The MS Society Scotland said people who have a long-standing MS diagnosis are missing out on drugs that could slow down the progress of their illness
Too many people are still missing out on drugs that can slow down the progression of multiple sclerosis (MS) because the NHS doesn't review their health on a regular basis.
According to an MS Society survey of over 11,000 people across the UK with the condition, the number of people taking a disease modifying therapy (DMT) in Scotland has increased by 20% since 2013.
However, the MS Society Scotland, said those that have been diagnosed longest and who aren’t in contact with an MS specialist are still frequently missing out even though they could benefit from a disease modifying therapy.
With access to more disease modifying therapies than ever before, Scotland should be leading the way for providing eligible people with MS a treatment as close to diagnosis as possible - Morna Simpkins
Just 41% of people who have been diagnosed 10 years or more with relapsing MS are taking a DMT compared to 93% of people diagnosed within the last 12 months.
Relapsing MS is the most commonly diagnosed type of MS and it causes attacks of symptoms which then fade away either partially or completely. As well as slowing down disease progression, DMTs can reduce the severity and number of relapses.
The survey also found that 84% of respondents had not been offered a care plan by their health professionals.
Morna Simpkins, director of MS Society Scotland, said: “We welcome the news that the number of eligible people taking a DMT has increased by 20%. However, more than 11,000 people in Scotland have MS and there are still individuals slipping through the net when it comes to missing out on treatments that could improve their quality of life.
“With access to more disease modifying therapies than ever before, Scotland should be leading the way for providing eligible people with MS a treatment as close to diagnosis as possible.
“Alongside MS professionals we need to work closely to understand why people aren’t able to access the right treatment at the right time.”
As well as access to treatments, the report highlighted a number of issues affecting people with MS. On the back of this, the MS Society is calling for people with MS to be given a comprehensive review with an MS specialist at least once a year. It also says care plans should be offered to all people with MS and conversations about treatment options should begin as close to diagnosis as possible.
Professor Alasdair Coles, a member of the Association of British Neurologists, says: “MS is a long-term disabling condition and it is important that people with MS have sufficient time with their specialists to be able to make the decisions that are right for them. Unless we act now, barriers of long waiting times for appointments, inadequate resources, and variations in access to DMTs across the country will lead to avoidable harm to people with MS and will cost the NHS more in the long-run.”
MS is a condition of the central nervous system and is unpredictable – one day a person will be fine, the next they might lose their sight or be unable to move. People typically start experiencing symptoms in their 20s and 30s, which include fatigue, sight loss, incontinence and disability.
The MS Society’s Treat Me Rightcampaign is calling for people with MS to have access to the right treatment at the right time, no matter where they live.
