Health Services Failing Patients With Rare Illnesses In Wales Says MDC
The report's authors, the Muscular Dystrophy Campaign and the Genetic Interest Group will be holding a lobby at the Senedd calling on the Welsh Assembly Government to ensure that all patients with muscle disease in Wales have access to the vital specialist expertise required to treat their condition.
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.
Steve Higginson, from Colwyn Bay, has struggled for many years to find appropriate care to treat his Becker muscular dystrophy:
"I found many parts Wales to be a desert for the treatment of patients with conditions like mine.
"Each week I travel to the Neuromuscular Centre in Winsford to receive the specialist physiotherapy I need. The round trip takes me at least two hours and I don't get any help towards my travel costs. I've been going there for ten years and if I hadn't my condition would be much, much worse because nowhere in Wales provides the same service.
"Expecting disabled people and their families to travel long distances just to gain access to the clinical care they need is shocking."
Presenting the findings today, to First Minister Rhodri Morgan and 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 multi-disciplinary care. Children in Wales must not be left behind."
Co-author of the report, Philip Butcher, Chief Executive of the Muscular Dystrophy Campaign, said:
"People with rare illnesses are living longer thanks to medical advances, and yet NHS services in Wales are failing to meet this demand.
"It is essential that the Health Commission Wales recognise the specialist nature of the care needed by patients with neuromuscular conditions and ensure that such services are available to all patients in Wales.
"We are calling on the Commission to undertake an independent review of services as a matter of urgency."
The Muscular Dystrophy Campaign, clinicians, patients and the Genetic Interest Group are calling on the Welsh Assembly Government and NHS Wales to:
1. 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;
2. 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;
3. designate specialised neuromuscular services within the Health Commission Wales (Specialised Services) Commissioning Plan so that these services are strategically planned across Wales;
4. 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;
5. Address the problems arising from the mix of rural, urban and valleys areas that exist across Wales where services are particularly inaccessible and inadequate;
6. 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;
7. consider the establishment of a Neuromuscular Network for Wales to provide clinical leadership, coordination and development of services.
Muscular Dystrophy Campaign
De servicii de sãnãtate de lipsa de pacienþi cu boli rare, în Þara Galilor spune MDC - Health Services Failing Patients With Rare Illnesses In Wales Says MDC - articole medicale engleza - startsanatate