PATIENTS with a type of multiple sclerosis have raised concern they are getting a second class service in a new report.
A survey of 1800 people living with the condition across the UK found many suffering progressive forms of the illness feel abandoned by their specialists.
The research by the MS Trust found 40% of them hadn’t seen an MS specialist nurse in the past year and 45% hadn’t seen a neurologist. By contrast, the trust say people with the relapsing remitting type of MS see their specialists far more often.
The survey also revealed 12% of people with progressive MS hadn’t seen any kind of specialist health professional in the last year, falling short of official quality standards.
Multiple Sclerosis is a neurological condition that affects the nerves in the brain and spinal cord. There are more than 100,000 people living with the disease in the UK and it is particularly associated with Scotland. Almost half the patients have a progressive form of the disease, where symptoms get progressively worse over time.
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.”
Comments from those who responded to the UK-wide survey, include: “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.”
However, many respondents spoke of how impressed they’d been with the care they received with MS specialist nurses frequently singled out for special praise.
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