frag-
                                             tubule associated protein tau) or tau         ment than H1. In light of the finding
                                             gene, called H1, are more susceptible         that patients with PSP show a build up of
                                             to PSP than people who carry the other        tau proteins with more exon 10, we pro-
                                             main form, called H2. Our laboratory is       pose that the H1 variant makes carriers
                                             interested in identifying the specific dif-   more susceptible to PSP by making tau
                                             ferences between H1 and H2 gene forms         with more exon 10 and less exon 3.
                                             that confer this differing susceptibility.      On the other hand, H2 exerts its pro-
  Dr. Richard Wade-Martins
                                               Work already completed in our labora-       tective effect by making tau with more PSP Matters Summer 2010                                                                                            9
exon 3 and less exon 10. Our current         is located close to exon 10 and hence af-       These findings have begun to link the
work seeks to identify the parts of the      fects exon 10 inclusion.                      neuropathology seen in patients with
DNA sequence that are responsible for           These are exciting data which allow us     the strong disease association to the
these differences between the H1 and H2      to begin to understand the DNA se-            tau gene, and provide a basis for future
tau genes.                                   quences that could be responsible for the     functional investigations into the disease
   We have obtained results that iden-       functional differences between the H1         mechanism.
tify a gene region responsible for the       and H2 tau genes.                               By better understanding the underly-
increased production of exon 10 from            We are currently using similar tech-       ing genetic susceptibility to PSP it is
the H1 form of the gene. This region, a      niques in the region around exon 3 to         hoped that in the future researchers will
sequence insertion which makes the H1        identify complementary sequences in           be better able to develop treatments or
form of the gene slightly longer than H2,    that part of the gene.                        prevention therapies to cure PSP.

The quest for a diagnostic test for PSP - For earlier and better diagnosis
Early processes and changes in tau protein that lead to its abnormal aggregation
By Dr. Sean O’Dowd, Research Fellow in Neurodegeneration at the Neurological Institute, Mater
Misericordiae University Hospital, Dublin

                                             visors for this research are Professor           Secondly, I hope to develop a test, or
                                             Timothy Lynch at the Mater Misericor-         assay, which will analyse tau protein in
                                             diae University Hospital and Professor        the cerebrospinal fluid (CSF) of pa-
                                             Dominic Walsh at University College           tients, which is the fluid which circulates
                                             Dublin.                                       around the brain and spinal cord. CSF is
                                                Professor Walsh’s group has extensive      obtained by the relatively non-invasive
                                             experience in the field of neurodegenera-     technique of lumbar puncture. Work has
                                             tive research and has had great success       started on optimising this assay on ‘test-
                                             in studying the early changes that lead       tube’, synthetically-created tau protein,
                                             to the abnormal aggregation of another        and the early results are promising. If
                                             CNS protein in Alzheimer’s disease. I         the assay is reliable when used on patient
                                             am now harnessing this expertise to           CSF samples, it might in turn facilitate
  Dr. Sean O’Dowd
                                             focus on abnormalities in tau and their       earlier diagnosis.
   PSP and CBD fall into a category of       progression to cause the disease mani-           At present, there is no one reliable di-
neurological disease called the ‘tauopa-     festations we see in PSP and CBD.             agnostic test for PSP or CBD; if one were
thies’. Tauopathies are neurodegenera-          There are three core elements to the       available, it would improve diagnosis and
tive diseases characterised by abnormal      project. Firstly, I wish to recruit as many   facilitate better-informed management
behaviour of the protein tau, which is a     patients as possible with PSP and CBD         of patients and would also be very help-
protein found naturally in the nerve cells   in Ireland in order to build up a clinical    ful in early identification of patients for
of the brain and central nervous system      registry of patients - this is useful for     potential inclusion in clinical trials. In
(CNS). When this protein starts to ag-       epidemiological studies and to facilitate     order to validate the test properly, we are
gregate abnormally, it is toxic to nerve     further research. This will involve a full    also seeking to recruit healthy control
cells and causes their dysfunction and       medical history (including detailed fam-      subjects of similar age, who would be
death, ultimately leading to the symp-       ily history) and examination (including       happy to also undergo a blood test and
toms and signs of PSP and CBD.               cognitive or memory testing). We hope         lumbar puncture.
   My project focuses on the early proc-     that patients will also consent to a blood       Lastly, I am studying ‘cell lines’ of
esses and changes in tau protein that        test for genetic analysis, to try to estab-   neurons in the laboratory (from ani-
lead to its abnormal aggregation. The        lish if there are any particular genetic      mal brains) in order to study the early
Principal Investigators and my super-        markers of these diseases.                    changes in behaviour of tau protein and

 10                                                                           PSP Matters Summer 2010
again to test the usefulness of our new       If you would like more information on        I can be contacted via email at
assay in detecting early changes which      the study, or are keen to participate, I or on
herald neurodegeneration.                   would be delighted to hear from you.         +353 (0) 87 091 1029.

Understanding what happens in the brain in PSP
Cholinergic dysfunction resulting from degeneration of the pedunculopontine
tegmental nucleus in PSP: A major determinant of clinical features?
By Dr. Margaret Piggott, at the Institute for Ageing and Health, Newcastle University

                                            we compared the density of markers for       PSP (Richardson’s syndrome) or cases
                                            acetylcholine, particularly muscarinic re-   resembling Parkinson’s disease (PSP-P)
                                            ceptors, at the same anatomical location     may help to point where cholinergic
                                            between cases. We confirmed our initial      therapies could be directed.
                                            hypothesis, finding reduced acetylcho-         Last year I became Data and Com-
                                            line staining density in the PPN in PSP      munications Manager with North East
                                            patients compared to controls (non-PSP       DeNDRoN, a branch of the Clinical Re-
                                            individuals), while staining density in PD   search Network for Dementia and Neu-
                                            was not significantly reduced.               rodegenerative Diseases. We are very
                                               For acetylcholine receptors, the mid-     eager to support PSP clinical research.
                                            brain has mostly muscarinic M2 and           We keep a case register of patients who
                                            M3/M5 types. Our results show M2 re-         have indicated willingness to join clinical
  Dr. Margaret Piggott
                                            ceptors to be higher (~25%) in PSP cases     studies. Please get in touch if you live
   This project is to investigate the       compared to either controls or PD in the     in the North East and would like more
pedunculopontine tegmental nucleus          diffuse part of the PPN.                     information:
(PPN), a small area of neurons at the top      M3/M5 receptor types have been              Dr. Margaret Ann Piggott
of the brainstem. The PPN produces          measured by labelling total muscarinic         Data and Communications Manager
acetylcholine and other neurotransmit-      receptors with and without a compound          North East DeNDRoN
ters which are released in the thalamus     to block the M2 receptors. This part of        St. Nicholas Hospital,
in the centre of the brain. This pathway    the project is still under analysis al-        Jubilee Road, Gosforth
is one link in the brain movement con-      though the measurements are complete.          Newcastle-upon-Tyne, NE3 3XT
trol circuit.                                  Several people have reported that the       0191 223 2681.
   Aspects of the neurochemistry of the     superior cerebellar peduncle (SCP), a
PPN have been measured to test whether      bundle of nerve fibres which joins the
falls, slowness, rigidity, and poor re-     cerebellum to the brainstem, is shrunken
sponse to the drug levodopa in PSP          in PSP. The cerebellum is at the back of
are caused by changes in the PPN. The       the brain, tucked underneath the large
PPN is a potential target for therapeu-     cerebral hemispheres, and is an area
tic manipulation in Parkinson’s disease     concerned with movement control. The
(PD) and PSP. The results of this project   sections prepared during this project are
will help show the effect of targeting      being examined for changes in the SCP.
the PPN, either directly by deep brain         We are correlating our findings with
stimulation or by drugs directed at the     clinical symptoms, and with our com-
midbrain cholinergic system.                pleted and published investigations of
   Thin slices of midbrain containing the   cholinergic receptors in the thalamus.       The Basal Ganglia and associated
PPN area were stained to identify the       Any changes in muscarinic receptor           nuclei.
brain anatomy for each individual, and      subtypes in PSP or between ‘classical’ PSP Matters Summer 2010                                                                                          11
                  Focus on Care

Focus on Care
At the end of April we bid Nurse Specialist Maggie Rose a fond farewell upon her retirement
from The PSP Association.

               aggie joined the Association
               on 12 June 1995, not long
               after the charity was formed.
At the time she was the first ever PSP
Nurse Specialist in the whole of the UK.
  Since then Maggie has worked tire-
lessly in support of hundreds of patients
and families affected by PSP and CBD.
  Although at the heart of her work was
the telephone helpline - for many years
Maggie was The PSP Association’s Care
& Support - as the role of nurse spe-
cialist has developed she has also been
instrumental in raising awareness of PSP
and CBD amongst health and social care
professionals, alongside her colleagues,
through teaching sessions, seminars, and
offering advice and information.               Maggie views her ‘This is your Life’ album, with Jane Hardy and Michael Koe
  Since 1995 she has attended many
of the support group meetings across              “I have been touched by the              treasure for years to come.
the UK and, over the years, formed             kindness shown and all the good               Now retirement looms with
close relationships with many patients,        wishes I’ve received as I travelled         other promises, and although I
carers, family members and healthcare          around during my final round of             will miss you all very much, you’ll
professionals.                                 support group visits.                       never be far from my thoughts.”
  On Wednesday 28 April Maggie was                There have been hugs, laughter             Maggie.
invited to lunch at PSP House. After-          and tears which sum up the last
wards she was presented with an album          fifteen years.
full of letters and personal messages             I would like to take this oppor-
from our Patron, members of the Ex-            tunity to say an enormous ‘thank
ecutive Committee, Trustees, medical           you’ to everybody who contributed
professionals, PSP staff members and           to the many and varied farewell
so many of you, our subscribers, ‘past         gatherings and gifts. I had abso-
and present’, along with photographs           lutely no idea that these had been
and other anecdotes of her time at the         planned and it was the best send
Association.                                   off I could possibly have wished for.
  We thank Maggie wholeheartedly for              Very many thanks too, to those
her dedication, hard work and for every-       who wrote comments for my ‘This
thing she has given to The PSP Associa-        is your life book’ which is full of
tion over the past fifteen years, and we       wonderful photographs, articles
wish her a long and happy retirement.          and letters from my time with the
                                               PSP Association, and which I’ll

