New research from the MS Trust surveyed over 1,800 people living with MS. It found that too many people living with progressive forms of MS feel they are getting a second class service, and many feel abandoned by their specialists.
People with progressive MS make up almost half of the UK’s 100,000 MS population. But 40% of them haven’t seen an MS specialist nurse in the past year and 45% haven’t seen a neurologist. By contrast, people with relapsing remitting MS see their specialists far more often. Worryingly, 12% of people with progressive MS haven’t seen any kind of specialist health professional in the last year, falling a long way short of NICE’s MS Quality Standard.
Multiple Sclerosis is a neurological condition that affects the nerves in the brain and spinal cord. It is a lifelong condition, and there are over 100,000 people living with the disease in the UK. Almost half of these have a progressive form of the disease, where symptoms get progressively worse over time. As yet there are no licensed disease modifying drugs (DMDs) that are effective for people with progressive MS.
Amy Bowen, Director of Service Development at the MS Trust said: “These findings demonstrate the urgent need for new thinking on ensuring equity in MS services. We need to assess the challenges facing MS teams, and develop new ways of delivering services that work for everyone living with MS, no matter what type of the disease they have.”
A worrying trend in the survey was the reported experience of people with secondary progressive MS being effectively ‘discharged’ from the care of their neurologist and even their specialist nurse when their disease became progressive. The following comments were made by people with secondary progressive MS in the survey:
“All of a sudden you get a feeling that you’re no longer on the radar and that, in some respect, you’ve been abandoned by those that were previously involved with you.”
“There is no treatment for people with progressive MS, but little awareness that, because of this, we need more, not less, intervention from healthcare professionals.”
“When I had relapsing remitting MS I was under the care of a neurologist and MS specialist nurse and took a DMD. Now that I am secondary progressive, I have been discharged from that care and referred to my GP – nothing else has been offered.”
“In my opinion once you are diagnosed with secondary progressive MS you are pretty much left to get on with it.”
However, many respondents spoke of how impressed they’d been with the care they received. MS specialist nurses were frequently singled out for special praise. But MS specialist services are facing complex challenges. MS Trust research has shown that there are not enough MS specialist nurses in the UK, and that many of the nurses in post are managing unsustainable caseloads. In turn, many people are left uncertain about the future of MS care. In fact, the survey reveals that 60% are pessimistic about the future of MS services.
The MS Trust is working with NHS managers, MS teams and people with MS across the UK to understand the new challenges facing specialist services and to develop new ways of working to ensure everyone living with MS can access the best possible care, no matter what form of the disease they have.
To find out more about the work of the MS Trust, how they can help you and how you can get involved visit www.mstrust.org.uk