Annual Report
2013
The Wales Neurological Alliance 2013 Membership
Alzheimer’s Society
Ataxia South Wales
Brain and Spine Foundation
British Polio Fellowships
Cerebra
Charcot Marie Tooth UK
Chartered Society of Physiotherapy
Child Brain Injury Trust
College of Occupational Therapists
The Cure Parkinsons Trust
Different Strokes
Dystonia Society
Epilepsy Action Cymru
Epilepsy Wales
Fibromyalgia Wales
Guillain-Barre Syndrome Support Group
Genetic Alliance UK
Headway UK in Wales
Huntington’s disease Association
Idiopathic Intracranial Hypertension UK
Migraine Action
Motor Neurone Disease Association
Multiple Sclerosis Society Cymru
Muscular Dystrophy Campaign
Myasthenia Gravis Association
Myotonic Dystrophy Support Group
National Tremor Foundation
Parkinson’s UK
Progressive Supranuclear Palsy
Shine Cymru
Stroke Association
The Brain Tumour Charity
The Encephalitis Society
Tuberous Sclerosis Association
Welsh Association of ME & CFS Support
Wales Neurological Alliance Executive Committee 2013
WNA Chair: Ana Palazon, Director Cymru, Stroke Association
WNA Vice-Chair: Urtha Felda - Area Development Officer (North Wales), MS Society Cymru
WNA Secretary: Ann Sivapatham – Wales Manager Epilepsy Action Cymru
WNA Treasurer: Kate Steele – Wales Director, Shine Cymru
Committee members: Kevin Thomas – North Wales Regional Care Development Adviser, Motor Neurone Disease Association
Dave Maggs - Wales Development Manager, Headway
Carol Ross – Founder, Fibromyalgia Wales
Joseph Carter, Acting Director, MS Society Cymru
Alan Thomas, Chairman, Ataxia South Wales
David Murray, Patient Advocate, Cure Parkinsons Trust
Coordinator (Part time): Maggie Hayes
WNA contact information:
07969 286119
Chair’s foreword
2013 has been an important year for the Wales Neurological Alliance (WNA) to raise the profile of neurological conditions.
We have seen developments across various key areas. Of significance has been the changes we highlighted following our review of neurophysiotherapy services across all Local Health Boards (LHBs).
Whilst indisputably improvement remain to be made, the degree to which most LHBs have implemented the 12 recommendations made by the Cross Party Group for Neurological Conditions’ report on neurophysiotherapy services (February 2013) is encouraging.
Indeed, the work programme that WNA has followed in collaboration with the Cross Party Group has addressed central areas for further development. For example, the examination of neuropsychology services, based on the report produced by the West Wales Neurological Alliance, has provided us with a platform to widen attention to this important service area.
This year we were also able to launch the Service User and Carer Participation (UCP) programme in partnership with NEURODEM. Providing grant giving for assistance to people affected by neurological conditions to be involved in research.
Crucially, 2013 has seen the launch of the Welsh Government’s Delivery Plan for Neurological Conditions. WNA welcomed the opportunity to assist the Welsh Government to inform this important document.
This plan provides the Welsh Government with an effective tool for population health planning. However, as importantly from the WNA’s perspective, the plan makes LHBs accountable to people affected by neurological conditions as, from this point onwards, it provides a yard stick against which progress will be measured. This is a welcomed, long awaited initiative.
In this regard, the WNA will continue to exercise both its collaborative and watchful role, particularly as improvements to services for people affected by neurological conditions are to be achieved within the stringent demands created by diminishing public funding.
WNA’s achievements are totally dependent upon the collaboration of all members organisations for whose support I remain grateful. I would like to extend my appreciation to the members of the Executive Management committee who have ensured WNA’s working subcommittees can focus on the priorities facing us. Particular recognition is owed to our Co-ordinator, Maggie Hayes, who has been pivotal in ensuring the work programme is delivered.
Finally, I would like to thank members for their funding contribution and to all our partners, particularly NEURODEM for their invaluable support.
Ana Palazon,
Chair, Wales Neurological Alliance and Director Cymru, Stroke Association
2013 Updates
WNA Management Sub group
The remit of this Sub group has been primarily to guide and support the WNA Co-ordinator in agreeing priorities and work programme. It is important to acknowledge that the level of insight and initiative that our Co-ordinator has demonstrated throughout, both in her development and administrative roles has enabled for a very smooth, dynamic and proactive approach.
