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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: firstname.lastname@example.org 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 Apologies: 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 business. • 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 services. 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 overlap. 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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"1. Co-convener Mary Mulligan MSP welcomed everyone and noted that "Please download to view full document