 12                                                                          PSP Matters Summer 2010
                                                                           Focus on Care
New Nurse Specialists
   Following Maggie’s retirement two           Katie Rigg is the new Nurse Specialist
new Nurse Specialists, Kat Haines and        for North East England and Scotland.
Katie Rigg, have been appointed to the         She qualified as a specialist children’s
Care and Support Team. Between them          nurse and a registered general adult
they will cover the north of England,        nurse, and has subsequently gained spe-
North Wales, Scotland and Ireland.           cialist qualifications for both Community
   Kat Haines is the new Nurse Special-      Nursing and Palliative Care.
ist for the North West, North Wales and
Ireland. She previously worked for some
                                               “Over a number of years I have
years on a neurological unit in Lanca-
                                               gained experience working in
shire and was also engaged in health
research at PhD level, looking at the          hospitals, community services
illness beliefs of people with Parkinson’s     and voluntary organisations (in-
                                               cluding hospices) which I hope               Katie Rigg
Disease and their carers.
                                               will prove beneficial in assist-
                                                                                          coping with these conditions
                                               ing people with PSP and their
                                                                                          deserve at least as good access to
                                               families to access the range of
                                                                                          palliative care as someone living
                                               services they require from these
                                                                                          with cancer. Much of my pallia-
                                               organisations. Increasingly over
                                                                                          tive care work has focussed on
                                               time I have developed a particu-
                                                                                          trying to achieve this goal for
                                               lar interest in neuro-disability
                                                                                          people enduring these conditions
                                               and neuro-degenerative condi-
                                                                                          and their families.”
                                               tions. I feel strongly that people

                                               Map showing areas covered by the nurse specialists          Katie Rigg will be
  Kat Haines                                                                                             covering Northeast
                                                                                                         England and Scot-
“I am really looking forward to                                                                          land (including the
working for The PSP Associa-                                                                             Edinburgh, Glasgow
tion and the Induction Week at                                                                           and Aberdeen support
Towcester was a really enjoyable                                                                           Katrina Haines will
and humbling experience. It was                                                                          be covering Northwest
great to meet all the team who                                                                           England, North Wales
                                                                                                         and Ireland (including
work so enthusiastically behind                                                                          the Towcester, Leicester,
the scenes to support the As-                                                                            Barnsley, Shrewsbury,
                                                                                                         Liverpool, Manchester,
sociation and I found it amazing                                                                         Belfast, Omagh, Dublin
how much organisation is nec-                                                                            and Limerick support
essary. Everyone involved is so
                                                                                                           Southwest England
committed to helping the cause                                                                           and South Wales will
of fighting PSP and improving                                                                            continue to be covered
                                                                                                         by Jill Lyons, and
the lives of people who have the                                                                         London and Southeast
illness and for their carers.”                                                                           England by Samantha
                                                                                                         Pavey. PSP Matters Summer 2010                                                                                        13
                 Focus on Care

Finding Your Way to Continuing
Health Care
If you have a long term, progressive illness such as PSP or CBD and your care needs are
primarily health needs, you could be entitled to NHS Continuing Health Care funding or
‘CHC’. However, so often, entitlement is not recognised early enough, causing unnecessary
worry and cost for families. Solicitor Janine Alexander has some advice...

     f you think you may be eligible for     likely to include your GP, Consultant(s),       this is the case you should point it out.
     CHC, you (or someone on your            Community Nurse and Speech and Lan-             (For example, it can be difficult to tell
     behalf ) should raise this with your    guage Therapist.                                whether someone with PSP is suffering
Primary Care Trust (PCT) and ask for an         The guidance sets out the gradings           from low mood.)
assessment. (Search for your PCT at          required for a “clear indication” of eligi-  •	 Remember	also	that	needs	which	have , phone 0845 4647, or             bility for funding, but the PCT must also       been met are still ‘needs’ for the pur-
mention it to a key healthcare profes-       consider whether looking at your needs          pose of the assessment. For example,
sional supporting you.) In order to          overall reveals a ‘primary health need’         if someone is at a high risk of falls (an
decide whether someone is eligible, the      notwithstanding the results of the charts,      important element in the criteria and a
local PCT staff will follow national guid-   which may not tell the whole story.             key symptom of PSP) but the risk has
ance and use standard forms referred to                                                      been alleviated by adding a guard rail to
as ‘tools’ (see              What can you do to help en-                     their bed, they should still be marked as
   The checklist tool is designed to es-     sure that the correct decision is               at a high risk of falls for the purpose of
tablish whether or not full consideration    made?                                           the eligibility criteria.
for Continuing Health Care funding is        •	 	Review	all	the	information	in	the	forms	 •	 Is	 complexity	 and	 intensity	 of	 need	
necessary. If the checklist shows that it       and supporting documents and check           increased by medical conditions oth-
is possible that the person under assess-       whether you agree with it. If you don’t      er than PSP? For example, different
ment is eligible then the PCT will carry        agree you should make this clear in          medications may be incompatible or
out a more detailed multi-disciplinary          writing to the PCT. As the forms are         add complications, while communica-
assessment using the ‘Decision Support          quite long and complicated, it is worth      tion problems may make it difficult to
Tool’.                                          examining them carefully for errors,         assess whether someone is in pain due
   The multi-disciplinary assessment            including calculating the assessment         to another underlying illness. Aids and
reviews care needs in detail to assess          scores.                                      treatments such as catheters and PEG
their nature, intensity, complexity and      •	 Have	all	the	relevant	people	been	con-       devices can also be complicating fac-
unpredictability. The Decision Support          sulted? Have you seen their reports?         tors. For example, catheters can cause
Tool form breaks down care needs into           If not, ask for copies, to check that the    urine infections which can be helped
‘domains’ (such as mobility, communica-         information is correct, and also for a       by drinking lots of fluid, but movement
tion, behaviour) with gradings for each         copy of what the assessor asked them,        and swallowing problems may make it
domain recorded in charts.                      in case questions were misleading or         difficult to ensure that someone with
   The forms are completed by the asses-        out of context.                              PSP drinks enough fluid.
sor after meeting with and interviewing      •	 The	 symptoms	 of	 PSP	 may	 mean	 that	 •	 Whilst	PSP	symptoms	can	remain	sta-
the patient, family and carers, reviewing       the ‘tools’ are difficult to use. The as-    ble for a period of time, it is a condition
care and medical records and consulting         sessors may not be aware of all the po-      with an uncertain pattern and rate of
with the relevant health and social care        tential symptoms or how these could          decline and is therefore fundamentally
professionals. For PSP patients this is         affect the results of the tests. Where       unpredictable. The progressive nature

 14                                                                           PSP Matters Summer 2010
                                                                             Focus on Care
   of PSP also adds to the complexity and     why you think the decision is wrong as        Persevere
   unpredictability of care needs. Ensure     well as putting forward your points in          Persistence often pays. Even if you
   that these points are properly account-    writing. It is not necessary to have a        feel “fobbed off ”, make sure that you put
   ed for in the forms.                       solicitor but they can help you to put        your views forward clearly and firmly,
•	 Produce	your	own	version	of	the	charts	    together your case a compelling way, in       pointing out to the professionals where
   for easy comparison and show these to      writing, at the meeting or both. Alterna-     anything they say doesn’t make sense,
   the assessor, explaining your reasons if   tively, you can contact the Patient Advice    and ensuring that your own views are
   you disagree with their assessment.        Liaison Service ( for         recorded in the paperwork. They do not
                                              an advocate, or ask someone you have          know your needs as well as you or your
What if I am unhappy with a                   confidence in to do it for you if you are     family and may miss something.
decision about CHC funding?                   unable to present your views yourself or        You have a right to see your medical
   If your application is turned down,        through a family member.                      records and the information the PCT
approach the PCT first, setting out in            The panel will be made up of health-      holds about your application under
what ways you are dissatisfied with the       care professionals who should under-          the Data Protection Act. You are also
procedure used, evidence collected, ap-       stand the criteria thoroughly. However,       entitled to information about the PCT’s
plication of the guidance or use of the       check how familiar they are with the          policies and statistics on CHC applica-
decision support tool. Usually the first      symptoms of PSP to see how much               tions under the Freedom of Information
step will be the PCT’s local resolution       information you need to provide on the        Act. This information can provide useful
process. This may involve a review by         specifics. The panel will ask both you        ammunition in support of your applica-
the panel and a meeting with them or          and the PCT representatives questions         tion or appeal.
another neighbouring panel.                   to help them reach a decision about             Keep a copy of the NHS Continu-
   If the local procedures have been          whether or not the decision to refuse         ing Health Care framework document
exhausted, the case should be referred to     funding was correct.                          to hand and refer the PCT staff to it.
the appropriate strategic health author-         If the original decision to refuse         This document sets out what they are
ity for review by an independent review       funding is upheld, you can refer your         supposed to consider and if you think
panel. You will usually be given a time       case to the Healthcare Commission or          they have departed from the guidance
limit within which to challenge the deci-     ultimately the Parliamentary and Health       point this out to them, to the inde-
sion and should adhere to this.               Service Ombudsman, and should be              pendent review panel and, if necessary,
   Explain why you want an independ-          given information on how to do this.          to the Healthcare Commission and
ent review, setting out in detail why you     If you are eventually successful, the         Ombudsman.
think the decision is wrong, identifying      Primary Care Trust will be responsible
in detail the particular items of evidence    for paying for your care since the original      This article is in memory of Keith
in the Decision Support Tool and other        incorrect assessment was made. In the          Barnard who very sadly died on Sat-
documents which are incorrect, or the         meantime, and because these processes          urday 8 May. With Janine’s support,
proper procedure has not been followed        can take some time, you should con-            Keith and his family successfully ap-
(if this is the case). You should provide     sider whether or not a further review is
                                                                                             pealed the decision not to grant CHC
evidence where you can to support what        required. Subsequent reviews should be
                                                                                             funding and were reimbursed all his
you say. This may include letters from        held at least annually and the assessor
doctors and care professionals saying         should consider whether, because of the        care costs dating back to March 2009.
that they agree with your points.             nature of the condition, more frequent          Janine Alexander is an Associate at
   You should be given the opportunity        reassessment is required. If your health      Collyer Bristow LLP Solicitors. Janine
to put your views to the independent          deteriorates significantly you can request    will be speaking on continuing care at our
review panel in writing and to see the        a review of your eligibility even if one is   Symposium on 15 September (see p.2 for
information that the PCT has put to           not due. The more frequently a person         details) and can be contacted at
them in support of its decision. You will     with a progressive condition is assessed
usually be given the opportunity to meet      the sooner they will be found to meet the     or on 020 7242 7363.
with the panel to explain your case about     criteria. PSP Matters Summer 2010                                                                                               15
                Focus on Care

