Services for people with muscular dystrophy are so poor they “compromise patient survival” according to MPs.
Sulaiman Khan is 24 years old, lives in Essex and loves anything with John Cleese in it. He is set to study a degree in advertising this autumn and volunteers regularly at his local charity.
He also has congenital muscular dystrophy, a condition that causes the body’s muscles to waste, and needs 24-hour care. At night, he needs to be turned over every 15 minutes to prevent his body aching.
“For 22 years my parents had to do everything,” he says. “Now that my condition has deteriorated having carers is a huge help and I don’t feel such a burden. But it was a fight to get it.”
Khan’s “fight” is familiar to many of the 60,000 people estimated to have some form of muscular dystrophyor neuromuscular condition in the UK.
Last month, a committee of MPs published a damning report on the state of the medical and social services charged with helping these people and their families.
The Walton report painted a picture of services so patchy that life expectancy rates vary from 30 years in the north east of England to 18 in the south west.
It complained of a lack of funding, an absence of any national guidelines and a deficiency of delegated responsibility. According to the report, there are just 13 named co-ordinators overseeing muscular dystrophy services throughout the country; to have enough, we’d need 60.
The report concluded in no uncertain terms that such inadequate service provision “compromises patient survival”.
Robert Meadowcroft is the director of policy and operations at the Muscular Dystrophy Campaign (MDC), an independent charity that gave evidence to the MPs’ inquiry. According to him, the system of care provision for this group is an “outrageous scandal”.
“If you have the misfortune to have cancer, or stroke or heart disease then a national service is in place to help you. But if you have muscular dystrophy, there is no named person responsible for your care. It’s difficult for patients to accept that they’re just not a priority.”
The Walton report did indeed support much of the MDC’s research. Last year the charity conducted a survey of over 850 of its members; the results were damning.
Over half of all respondents said that they faced delays and difficulties in getting home adaptations and wheelchairs, while two-fifths had experienced delays in receiving appointments with occupational therapists.
As for carers, over half said their needs were not being met; three-fifths said they had not received a carer’s assessment and over three-quarters had no access to respite care.
Facing up to the challenges of muscular dystrophy is no easy task. There are more than 60 types of neuromuscular dystrophy and related conditions under the umbrella term, ranging from mild forms to the most aggressive such as duchenne or congenital – as suffered by Khan.
There are no known cures or effective treatments for these genetically inherited conditions that waste the muscles of the body, but practitioners are optimistic about the results of a new set of trials due to be released in the next 12 months.
If these trials succeed in prolonging life expectancy, there will be major implications for social care.
“We’re keen to extend lives, but obviously that’s going to create a larger group of people in need of care,” says Meadowcroft. “It would be irresponsible to hand out the drugs without putting in place the necessary social service arrangements.”
At present, the NHS keeps no national records of changes in life expectancy for this group.
The only information we have is what the MDC has managed to obtain by trawling through the electronic death certificates for the East of England; between 2003-5, they show a drop in this group’s life expectancy from 22 to 20 years.
In Denmark, where muscular dystrophy sufferers have suitable accommodation, a right to transport and the option of live-in carers, life expectancy has risen to 40.
Talk to those with muscular dystrophy in the UK, and it is clear that social services in this country are very different. Despite his deteriorating condition, Khan has been living without a social worker for the last two years.
He chose to break off his relationship with social services after they failed to signpost him to available support, he says.
“Social services just added to mine and my family’s anxieties. They pushed me into a corner and imposed what they thought was best for me rather than what was actually best for me. It’s not surprising that so many people with muscular dystrophy have mental health issues.”
After a year of fighting, Khan was able to receive an alternative care package from his primary care trust.
But for 12 months he had to navigate his own way through a myriad of different agencies offering contradictory messages, and even had his benefits inappropriately cut off without notification – a problem that is familiar to a number of families contacting the MDC.
“The whole independent living agenda is a shark without teeth,” says Khan. “There is loads of legislation but there is no heart in it. I wanted social services to listen and assist me through the system, not always tell me what I can’t do.”
Khan believes that a system of direct payments placing him in charge of his own financing would give him and others with his condition a greater sense of control, but not all local authorities offer direct payments for those with muscular dystrophy.
However, Khan is reluctant to apply to his local authority because he fears that an assessment may lead to a retraction of the services he already receives. In such circumstances, he feels he is left with no option but to sit tight.
But for Khan, this doesn’t mean doing nothing. Despite his lack of support, he continues to fight for his independence and, through regular volunteering at the MDC, helps others with his condition do the same: “I want to continue volunteering as much as possible. I get fatigued very easily, but I feel it is my duty to give back as much as I am able. I’m excited about my prospects.”
East Sussex council
East Sussex Council is one local authority that is giving users with muscular dystrophy full control over the services they receive through direct payments.
The council is offering the full spectrum of direct payment models to guarantee flexibility for users. One model provides a one-off payment that complements the ongoing care plan, giving the user a grant that can be used for things such as alternative therapies, leisure activities or buying a computer.
Ros White, a social worker at East Sussex, says: “If you have a degenerative disease your needs can change a lot over six months or a year. So what you need at the time of your assessment might not be true at the time of your next one. Because direct payments are flexible service users’ support can change to what suits them best. Obviously we can provide unscheduled reviews but ultimately it is the client who has a better grasp on what is needed.”
While more traditional ways of delivering care can be static, direct payments means service can shift according to the client’s needs. As White says, “Personal care, such as hygiene or nutrition, stay pretty much the same week in week out and it is easier to plan services for these. But emotion and social needs can vary. The freedom to change resources from week to week, month to month or even season to season means people get what they need and when they need it.”
This article is published in the 24 September issue of Community Care magazine under the heading Fighting for a better life