MP Probes Health Minister On Services For Vulnerable Patients, UK

Main Category: Muscular Dystrophy / ALS
Article Date: 09 Jul 2008 - 0:00 PDT

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On Wednesday 2 July local MP Dave Anderson, Chair of the All Party Parliamentary Group for Muscular Dystrophy, intervened during an urgent debate in the House of Commons on Duchenne muscular dystrophy forcing a commitment from Health Minister, Dawn Primarolo MP, to a meeting about service provision for people with the condition.

During the debate, Dave Anderson MP highlighted the real difficulties facing patients with Duchenne muscular dystrophy and other related neuromuscular conditions in accessing specialist services across the UK. He called on the Government to support more research into finding a cure for these conditions and to ensure that every patient in the UK has timely access to diagnostic services, treatment and therapies.

It is estimated that 1 in every 3,500 boys born in the UK will be affected by Duchenne muscular dystrophy. At any one time in the UK around 1,500 boys will be affected by the condition.

Dave Anderson MP's intervention follows the recent publication of a series of reports by the Muscular Dystrophy Campaign, as part of its Building on the Foundations campaign, which provides evidence that patients with muscular dystrophy are faced with a fragmented, sub-standard system of care and being denied ongoing physiotherapy by the NHS.

Intervening in the debate, Dave Anderson MP said:

"We are not sharing good practice on how to care for these boys. We are not sharing good practice on physiotherapy, on how to help them to breathe properly, or on how they can get access to wheelchairs, which can make a massive difference to their lives. A recent report by the Muscular Dystrophy Campaign highlights that."

"We must put this right. I ask the Minister to meet me and the representatives of the campaign to go through the report, because it is very clear that commitments that we have been given over the past three years that good practice on care would be shared have not been met."

Responding to calls from Dave Anderson MP, Health Minister, Dawn Primarolo said:

"Three hard-hitting reports published by the Muscular Dystrophy Campaign on the provision of neuromuscular services for all the dystrophies highlighted significant variations that exist across localities.

"I welcome the debate and I know that …my hon. Friend the Member for Blaydon understand the complexities and challenges. I share their desire to see that people living with DMD receive the services and treatment that they need and deserve and I can assure them that the Government will continue to provide support and encouragement to ensure that that happens. I would be more than delighted to meet the hon. Gentleman and my hon. Friend together with a delegation - they both referred to a small delegation - to continue the discussions on the issues."

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

"I am delighted that we can count on the support of Dave Anderson MP in the fight against muscle disease and to improve services for boys with Duchenne muscular dystrophy. Dave Anderson is a strong voice in Parliament for local disabled people.

"Too many patients across the UK are being denied timely access to essential specialist care and I am pleased that these issues are being raised with the Minister."

The Muscular Dystrophy Campaign, clinicians and patients are calling on the Government and the NHS to:

- 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;

- Ensure that a multidisciplinary service is in place for the care of patients with muscular dystrophy and related neuromuscular conditions;

- Designate specialised neuromuscular services within the Department of Health's Specialised Services Definition Set so that Specialised Commissioning Groups (SCGs) strategically plan for these services across England;

- Press SCGs to ensure that specialised neuromuscular services are firmly embedded in their region of England in order to overcome current fragmentation, weakness and vulnerability;

- Ensure that all people, children and adults with a neuromuscular condition be offered and have access to ongoing and timely physiotherapy when they need it

The Muscular Dystrophy Campaign's latest report Focus on Physio is the second stage in the Building on the Foundations campaign, launched in December 2007, calling for a specialist neuromuscular service across the UK.

To read the full debate in the House of Commons please visit: http://www.publications.parliament.uk

Muscular Dystrophy Campaign