Welsh people with muscular dystrophy face dwindling services

From BBC News:

People in Wales with a muscle-wasting illness face deteriorating services despite a pledge by the health minister their care would improve, claim MPs.

The All Party Parliamentary Group on Muscular Dystrophy heard clinicians say vulnerable families were still being failed by gaps in NHS treatment.

Labour MP Alun Michael said many of the 3,000 people in Wales with the disease did not have services they needed.

The assembly government said work was already under way to improve services.

The parliamentary group said its report was being published 10 months after a personal commitment was made by Health Minster Edwina Hart that services for families living with muscular dystrophy (MD) would improve within one year.

It said families were due to meet Ms Hart in October, on the anniversary of her pledge, to show her that in fact, services had deteriorated.

The report found Wales has no MD care advisers - key workers who support patients with the disease - unlike in England, Northern Ireland and Scotland.

Rachel Salmon, a newborn screening nurse specialist, told MPs: "This is negligence and a lack of duty of care to these families.

"Families are given a devastating diagnosis, and then there is no family care officer in Wales unlike in Northern Ireland or Scotland.

"I am also responsible for cystic fibrosis. When we pick that up, they are referred straightaway to a cystic fibrosis centre wherever it is within Wales, and they designate a CF nurse to go out to the family to provide a service of support, knowledge and specialist care."

The report also found Wales has a depleting number of specialist staff providing care to families living with rare illnesses.

In his evidence, Dr Mark Rogers, a Cardiff-based consultant geneticist, said: "I have been told to stop running management clinics, seeing patients with muscle disease, because it is not seen as being part of the remit of genetics services and does not comfortably fit within their interpretation of the national definition.

"Also Dr Jane Fenton-May, one of my colleagues, will retire in April next year and as far as I'm concerned the service will completely implode because there will be one consultant doing part time work."

The document also said across the UK services were often so below standard that patients' wellbeing and survival were compromised.

Mr Michael, MP for Cardiff South and Penarth, said the Welsh Affairs Select Committee recently highlighted how children and adults in Wales with MD did not have the services they needed.

He said: "The parliamentary group in Westminster, as well as the new cross party group on muscular dystrophy in the assembly is now calling on Health Minister Edwina Hart to take urgent action to fulfil the promise that she made at a conference in Swansea last October that services would improve within a year."

Muscular Dystrophy Campaign Chief Executive Philip Butcher said he hoped the parliamentary report would "put pressure on the NHS to start providing the standard of care that these patients so dearly need and deserve".

He said: "The Muscular Dystrophy Campaign has been urging Health Minister Edwina Hart to improve this situation for a long time."

An assembly government spokeswoman said: "We cannot comment on a report we haven't yet studied.

"There is work already under way in Wales to improve muscular dystrophy services. This report will be used to help inform that work."