Claiming NHS Continuing Healthcare, or ‘CHC’, can be a minefield. Here,
Psychiatric Nurse, Mary Barnett, whose father had PSP, and who has
considerable experience of the CHC process, shares advice on how to make a
successful continuing care application.
   NHS CHC was revised slightly in October 2009. All the              PCT Panel whether a person meets the CHC eligibility. The
guidelines, assessment tools and carer’s information are              PCT panel, formed of experienced health/social care profes-
available online, via the Department of Health website www.           sionals (often nurse leads), will usually not have met the per- (search ‘continuing healthcare’). It is advisable to        son and cannot presume health needs. They can only go on
read as much about the process and assessment beforehand.             what is presented to them in the assessment, so everything
   The assessment is only as good as the assessor completing          needs to be included in the paperwork.
the paperwork, so make sure your lead professional has a                 The PCT panel will usually accept the recommendation of
good working knowledge of the process and documentation               the MDT, however, common reasons for the panel not agree-
they are completing. Just as important, that they understand          ing the MDT decision when it is first put to them are:
the needs of people living with, or caring for, PSP and CBD.          •	 a	 poor	 assessment	 with	 vague	 explanations	 of	 the	 health	
If at any point you are unhappy with your lead professional,             needs,
contact your PCT and speak to someone in the CHC team.                •	 not	highlighting	the	primary	health	need	and	the	four	key	
   During the full assessment, (decision support tool) ensure            identifiers,
that each primary health need (domain) is assessed fully              •	 not	providing	evidence	of	the	health	needs	or	the	four	key	
by the multi-disciplinary team (MDT). There are four key                 identifiers.
identifiers that must be considered. These are outlined in the           If this occurs the application will be deferred so that these
DOH carers’ information booklet:                                      matters can be rectified.
   Nature – the characteristics and types of need the person             If, during the full assessment, you disagree with what the
has, and their overall effect, including the type of support          professionals are saying, make sure the lead professional
required to manage them.                                              documents what you believe on the final document being
   Complexity – how the needs present and interact and the            sent to the PCT panel. Ensure that any professional involved
level of skill required to monitor the symptoms, treat the            at any time with the person’s care (such as a nurse, speech
condition and manage any care.                                        therapist or GP) is asked to contribute, either by attending or
   Intensity – the extent and severity of need, and the sup-          submitting a letter to go with the assessment. This is vital for
port required, which involves the need for sustained/ongoing          a comprehensive assessment.
care.                                                                    You will need to provide evidence to back up what you are
   Unpredicability – how hard it is to predict changes in             saying, so keep a journal documenting daily needs, each time
needs and therefore any challenges in managing them, in-              they happen, and the care given. This could include every
cluding the risks to health if adequate and timely care is not        time you unblock a PEG/catheter, stop the person from fall-
provided.                                                             ing out of a chair or down the stairs, etc. These small details
   It is crucial that the MDT refers to these key identifiers for     are often missed by professionals, but need to be known by
each primary health need. If it doesn’t happen the assess-            the panel. This is vital and could make the difference be-
ment will not comply with due process.                                tween getting CHC or not, and will also be important if you
   It is important that CHC is health needs led, not diagno-          need to appeal.
sis led. As PSP and CBD are progressive illnesses, even if a             Remember, you always have the right to appeal; do this
person is not initially assessed as eligible, there is likely to be   AGAIN and AGAIN!
a time when they are, which might even be a matter of weeks
or months. So keep requesting repeat assessments, particu-              Mary is available to give advice to PSP subscribers -
larly whenever there are any changes in the person’s health.          contact or 01327 322415
   The MDT will recommend to the Primary Care Trust/                  and we will forward your enquiry.

16                                                                              PSP Matters Summer 2010
                                                                                                                                                  Focus on Care

                                                                        Paws for Thought
                                                                        Going on holiday? Facing pet challenges? Here we pay tribute to our furry friends and
                                                                        highlight a few pointers if you need a helping hand…
                                                                                                                    Pet Friendly Care Homes                     They will contact the social worker, who
                                                                                                                       Moving into a new home doesn’t have      will arrange for appropriate care ar-
                                                                                                                    to mean a painful split from the fam-       rangements such as a kennels or care by
                                                                                                                    ily pet. If you, or a loved one, decide     a friend you nominate.
                                                                                                                    to move into residential, nursing or           Your local council can also arrange
                                                                                                                    sheltered accommodation, many are           support for planned hospital stays, and
                                                                                                                    happy to accept pets, or will arrange       your vet or Yellow Pages directory are
                                                                                                                    regular visits. Check the     other handy contacts for local kennels
                                                                                                                    website for Pet Friendly Care Homes.        and catteries or homecare / pet sitting
                                                                                                                    (You can also check these against the       services.
                                                                                                                    independent reviews and ratings on the         There are also charities to help if you

                                                                                ets can be fun, good exercise and   Care Quality Commission website.) And       need some time out. Crossroads Care
                                                                                great company. Even the World       if you have lost or had to give up a pet,   provide a sitting support service to help
                                                                                Health Organisation has recog-      charities such as Pets as Therapy will      carers get out, and if you are over 65, The
                                                                        nised that pets bring immense benefits,     arrange visits to care homes, hospi-        Cinnamon Trust can often arrange for
                                                                        and in these days of pet passports, they    tals, hospices and other venues so that     dog walkers to support you. They can
                                                                        can go almost anywhere it seems! If you     residents can enjoy time with some furry    also arrange pet re-homing and match-
                                                                        have a long term neurological condition     friends.                                    ing if you want to provide a loving home
                                                                        such as PSP or CBD, or are supporting                                                   to a new friend, and are another useful
                                                                        someone who has, there are some practi-     Extra support for you                       contact for pet care if you need to go into
                                                                        cal aspects to think about, so here are a     It’s good to have a support network,      hospital.
                                                                        few pointers.                               and popping in to feed the cat, take
                                                                                                                    the dog for a walk, or providing a lov-     Canine Care Card scheme for
                                                                        Going on holiday                            ing home in case of emergency can be        peace of mind
                                                                          More holiday venues, including Trav-      a good way for friends and family or           If you are worried about ensuring a
                                                                        elodges, are willing to take pets these     neighbours to help out if you need a bit    safe and happy future for your faithful
All animal images in this article are courtesy of

                                                                        days. Some will charge a small premium      of support.                                 friend, The Dog’s Trust run a Canine
                                                                        to cover an extra room clean, and it’s                                                  Care Card scheme, with the promise
                                                                        best to phone first. The super website                                                  that if anything happens to you, they will
                                                               enables you to                                                        take care of your dog, endeavour to find
                                                                        search by area for pet friendly accommo-                                                a suitable new owner and, if that’s not
                                                                        dation across the UK, be it hotels, guest                                               possible, care for them for rest of their
                                                                        houses, self-catering, B&B or camping                                                   life. The scheme is free – you just have
                                                                        and caravan sites.                                                                      to sign up via the web or phone (see their
                                                                          Get to know your local kennels or cat-                                                contact details on p.19).
                                                                        tery, so when you go on holiday or need
                                                                        some respite, your pet can enjoy a lovely                                               Worried about your pet’s be-
                                                                        holiday too. And if your pampered             If you are admitted to hospital in an     haviour?
                                                                        pooch prefers to stay at home, there are    emergency and have a pet unattended at        As with humans, pets can become
                                                                        registered pet carers who can step in to    home, tell the nurse in the accident and    stressed or worried in new situations
                                                                        help.                                       emergency department or on the ward.        or when they detect a threat, and even

                                                               PSP Matters Summer 2010                                                                                        17
                 Focus on Care
your changing health or stress levels can    They can check for any medical causes          Local animal charities can help too.
have an impact. Most will settle down        and also recommend a reputable animal        For example, the Dog’s Trust have Train-
with reassurance, but if problems persist,   therapist if needed. (Check your pet         ing and Behaviour Advisors who are ex-
such as excessive chewing, bed wetting       insurance as you may be able to claim for    perts in understanding dogs’ emotional
or aggression, it’s wise to consult a vet.   consultations.)                              issues.

    Michael Shepherd’s wife, Shirley,
 died last year after a long battle with
 PSP. Michael has found the support
 of his dog, Rolly, invaluable over this
    “When you are in my situation I
 believe that you will find things easier
 if you have the support of family, a
 wider network of friends, and a pet! I
 have all of these in a big way. I have
 a caring and helpful family, I then
 have five church families, and my PSP
 family makes this up to six. So I have
 all these people caring for me. Then I
 have my Rolly, a wonderful dog, who           Michael Shepherd (centre) with Rolly and friends at Khyber Kennels
  arrived here eleven years ago.
    I feel that he came in preparation for all this, and to help me so much over the last three years. He gives me all the love,
  companionship, fellowship, care and cuddles that you could ever wish for. In the last few years, Rolly was often cared for by all
  my friends at Khyber Kennels in Pocklington. What a wonderful team they turned out to be; taking Rolly at any time, whether
  they were fully booked or not, when I needed to be running about with all Shirley’s problems. They love him and he loves
  them; so now, when we say, “Where’s Rolly?” Answer - he is at “aunty’s” for a few hours!”

Feedback please! Send us photos of your pets and ways they have been a support.

   In the past 15 years, scientists the      and have seen long-term changes in           ed in animals. They are also a stimulus
 world over have established beyond          attitudes and behaviour, with prisoners      for healthy exercise, keep us busy and
 doubt the therapeutic value of animal       often finding out for the first time what    make us feel safe.
 companions. Cambridge researchers           it’s like to give and receive affection.
 discovered that, within a month of tak-        For some people, animals can provide
 ing a cat or dog into their home, new       more consistent emotional support than
 owners reported a “highly significant”      humans. A study at Warwick University
 reduction in minor ailments. Other          found that people who are poor at con-
 studies have shown the benefit of pets      fiding in others, showing love or making
 in reducing blood pressure, cholesterol     friends were able to lavish affection on
 and improved recovery times. One            a pet. Dr. Yokoyama Akimitsu, head of
 Japanese study of people over 65 found      the psychiatric unit at Kyosai Tachikawa         With grateful thanks to Reader’s
 that pet owners made up to 30 per cent      Hospital in Tokyo, says pets can help us      Digest, Asian edition, August 2000, for
 fewer visits to doctors than those who      by making us feel less lonely, by creating     permission to reprint these extracts.
 had no pet. In Britain, some prisons        a feeling of being needed and by encour-
 now encourage inmates to keep pets          aging social contact with others interest-                 healingpets

