People living with muscular dystrophy will now have greater access to care advisors to help co-ordinate their care and provide information, advice and guidance on equipment, services and sources of funding.
A total of nineteen care advisor posts have been established across the UK. Eight are brand new roles that have been created by the NHS, while the remaining eleven were previously fully or part funded by the charity the Muscular Dystrophy Campaign, although health services have now agreed to pick up the the bill.
The decision to increase the number of advisors follows Lord Walton’s 2009 Report into services for muscle disease which found that many people did not have access to an advisor or had to travel long distances to see one. In response to the Report, Regional Muscle Groups of patients and families were set up to campaign for better care.
“We are absolutely delighted at these nineteen care advisor posts being either created or funded by the NHS. They will make an enormous difference to the lives of muscle disease patients and their families in these regions”, said Nic Bungay of the Muscular Dystrophy Campaign.
However, cover across the UK is still patchy, with some regions not being served by an advisor. “It is unacceptable that there should still be regions with no care advisor at all and that Welsh patients should have to travel to England for a basic point of contact,” said Mr Bungay.