; 1. Co-convener Mary Mulligan MSP welcomed everyone and noted that
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1. Co-convener Mary Mulligan MSP welcomed everyone and noted that


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									        Allana Parker, Secretariat: Joint Epilepsy Council of the UK and Ireland
        48 Govan Road, Glasgow G51 1JL Tel: 0141 419 1701 Fax: 0141 419 1709
        Email: aparker@epilepsyscotland.org.uk
                Note of Meeting – Cross-Party Group on Epilepsy, 29 April 2010
In Attendance:
Declan Ahern, Epilepsy Specialist Nurse              Sheena Bevan, Epilepsy Specialist Nurse
Elaine Bradley, Quarriers                            Mark Cooper, Capability Scotland
Alison Culpan, Glaxo Smith Kline                     Olive Drane, Observer
George Foulkes MSP                                   Donald McIntosh, Epilepsy Nurse Specialist
Eileen McCubbin, Epilepsy Specialist Nurse           Ailsa McLellan, Lead Clinician
Margaret MacSween, Paediatric Epilepsy Specialist Nurse
Shirley Maxwell, Epilepsy Connections                Hilary Mounfield, Scottish Epilepsy Centre
Mary Mulligan MSP                                    Sheila Murdoch, Observer
Fiona Nicholson, Quarriers                           Angela Norman, Epilepsy Specialist Nurse
Frazer Ramsay, Observer                              Katherine Ramsay, Observer
Derek Robertson, Epilepsy Liaison Nurse              Karyn Robertson, Paediatric Network Manager
Shona Robison, MSP                                   Kate Sanford, Quarriers
Anne Schenk, Observer                                Chris Schenk, Observer
Kerry Shearer, Epilepsy Scotland                     Dr Jane Stuart, NHS Lothian
Moira Smith, Observer                                Sam Whitmore, Epilepsy Connections
Anissa Tonberg, Epilepsy Scotland                    Sandy Wotherspoon, Observer
Emily Wotherspoon, Observer                          Lesslie Young, Epilepsy Scotland
Ian Young, Observer

Claire Baker MSP                                  Robert Brown MSP
Marilyn Bryce, Epilepsy Scotland Board            Lesley Coyne, Matthew’s Friends
Marea Foulis, Highland Council                    Jamie Hepburn MSP
Cathy Jamieson MSP                                Linda Keene, Epilepsy Specialist Nurse
John Farquhar Munro MSP                           Des McNulty MSP
Cathy Peattie MSP                                 John Scott MSP
Jennifer Simpson, Janssen-Cilag                   Allana Parker, Epilepsy Scotland
Sharon Wood, JEC