 18                                                                          PSP Matters Summer 2010
                                                                             Focus on Care
 Handy contacts
 • - excellent website for pet friendly accommodation, holiday venues and care homes.
 •	 Association	of	Animal	Behaviouralists - Members hold clinics or can make home visits by appointment.
    They usually require recommendation via a vet.
 •	 Cats	Protection	League - offers assistance to cat owners and finds homes for stray cats. Helpline on 03000 12 12 12 or visit
 •	 Care Commission (Scotland) - Tel: 0845 603 0890 and Care Quality Commission (England) - or 03000 616161 (8.30am to 5.30pm, weekdays.). Conduct independent reviews and ratings for care homes
    and services.
 •	 Cinnamon	Trust - Tel: 01736 757 900. Charity supporting elderly and terminally ill people and their
    pets. Runs the Pet Friendly Care Homes Register, spearheads the maps4pets website and arranges re-homing via their animal
 •	 Crossroads	 Care	 - or 0845 450 0350 Charity providing short term breaks to carers in their own
 •	 Dog’s	Trust - Tel: 0207 837 0006. The UK’s largest dog welfare charity. A useful source of advice or
    support. They also run the Canine Care Card scheme.
 •	 Pets	as	Therapy - Tel: 01844 345 445. Provides therapeutic visits to hospitals, hospices, nursing and
    care homes, with temperament assessed/vaccinated ‘Pets As Therapy’ (PAT) Dogs and PAT Cats with registered volunteers.
 •	 National	Petsitters - or 0845 230 8544 The national association of registered pet-sitters, such as Pet Car-
    ers, Animal Aunts or Pet Pals for your pet boarding, walking or home visit needs. You can search their register for an annual
 •	 RSPCA - Advice line: 0300 1234 555 (9-5pm, weekdays). Leading animal welfare charity, focusing particu-
    larly on the prevention of cruelty. Offers advice on pet care, adoption, behaviour and insurance or to find a vet.
 •	 UK	Registry	of	Canine	Behaviourists - Professional body of canine behavioural therapists.
 •	 Wood	Green - Tel: 0844 248 8181 (10-4pm daily). Animal welfare charity, helping homeless animals
    find secure and loving homes, and providing advice, support and guidance for pet owners.

Getting to Grips with Gadgets
We often receive enquiries about assistive technology, or what to do with equipment that is
no longer needed. Whether it’s finding the right vehicle, home adaptations or communication
aids there’s a lot out there to help, but a few things to look out for along the way…

          lthough gadgets and technol-        sary channels, linking in with assessment    when seeking benefits or grants.
          ogy can help, it can be so disap-   by your local authority.
          pointing to find you’ve bought                                                   The PSP Association
something inappropriate, so we always         Plan ahead                                      The PSP web forum at www.pspeur.
recommend that you contact a relevant           Getting ‘into the system’ can take         org is a handy outlet to advertise used
health professional first.                    time, even months, so it’s worth think-      equipment or to share what has worked
  A speech and language therapist can         ing ahead about what you might need,         well for you. Your PSP support group
advise on dietary and communication           say, if symptoms develop further, rather     is another avenue for ideas (see p.27 for
aids, a physiotherapist on balance and        than trying to find something at the last    the latest list) and our area team can help
mobility, and an occupational therapist       minute.                                      signpost towards helpful local support
on adaptations and aids for daily living.       That’s why it also helps to have profes-   (see p.36 for contact details).
They may have equipment for loan or to        sionals involved at an early stage. Their       Thanks to the support of a Trust,
try, and can help you through the neces-      recommendation will usually be required      The PSP Association now stocks prism PSP Matters Summer 2010                                                                                           19
                  Focus on Care
glasses which can aid reading, watching           the general public and healthcare pro-     help’ have handy information and con-
television or eating, where up/down gaze          fessionals find out about daily living     tacts on how to go about this. Contact
is a problem. (Not suitable for use when          equipment and assistive technology. or phone
walking or going up or down stairs.) The          They don’t sell any products, but can      01327 322415 to obtain copies.
PSP nurse specialists and area develop-           help you find people that do.                ‘Independence	at	Home’ provides
ment team will also be happy to advise         •	 Just Mobility – you can buy or sell used   grants towards goods and services to im-
any professionals who are supporting              equipment such as adapted vehicles or      prove the independence, comfort, safety,
you.                                              mobility products on this site.            and quality of life for people who are
                                               •	 ABLE – the disability lifestyle magazine   managing long-term illness and disability
Other helpful charities and                       and website. Has both a second hand        at home. (Grants range between £150
outlets                                           goods and a wanted section. (Small         and £750, most being under £300.)
•	 Assist	 UK – coordinates a UK-wide             charge to advertise.)                        People with PSP or CBD in the UK
   network of local Disabled Living Cen-       •	 RNIB	and	RNID – for advice and aids        who have less than £10,000 in individual
   tres. Each centre has a supply of prod-        for all sight and hearing issues, with     (or £15,000 in joint) savings can apply to
   ucts and equipment and assistive tech-         online shops and opportunities to view     the Mali	Jenkins	Fund via Parkinson’s
   nology to view, so you can try them            and try out equipment via their region-    UK (formerly the Parkinson’s Disease
   and get information and advice from            al centres.                                Society) for grants for equipment, home
   professional staff about what might suit                                                  adaptations or respite breaks.
   best. Their website has a search facility   Financial Support                               The fund won’t cover ongoing costs
   to find your nearest centre.                  It is sometimes possible to find finan-     or items already paid for, and a letter of
•	 Disabled	 Living	 Foundation – pro-         cial support for equipment or home            recommendation from an appropriate
   vides advice, information and training      adaptations. Our information leaflets on      professional will be required.
   on daily living aids. The DLF helps         ‘Work benefits and finance’ and ‘Getting

 •	ABLE - Tel: 0141 419 0044 or write to Craven publishing, 15-39 Durham Street,
   Kinning Park, Glasgow G41 1BS.
 •	Assist-UK - Tel: 0161 238 8776 or
 •	Disabled	Living	Foundation - Helpline: 0845 130 9177 (charged at local rate) Email:
 •	Independence	at	Home - Tel: 020 8427 7929.
 •	Just	Mobility - Tel: 01923 265577.
 •	Parkinson’s	 UK - Free Helpline 0808 800 0303 (9-8pm weekdays, 10-2pm
 •	RNIB - Tel: 0303 123 9999.
 •	RNID - Tel: 0808 808 0123.
                Feedback please! Have you found particular equipment or suppliers that have
                              been particularly helpful and if so, in what way?

 20                                                                             PSP Matters Summer 2010
                                                                            Focus on Care

Updates from the Care Team
Debra Chand, Director of Care and Support, writes:-

                                              in the panel below (marked in bold).       Deborah Wheeler on 01327 322415 or
                                                Unless requested, we usually send        email
                                              out the general (starter) section to new     (Most leaflets are applicable world-
                                              subscribers, so that you can order other   wide, unless indicated, though contact
                                              leaflets as you need them – just contact   details will be UK-based.)

                                                             The Carers’ Information Pack
                                               General	(Starter)	Section
                                               1. About PSP and CBD – an overview of both conditions.
                                               2. Living with PSP or CBD – advice for anyone newly diagnosed.
  Debra Chand                                  3. Work, Benefits and Finance (UK only) – overview, with annexes on state (3a)

           t the time of writing, there are       and local authority benefits (3b) and other financial support (3c).
           930 people with PSP/CBD reg-        4. Caring for the Carers (UK only) – practical advice for carers.
           istered with The PSP Associa-       5. Getting About – guidance on mobility and transport issues.
tion. As these numbers grow, so will our       6. Getting	Help (UK only) – how to ‘get into the system’ for benefits and other
collective voice and influence.                   support, particularly continuing care.
  Since the last PSP Matters, we have re-      7. Holidays and Travel – if you are planning a holiday this year, this leaflet has
sponded to 2,500 calls from families and          handy information, tips and contacts, including information on insurance.
professionals, held 40 support groups,         Symptom Specific Section
20 teaching sessions and 9 clinics. Over       8. Movement and Mobility – tips for keeping mobile.
the last year we have reached some 6,000       9. Speech and Communication – advice on managing communication, with a
professionals with information, advice             handy Alphabet Board.
and events.                                    10. Swallowing, Eating and Drinking – advice on managing swallow, with an annex
  We have drafted a new handy Guide to             on Oral Health (10a).
PSP and CBD for GPs and Community              11. Behavioural Changes – advice on emotional and behavioural aspects.
Nurses, and are involved in developing         12. Sight – information on how sight may be affected and tips to manage this.
a Department of Health neuro guide             13. Bowel and Bladder – guidance on continence aspects.
to improve support from diagnosis to           14. Saliva Control – advice for anyone coping with too much or too little saliva.
end of life for people with neurological       15. Into Hospital – information for Ward Staff – including how to support patients
conditions. We have also had a grow-               when communication is limited.
ing number of requests for support with        16. Complementary Therapies – overview of therapies that can aid quality of life,
continuing care appeals, so hope the               including an annex giving more details and contact information (16a).
articles in this issue of PSP Matters prove    Later	in	Life	Section
helpful.                                       17. Legal	Issues (UK only) – updated to include contact details and information
Carers’ Information Pack                           sources for Lasting Power of Attorney and Advance Directives, with an Annex
update                                             covering wills and legacies to The PSP Association (17a).
  The Carers’ Information Pack contains        18. PEG feeding – the pros and cons of a Percutaneous Endoscopic Gastrostomy.
practical information on managing, or          19. Choosing a Care Home – things to think about when choosing a care home.
supporting someone with, PSP or CBD.           20. Brain Donation (UK only) – updated, with the new Sara Koe Research
All the leaflets are annually reviewed and         Centre phone line, for advice and information: 020 7679 4266.
key content or changes have been noted PSP Matters Summer 2010                                                                                        21
                  Focus on Care
John Chandler, Director of Advocacy and International, writes:-

