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
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
[Example: One patient in Colwyn Bay has found parts of
- Many patients in
[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
- Services exist across the border in
[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
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
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
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:
www.muscular-dystrophy.org/campaigns/building_on_foundations/index.html
- More than 60,000 people in the
- 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.
