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
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: email@example.com
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
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,
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
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
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 www.pspeur.org. 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
pspeur.org or call 01327 322415. her to contact you by telephone. their new areas in more detail.
2 www.pspeur.org PSP Matters Summer 2010
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 firstname.lastname@example.org 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.
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.
www.pspeur.org 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 www.pspeur.org 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
Jan Close, Walsall
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
Barry and Anne Linnington, Bright
www.pspeur.org 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 www.pspeur.org 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 www.pspeur.org
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 www.noscira.com
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
www.pspeur.org 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 www.pspeur.org 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
www.pspeur.org 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 www.pspeur.org 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 email@example.com 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’
www.pspeur.org 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 www.pspeur.org 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,
sociation and I found it amazing Belfast, Omagh, Dublin
how much organisation is nec- and Limerick support
essary. Everyone involved is so
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
www.pspeur.org PSP Matters Summer 2010 13
Focus on Care
Finding Your Way to Continuing
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
www.nhs.uk , 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 www.dh.gov.uk). 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 www.pspeur.org 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 (www.pals.nhs.uk) 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 Janine.Alexander@collyerbristow.com
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.
www.pspeur.org 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-
dh.gov.uk (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 firstname.lastname@example.org or 01327 322415
The MDT will recommend to the Primary Care Trust/ and we will forward your enquiry.
16 www.pspeur.org 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 maps4pets.com 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 www.dailypets.co.uk
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
www.maps4pets.com 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
www.pspeur.org 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- www.drmartinwilliams.com/
now encourage inmates to keep pets aging social contact with others interest- healingpets
18 www.pspeur.org PSP Matters Summer 2010
Focus on Care
• www.maps4pets.com - excellent website for pet friendly accommodation, holiday venues and care homes.
• Association of Animal Behaviouralists - www.apbc.org.uk 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) - www.carecommission.com Tel: 0845 603 0890 and Care Quality Commission (England) -
www.cqc.org.uk or 03000 616161 (8.30am to 5.30pm, weekdays.). Conduct independent reviews and ratings for care homes
• Cinnamon Trust - www.cinnamon.org.uk 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 - www.crossroads.org.uk or 0845 450 0350 Charity providing short term breaks to carers in their own
• Dog’s Trust - www.dogstrust.org.uk 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 - www.petsastherapy.org 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 - www.dogsit.com 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 - www.rspca.org.uk 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 - www.ukrcb.org Professional body of canine behavioural therapists.
• Wood Green - www.woodgreen.org.uk 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
www.pspeur.org 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. email@example.com 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 - www.ablemagazine.co.uk 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 www.assist-uk.org
• Disabled Living Foundation - Helpline: 0845 130 9177 (charged at local rate) Email: firstname.lastname@example.org
• Independence at Home - www.independenceathome.org.uk Tel: 020 8427 7929.
• Just Mobility - www.justmobility.co.uk Tel: 01923 265577.
• Parkinson’s UK - www.parkinsons.org.uk Free Helpline 0808 800 0303 (9-8pm weekdays, 10-2pm
• RNIB - www.rnib.org.uk Tel: 0303 123 9999.
• RNID - www.rnid.org.uk 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 www.pspeur.org 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 email@example.com
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
www.pspeur.org 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
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 firstname.lastname@example.org
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 www.pspeur.org 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
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
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
www.pspeur.org 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
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
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 www.pspeur.org 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
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
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
www.pspeur.org 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
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
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 email@example.com
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 www.pspeur.org 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
www.pspeur.org PSP Matters Summer 2010 27
Caring with Confidence
If you would value some extra support and guidance about caring, a free government programme
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
For your nearest group session, go to www.caringwithconfidence.net to use the county search facility,
or call their information line on 0800 849 2349.
For online groups, see www.caringwithconfidenceonline.net or call 0800 849 2349 (9-5pm,
For self-study enquiries see www.nec.ac.uk/caringwithconfidence 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 www.crossroads.org.uk or call Not online yet?
0845 450 0350. Local hospices also
have respite care facilities, and your
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
28 www.pspeur.org 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 firstname.lastname@example.org
colleagues can mark special occasions
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 www.muchloved.com/partners/psp 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.
www.pspeur.org 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 email@example.com
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 www.pspeur.org 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 firstname.lastname@example.org
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!
www.pspeur.org 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 email@example.com or Dave Maddy
call 01327 322419 if you (or someone
32 www.pspeur.org 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
e it without them. I’ve been
manned the PSP cheerin g points. I couldn’t have don
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
” 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.
