Press Release

Dr Hywel Francis MP joins the fight against muscle disease

30th October 2008

Aberavon Dr Hywel Francis, joined forces with families, clinicians and Assembly Members at the Muscular Dystrophy Campaign's Welsh Conference to call for improvements to access to specialist care for families with neuromuscular conditions living in Wales.

Dr Hywel Francis MP joins the fight against muscle diseaseThe conference at Jersey Marine in the Aberavon constituency was attended by over 70 families from across Wales. During the conference, families and health professionals discussed the real difficulties facing families in accessing health and social care services.

Speaking after the conference, Hywel Francis MP said:

'I was delighted to meet with families from across Wales campaigning for improvements in access to specialist care.'

'I look forward to working with the Muscular Dystrophy Campaign to ensure that all families living with muscle disease in Wales are able to access the right care, expertise and support they need to live independently.'

Director of Policy at the Muscular Dystrophy Campaign, Robert Meadowcroft, said:

'I am pleased that we can count on the support of Hywel Francis MP in the fight against muscle disease. He is an excellent advocate for disabled people in Wales.'

The Muscular Dystrophy Campaign is the only national charity focusing on all muscle diseases. It invests £3 million a year in care support services, research, muscle centres, networks, information and resources. It has pioneered the search for treatments and cures for 50 years and provides practical, medical and emotional support to people affected.

Notes to Editors:

For more information about the work of the Muscular Dystrophy Campaign contact Sal Lalji at the press office on 020 7803 4844, mobile: 07827 241 043 or email: [email protected]

Achievements since launch of the Building on the Foundations report at the Senedd in February 2008:

  • The Muscular Dystrophy Campaign provided expert witness evidence in the House of Commons for the Welsh Affairs Select Committee's inquiry into cross border services in April, chaired by Dr Hywel Francis MP, and the charity were included in the Committee's interim report;
  • Welsh MP Nia Griffith secured an Adjournment Debate with the Health Minister in the House of Commons in May, when Welsh campaigners lobbied Parliament and petitioned Downing Street for service improvements;
  • The charity also met with the Secretary of State for Wales, Paul Murphy MP in May, and were joined by clinicians and campaigners from Wales;
  • Following a meeting with leading neuromuscular clinicians, patients and the Muscular Dystrophy Campaign in July, Health Minister Edwina Hart AM committed to ensuring muscular dystrophy and related neuromuscular conditions are recognised as a specialist service.

State of the Nation, published two weeks ago, revealed that patients in Wales are losing out in a postcode lottery and are being denied necessary health and social care services. Individuals are being forced to pay for their own wheelchairs and many family members have to provide full time care for years on end without any respite.

  • Three out of four families living with muscle disease in Wales face financial hardship;
  • 40 % of patients in Wales fund their wheelchair out of their own pocket or thanks to a charity;
  • 80% of Welsh carers have no access to respite care, like a hospice or care home;
  • Two out of five patients in Wales said that their experience of the diagnosis process was either poor or very poor;

The Muscular Dystrophy Campaign undertook a survey of the 22 Local Health Boards (LHB), published in the Building on the Foundations report in February 2008, in order to build a picture of access to healthcare services for people with neuromuscular conditions. The authors asked the Health Boards to provide information regarding services commissioned locally for people with neuromuscular conditions.

Out of the 20 LHBs that have so far responded, the following picture has emerged:

  • 75% of LHBs do not support a muscle clinic that offers a service to adults with neuromuscular conditions;
  • 70% of LHBs who responded do not support a muscle clinic that offers a service to children with neuromuscular conditions;
  • 70% of LHBs who responded do not support any adult or child muscle clinics within their area.

More than 60,000 people in the UK have muscular dystrophy or a related condition. A further 300,000 people are affected indirectly as family, friends 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.

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