Determined Droitwich mum calls for better healthcare for disabled son (From Droitwich Advertiser)

Determined Droitwich mum calls for better healthcare for disabled son

2:17pm Monday 8th February 2010

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A CAMPAIGNING Droitwich Spa mum is phoning every Primary Care Trust chief executive in the region to demand better healthcare for her disabled son and thousands of patients like him.

Jane Field’s son Murray, 12, is one of the 5,500 people in the West Midlands living with muscle disease who desperately need a better level of care for their condition. Jane believes that improved services could extend Murray’s life.

Following a major NHS review of services, the region’s health bosses are currently in talks to decide whether they will sign up to invest £1.2 million in muscle disease healthcare.

The West Midlands spends £6.6million a year in emergency hospital admissions for muscle disease patients, but if the Primary Care Trusts (PCTs) agree to invest, these hospital admissions and the money spent on them could be dramatically reduced.

The new investment works out at a cost of just £4.36 per muscle disease patient each week.

Jane Field from Droitwich has taken matters into her own hands and is personally calling each of the 17 PCT chief executives in the West Midlands to ask if they will be investing in muscle disease care.

Jane’s son Murray has Duchenne muscular dystrophy, a life-limiting form of the disease. He was also recently diagnosed with osteoporosis.

She said: “I have to look to the future and make sure as a mum that I do the best I can to ensure that when Murray makes the transition to adult services at 19, the care is there for him. It’s such a fragile service at the moment, we have no one to take over from the few staff we have when they retire.

“If I don’t start this now, by the time Murray is 16 or 17 there will be no service for him. People think it’s still ok to be starting treatment on boys with Duchenne muscular dystrophy when they’re 20, but they don’t get that this is a time bomb and it’s going to cost the NHS a fortune in emergency hospital admissions if they don’t provide preventative care early enough. It’s a no brainer as far as the investment is concerned. To not be doing this already is barmy.”

The money Jane and other families like hers are looking to have invested into local health services would go towards funding more specialist consultants and regional care advisors. The West Midlands has just one care advisor working with 5,500 muscle disease patients and is a vital role in coordinating care and advising on equipment.

Jane explained the effect this investment would have on families living with muscle disease: “This investment would impact heavily on my son’s longevity and quality of life. He has every chance of living into his third decade with the right care, as boys do in Denmark where they have the proper treatment for Duchenne muscular dystrophy.

“It’s not just that people will die if they don’t get the right care, it’s also about their quality of life while they’re living.”

Jane has already called her local Worcestershire PCT who spent £488,000 on emergency hospital admissions last year, over four times as much as they are being asked to contribute towards the muscle disease care investment.

To find out more about muscle disease healthcare in the West Midlands and the work of the Muscular Dystrophy Campaign go to www.muscular-dystrophy.org.

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