Through the period, the Subgroup has received regular reports from the other working sub groups to address progress and any potential challenges or concerns and ensure that WNA’s work programme flows. The Management sub group has scrutinised and approved expenditure monitoring reports from the WNA Treasurer. It has also ensured that every Executive committee meeting has a programme of annual meetings with agreed agendas.
Sadly, this year we have seen the departure of valued colleagues from the Executive community, Jenny James from Motor Neuron Disease Society and Aileen Napier from Parkinson's UK Wales/Cymru. However, we have also gained expertise as new members have joined: David Murray from Cure Parkinson’s Trust and Alan Thomas from Ataxia South Wales also join this year.
Finally, The Management Subgroup would like to extend a sincere thanks to WNA’s Co-ordinator, Maggie Hayes, who left WNA in March 2014 to pursue a new role in the field of independent living. Maggie has provided very high quality support to the WNA and we wish her a very successful future.
At its March Executive committee meeting, the Executive Board accepted the resignation of our Vic-Chair, Urtha Felda, who will be working as WNA Co-ordinator from 1st April 2014. The opportunity to engage Urtha in this capacity is timely and an excellent solution giving Urtha’s knowledge and expertise. This will enable us to have continuity in our work, but leaves the vacancy of Vice Chair open for election at the AGM.
Cross Party Group and Influencing
In addition to the activities outlined in the Chair’s foreword, the WNA has had a busy year supporting the Cross-Party Group for Neurological Conditions. During 2013, the Cross-Party Group, in collaboration with the Chartered Society of Physiotherapy published a report into access to Neurophysiotherapy services in Wales.
The inquiry found that although there is evidence of good practice within physiotherapy services, that availability of specialist Neurophysiotherapy services across Wales is inconsistent. There were 12 key recommendations:
1: Local Health Boards expand self-referral so that anyone with a neurological condition who would benefit from physiotherapy can self-refer to local physiotherapy services
2: Local Health Boards establish regular neurological multi-disciplinary teams so that service users can access physiotherapy and other support. These teams must have access to appropriate rehabilitation facilities including the ability to refer to inpatient.
3: An expansion in the number of clinical specialist neuro-physiotherapy roles so that every Local Health Board (LHB) has a specialist neuro-physiotherapist for ABI, MS, Parkinson’s disease, neuro muscular disease (NMD), spinal cord injury, stroke and specialist neuro-physiotherapists to provide support for rarer conditions such as Spina bifida or Huntingdon’s disease
4: We recommend that Local Health Boards Organise specific neurological skills rehabilitation courses for generic physiotherapists in order to improve skills within the community and within hospitals
5: Local Health Boards review access to all training across professions in order to maximise appropriate professional skills development within limited training budgets
6: The Health and Social Care Committee considers whether the All Wales Medicines Strategies Group should appraise equipment and technology and question whether they are cost effective as part of the upcoming inquiry on access to medical technologies in Wales
7: Local Health Boards evaluate and standardise the use of specialist equipment for patients with complex needs so a common level of service can be expected when patients transfer closer to home, or to their own home, for continued rehabilitation
8: The Welsh Government considers commissioning a review of hydrotherapy provision across Wales to ensure those people with neurological conditions who might benefit from hydrotherapy are able to access it, both as in-patients and out-patients
9: The Welsh Government continues to work with Local Health Boards to fund an expansion of telemedicine and telecare technology across Wales.
10: Heads of Therapies promote the use of validated outcome measures so that physiotherapy for people living with neurological conditions is provided for the appropriate length of time that is commensurate to their needs.
11: The National Exercise Referral Scheme be expanded into all neurological conditions to support individuals to self-manage their condition
12: Local Health Boards review their specialist physiotherapy facilities to determine appropriate access for community use
Throughout 2013 the WNA has been meeting Health Boards and Welsh Government officials to monitor whether the recommendations are being implemented. Directors of Therapies across Wales have responded positively to the report and many recommendations have been delivered.
