Press Release

Muscular Dystrophy Campaign

Local MP supports fight to improve services for vulnerable patients

15th May 2008

On Wednesday 14 May Dr Hywel Francis MP and Chair of the All-Party Parliamentary Group for Carers for Aberavon met with local campaigner Ray Thomas whose family is affected by muscular dystrophy at the Muscular Dystrophy Campaign's Parliamentary Reception to lobby Government to improve specialist services for people with neuromuscular conditions. 

At the reception the Muscular Dystrophy Campaign published Focus on Physio a report revealing that patients with chronic conditions across Scotland are being denied access to ongoing physiotherapy by the NHS.

Dr Hywel Francis MP and local campaigner Ray Thomas

Dr Hywel Francis MP and local campaigner Ray Thomas

The report led by clinicians and physiotherapists found that for many patients with neuromuscular conditions, physiotherapy is essential in maintaining the best possible quality of life, for as long as possible.

However, physiotherapy is often restricted to patients where an improvement can be demonstrably measured by physiotherapists. Patients with progressive neuromuscular conditions fail to meet these criteria and are often refused physio on the NHS. They are then forced to pay for these services privately or go without. 

Dr Hywel Francis MP spoke in a debate that evening entitled access to specialist services for sufferers of muscular dystrophy. He has also added his signature to a House of Commons Motion calling on the Welsh Assembly Government to recognise neuromuscular services as a specialist service best delivered as part of a multi-disciplinary team, to ensure improved standards of care for all patients with neuromuscular conditions.

It is estimated that 1 in 1,000 people in the constituency of Aberavonare living with muscle disease.

Following a patient survey and interviews with clinicians and health professionals in Wales Building on the Foundations: Focus on Physio, reveals:

  • Many patients in Wales with neuromuscular conditions do not have access to specialist physiotherapy as part of a multi-disciplinary management of care;
    [Example: One patient in Colwyn Bay has found parts of Wales to be a desert for treatment for conditions like his.]
  • Many patients in Wales who require acute rapid intervention, for example following a fracture, may not receive timely and ongoing physiotherapy to ensure their regain their mobility;
    [Example: One patient from Lampeter has Becker Muscular Dystrophy. Before he broke his femur he could walk. He received no physiotherapy following his fracture and is now a full-time wheelchair user.]
  • Physiotherapy is not available for patients at any adult muscle management clinic in Wales. Only one single specialist respiratory physiotherapist attends the bi-monthly neuromuscular ventilation clinics in Cardiff;
  • Services exist across the border in England but some Local Health Boards are reluctant to fund referrals and services are therefore dependent on charitable subsidy;

    [Example: Five patients from Flintshire LHB attend the Neuromuscular Centre (NMC) in Winsford, Cheshire for specialist physiotherapy. Flintshire LHB refuse to pay for the treatment of these patients and the NMC picks up the funding.]
  • the situation is particularly difficult for young adults making the transition to adult services – their current physiotherapy is often immediately withdrawn as soon as they turn 16 - 18 years-old.

The Muscular Dystrophy Campaign's report Focus on Physiois the second stage in the Building on the Foundations campaign, launched last December, calling for a specialist neuromuscular service across the UK.

Questioning the Health Minister Ivan Lewis MP during the debate in the House of Commons Dr Hywel FrancisMP, said:

"Earlier today, I met Mr. Ray Thomas, who has been a carer for more than 40 years. He attended today's lobby and told me that he had not been to London for 49 years because of the intense care he and his wife have given to two sons, and now one surviving son, Leighton, who has the very rare condition of Becker muscular dystrophy.

"James, in my constituency, has Duchenne muscular dystrophy. Those families, including parents and grandparents, have enormous pressure placed on them, and when they have to travel great distances, the pressure is all the greater.

"Would you agree with me that when the Government, either in Wales or England, devise support assistance, the needs of the carers, particularly the parents and grandparents, have to be taken into account?"

Phil Butcher, Chief Executive at the Muscular Dystrophy Campaign, added:

"I am very pleased that we can count on the support of Dr Hywel Francis MPin the fight against muscle disease. Heis a strong voice in Parliament for local disabled people."

"It's ludicrous to force patients with long term conditions to be re-referred by their GP again and again for ongoing physio. Parents are also rightly concerned about their children's access to physio once they reach adulthood as it is often immediately withdrawn.

Dr Jill Higgins, Director of Practice and Development at the Chartered Society of Physiotherapists, commented on the need for physio for patients with neuromuscular conditions:

"Physiotherapy has a vital role to play throughout every stage in the treatment and management of the 60,000 people with neuromuscular conditions in the UK. Without it, mobility and independence can suffer and in some cases their condition can rapidly deteriorate. It is recognised that early and ongoing intervention of physiotherapy can also help reduce unplanned hospital admissions."

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 nearly 50 years and provides practical, medical and emotional support to people affected.

For interviews with local families or for more information about the work of the Muscular Dystrophy Campaign contact Sal Lalji at the press office on 020 7803 4844, mobile: 07971 151910 or email: [email protected]

Notes to Editors:

Nia Griffith MP FOR Llanelli secured an Adjournment Debate in the House of Commons on Wednesday evening, 14 May, about access to specialist services for sufferers of muscular dystrophy.

Responding, the Rt Hon Ivan Lewis, Minister for health said:

  • It is clearly unacceptable that there are still such large variations in care, and that access to specialist diagnosis, treatment and on-going care services can far too often still depend on where people happen to live;
  • I also want to take the opportunity to pay tribute to the Muscular Dystrophy Campaign. Over the past 40 years, it has ensured that the condition, which has not always had a high status or been taken as seriously as it should be, has been given a loud national voice;
  • As well as its campaigning role, the charity provides important information and advice to families in these circumstances. It provides part of the cost of equipment for patients and makes a significant contribution to research into the condition;
  • I welcome the fact that my hon. Friend the Member for Llanelli has brought to the attention of the House a crucial issue for a number of families in our country. I shall reflect on her contribution and I, or a relevant ministerial colleague, will meet her to discuss how we can improve the experience of the services for families and for people who have the condition.
  • The Rt Hon Alun Michael MP for Cardiff South & Penarth has tabled a cross party Early Day Motion 1553 about the report and its findings.
  • Focus on Physio was written by leading clinicians and physiotherapists and includes information following a Freedom of Information request, responses from almost 100 patient surveys as well as information from the latest research papers on the effects of physio for patients with neuromuscular diseases. Attached is a PDF of the report.
  • The Neuromuscular Centre (NMC) in Cheshire is a charitable organisation founded in 1990 and it is now part of the Muscular Dystrophy Campaign group. A core objective of the NMC is to provide ongoing physiotherapy for adults with neuromuscular conditions.
  • For further information about the Building on the Foundations Campaign please visit:
  • More than 60,000 people in the UK have muscle disease 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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