'NHS Failures Lead To Premature Deaths And Shocking Treatment Of Vulnerable Families' - MPs And Peers Call For Urgent Action, UK
Lord John Walton, a leading international figure in medical research and instrumental in initiating the enquiry, commented on the findings of the Walton Report:
"Having specialised in neuromuscular conditions since the 1950s I have a personal interest in the level of health and social care services available to those living with these difficult conditions.
"I have been appalled by much of the evidence heard by the Group. The evidence in the report clearly shows that a commitment to develop a national neuromuscular service - supported by specialist commissioning in each NHS region - is urgently needed.
"Research and care have come a long way over the last five decades, however it is clear that this progress is not being widely transferred to these vulnerable patients. The NHS system for specialised commissioning is failing very many patients across the country."
Having called for immediate guidelines to be set in place for muscular dystrophy, the group will today be presenting the report to the Chairman of NICE at an urgent meeting being called at The Royal College of Physicians.
The report exclusively reveals:
- Shocking differences in life expectancy, with boys with Duchenne muscular dystrophy living up to 30 years of age in the North East, but lives are limited to 17 and 18 years in other regions;
[In his evidence, Prof Michael Hanna, Chair of the British Mycology Society argued that this 'postcode lottery' would cause a national scandal if it concerned a rare form of cancer, but that conditions like muscular dystrophy are allowed to slip through the net.]
- The NHS is relying far too heavily on charitable funding for key worker posts - which should be paid for by the NHS;
[The Muscular Dystrophy Campaign is currently funding a number of such posts across the UK - a practice the charity says cannot continue after next year due to the heavy hit the charity has taken from the recession.
One such Care Advisor powerfully demonstrated to the Group the importance her role has on NHS and social services, explaining that she has approximately 450 clients and carries out a variety of vital roles including: providing advice and support on a range of issues, signposting clients to services, running information days, conferences and family weekends. She also provides advice and training to healthcare professionals who know little about muscular dystrophy.]
- Patients and their families are forced to pay for vital physiotherapy - something unheard of in many other European countries;
[Professor Volker Straub from the Newcastle Muscle Centre told the Group that in contrast to the UK, where it is difficult for adults to gain access to physiotherapy on a long term basis, patients in other European countries would have access to this treatment for the rest of their lives.]
- Unacceptable delays in the provision of wheelchairs and essential equipment necessary to ensure a good quality of life and to maintain independence and dignity. Many families are forced into financial hardship or to appeal to charities for help to purchase such vital equipment;
[This 'postcode lottery' is illustrated when, in one part of England the average wait for a powered wheelchair was found to be two and a half years, whilst in other areas as little as three months.]
These shocking findings are being presented today to Sir Michael Rawlins, the Chairman of the National Institute for Clinical Excellence (NICE). Although NICE guidelines exist for many neurological conditions, such as Parkinson's disease and MS, there are no current guidelines for muscular dystrophy, something that is criticised in the Walton Report.
Dave Anderson MP, Chair of the Group, who has spearheaded the Inquiry, said:
"Muscular Dystrophy is a devastating condition as I know all too well, losing both my brother and sister to the disease.
"It is very clear that the standard of care provided to these patients by the NHS is often inadequate and not acceptable.
"The Walton report shows an urgent need for NHS Specialised Commissioning Groups to recognise muscular dystrophy as a condition within their remit and to provide adequate services to patients in their region.
"It is totally unacceptable that there are no NICE guidelines available for muscular dystrophy - a condition that affects 60,000 babies, children and adults in the UK."
Philip Butcher, Chief Executive of the Muscular Dystrophy Campaign, said:
"I am delighted that Members of Parliament have drawn attention to the terrible services available in many parts of the country for muscular dystrophy patients and are publicly acknowledging today that the current state of care is totally unacceptable.
"The Muscular Dystrophy Campaign has been urging the Department of Health, ministers and leading NHS officials to improve this situation for a long time. I hope that the Walton Report will help to put pressure on the NHS to start providing the standard of care that these patients so dearly need and deserve."
The All Party Parliamentary Group has called for:
- A named Muscular Dystrophy lead who is responsible for service development in each of the ten NHS Specialised Commissioning Groups in England and the three devolved countries;
- The Department of Health to recognise neuromuscular services as specialised;
- The establishment of a NICE clinical guideline for muscular dystrophy;
- An urgent review of workforce needs and professional development;
Muscular Dystrophy Campaign
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