Campaigning mum battles for services for her son
9 July 2012Jane Field is a keen supporter of the charity and has been involved in campaigning as one of the founding members of her local Muscle Group.
Jane's son, Murray (14) has Duchenne muscular dystrophy. He is one of more than 6,000 people in the West Midlands living with muscular dystrophy or a related condition, who desperately need a better level of care for their condition. Improved specialist healthcare services could possibly extend Murray's life and those of other children who have been diagnosed with these conditions.
Jane and other families like hers have campaigned for funding for local health services to provide more specialist consultants and regional care advisors. When the West Midlands Muscle Group began campaigning, there was just one care advisor working with all of the 5,500 patients in the region with muscular dystrophy and related conditions. The care advisor role is vital in co-ordinating care and advising on equipment.
Conscious of her son's future needs, and highlighting the alarming gap in services when Murray will make the transition to adult services, Jane 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."
The West Midlands Muscle Group is a local campaigning group started by the charity and run by families. Its members, such as Jane, campaign for improvements in services and believe that their efforts are delivering results by forcing improvements in access to essential NHS services for the families affected by muscular dystrophy and related conditions in their region.
Jane campaigned with other families to improve specialist healthcare, following the charity's Invest to Save report, which revealed an alarming lack of specialist multi-disciplinary care for people living muscular dystrophy and related conditions. She became involved with campaigning with the charity because of the direct impact this has had on her own family.
As a founding member of this Muscle Group, Jane said:
"Murray was misdiagnosed by two separate paediatricians, and that delayed all aspects of his treatment. We didn't find out he had Duchenne muscular dystrophy until he was seven and a half, after much pushing from us as parents.
"He lost out on almost four years that he could have been taking steroids to slow down his muscle deterioration. This meant he ended up in a wheelchair sooner, and we know that the sooner a boy with Duchenne muscular dystrophy ends up in a wheelchair, the shorter his life expectancy is. "
The Muscle Group was able to campaign successfully for the approval of a £400,000 investment in neuromuscular services. Jane described this as "a good start, and from small seeds big trees grow. But we need even more money to give us a good service. People think we want a Rolls Royce of services but we don't - we just want a decent service that provides at least the basic care our son needs."
It is important for other families to get involved. By joining Jane and other Muscle Group members, more people can campaign for improvements in specialist healthcare services for people affected by muscular dystrophy and related conditions. Contact the Campaigns Team to join and find out more about your local Muscle Group: 020 7803 2853 or campaigns@muscular-dystrophy.org
Comments (1)
We have a daughter with muplitle and profound disabilities. Oxfordshire is cutting her care budget 40%. They are threatening to force her to move to different and much cheaper care home against her consent. They are taking away her budget for support to leave her home. The DWP is cutting her Incapacity Benefit (Disabled Living Allowance) and cut her mobility benefit. She will become a prisoner in some dreadful place where no body knows her or understands her.Meanwhile the government is allowing top executive salaries to rise and bankers to keep their obscene salaries and bonuses.