The Wales Neurological Alliance Membership

The Wales Neurological Alliance Membership

Annual Report

2012

The Wales Neurological Alliance 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 inWales

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

WNA Chair:Joseph Carter - Acting Director MS Society Cymru

WNA Vice-Chair:Kevin Thomas – North Wales Regional Care Development Adviser, MotorNeurone Disease Association

WNA Secretary:Ann Sivapatham – Wales Manager Epilepsy Action Cymru

WNA Treasurer:Kate Thomas – Wales Director, Shine Cymru

Committee members:Ana Palazon - Director, Cymru Stroke Association

Dave Maggs - Wales Development Manager, Headway

Carol Ross –Founder, Fibromyalgia Wales

Jenny James - South Wales Regional Care Development Adviser, MotorNeurone Disease Association

Aileen Napier - Country Manager Wales, Parkinsons

Urtha Felda - Area Development Officer (North Wales), MS Society Cymru

Coordinator (Part time):Maggie Hayes (in post since October 2012)

WNA contact information:

07969 286119

Foreword

By Joseph Carter (MS Society Cymru), Chair, Wales Neurological Alliance

The Wales Neurological Alliance (The Alliance) has gone from strength to strength in 2012 and I hope that in 2013 we can rise to new challenges and continue to influence services for our members in a positive way.

We have reorganised ourselves and created sub groups to take our work forward so that we can deliver on our one Aim and four Objectives. These are:

AIM

To improve services for people affected by neurological conditions

OBJECTIVES

  1. To engage and work in partnership with people affected by neurological conditions
  1. To raise awareness of neurological conditions and their impact on individuals and their communities
  1. To inform and influence policy makers about the needs of people with neurological conditions

4. To support and promote appropriate research

This new focus has allowed the Alliance to better plan its work and respond to issues that reflect these aims and objectives, rather than risk being distracted from our shared priorities.

We have reformed our processes and appointed a new coordinator, Maggie Hayes, to help broaden our reach into social services, as well as health, and assist in greater engagement of our members.

In the past twelve months, The Alliance:

  • Has worked with Neurodem to influence neurological research in Wales. This partnership saw us host a conference in Cardiff in November and has been a great opportunity to use our shared networks of researchers and service users interested in research.
  • Held four meetings of the Cross-Party Group for Neurological Conditions and used this as our principle tool to influence Welsh Government and opposition politicians. The group has focussed on the neuroscience review, wheelchair waiting lists and held an inquiry into Neurophysiotherapy.
  • Contributed to the work of the neurosciences reviews in North Wales and work to influence change in mid and South Wales. In North Wales the work is still ongoing and we remain active stakeholders, whilst the project has officially finished in mid and South Wales. The challenge will now be to ensure that the proposals are delivered locally.
  • Has built relationships with senior politicians and professionals. The Alliance meets regularly with the Welsh Health Specialist Services Committee (WHSSC) and meets with the Minister for Health and Social Services.
  • Successfully lobbied the Health and Social Care Committee to hold a short inquiry into wheelchair waiting lists. The committee reported in summer 2012 and exposed the poor communication between WHSSC, Health Boards and the third sector. Although progress appears to have been made in mid and South Wales, long delays remain in North Wales. The Alliance has since been invited to sit on the Posture and Mobility Partnership Board to oversee reforms to the service.
  • Has started the process of mapping key contacts within our constitute charities so we can better engage with the membership and local alliances.

The Executive Committee continues to meet every six to eight weeks – a reflection of the amount of work we undertake, but also of the membership’s commitment to work together.

We wish to thank everyone for their support over the last year. It is impossible to name them all, but without financial support, hours of voluntary work, expertise and advice, we would not have achieved so much. I would especially like to thank Judi Rhys who stepped down in October and Terry Moseley, our former coordinator who left in July. They were both important members of Alliance and we are extremely grateful for all of the work they have done.

I will be standing down as chair at the 2013 AGM so I would like to thank everyone who has supported me in this role over the previous 2 years. We have achieved so much and I hope that under my successor the Alliance can continue to go from strength to strength.

Key updatesfor 2012

In 2012 we decided to restructure our internal operations so that we were able to deliver our work plan via 6 subgroups. The Executive Committee created the following subgroups:

  • Coordinator Management
  • Cross Party and Influencing
  • Neurodem - User and Carer Participation Programme
  • Membership, Communications and Governance
  • North Wales Neuroscience
  • South Wales Neuroscience

Coordinator Management

The appointment of Maggie Hayes in October 2012 as the WNA Coordinator prompted the Executive Committee to review its sub group structure. The Coordinator Management Group (CMG) was formed as part of this review in order ‘tosupport and guide the WNA Coordinator and prioritise the Coordinator’s work programme’. In order to ensure the Coordinator’s workload and priorities are driven by and accountable to the leadership of the Executive Committee and a close eye is kept on the WNA’s finances, the membership of the CMG (a minimum of 4 members of the Executive Committee) includes the WNA Chair and Treasurer. A new CMG will be formed after the 2013 AGM with the incoming Chair joining the Group.

Cross Party 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 2012, the Cross Party Group, in collaboration with the Chartered Society of Physiotherapy embarked on aninquiry intoneurophysiotherapy 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. Taking evidence from people who have neurological conditions, the Chartered Society of Physiotherapy (CSP) and Local Health Boards, the report suggests that the Welsh Government should establish a working group to take forward 12 key recommendations.

