Local MP supports fight to improve services for vulnerable patients
3rd June 2008
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
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, questioning the Health Minister Ivan Lewis MP and said,
'Earlier today, I met Mr. Ray Thomas, who has been a carer for more than 40 years. He 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 Haymer, 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?'
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: http://www.muscular-dystrophy.org
- 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.