                                              always argued about whether your care          have included the proportion of care
                                              needs are ‘Health’ (in which case the          packages in place within 28 days of an
                                              NHS pays) or ‘Personal’ (in which case         assessment, rising from 67% to 97%
                                              you or the Local Authority pays). It has       from 2006-9.
                                              been recognised that the main loser in            The old referral procedure (is down
                                              this argument is the patient, and I am         from) seven steps …to two. There
                                              pleased that steps are being taken to          is one assessment form and we talk
                                              resolve the problem.                           to each other so users don’t have to
                                                 Several solutions are being trialled,       repeat their story. We know the dif-
                                              from pooling parts of Local Authority          ferent aspects of that person’s care,
                                              and NHS budgets, to the formation of           there is continuity of care and quicker
  John Chandler
                                              separate Care Trusts who are the single        access to services.”
  We will have a new UK Government            point of contact for health and personal
by the time you read this, but I doubt        care. The following Care Trusts have             I would be most interested to hear
that we will have a clear view by then of     formed so far:                                from those of you who have transferred
any impact that the expected budget cuts      •	 North	East	Lincolnshire                    to personal budgets or have experience
might have on the health and social care      •	 Torbay                                     of a Care Trust, or perhaps you could
support that we need.                         •	 Blackburn	and	Darwen	                      write a letter to PSP Matters so that we
  However, a couple of areas do seem          •	 Northumberland                             could all share your experience. Please
to be supported by all political parties      •	 Solihull.                                  write to me at PSP House, or e-mail
and they will progress. Overall, I think         The Torbay Trust, supported by AGE
they are likely to benefit those families     Concern, said:                                   On a different note, we have at last
managing PSP and CBD:                                                                       persuaded the NHS to provide infor-
                                                  “We haven’t saved a lot of money,         mation about PSP and CBD on their
Personal Budgets                               but we have improved services. The           website, NHS Choices (see www.nhs.
   By next year, 30% of all eligible adults    CSCI rated adult social services             uk/Conditions/Pages/bodymap.
(that includes people with PSP and CBD)        at Torbay Council as “performing             aspx). GPs and therapists often use NHS
in England should receive a personal           poorly” in 2005, the year that the Care      Choices as a quick reference to condi-
budget from their Local Authority to           Trust was established. The rating            tions that they are not familiar with, so
arrange and pay for their own social care.     from the Care Quality Commission             we hope that it will help our efforts to
It is also intended to adopt the same          (CQC) is now “performing well.”              improve the information available to
model for those on NHS Continuing                 Five zones were set up, clustered         those who should be supporting you.
Care, but that is in its early stages. The     around GP practices with teams of:           The website also includes a link to The
personal budget system is being rolled         •	 Social	workers                            PSP Association website for those who
out after pilot projects showed that most      •	 Community	care	workers                    want to know more. It has been a long
people welcomed the flexibility to direct      •	 Mental	health	workers                     fight, but the NHS has now said that they
their own support needs, although there        •	 District	Nurses                           will also help us to fund a video for their
were concerns about the amount of bu-          •	 Physiotherapists                          site.
reaucracy and worry that was involved in       •	 Occupational	Therapists                      On the overseas front, we welcome
some projects. Hopefully, those lessons        •	 Senior	Therapists                         families to the Association from Italy,
have been learned.                             •	 Community	Matrons.		                      Spain and the USA. I should have more
                                                  Clients have a single point of entry      to say in the next edition of PSP Mat-
Joint Health and Social Care                   … (resulting) in no delayed hospital         ters, after our international meeting
Funding                                        discharges, while other improvements         of PSP Associations in London during
  Local Authorities and the NHS have                                                        September.

 22                                                                             PSP Matters Summer 2010
                                                                             Focus on Care
Area Updates from our Development Officers

                                                  Scotland now has a new Nurse special-       In May Katie and I will be travelling to
                                               ist for PSP and CBD, Katie Rigg. Many        Dumfries and Tayside to raise awareness
                                               of you will have already met Katie at our    with a series of teaching sessions. Our
                                               Edinburgh, Glasgow and Aberdeen sup-         aim is to have support groups in both of
                                               port groups.                                 these areas by the end of next year. For
                                                  Our event at the Scottish Parliament in   those of you in other areas where there
                                               March went well. Between Dr. Bak, PSP        are no support groups, I will endeavour
                                               volunteers and ex-carers we managed to       to make telephone contact.
                                               speak to a lot of MSPs and engage them
                                               in the issues surrounding PSP and CBD.       East Midlands
                                                  The Neurological Alliance of Scotland
   Madeleine Quine
                                               held an event at the Scottish Parliament
   We have registration in Scotland at         on 11 March. A specially produced DVD
last! Lots of you I know have been pa-         was shown, highlighting the impact of
tiently waiting for this news, so that you     neurological conditions, including PSP,
can officially fundraise for The PSP Asso-     on life. I would like to thank Mr and Mrs
ciation. It is a very exciting development     Rae for very kindly agreeing to be filmed
and will certainly help us raise the profile   for this DVD. It was encouraging to see
of both PSP and CBD.                           PSP being mentioned alongside other,
   Already, people have been raising           better known conditions.
money in a variety of creative ways. On           In April I attended the British Geri-
10 April on a hot and gloriously sunny         atric Society’s Spring Conference in
                                                                                               Maureen Fowler
day at Erskine I was thrilled to accept        Edinburgh and met people from all over
wonderfully generous cheques total-            the world, who took our information to         The last quarter has seen a variety of
ling £1,025 from Anthony Reid and his          support their PSP/CBD patients. I also       activity across the East Midlands starting
mother. The monies raised were for the         met a lot of consultants from Scotland       in January with the first meeting of the
Tribute Fund the family have set up in         who were keen to get an update on The        Leicestershire Support Group.
memory of Anthony’s father, Reginald.          PSP Association.                               Sadly, the inclement weather meant
                                                                                            that only the hardiest were able to get to
                                                                                            this meeting but it still made for a lively
                                                                                            session. The next meeting will be held,
                                                                                            hopefully in better weather, in May.
                                                                                              The Leicestershire LINk and the
                                                                                            Neurological Alliance are undertak-
                                                                                            ing some work together to look at how
                                                                                            people with neurological conditions can
                                                                                            access health and social care services and
                                                                                            what progress or future plans have been
                                                                                            made in respect of ensuring the National
                                                                                            Standards Framework (NSF) for Long
                                                                                            Term Neurological Conditions is being
Madeleine with Anthony Reid and members of the Nissan Primera owners club                     You will be updated about any events PSP Matters Summer 2010                                                                                            23
                   Focus on Care
or information arising from this work.            The event was a great success and as
  In March, information about PSP and           well as ourselves included presentations
CBD was available at a Disability Fayre         from those charities supporting people
at Withernsea, East Riding of Yorkshire         with Multiple Sclerosis, Motor Neurone
and contact was made with a variety of          Disease, Huntington’s Disease, Parkin-
people including physiotherapists at the        son’s Disease and Acquired Brain Injury.
local community hospital and a Council-           My third event for the year will be on
lor from the area with the portfolio for        May 6 in Ipswich, Suffolk, where I am
health and the voluntary sector.                co-hosting a joint event with two local
  The Nottingham Support Group meet-            hospices and the Motor Neurone Dis-
ing was very well attended with some            ease Association. During the day we will
                                                                                                 Lisa Goodridge
health professionals showing an interest        be looking at issues relating to end of life
in learning more about the illness by           and the day will include presentations           I mentioned in the last issue that I was
coming along to meet people.                    from key local healthcare professionals.       hoping to set up a new support group in
  Kat and Katie, the new PSP nurses,              Dates have now been set for all our          Kent and I am pleased to announce that
started their new roles with The PSP            support group meetings for 2010 and            we have booked two for this year. Please
Association by attending the Notting-           a new venue was used for our Norwich           look at the support group listings for
ham Support Group and we were all               meeting which was held on 31 March.            more information. I hope that we will
pleased to welcome them to the area and         The venue was the Cotman Centre at the         be able to reach more of you who aren’t
the organisation.                               Radiology Academy. The Centre boasted          currently able to get to meetings.
                                                free and ample parking and was easy to           I have also been busy running teach-
East	Anglia,	Beds	&	Herts                       locate as it stands on the same road as        ing sessions for health and social care
                                                the Norwich & Norfolk University Hos-          professionals and, together with Nurse
                                                pital. If you live in the area please try      Specialist Samantha Pavey, will be speak-
                                                to join us at the next meeting to be held      ing at an education event in Milton Key-
                                                there on 28 September as it really is a        nes later this month, with plans to run
                                                perfect venue for us and a great opportu-      a study day on the Kent / Sussex border
                                                nity for you to ask burning questions and      later in the year.
                                                meet other people who can relate to your
                                                concerns.                                      South West & Wales
                                                                                                 Winter is very much the season for
                                                South Central                                  staying indoors and we definitely had a
                                                   I continue to work in alliance with         winter this year!
                                                other neurological charities in the South        However, we managed to have six very
   Gina Rutterford
                                                Central and South East regions to cam-         worthwhile support group meetings and
   It’s been a busy start to the year in East   paign for better services for people with      we look forward to the next round over
Anglia. The year should have kicked off         Long Term Neurological Conditions.             the summer months.
with a professional’s awareness event on        New groups have become more estab-               The number of people diagnosed with
11 January in Lincolnshire. Unfortunate-        lished in Kent and Medway and Sussex,          PSP or CBD has continued to rise in the
ly, it had to be postponed due to heavy         and positive work is already being done.       Southwest this year, which hopefully
snow in the area. We are awaiting a new            In Hampshire the local Neurological         reflects an increasing level of awareness
date to be set for later this year.             Alliance is holding an event on 30 June at     within the medical profession.
   The second major event for the year          the Alton Maltings Centre.                       Both Jill Lyons and I have been giving
was in Kings Lynn, Norfolk on 11 Feb-              The theme is ‘Diagnosis and beyond’,        various teaching sessions to a wide range
ruary when 90 health and social care            and it is open to those affected with a        of health professionals and care homes
professionals attended our Joint Neuro          Long Term Condition and to health and          and have been encouraged by the inter-
Study Day.                                      social care staff.                             est shown.

