Dr Brian Iddon MP supports moves to improve services for vulnerable patients

10th December 2007 

Dr Brian Iddon MP has lent his support to a House of Commons motion calling on the Government to improve services for vulnerable patients suffering from muscle disease. 

A report published 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 and the NHS to work with local clinicians and commissioners to ensure that patients with muscle disease have access to local specialised services.

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 and 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;

Dr Iddon said:

“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.”

“It is very disappointing that disabled people and their families can be expected to travel long distances just to gain access to the clinical care they need. Provisions should be made to help patients receive necessary treatment, not make life more difficult.”

“It is simply unacceptable that for some muscular dystrophies life expectancy can be halved, after diagnosis, depending on your postcode. 

Chief Executive of the Muscular Dystrophy Campaign, Philip Butcher said,

“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.“

2. Following the publication of the report “Building on the Foundations: Establishing a Specialist Neuromuscular Service across England” the Muscular Dystrophy Campaign, clinicians and patients will be 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;
• 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;
• Pay particular attention to those regions highlighted in this report where patient survival is reduced and services are failing;
• Recognise that services should be delivered by through specialised neuromuscular regional centres which also give support and clinical leadership to a network of local clinics;
• Ensure that these neuromuscular centres and clinics have specialised multi-disciplinary teams to provide all patients with a comprehensive level of care.

3. Dr Iddon signed EDM 451, Services for Patients with Muscular Dystrophy, the text of which can be viewed by clicking on this link http://edmi.parliament.uk/EDMi/EDMDetails.aspx?EDMID=34584&SESSION=891