The report was successfully launched at the Physiotherapy Department at Ysbyty Glan Clwyd where chair of the Cross Party Group for Neurological Conditions, Mark Isherwood AM met with patients who have had neuro physiotherapy and Physiotherapists who work in neurology at Betsi Cadwaladr Health Board.

Over the next 12 months, we will be seeking meetings with key members of the Welsh Government, Heads of Therapies within Local Health Boards and other key professionals to take forward to the recommendations of the report.

Copies of the report are available at:

Following the publication of the National Assembly Health committee report in 2010, we have continued to campaign throughout 2012 for a better wheelchair service in Wales. Despite this, our members continue to report that access to wheelchair services in Wales continue to be a barrier to their independence. Therefore, in order to create a clear strategic plan on how to move this issue forward, we have decided to dedicate the June 2013 CPG to relook at this issue.

In addition to working on the Neurophysiotherapy, the Cross Party Group, with the assistance of the WNA, will be seeking updates from the Welsh Government and Local Health Boards in relation to the inquiry into the Understanding of neurological conditions within Emergency Units which was published in 2011. Copies of the report are available at:

Neurodem - User and Carer Participation Programme

Throughout 2012 we have continued to build on our partnership with Neurodem Cymru and develop the User and Carer Participation Programme.We attendedthe Neurodem Steering Group meeting and worked closely with Neurodem to plan and deliver a successful ‘Patient and Public Involvement’ Conference in Cardiff in November 2012. This included;

  • Presentation by the Chair of WNA
  • Presentation by a person with Parkinsons Disease
  • Several WNA and member organisation information stalls
  • Facilitation through direct funding of people with neurological conditions to attend.

Throughout 2012, The WNA has proactively raised awareness of the benefits of neuro research at a political level. Internally, the WNA has held meetings to evaluate achievements in user and participant involvement and agreed priorities for supporting the new Coordinator to develop partnership further. The new Coordinator has conducted a review of the User and Carer Participation Programme and an action plan has been developed. The WNA Neurodem subgroup is currently in the process of deciding priority for the action plan so that actions can be taken forward into 2013.

Membership, Communications and Governance

The WNA welcomed returning and new members in 2012 and membership has now grown to 35 members.

The newly appointed Coordinator carried out a review of the Alliance membership in 2012. Membership details have been brought up to date and key areas where the WNA can improve on its communication have been identified. An action plan has been put together that draws on the WNA Communication Strategy and a Social Media Proposal put forward to the Executive Committee that explores the potential use of tools such as Facebook and Twitter to build better communication links with membership, people with neurological conditions and other key stakeholders.

North Wales Neuroscience

The persistence of the WNA’s activities in North Wales to see the recommendations of the Neuroscience Review become reality has paid off. 2012 saw the setting up of the North Wales Neuroscience Network Board with a permanent, full-time Director, Annette Morris. The Board has senior policy and clinical representation from Betsi Cadwaladr University Health Board, Social Services, The Walton Centre Foundation Trust, the Community Health Council, and of course, the WNA who have been allocated two seats on the Board.

To work effectively within the Neuroscience Network the WNA has established a North Wales group led by two Executive Committee members and two non-executive members who can input the issues of concern from WNA member organisations to the Neuroscience Network Board, and can feedback to the WNA nationally and through local neurological alliances.

The WNA has focussed its influence within the Neuroscience Network thus far on the priority needs identified and highlighted in the 2009 WNA Patient Priority report compiled from consultation with people living with neurological conditions in North Wales. In the first year of the Neuroscience Network Board we are pleased to report significant outcomes on the WNA identified issues. The priorities and outcomes achieved are;

The promotion of Multidisciplinary Team working – The Board hasaccepted this priority and have agreed to support the development of Disease Specific Advisory Groups (DSAG) to further this promotion. To date DSAG’s have been established for Multiple Sclerosis and Motor Neurone Disease which add to an already established Stroke Forum. The Neuroscience Network Board iscommitted to supporting the development of further DSAG’s in partnership with condition specific members of the WNA.

Recognition of the long-term rehabilitation needs of people with a neurological condition – The Board has set-up a Rehabilitation sub-group to assess and deliver on this priority. The WNA hasfour member organisations represented on this sub-group and will focus amongst other things on issues identified in the Cross Party Group for Neurological Conditions Physiotherapy Report.

Training of all health and social care professionals on the needs of people living with a neurological condition – The WNA has influenced the establishment of an ‘Academic’ sub-group within the Neuroscience Network led by Professor Bob Woods of Bangor University. The remit of this group will encompass education and training of health and social care professionals, and neurological research. This group will also lead on another WNA identified priority of Condition specific information and support availability for people newly diagnosed with a neurological condition.

The WNA will continue to influence the Neuroscience Network Board on the other identified priorities of Specialist Nurses and Wheelchair services.

In April 2012, the WNA, in its secretariat role, facilitated a successful Cross Party Group for Neurological Conditions meeting in Conwy. This was attended by many people living with a neurological condition and it is envisaged that this will now become an annual event.

South Wales Neuroscience

The development of the South Wales Neuroscience subgroup is in its infancy. During 2013, the WNA intends to explore ways in which the Alliance can work with the South and West Wales Neurological Alliances, key health and social care stakeholders, agencies and organisations in Wales to create a robust and cohesive strategic approach to informing and influencing regional and local neurological services.

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