 24                                                                               PSP Matters Summer 2010
                                                                            Focus on Care
                                              Health and Social Care Professionals,          We had a lot to say in contributing to
                                              Parkinson’s Disease Nurse Specialists,      the nuts and bolts of this strategy and
                                              and planning for the next quarter with a    hope that our needs are taken on board
                                              range of events, including a joint Neuro-   and will be evident as the strategy rolls
                                              logical Study Day with The Royal College    out in due course. Again, my thanks to
                                              of Nursing NI , Social Work Team events     our members who were able to attend, as
                                              and Physiotherapy Information Sessions      always giving their unequivocal support.
                                              on both sides of the border.                   The New University of Ulster invited
                                                This quarter has also seen us raise       me to meet with one of the researchers
                                              awareness of PSP in the corridors of        from the Mathematics and Comput-
                                              Stormont at the Rare Disease Day which      ing Department, Dr. Jane Xheng, with
   Kathy Miller-Hunt
                                              took place on 4th March. I am very          a view to taking forward existing visual
  In spite of obvious financial con-          grateful to our members who were able       technology to meet the specific needs of
straints, there is a willingness to develop   to attend and lend their support on the     people with PSP who experience visual
better Neurological services across           day. Many officials listened to our mem-    challenges. This research is in the early
the region, but we need to keep up the        bers who pursued them to great effect!      stages but could be very worthwhile
pressure!                                       Our Dublin Support Group meeting          if adaptations could be made to im-
                                              was preceded by a meeting with Minister     prove access to visual media. I hope to
Ireland                                       John Moloney TD, during which Maggie        meet with Dr. Xheng soon to take this
                                              Rose, John Chandler, George and Mark        forward.
                                              O’ Sullivan and I raised issues facing         I have had several meetings with the
                                              families in ROI living with PSP and CBD.    DHSSPS for N.Ireland. The Minister
                                              We are currently awaiting a written         for Health, Mr. Michael McGimpsey, is
                                              response from the Minister.                 acutely aware of our lobbying campaign
                                                At our Belfast Support Group meeting      and, current budgetary restrictions
                                              we welcomed two senior representatives      withstanding, has asked for our patience
                                              from the Department of Health, Social       in the provision of specialist services for
                                              Services and Public Safety (DHSSPS) NI      PSP. However, I firmly believe that the
                                              who came to learn more about PSP as we      needs of the people we represent are
                                              are involved in the consultation process    worthy of special dispensation and there-
                                              for the new Physical Disability strategy    fore it is imperative that we stay high on
   Sandra Campbell
                                              for Northern Ireland.                       the agenda at DHSSPSNI.
  The last quarter has seen the fruition
of the marked improvement in aware-
ness of PSP across Northern Ireland (NI)
and Ireland. Requests for teaching ses-
sions are coming in regularly from many
regions now and these sessions allow us
to bring better knowledge and under-
standing about PSP and the work of the
  I aim to respond as quickly as possible
to all requests and subsequently have
had a busy quarter teaching in Nursing
Homes, with Palliative Care Teams, in
Occupational Therapy and Physiother-          Alasdair McDonnell (MP and NI MLA) with PSP carer Fiona McLaughlin (left) and
apy Departments, liaising with many           Sandra Campbell at the Rare Disease Day, Stormont PSP Matters Summer 2010                                                                                          25
                 Focus on Care
   The next quarter is looking equally
busy with a variety of teaching sessions
and awareness raising events.
   Advocacy and support goes on as
always and please do leave me a message
if I am not available at the time to take
your call.
   My thanks go to all our subscribers
who have been very supportive of our
   This is always greatly appreciated.

Right: Sandra with PSP N. Ireland
subscribers at the Rare Disease Day

 Care Study
  Do you care for an adult with             low the usual carer to take a break     If you decide to take part you
a long term neurological condi-             away from caring for rest and         will be asked to complete a postal
tion? Would you like to influence           relaxation. However, nowadays         questionnaire or, if you prefer,
the development of services that            it is recognised that many people     you can complete the question-
enable carers to participate in             who take on a caring role would       naire online. Most questions
activities of their own choosing?           like to be able to participate in a   involve ticking a box, circling a
  Researchers at King’s College             range of other activities over and    number or writing a short sen-
London have been commissioned               above taking a break for rest and     tence. The questionnaire should
by the Department of Health to              relaxation.                           take no longer than an hour to
carry out a study across the UK               These could include paid em-        complete.
which aims to find out whether              ployment, further education or          The study is open until the end
people who care for adults with             training, voluntary work, spend-      of July 2010. To take part, or for
long term neurological condi-               ing time with other people, sport     further information, please con-
tions can get the respite/replace-          or exercise.                          tact David Williams on
ment care services they need                  The term ‘replacement care’ is      0207 848 5418,
in order to have more freedom               increasingly being used to refer to   email
outside their caring role.                  any type of service that takes over   or write to:
  They also want to know about              from the main person who usually        Freepost	RRLJ-JXEA-HYAS,	
people’s past experiences of this           provides care for any reason in       LTNC	Care	Study,	Palliative	
type of care and what, in their             the short or longer term.             Care,	Policy	and	Rehabilita-
view, a ‘five star’ service would be          The researchers would like          tion,	Weston	Education	Centre,	
like.                                       to hear from carers who spend         Cutcombe	Road,	
  For many years the term ‘respite          several hours a day caring for an     London.	SE5	9RJ.
care’ has been used to describe             adult with a long term neuro-
services that temporarily assume            logical condition, such as PSP or
responsibility for someone to al-           CBD.

 26                                                                  PSP Matters Summer 2010
                                                                           Focus on Care
Local Support Groups
Below are the dates of our next round of local support group meetings.
  If you are a subscriber we will send details of the support groups in your area several weeks before they are due. You are wel-
come to attend any other venues too, but it would be wise to check with the area Development Officer first in case there has been
any date, time or venue change (see p.36 for the relevant contact details).

       Group                                               Held                                       Date & Time
         Yorkshire                            Barnsley Hospice, Gawber, Barnsley                          Tue 1 June, 10.30

        South West                            Lucerne House Care Centre, Exeter                          Thur 10 June, 11.00

        South West                      Ty George Thomas Hospice, Whitchurch, Cardiff                    Tue 22 June, 11.00

        South West                         Sue Woolnough’s Home, Henbury, Bristol                        Thur 24 June, 13.30

        South West                              Joseph Weld House, Dorchester                             Thur 1 July, 11.00

         Yorkshire                              Burnby Hall Rooms, Pocklington                             Fri 2 July, 10.00

        Beds/Herts                      Garden House Hospice, Letchworth Garden City                     Mon 12 July, 11.30

        South East                             Ford Manor Road, Lingfield, Surrey                        Mon 12 July, 10.30

          Solent                                    Social Hall, Bedhampton                               Tue 13 July, 10.30

        Merseyside                            The Neuro Support Centre, Liverpool                        Wed 14 July, 11.00

      West Midlands                             The Hamar Centre, Shrewsbury                             Thur 15 July, 10.30

        South West                         Leckhampton Court Hospice, Cheltenham                         Thur 15 July, 11.00

        North East                         The Boardroom, Newcastle Royal Infirmary                      Wed 28 July, 10.30

        South West                                   Echo Centre, Liskeard                                Mon 9 Aug, 11.30

         Northants                                   PSP House, Towcester                                Thur 23 Sept, 11.00

        East Anglia                              Radiology Academy, Norwich                              Tue 28 Sept, 11.00

          London                       The National Hospital for Neurology, Queen Square                  Mon 4 Oct, 11.00

          Ireland                        Mater Misericordiae University Hospital, Dublin                   Tue 5 Oct, 14.00

          Ireland                                 Marie Curie Hospice, Belfast                            Wed 6 Oct, 14.00

        Merseyside                            The Neuro Support Centre, Liverpool                         Wed 27 Oct, 11.00

       East Midlands                            The Hamar Centre, Shrewsbury                              Thur 28 Oct, 11.00

        Beds/Herts                      Garden House Hospice, Letchworth Garden City                      Wed 3 Nov, 11.00

        South East                             Ford Manor Road, Lingfield, Surrey                         Thur 4 Nov, 10.30

        East Anglia                         Sue Ryder Care, Hadleigh Road, Ipswich                        Tue 16 Nov, 11.00 PSP Matters Summer 2010                                                                                         27
                       Notice Board

Notice Board
     Caring with Confidence
  If you would value some extra support and guidance about caring, a free government programme
could help.
  If you are a carer aged 18 or over, Caring with Confidence* is a free course designed to support you.
The course is designed give you the opportunity to share experiences and learn from others in similar
situations, give you useful information, ideas and tips about looking after someone and explore what you
might change about your caring role. You will not be marked or tested in any way. The aim is to help
expand your caring experience, skills and knowledge to reduce stress and improve your own health and
wellbeing and that of the person you care for.
  The programme runs in three main ways:
•	Local	group	sessions	-	through	a	network	of	carers’	centres,	local	authorities,	primary	care	trusts	and	
  charities. Led by skilled facilitators, the sessions have up to 16 carers and last for three hours, including
  time for breaks. Contact your nearest provider for times, dates and venues.
•	Online	groups	-	If	you	don’t	have	time	to	spend	away	from	home	but	do	have	access	to	the	internet	you	
  can do the sessions for free online They are interactive and arranged in bite size chunks so it’s easy to dip
  in and out.
•	Self	study	-	You	may	prefer	to	study	at	home	in	your	own	time.		Easy-to-follow	workbooks	have	been	
  designed with the National Extension College and you can also have the support of a private online site
  and mentor.
  For your nearest group session, go to to use the county search facility,
or call their information line on 0800 849 2349.
  For online groups, see or call 0800 849 2349 (9-5pm,
  For self-study enquiries see or call: 01223 400 393.
     *Currently only available in England.

                  Can’t get out?
  If you are unable to get out because
you are caring for someone, Crossroads
Care can help by providing short breaks
       or a sitting service at home.
  See or call                                   Not online yet?
  0845 450 0350. Local hospices also
  have respite care facilities, and your
                                                                      Get connected
                                                          If you don’t have access to the internet at home, your local
 local branch of Age UK often run day                      library or nearest UK Online Centre may be able to help.
 care facilities: call 0800 169 2939 for                   To find your nearest centre, call the customer helpline on
                                                                                 0800 771234.
           further information.

28                                                              PSP Matters Summer 2010
                                                            Awareness & Fundraising

Awareness & Fundraising
The PSP Association relies entirely on voluntary donations to fund the work we do, and
Tribute Funds and Legacies are vital in our quest to raise the necessary income to meet the
costs involved. Tribute Funds create a positive and lasting memorial in the name of a loved
one, whilst leaving a legacy can make a real difference to our work now and in the future.