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
www.pspeur.org 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
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’
on 01327 322419 Manchester 5K Superhero run on 26
or email events@ Suit included!).
draising Team on
pspeur.org 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 pspeur.org
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 www.pspeur.org PSP Matters Summer 2010
Awareness & 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 www.dchsreunion.co.uk
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 www.runnersworld.co.uk, or email walk last June. Graham’s mother-in-
firstname.lastname@example.org 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
www.pspeur.org PSP Matters Summer 2010 35
The PSP Association
PSP House, 167 Watling Street West, Towcester, Northamptonshire NN12 6BX
Main Telephone 01327 322410
Facsimile 01327 322412
Website and Discussion Forum www.pspeur.org
Executives & Administrators:
Jane Hardy – Chief Executive 01327 322410 email@example.com
Gerald Kirby – Deputy CEO and Financial Controller 01327 322417 firstname.lastname@example.org
Debbie Benadie – PA to CEO 01327 322410 email@example.com
Rebecca Benney – Information Manager 01327 322416 firstname.lastname@example.org
Dr. Angela Wilson – Director of Medical Awareness and Research 01327 322413 email@example.com
John Chandler – Director of Advocacy and International 01480 462053 firstname.lastname@example.org
Debra Chand – Director of Care and Support 01327 322414 email@example.com
Deborah Wheeler – Care and Support Manager 01327 322415 firstname.lastname@example.org
Lorraine Bowers – Care and Support Administrator 01327 322415 email@example.com
Katie Rigg – Nurse for Northeast England and Scotland 01434 382564 firstname.lastname@example.org
Kat Haines – Nurse for Northwest England, N. Wales and Ireland 01995 601533 email@example.com
Jill Lyons – Nurse for Southwest England and S. Wales 01934 842366 firstname.lastname@example.org
Samantha Pavey – Nurse for Southeast England 01747 841461 email@example.com
Gina Rutterford – East Anglia, Beds and Herts 07587 130637 firstname.lastname@example.org
Maureen Fowler – East Midlands 01455 848666 email@example.com
Lisa Goodridge – South Central 01582 731703 firstname.lastname@example.org
Kathy Miller-Hunt – South West 01935 851609 email@example.com
Madeleine Quine – Scotland 01768 898889 firstname.lastname@example.org
Sandra Campbell – Northern Ireland 02871 358499 email@example.com
Cameron Wood – Director of Development 01327 322418 firstname.lastname@example.org
Bernard Petticrew – Trust Officer 01327 322418 email@example.com
Alan Berry – Events Manager 01327 322419 firstname.lastname@example.org
Helen Porter – Community Fundraiser 01327 322419 email@example.com
Lis Nunn – Fundraising Administrator and Support 01327 322419 firstname.lastname@example.org
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.
This magazine can be recycled either through your kerbside collection or at a local recycling point.
Log on to www.recyclenow.com and enter your postcode to find your nearest sites.
36 www.pspeur.org 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 oer 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: email@example.com
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 ❏
…………………………………………….....................… I am a health/social care professional ❏
…………………………………………........................… I have a client with PSP ❏ CBD ❏
………………POSTCODE……..................…..………… I wish to become a PSP Friend ❏
Telephone ………………………....................…………. Other ❏ Please describe…………………………........
Email ……………………….....................………………. ......................................................................................
Types of Subscription:
Individual (24/7 telephone link to a PSP Nurse Specialist, the Carers’ Information Pack, PSP Matters magazine and
local support group information, plus (for professionals) invitation to annual Symposium and up-to-date research
Family (1st addressee / subscriber: as individual, above. 2nd addressee: Carers’ Information Pack, PSP Matters
magazine, local support group information)
PSP Friend (PSP Matters magazine, plus other literature on request and details of events).
How would you like to pay? By Cheque ❏ Credit or Debit Card ❏
Please tick the appropriate annual subscription rate:
Europe £25 individual ❏ £45 family ❏ £50 Organisation ❏ £12 PSP Friend ❏
Outside Europe £40 individual ❏ £55 family ❏
I enclose a cheque for £………………. payable to The PSP Association (additional donations also very welcome)
I authorise you to debit my Visa/MasterCard/Switch(Maestro) for the sum of: £.………...
Card No. …...…/….……./...….…/.……… Security No. (3-digits on reverse of card)…….…….
Start Date….…./………. Expiry Date…...../…….. Issue No (if appropriate)…….............
Signature: ✘………………………………….………..… Date: ..…..…/….….…/...………
May we treat your Subscription and / or Donation as Gift Aid? Yes/No
Gift aid enables us to reclaim tax on the payment or donation you make, at no cost to you! To be
eligible, you must be a UK taxpayer and pay Income or Capital Gains Tax equal to at least the
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: firstname.lastname@example.org Website: www.pspeur.org
Working for a world free of PSP
The PSP Association
Registered Charity numbers: England and Wales 1037087 / Scotland SC041199