1. Co-convener Mary Mulligan MSP welcomed everyone and noted that the good attendance reflects
the quality of our speakers. The recent updates then followed
   • Parliamentary questions lodged by Jackie Baillie MSP, Ross Finnie MSP and Alison McInnes
       MSP since the last CPG AGM were reviewed.
   • Letters regarding the Social Work Section 23 Assessments (Children Scotland Act) and
       epilepsy have been sent to the Minister of Education and Lifelong Learning, the Director of
       COSLA and the Association of Directors of Social Work.
   • Professor Brian Neville’s proposed Code of Practice for Children with Epilepsy was distributed
       and any comments are to be directed to the CPG secretariat.
   • Mary Mulligan then introduced speaker Margaret MacSween from NHS Highland.
2. Margaret MacSween made an apology on behalf of Marea Foulis, Highland Transition Co-
   ordinator. The presentation for NHS Transition Epilepsy Pathway for Young People in Transition
   from Children’s Services into Adult Services was outlined. The presentation highlighted how the
   pathway came together; it initially began as a steering group and from this the pathway was
   developed. Margaret explained that one template did not fit all and that the pathway itself should
   be implemented as a working tool. The four individual pathways that are used were explored in
   depth. The main resource used for all pathways is communication. A multidisciplinary approach
   is used and Transition Clinics involve the families of the people with epilepsy.
3. Mary Mulligan MSP thanked Margaret MacSween for her presentation and the moved onto AGM
       • Mary thanked everyone for attending once again, and asked everyone to look over the co-
           convener’s report and the treasurer’s report.
       • Mary recorded thanks to the JEC for funding the CPG.
       • Mary then proposed to ask Epilepsy Scotland to continue the secretariat for the CPG,
           George Foulkes MSP seconded the proposal.
       •    Mary spoke about nominations for office bearers. Mary nominated herself as co-convenor,
            along with Alasdair Allan. John Farquar Munro was nominated as treasurer, and Nannette
            Milne was nominated as secretary. There where no further nominations.
        • There was no other AGM business
4. Mary then opened for questions and discussion about Margaret MacSween’s presentation. Kate
    Sanford from Quarriers asked how the pathways mentioned, integrated into further education,
    employment, housing – how do these elements join together? Margaret replied that the process
    mentioned in the presentation is linked into an adult social work process. Margaret acknowledged
    that there are additional challenges but the pathway is dealing with a whole new set of people
    which brings about new challenges. This transition pathway is part of some wider transition work
    between the Highland Council and the Health Board.
    Will Scott, from the Scottish Government Health Directorate, asked how easily corresponding
    organisations could implement this. Margaret stated that implementing this transition pathway
    into other organisations would be a challenge but not impossible.
    Dr Jane Stuart of NHS Lothian asked for more information about the four different pathways.
    Margaret went into detail about the pathways. For example, the first pathway is for people with
    well controlled epilepsy and learning difficulties, and the third pathway is for people with difficult to
    manage epilepsy and special, complex health needs. She noted that GPs were asked to attend
    the transition groups. Dr Stuart also asked about speech and language issues. Margaret replied
    that there was not speech and language therapy integrated into transition meetings but it was
    included in child health plans. Elaine Bradley from Quarriers asked if this would be rolled into the
    transition meetings but Margaret suggested that this may be difficult in adult epilepsy support
    groups. Epilepsy Learning Disability Specialist Nurse, Donald Mackintosh commented that
    neurology services is fairly new for epilepsy and learning difficulties and that often you are better
    served as patient if you have both rather than epilepsy alone. Hilary Mounfield from the Scottish
    Epilepsy Centre asked if challenging behaviour was recognised on the pathways and Margaret
    explained that it wasn’t as yet, but she would take that to the next re-evaluation. Donald
    Mackintosh enquired about the video clinics that he has been involved in, and whether this was
    something that would be used. Various attendees voiced that this service had been used by older
    patients but not as much for those in the transition age group.
5. Mary introduced the Minister for Public Health, Shona Robison MSP.
  Shona Robison MSP thanked the attendees for inviting her to the CPG on epilepsy, and updated
  the group on epilepsy care. The Scottish Government understands the condition is complex,
  recognises that it affects 40,000 people in Scotland and that diagnosis also affects family and care
  providers. She explained that NHS QIS is writing to the health boards about how the new clinical
  standards for neurology should be implemented in service providers for people with epilepsy. In
  order to achieve better health, better care is needed along with the support of a care network,
  managed clinical networks and the voluntary sector. She outlined plans to expand the ‘hearty
  voices’ program, which has already up and running concerning stroke and diabetes, into neurology
  and commented that MCN’s will help build on work such as that already done by Epilepsy Scotland
  concerning the need for early diagnosis and more epilepsy specialist nurses. The Government is
  aware of the Joint Epilepsy Council (JEC) recommendations for more epilepsy specialist nurses,
  since their role is essential in providing high quality information and support. Building on Epilepsy
  Scotland’s excellent information work, the Government is supportive of their information leaflets
  being made available in doctor’s surgeries and clinics. Will Scott (SGHD) added that since long
  term conditions affect young people too, guidance has been issued to Health Boards and
  consideration may be give to appointing individuals to be specifically responsible for such transition
  Mary invited Sheena Bevan (Epilepsy Specialist Nurse – Grampian) to ask her prepared question,
  Sheena noted that she was asking the question on behalf of fellow epilepsy specialist nurses. The
  question was;
  Evidence shows the development of specialist nurses has improved the quality of life of patients
  living with chronic conditions. Specialist nurses throughout the UK have helped to reduce waiting
  times, reduce hospital admissions and improve patient outcome. Patients highlight a high level of
  satisfaction in relation to the care they receive from specialist nurses.
  In the present financial crisis in some areas of the UK including Scotland withdrawing specialist
  nurses posts and reducing hours of existing specialist nurses is seen as a way of saving money.
  At a time when Epilepsy Scotland worked tirelessly to increase the numbers of epilepsy specialist
  nurses what are the views of the MSPs present today regarding the withdrawal of specialist nurses
  posts and the reducing of specialist nurses hours due to financial cutback and the needs for Health
  Boards to save money?
  Shona Robison MSP replied that there was a debate to be had about this. Her view is that
  demands on the NHS are increasing, but investment must go to those who need it most and into
  using resources more effectively. She stated that investment in epilepsy specialist nurses is a
  good investment, and she will be having a discussion on the matter with the various Health Boards.
  She also recognises that the demands upon services are huge and this demand will continue to
  grow. Shona said she would like to gather more information about this, and that the Health Boards
  need to show the Government how they are going to implement these cuts. MCN will give out the
  message of this outcome, we shouldn’t say that all cuts will fall at epilepsy specialist nurses.
  Angela Norman (Epilepsy Specialist Nurse – Dundee) pointed out the differences in support for
  specialist nurses between epilepsy and dementia and explained that as dementia prevalence
  continues to increase, so too will epilepsy. Shona Robison MSP acknowledged there was strong
  support for dementia, a clear pathway, early diagnosis and significant dementia funding. She
  explained that post diagnostic support is key, high impact funding would pick up the epilepsy

7. Mary Mulligan MSP thanked the Minister for her time and asked her to take away these questions.
Shona Robison MSP replied that she will write back to Mary with her response.

8. Opportunities for parliamentary work:
   • National Epilepsy Week runs from 13-19 June this year.
   • Wednesday 16 June Epilepsy Scotland parliamentary reception in garden lobby
   • Thursday 17 June MSP Photocall
   • Propose a members question about under 25’s

7. Date of next meetings are Thursday 30 September 2010, Thursday 25 November 2010 and
Thursday 27 January 2011.

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