Peter Black and South Wales West Liberal Democrats

Peter Black Joins Fight Against Muscle Disease

Local Assembly Member Peter Black was joined this week by campaigners, clinicians and families from across Wales lobbying the Welsh Assembly Government to improve services for people living with muscle disease.

The Muscular Dystrophy Campaign and the Genetic Interest Group presented a hard hitting report to the First Minister, Rhodri Morgan, illustrating that many patients in North Wales are failing to gain access to the vital specialist care they need to treat their condition.

Mr. Black has also signed a statement of opinion in the Welsh Assembly calling on the Government to improve the care for patients with neuromuscular conditions.

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 FOI 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;

[Example: Seven year old Rhys Jenkins and his family travel from the Vale of Glamorgan to Hammersmith in London twice a year in order to receive specialist treatment. As the journey takes three hours each way the family has to spend the night in London, taking time off from school and work.]

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. This results in some Welsh patients receiving inadequate diagnosis compared with the rest of the UK.

Commenting on the lobby event and the report's findings, Peter Black said:

"I was delighted to have the opportunity to meet families and doctors from all over Wales to listen to their experiences of local services.

"Too often patients in Wales are expected to travel long distances just to gain access to the specialist care they need to treat their condition."

Presenting the findings to First Minister Rhodri Morgan and other Assembly Members, Consultant Neurologist Dr Louise Hartley, from Cardiff said:

"Specialist team care is essential and yet it is restricted for many muscle disease patients in Wales. Too often specialist care is vulnerable and heavily dependent on a few doctors, nurses and physiotherapists rather than embedded in a properly resourced, long-term service.

"The life expectancy and quality of life for boys with the fatal condition Duchenne muscular dystrophy is improving throughout the world because of proper mutl-discplinary care. Children in Wales must not be left behind."

Philip Butcher, Chief Executive of the Muscular Dystrophy Campaign, said:

"I'm delighted that we can count on the support of Peter Black in the fight against muscle disease. He is a powerful voice in the Welsh Assembly for local disabled people."

The Muscular Dystrophy Campaign, clinicians, patients and the Genetic Interest Group are calling 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.

END

Photograph attached shows Peter Black talking to lobbyists.

Notes to Editors:

· There are currently 3,000 people in Wales affected by a neuromuscular condition.

· There are four recognised specialist muscle centres in England and Scotland has a Muscle Network. Wales does not have either.

· More than 60,000 people in the UK have muscular dystrophy or a related muscle disease. A further 300,000 people are affected indirectly as parents, siblings or carers.

· Muscle diseases weaken and/or waste muscles. The conditions can be inherited or acquired and can affect people of all ages, backgrounds and nationalities. There are currently no cures.