Eleanor Burnham

Welsh muscle disease healthcare worst in the UK

Welsh muscle disease patients are getting a worse healthcare service than anywhere else in the UK, according to a report published earlier this week.

The Thomas Report, the result of a nine-month investigation into muscle disease services for Wales, highlights some shocking gaps in healthcare and makes recommendations for how patients' lives could be improved, and even in some cases extended. Patients in North Wales are forced to travel long distances to hospital appointments in England because there are no specialist muscle disease consultants in the region.

Problems Welsh muscle disease patients are facing that are highlighted in the Thomas Report include:

Wales is still the only country in the UK not to have a care advisor, a vital post in co-ordinating care and offering specialist support and advice to families. The NHS have agreed to fund two, but they are still not in post

Wales is the only country to offer a newborn screening service for some forms of muscular dystrophy, but has no follow-up care leaving families to cope alone with a bombshell diagnosis

there are no specialist physiotherapists for muscle disease patients, essential in keeping their muscles working for longer

the transition from paediatric to adult services is difficult because of a lack of specialist staff and services

the report recommends a £470,000 investment in muscle disease services which would save NHS Wales £3.92 million a year in unplanned emergency hospital admissions for muscle disease patients.

Earlier this year NHS Wales committed to funding two care advisors, one in North and one in South Wales, but neither is yet in post meaning families are still struggling on alone. Even if they were in post, there would still be just two advisors to see 3,500 Welsh patients, many of whom would have to travel long distances for an appointment.

Joanne Williamson from Ruthin has an 11-year-old son, Owen, with limb girdle muscular dystrophy, a progressive muscle-wasting disease. She said:

"We have to travel to Alder Hey Hospital in Liverpool to see our consultant which is an hour and a quarter's drive. We're lucky that it's closer for us - for families living further across North Wales or over in Anglesey, it could take three hours to get there. If I had to get a bus or train to Alder Hey, to be honest I wouldn't go.

"We're lucky that we have a car to get to appointments and internet access to keep up to date with any information about the condition. For lower income families it's very difficult. We need to speak out for everyone who needs a better muscle disease service."

At a meeting of the Cross Party Group earlier in the year, a Liverpool care advisor, Shirley Crosby, talked about the benefit of care advisors which Welsh patients currently do not see. She meets some families from North Wales at her clinics in Liverpool, who have travelled long distances across to England to see her.

Shirley Crosby said:

"We feel it is absolutely vital for families to have a care advisor service and we feel really bad that patients in Wales don't have this service. When families come across to Liverpool for appointments, we feel bad that we can't give the same level of support to families from North Wales as families from the North West. That frustrates us - we can only give telephone advice and support for patients in Wales."

Welsh Liberal Democrat Assembly Member for North Wales, Eleanor Burnham AM said:

"I look forward to presenting the Thomas Report to Health Minister Edwina Hart with these patients. Families are desperate that action is taken as today's report reveals shocking gaps in specialist care for vulnerable patients in North Wales.

"It was clear from the evidence gathered throughout the Inquiry that specialist care can reduce emergency admissions. Health Boards in North Wales must recognise this - by working together and sharing the costs of a neuromuscular service, the NHS can save money."

The Muscular Dystrophy Campaign is also backing the report and its recommendations, so that Welsh families will not have to struggle to get a basic level of care locally.

Head of Policy and Campaigns at the Muscular Dystrophy Campaign, Nic Bungay, said:

"Welsh muscle disease patients are currently faced with the worst neuromuscular services of any country in the UK.

"It is unacceptable that a patient in North Wales should have to make a journey many hours long across to England if they want to see a specialist about their condition. Welsh muscle disease services are shameful and we urge NHS Wales to take up the Thomas Report's recommendations which could improve and in some cases even extend patients' lives."

ends

The Muscular Dystrophy Campaign is the leading UK charity focusing on muscle disease. It has pioneered the search for treatments and cures for over 50 years, and is dedicated to improving the lives of all children and adults affected by muscle disease.

It funds world-class research to find effective treatments and cures; provides free practical and emotional support; campaigns to raise awareness and bring about change and awards grants towards the cost of specialist equipment, such as powered wheelchairs.

Notes to Editors:

More than 70,000 babies, children and adults in the UK have muscular dystrophy or a related condition. A further 350,000 people are affected indirectly as family, friends or carers.

Muscle diseases cause muscles to waste and weaken making it hard for those affected to do even the simplest of tasks. The conditions don't just affect the muscles in the arms and legs but the heart and respiratory muscles too. There are no cures and many affected children don't live to reach adulthood.