Monday 24 August 2009
Walton report launch: MPs and Peers call for urgent action
The All Party Parliamentary Group on Muscular Dystrophy heavily criticises the way in which the NHS plans services for rare conditions, following an in depth investigation, which took evidence from key clinicians, researchers, patients and NHS commissioners from across the UK.
Lord John Walton, a leading international figure in medical research and instrumental in initiating the enquiry, said:
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.
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.
Having called for immediate guidelines to be set in place for muscular dystrophy, the group has presented the report to the Chairman of NICE at a meeting at The Royal College of Physicians today.
Dave Anderson MP, Chair of the Group, who has spearheaded the Inquiry, said:
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:
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.
Take a look at BBC news coverage of the report and its findings