In October the Cross-Party Group for Neurological Conditions devoted a meeting to showcasing research in Wales. Earlier in the year the Welsh Government had launched the SêrCymru project, investing £21.3 million to develop world-class research in Wales. Professor Yves Barde has been awarded £4 million for research into Neurobiology in the School of Biosciences at Cardiff University (September 2013 – October 2018) as part of this project and he joined Professor Bob Woods from Neurodem at the meeting. The Cross-Party Group showed that the Welsh Government had expanded its investment in research and that due to the Health Information Research Unit at Swansea University, Neurodem, Involving People and the willingness of neurologists and other health professionals to engage in research, Welsh research was in a positive position. However the long term funding of higher education in Wales, the scope of the All Wales Medical Strategy Group and cross-border services were cited as challenges.
In November the Cross-Party Group met in Carmarthen for a meeting focusing on neuropsychology. The meeting was the third time the Cross-Party Group had met outside of the National Assembly and the first time in West Wales. The meeting allowed service users to question professionals and politicians on local services, and allowed the West Wales Neurological Alliance to present their report into neuropsychology services.
The year ended with the Welsh Government publishing of the draft Delivery Plan for Neurological Conditions. Shortly after becoming Minister for Health and Social Services, Mark Drakeford AM, promised a plan that would take forward outstanding issues from the neurosciences review as well as respond to the Cross-Party Group inquiries into understanding of neurological conditions (2011) and access to neurophysiotherapy (2013).The draft Delivery Plan sets out the Welsh Government’s expectations of the NHS in Wales to plan, secure and deliver high quality person-centred care for anyone affected by a neurological condition. It focuses on meeting population need, tackling variation in access to services and reducing inequalities in health outcomes across 6 themes: Raising awareness of neurological conditions; Timely diagnosis of neurological conditions; Fast and effective care; Living with a neurological condition; Improving Information; and Targeting research.
The draft Delivery Plan can be found at:http://wales.gov.uk/consultations/healthsocialcare/neurological/?status=closed&lang=en
The Wales Neurological Alliance welcomes the principle of a Delivery Plan and the broad themes, but we are concerned by the lack of detail and would like to see better performance measurements. The Welsh Government has given a commit to engage with the WNA and constituent charities on the implementation of the finalised plan, so we will work with them as the voice for people living with neurological conditions.
Neurodem
The on-going work between the WNA and NEURODEM has remained an important part of our work plan. This year we launched the Service User and Carer Participation (UCP) grants programme. Through this, the NEURODEM Subgroup has broadened the opportunity for people affected by neurological conditions to be actively involved throughout the research process, including the planning, oversight and dissemination of research projects.
In addition to this, the Subgroup has fostered active engagement with other organisations that promote the involvement of beneficiaries and other stake holders within research. We have partnered with ‘Involving People’ in recognition of its track record in this regard. Through this partnership the WNA is able to enable people interested in participating in research, and who are specifically affected by neurological conditions to be added to the broad database of research participants operated by Involving People and be easily identified by their condition-specific interest.
We are able to do this via WNA’s website, by promotion at events and through working relationship between WNA’s Co-ordinator and Involving People’s colleagues.
The Sub group has also been instrumental in bringing neuroresearch to the forefront via its joint work with the Cross Party Group on Neurological Conditions. At its October meeting when leading academics and researchers made the case for appropriate investment into neuroreaserch and presented on key areas that included:
· the research programme on Huntington’s Disease that has taken place in Cardiff;
· the work of the Wales Dementias and Neurodegenerative Diseases Research Network, and;
· the Sêr Cymru programme which is the Welsh Government’s flag ship programme to enhance and build upon the research capability in Wales.
In conclusion, the Subgroup has been able to promote and raise awareness of neuroresearch via its influencing work with member organisations, through WNA’s response to the Welsh Government’s Neurological Conditions Delivery plan and, importantly, it has also fostered the message that neuroresearch must focus on the barriers that people affected by neurological conditions face; thus promoting the Social Model of Disability.
Communications, Partnership and Membership Subgroup
The WNA membership currently stands at 35 organisations with links to neurological conditions working in Wales.
The focus of the subgroup in 2013/14 has been on reviewing the WNA's methods of communication, the purpose being tools to enable better links with membership, and maximum reach and coverage for work relating to neurological conditions in Wales.
The coordinator has realigned communication with members to ensure that they receive regular email updates and quarterly e-bulletins.
As a result, 2014/15 will bring:
· a revised constitution that is 'fit for purpose' and provides clearer guidelines for Governance and Membership;