Genetic Alliance UK in Wales:

Campaigning: Neuromuscular Conditions in Wales

Neuromuscular Conditions:  Improving Health Services across Wales

Genetic Alliance UK has been involved in a campaign to improve health services for people with neuromuscular conditions who live in Wales.  At present there is no dedicated service across Wales to provide care and management for the approximate 3000 people affected with one of these serious conditions. Adults and children are dependent on the interest of the local neurologist in their area  to see if they have a professional interest and expertise in this particular area. 

Working in partnership with the Muscular Dystrophy Campaign and with several other organisations which include: Action Duchenne, CMT United Kingdom, Duchenne Family Support Group, Jennifer Trust for Spinal Muscular Atrophy, Motor Neurone Disease Association, Myasthenia Gravis Association and the Myotonic Dystrophy Support Group, a successful lobby day was held at the National Assembly in early 2008.  A joint report from Genetic Alliance UK and the MDC was published -  Building on the Foundations: The Need for a Specialist Neuromuscular Service Across Wales and presented to the Welsh Assembly Government on the day. 

Families gather outside the Senedd, National Assembly for Wales, Cardiff Bay for beter servics or neuromuscular conditions in February 2008.

Genetic Alliance UK has also communicated the need for better neuromuscular services to the Chairs of both the Neuroscience Services Review and also the Health Commission Wales Review. 

The Welsh Assembly Government are now acknowledging that current service provision is not adequate for those with muscle disease living in Wales.  Genetic Alliance UK continues to work in this area.

If you would like further information about this work, please contact Genetic Alliance UK's development officer in Wales: Buddug Williams.

The report Building on the Foundations: The Need for a Specialist Neuromuscular Service Across Wales reveals:

  • Services are variable across the Wales, with almost three out of four Local Health Boards failing to support a muscle clinic for either adults or children, as found in a Freedom Of Information request.
  • Clinicians agree that specialist care through a multi-disciplinary team is the most effective way to extend life expectancy and improve quality of life. However, patients in Wales are currently being forced to travel to London and Winsford, Cheshire to receive essential treatment.
  • Where services are in place, they are vulnerable given their dependence on a handful of leading clinicians, who may in time move on or retire.
  • Ventilation prolongs life but is not provided in a systematic way across Wales.
  • Despite the close proximity to a specialist centre at Oswestry, one Welsh Health Board bordering England is unable to commission services at this centre due to funding constraints.
  • Welsh Commissioners will not consistently fund diagnostic tests for Welsh patients at recognized specialist centres in England. Resulting in some Welsh patients receiving inadequate diagnosis compared with the rest of the UK.

The report calls on the Welsh Assembly Government and NHS Wales to:

  • Recognise that current service provision for neuromuscular conditions is failing many patients and acknowledge that all patients with neuromuscular conditions require access to specialist diagnosis, treatment and on-going care.
  • Undertake an urgent review of existing neuromuscular services. This would assess the current levels of care across Wales to address any weaknesses in local provision.
  • Designate specialised neuromuscular services within the Health Commission Wales (Specialised Services) Commissioning Plan so that these services are strategically planned across Wales.
  • Press Local Health Boards and NHS Trusts across Wales to ensure that specialised neuromuscular services are accessible for patients with neuromuscular conditions to overcome current fragmentation, weakness and vulnerability.
  • Address the problems arising from the mix of rural, urban and valleys areas that exist across Wales where services are particularly inaccessible and inadequate.
  • Work with the Department of Health and the NHS in England to establish how services should be delivered in England and Wales through specialised neuromuscular centres, giving support to a network of local clinics.
  • Consider the establishment of a Neuromuscular Network for Wales to provide clinical leadership, coordination and development of services.