          ribute Funds are a very special      Like many others, Corinne Walker
          way to remember and celebrate      from Norfolk, together with her father
          the life of a loved one, whilst    and brother decided to set up a Tribute
also supporting The PSP Association’s        Fund in honour of her mother, Pauline:
patient care and research.
   A Tribute Fund is a permanent and           “The Tribute Fund set up in mem-
growing tribute, in your loved one’s         ory of my dear mother is the perfect
name, that will have a lasting effect for    way for my family and I to donate
many years to come.
                                             all monies raised to The PSP Asso-
   Every contribution made to a loved
one’s fund will help us to improve the       ciation, knowing that mum would
care and support we offer to people liv-     have wished for us to do this whilst
ing with PSP and CBD today. It will also     always being able to remember her            Pauline Walker
help fund vital research projects into the   closely in our thoughts.
causes and treatment of PSP and CBD,
                                               Mum would be very proud of the                   If you would like to set up a
which may ultimately lead to the cure for
these diseases we are all hoping for.        fact that a Tribute Fund exists in           Tribute Fund in memory of a family
   A Tribute Fund can be set up in the       her name and all money donated               member or friend please contact Lis
name of your loved one and contribu-         is going to the great cause of finding         Nunn on 01327 322419 or email
tions to the fund can be made in a range
                                             a cure and helping others with this
of different ways. Family, friends and                                                  
colleagues can mark special occasions
                                             dreadful illness.
such as birthdays and anniversaries or
raise money through sponsored events,        Leave a Legacy to The PSP Association
for example.                                    Many charities rely upon the kindness     Anything you would like to leave us will
   We have partnered with ‘MuchLoved’,       of their supporters who leave a legacy       help us to continue our work.
a web based charity who host online          to them in their will. Leaving a legacy         There are many forms and types of
tribute pages where family and friends       is one way to contribute to the ongoing      legacy. Some people leave a cash gift,
can leave personal messages, and where       work of The PSP Association.                 others prefer to leave a bequest of prop-
you can also add pictures to the page you       As the only national charity solely de-   erty, stocks, shares or other valuables.
set up. You, your family members and         voted to funding research into PSP and       The most popular types of legacy are
friends can then contribute to the fund      CBD and to providing care and support        oulined in the table overleaf.
by sending in donations or monies raised     to sufferers and their families, we, more       Leaving a legacy to The PSP Associa-
from other fundraising activities.           than any, know we still have so much         tion in your will is straightforward, and
   Setting up an online Tribute Fund is      more to do.                                  is exempt from inheritance tax.
simple. Just visit the MuchLoved website        Some people think that making a lega-        If you have a solicitor they should be
at            cy is something only very rich people do,    able to provide you with information on
and follow the instructions on screen.       but we receive bequests of all amounts.      how to do this. PSP Matters Summer 2010                                                                                          29
  Awareness & Fundraising
                                              enables The PSP Association to be able         Contingent gift: A gift that
                                              to better plan for the future.               has certain conditions attached.
                                                                                             Reversionary	legacy: A gift of
                                               Popular types of legacy
                                                                                           property subject to a prior inter-
                                                 Residuary	legacy: Usually
                                                                                           est. For example, a house that is
                                               shown as a percentage of what is
                                                                                           left to someone to enjoy in their
                                               left over after all of your wishes
                                                                                           lifetime but when they die it is
                                               have been carried out and debts
                                                                                           passed on to the charity.
                                               cleared. This type of legacy rises
                                               with inflation and is the best way
                                               to leave a gift for a charity.
                                                                                            To discuss any aspect of leaving
                                                 Pecuniary legacy: A specified
  To	make	or	amend	a	will,	we	recom-                                                        a legacy to The PSP Association,
mend you contact your solicitor or a           amount of money.
will writing service.                            Specific legacy: A gift that                  please contact Lis Nunn in
  If possible we like to know if someone       can be in almost any form, e.g. a            confidence on 01327 322419 or
has decided to remember our charity
                                               house, land, jewellery, paintings,             email
in their will, as it creates a special bond
                                               a car, etc.
between the person and the charity and

National PSP Awareness Week
                                                                         hank you to everyone who took park in our Awareness
                                                                         Week activities. The response was fantastic and by all ac-
                                                                         counts everyone had a wonderful time!
                                                                  From Black Tie ‘Tea at the Ritz’ and Teddy Bear’s Tea Parties in
                                                               the Office, to parties held at home and at children’s playgroups,
                                                                in libraries and in Nursing Homes, everyone has been having tea
                                                                across the country for PSP!
                                                                   As well as raising much needed funds for PSP, these parties
                                                                 have also helped raise awareness of the disease across the na-
                                                                 tion. With several radio interviews taking place in locations

 30                                                                           PSP Matters Summer 2010
                                                           Awareness & Fundraising
from North Berwick to Lan-
caster and many articles being
published in local newspapers,
we believe that hundreds more
members of the public across
the nation are now aware of
PSP and the effect the condition
has on a family.

We are extending our Tea Party dates to
continue throughout the summer, so if
you would like to hold a Tea Party in your
garden then just pick a sunny weekend
and let us know!
  You could organise a family barbeque and invite all the neigh-
bours to make them aware of the condition; you could arrange a
picnic in your local park, or a pub crawl around your town!
  There are ways for everyone to get involved this summer, so if
you would like to support us this way then call the Fundraising
Team on 01327 322419 or email
  Similarly, raising awareness does not have to end with
Awareness Week - if you would like to continue raising the
profile of The PSP Association then we would be delighted
to put you in touch with your local newspapers and radio
stations, and give you all the
guidance you need to get your
message out there! PSP Matters Summer 2010                                           31
  Awareness & Fundraising

Virgin London Marathon
Taking over from long-time sponsors Flora, Virgin painted the town red at the end of April
for the re-branded Virgin London Marathon. As the new sponsors, Virgin Money’s target is
to help runners raise more than £250 million for charities over its five-year term.
  The 30th London Marathon saw Virgin
boss Richard Branson dressed as a red
butterfly, running alongside his ‘Team
Caterpillar’ as part of a 35,000+ strong
band of competitors, including the PSP
team of 98 runners, several of whom had
taken part in the Silverstone Half Mara-
thon back in March, an ideal ‘warm up’
race in preparation for the full marathon
  Twenty seven PSP runners, with family
members, attended a pasta meal at Spa-
ghetti House, Victoria the night before
the big day which was predicted to be
the warmest day of the year so far.
  It was a fabulous day – the event saw a     PSP runners at this year’s Silverstone Half Marathon
record number of finishers and the PSP
runners well deserved the medal they          you know) are thinking of taking part.
received. It was really good to see a lot     Also, if you’d like to be involved as a
of our runners as they passed the cheer-      volunteer flag waver, he’d love to hear
ing points en route, at the finishing area    from you – you get a free supporters
and at our post race reception held, once     T-shirt, hand flags, balloons and banner.
again, at the ABPI Offices just off Trafal-   In return we simply need you to make as
gar Square, courtesy of Mike Baker.           much noise as you can in support of our
  We would like to thank all those that       runners!
took part, especially our runners, but          And from our runners:
also our staff and volunteers for manning
the cheering points, and helping with the       I just wanted to say ‘thank you’ - I
catering. Also, thanks go to physiothera-     had such a good day. I met a lot of
pists Clive Goodyear and Julia Bergs for      PSP runners and saw a few of our               The recovery is going well - I couldn’t
providing a much needed massage to            supporters in the crowd aswell on           walk very well on Monday, but had
weary legs, and to Clive’s wife, Sharon,      the way, which was fun.                     a massage and that helped loads.
for keeping everyone in check!                  Henry                                     Can’t believe it is all over, it was such
  We are extremely grateful to all our                                                    a remarkable day, and a four month
runners and our flag wavers for selecting         “Thanks for the post race ‘do’!         journey in general.
The PSP Association as their charity for
                                                Nice to meet some of the team                I have just added an offline donation
2010.                                                                                     so I’m just over £1,600 now! There are
  The list for 2011 is already open; please     and get a ‘rub down’!!!!
                                                                                          still a few more to chase up…
do contact or               Dave                                       Maddy
call 01327 322419 if you (or someone

 32                                                                           PSP Matters Summer 2010
                                                                 Awareness & Fundraising
                                                                                                               worthwhile. Running in the
                                                                                made the months of training
                                               “It was an amazing day that
                                                                                                                           friends in the crowd.
                                                                                          ched Tower Bridge and spotted
                                            snow was a   distant memory as I approa
                                                                                                             had the harder time, dealing
                                                                             porters following the runners
                                            In some ways I think the sup
                                                                                                                            y beat their runner
                                                                                           tubes in order to make sure the
                                            with crowd   s, getting on and off DLR and
                                                                                                              someone calls your name and
                                                                              really gives you a boost when
                                             to the next cheering point. It
                                                                                                                       and the volunteers who
                                                                                          nds who followed me round
                                             urges you  on, so I’d like to thank my frie
                                                                                                                                       left with
                                                                                                        e it without them. I’ve been
                                             manned the PSP cheerin      g points. I couldn’t have don
                                                                                                                huge blisters!”
                                                                              singly few aches and pains, but
                                              some great memories, surpri

                                                    “I would like to thank you for your
                                                     support during last Sunday and
                                                   also at the reception. I had a great
                                                     massage to recover a bit, but the
                                                   marathon went well, no pain at all
                                                  and below 4 hours as was my target.
                                                  I will give a final push to fundraising
                                                 this week, so hopefully I can get closer              “It was great to m
                                                                                                                          eet Alan and the
                                                                 to £2,000.
                                                                          ”                            team yesterday. I
                                                                                                                          am now back in
                                                                                                       Dubai, very tired
                                                                            Ignacio                                      and tr ying to get
                                                                                                             through a days wo

      “It was an honour to have run for             “A friend suggested running the marathon last year for a good cause. My father-
   PSP. Thank you to the Team at PSP              in-law passed away from PSP and I couldn’t think of a better cause than a less well-
  as the support from you all during the          known illness/charity. The training over 15 miles was very painful, but all I can say
  marathon and training was amazing,
                                                  is it’s one of the best feelings of achievement you can have going over the finishing
  and the massage was so well needed…
                                                  line. It’s also nice having your family say how proud they are and what a fantastic
               so thank you.
                                Lucy                                                              ”
                                                  Dad I am. I recommend everyone who can to do it..
    “I chose to run the Lond
                               on Marathon to support
                                                          a friend of mine who wa
  PSP. Two weeks prior to                                                          s suffering from
                             running, he unfortunate
                                                       ly passed away but all thr
  ness and after his death                                                        oughout his ill-
                            The PSP Association pro
                                                       vided an invaluable sup
 him and his family, and                                                        port network for
                            I wanted to give someth
                                                      ing back in order that it
 good work that it provid                                                       may continue the
                           es for both the sufferers
                                                     and those families affect
   I’m hoping that the mone                                                    ed by PSP.
                               y raised will go towards
                                                         research to finding a pre
even, dare I say, a cure for                                                       vention or
                              PSP in the future. The Lo
                                                         ndon Marathon proved
ling experience, however                                                           to be a gruel-
                           I managed to complete
                                                     the 26 long miles and col
memory of lovely Georg                                                         lect my medal in
  Alison PSP Matters Summer 2010                                                                                                    33
    Awareness & Fundraising

