MP’s support for vulnerable patients
Local MP, Dan Rogerson, has sponsored a House of Commons motion calling on the Government to improve services for vulnerable patients suffering from muscle disease. It is estimated that 1 in 1000 people in his North Cornwall constituency are affected.
A report published this week by a group of leading clinicians, in conjunction with the Muscular Dystrophy Campaign, reveals that patients with neuromuscular diseases are faced with a fragmented, sub-standard system of care, with significant variations in survival across the UK.
The report also calls on the Government to work with local clinicians and commissioners to ensure that patients with muscle diseases have access to specialised services near to their homes.
Key findings from the report, Building on the Foundations: Establishing a Specialist Neuromuscular Service across England, reveal:
· Survival for patients with Duchenne muscular dystrophy is an average of 18 years in the South West compared to 30 years in the North East;
· Patients do not receive specialist multi-disciplinary care with two out of three PCTs failing to support a muscle clinic for either adults or children, as found in an FOI request;
· Inequality of access to specialist care across different regions in England leads to a ‘postcode lottery’ for patients.
· Some being forced to travel long distances just to receive the specialist care they need;
· Patients are not receiving an accurate diagnosis, a precise genetic diagnosis or accurate advice regarding prognosis and transmission risk;
Commenting on the report’s findings, Dan Rogerson MP and member of the All Party Parliamentary Group for Muscular Dystrophysaid:
“Expecting disabled people and their families to travel long distances just to gain access to the clinical care they need is very disappointing and simply unfair. Provisions should be made to help us all receive necessary treatment, not make life more difficult.”
“It is simply unacceptable that life expectancy for conditions such as Duchenne muscular dystrophy can be halved, after diagnosis, depending on your postcode.”
“It is essential that the Department of Health recognise the specialist nature of the care needed by patients with neuromuscular conditions and ensure that such services are available to all patients, regardless of where they live.”
Chief Executive of the Muscular Dystrophy Campaign, Philip Butcher, added:
“Specialist care is essential in extending life expectancy and yet it is being denied to many patients. Too often specialist care is vulnerable and heavily dependent on a handful of leading clinicians with a research interest in this field, rather than embedded in a properly resourced, long term service.“
“I’m delighted that we can count on Dan Rogerson’s support in the fight against muscle disease. He is a strong voice in Parliament for local disabled people.”
Notes to Editors:
· 1 in 1000 people in England have muscular dystrophy or a related muscle disease. A further 150,000 people are affected indirectly as parents, siblings 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
· 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 over 47 years and provides practical, medical and emotional support to people affected.
· For interview requests, relevant case studies or for a background briefing please contact the press office: Sal Lalji on 0207 803 4844, mobile: 07971 151910 or email: s.lalji@muscular-dystrophy.org
· Dan Rogerson MP is co-sponsor of the following Early Day Motion:
Services for patients with Muscular Dystrophy
That this House welcomes the publication of a new report by leading neuromuscular clinicians, Building on the Foundations, is concerned that it reveals significant geographical inequalities across England in access to health services for patients with neuromuscular conditions; regrets that specialist neuromuscular centres exist in only four regions and that survival for patients with neuromuscular conditions is severely affected; notes that care from a multidisciplinary team improves patient outcomes, is disappointed that many patients in England do not receive such multidisciplinary specialist care; calls on the Department of Health to recognise neuromuscular services as a specialist service and urges the Department of Health to work with commissioners and health professionals to improve current service provision across England to ensure improved standards of care for all patients with neuromuscular conditions.