UK 3 Peaks Challenge                                                   Women’s 5 km Challenge
                                                  summer                When: 5 September 201
 When: Choose from 6 dates over the
                                                                        Registration Fee: £10
 Registration Fee: £75
                                                                        Sponsorship Pledge: £100
 Sponsorship Target: £500                                                                                           I We already have
                                         3 Countries, 3 Moun-
  Join us for the ultimate UK Challenge:                                                                         lots of lovely ladies
                                      ? There’s only one way
tains, 24hours. Are you tough enough                                                                             signed up for the
to find out!                                                                                                     Women’s 5km Chal-
                                           peaks in the UK;
   We will be climbing the three highest                                                                          lenge, the biggest
                                       before heading south to
starting with Ben Nevis in Scotland,                                                                              Women’s Fun Run
                                       finishing with Snowdon
Scafell Pike in the Lake District then                                                                            in the country! You
                                        a physically demand-
 in Wales….and all in one day! This is                                                                             can walk, run or jog
                                        t to put your body to
 ing challenge but if you feel you wan                                                                             your way around
                                       camaraderie, magnificent
 the test then join us for some great                                   the route, raising valuable funds for
                                                                                                              PSP whilst getting fit
                                           ent along the way!
  views and a fantastic sense of achievem                               and healthy in the process! If you wou
                                                                                                                ld like to take place
                                             For more informa-                                                      we also have places
                                             tion please contact        in a 5km race but live in the North, then
                                                                                                               5km on 6 June, and the
                                             the Fundraising Team       for the Edinburgh ‘Run for Scotland’
                                                                                                               September (Superhero
                                             on 01327 322419             Manchester 5K Superhero run on 26
                                             or email events@            Suit included!).
                                                                                                                   draising Team on
                                                       For more information contact the Fun
                                                                         01327 322419 or email events@psp

 Royal Parks Half Marathon                                              Cycle Coast to Coast
                                                                           When: Anytime you choose!
    When: 10 October 2010                                                                                            the North of England
                                                                            The Coast to Coast cycle route across
    Registration fee: £30                                                offers a fantastic weekend away as you
                                                                                                                     cross the width of the
    Sponsorship pledge: £360                                             country from shore to shore. You can
                                                                                                                   cycle the route on your
                                           live bands and enter-                                                 r pace, or if you would
     With a fantastic festival atmosphere,                               own, planning your stops to suit you
                                             a great race in beauti-                                              you then there are many
  tainment for spectators, this is not only                              rather have the details organised for
                                        day out for all the family!                                               your needs.
  ful surroundings but is also a lovely                                  local tour groups willing to cater for
                                            ts beautifully, taking                                                  s, simply contact the
  The route itself shows off London’s sigh                                   To register for one of these bike ride
                                         ham Palace, Wellington                                                   or email events@
  in the Houses of Parliament, Bucking                                    Fundraising Team on 01327 322419
                                         through St James’ Park,
   Arch and the London Eye as you run                           
                                           Gardens.                                                                     part in a sponsored
   Green Park, Hyde Park and Kensington                                      Alternatively, if you would like to take
                                               ndation which aims                                                    us know and we will
      The event is run by the Royal Parks Fou                             bike ride nearer to home, then just let
   to conserve and enhance London’s gree
                                            n spaces, as well as                                                   e your day an enjoyable
                                                                          send you everything you need to mak
                                            ng community partner-
   protecting wildlife and developing stro                                 success!
                                            of the most sustainable
   ships; so ensuring that this will be one
    and environmentally friendly races arou
       We have a limited
    number of guaranteed
    places in the Royal Parks
    Half Marathon, so if you
     would like to join the race
     then contact the Fund-
     raising Team on 01327
     322419 or email

  34                                                                               PSP Matters Summer 2010
                                                            Awareness & Fundraising

Supporters’ Fundraising
Hatfield and Broad Oak 10K                                                               and good memories. With much local
                                                                                         publicity, the evening was attended by
                                             our race we have found that family and      over 200 guests, including local PSP
                                             friends now have a better understanding     Association subscribers Lucy and Amy
                                             of what my parents are going through.”      Dane, who gave a speech on how PSP
                                                At first, the pair aimed to raise £511   has affected their family.
                                             to fund the average cost of one Sup-           For more information on the event
                                             port Group meeting, but were surprised      visit
                                             and delighted by the generosity of their
                                             friends when their fundraising exceeded     Keswick to Barrow Walk
                                             £2,000!                                       Sharon Dade and Graham Grose from
                                                If you would like to find out about      IFS Defence presented a cheque for
                                             local races near you visit the Runner’s     £1,800 to Jane Hardy and Alan Berry
                                             World website and select the events tab     after completing the Keswick to Barrow
Joshua and Alison Maynard                    at, or email         walk last June. Graham’s mother-in-
                                                              law, Pat Palmer, died from PSP and his
   When Alison Maynard’s father Alan                                                     father-in-law was Denis Palmer, one of
was diagnosed with CBD last June, Ali-       Top of the Pops!                            The PSP Association’s founder trustees.
son decided she would do all she could         When old friends from Dagenham
to raise money to fight back against the     County High School decided to reunite
disease. Along with 16 year old son          after 40 years, The PSP Association was
Joshua, Alison has taken on the chal-        delighted to be chosen as the benefici-
lenge of a 10km race near their home in      ary of their fundraising. Reforming their
Herefordshire...                             High School band, ‘The Mynx’, the group
   “We wanted to do something tangible       put on a musical extravaganza in aid of
to raise some money and awareness of         PSP, raising over £1,230!
CBD, particularly within our circle of
friends and family. Joshua and I decided
that a charity run would be just the
thing, although neither of us has run any                                                Limerick 10K
distance before so it was going to be a                                                    Sinead Power, Mairead Barry, Shirley
challenge!                                                                               Ryan and Rita Sweeney all successfully
   We emailed out to lots of friends using                                               completed the Limerick 10K on 2 May in
the JustGiving website to collect dona-                                                  honour of Shirley’s mother-in-law Nell.
tions, and once funds started coming in
we realised we had better get training.
   We started running a month ago and
now have four weeks to go, fitting train-
ing in twice a week between work and         The Mynx as they were in the 1960s
Joshua’s revision for his GCSEs. I no
longer collapse in a heap when we get          Former band members flew in from
back so we are obviously improving!          destinations as far flung as Sydney and
   My mother Arlene is now my father’s       Jamaica to come together for a fantasti-
main carer and by telling everyone about     cally vibrant evening of music, dancing PSP Matters Summer 2010                                                                                       35
                      Contact Details
The PSP Association
PSP House, 167 Watling Street West, Towcester, Northamptonshire NN12 6BX
          Main Telephone                                                                                                   01327 322410
          Facsimile                                                                                                        01327 322412
          Website and Discussion Forum                                                                                                                     

Executives & Administrators:
          Jane Hardy – Chief Executive                                                                                     01327 322410              
          Gerald Kirby – Deputy CEO and Financial Controller                                                               01327 322417             
          Debbie Benadie – PA to CEO                                                                                       01327 322410          
          Rebecca Benney – Information Manager                                                                             01327 322416         

          Dr. Angela Wilson – Director of Medical Awareness and Research                                                   01327 322413           

          John Chandler – Director of Advocacy and International                                                           01480 462053           
          Debra Chand – Director of Care and Support                                                                       01327 322414             
          Deborah Wheeler – Care and Support Manager                                                                       01327 322415        
          Lorraine Bowers – Care and Support Administrator                                                                 01327 322415         

Nurse Specialists:
          Katie Rigg – Nurse for Northeast England and Scotland                                                            01434 382564              
          Kat Haines – Nurse for Northwest England, N. Wales and Ireland                                                   01995 601533             
          Jill Lyons – Nurse for Southwest England and S. Wales                                                            01934 842366               
          Samantha Pavey – Nurse for Southeast England                                                                     01747 841461        

Development Officers:
          Gina Rutterford – East Anglia, Beds and Herts                                                                    07587 130637          
          Maureen Fowler – East Midlands                                                                                   01455 848666         
          Lisa Goodridge – South Central                                                                                   01582 731703           
          Kathy Miller-Hunt – South West                                                                                   01935 851609       
          Madeleine Quine – Scotland                                                                                       01768 898889        
          Sandra Campbell – Northern Ireland                                                                               02871 358499        

          Cameron Wood – Director of Development                                                                           01327 322418          
          Bernard Petticrew – Trust Officer                                                                                01327 322418       
          Alan Berry – Events Manager                                                                                      01327 322419              
          Helen Porter – Community Fundraiser                                                                              01327 322419            
          Lis Nunn – Fundraising Administrator and Support                                                                 01327 322419                

                                 The PSP Association is a Company Limited by Guarantee. Registered Number: – 2920581.
                                      Registered Charity numbers: England and Wales 1037087 / Scotland SC041199
                                   Registered Office: – PSP House, 167 Watling Street, Towcester, Northants NN12 6BX.

Disclaimer: The PSP Association does not endorse or recommend any of the products or services mentioned or advertised. The material in PSP Matters must not be reproduced in any form
  without prior written permission from the Editor. The opinions expressed are not necessarily a reflection of the views or polices of The PSP Association. The PSP Association reserves the
          right to edit content received and while all reasonable efforts have been made to ensure the accuracy of content, no responsibility can be taken for any error or omission.

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 36                                                                                                                          PSP Matters Summer 2010
     A Legacy gives hope for the future
   Leaving a gi to The PSP Association in your will ensures that we can
 continue to oer essential support and advice to many thousands of people.

       It will also allow us to inve more money in the vital research
               that will one day find a cure for PSP and CBD.

            A legacy to The PSP Association will also help us
             plan for the future and is free of inheritance tax.

A gift in your will can make a real and lasting difference

          For more information on leaving a will to The PSP Association
              please call 01327 322419 or email:
                         I would like to join The PSP Association
Please complete the information below. Depending on the information you provide, we may contact
you for further details, for example, if you, a family member or someone you are caring for, or working
with, has PSP or CBD. These details will enable us to offer you more effective support.

 About You (Mailing Details)                                  More about you (Please tick as appropriate)
 Surname……………………………….....................……                   I have PSP❏
 First names (in full)…………………..................……….           I have CBD ❏
 …………………………………………….....................…                      I am caring for someone with PSP   ❏ or CBD ❏
 Title (Mr, Mrs, Ms, Miss, Dr, Rev, other) ….........………      I am a relative of someone with PSP ❏ CBD ❏
 Address ………………………………….........................               I have a friend with PSP ❏ CBD ❏
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 …………………………………………........................…                    I have a client with PSP ❏ CBD ❏
 ………………POSTCODE……..................…..…………                    I wish to become a PSP Friend ❏
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 Email ……………………….....................……………….                  ......................................................................................

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 Please tick the appropriate annual subscription rate:

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 I authorise you to debit my Visa/MasterCard/Switch(Maestro) for the sum of: £.………...
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                                       amount that we can reclaim from HMRC.

                    Please send payment with this completed application form to:
              The PSP Association, PSP House, 167 Watling Street West, Towcester, Northants NN12 6BX
                     Tel: 01327 322 410   Email:     Website:

                                          Working for a world free of PSP
                                                   The PSP Association
                       Registered Charity numbers: England and Wales 1037087 / Scotland SC041199

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