Phillip Anderson, Head of Policy at the MS Society UK, describes the need to improve multiple sclerosis treatment, care & support, including access to disease modifying therapies
Over 130,000 people live with multiple sclerosis (MS) in the UK. The condition damages nerves in the body and makes it harder to do everyday things like walk, talk, eat and think. Living with MS can be relentless, painful and disabling, but many are not receiving the vital multiple sclerosis treatment and support they need.
Across the UK, there’s a workforce crisis in neurology. Services have been overstretched, underfunded and overlooked for years – and since the pandemic, things have gone from bad to worse. Recent stats from the Neurological Alliance – a coalition of 70 organisations including the MS Society and Parkinson’s UK – found more than half of adults (55%) are experiencing delays to a routine neurologist appointment.
We work closely with neurologists and other healthcare professionals, and know they’re doing their absolute best to support people with MS. But the reality is there are simply not enough of them.
Disease modifying therapies (DMTs)
These delays are having a worrying impact on access to disease modifying therapies (DMTs). These are treatments that can reduce how many relapses a person has and slow down the progression of their MS. But if you can’t get an appointment with your neurologist, how are you going to start on a treatment?
We are deeply concerned to learn that, according to NHS figures, only 5% of eligible people with MS are accessing siponimod (brand name Mayzent®). This is the first and only oral DMT available for the secondary progressive form of MS – which means many are going without any treatment.
Siponimod was approved for use on the NHS in England by the National Institute for Health and Care Excellence (NICE) in November 2020, following campaigning by the MS Society after it was rejected earlier that year. But nearly two years on, the latest prescribing data shows as few as 500 people out of an estimated 11,000 deemed eligible are on the treatment.
“Together with the Neurological Alliance, we’re calling on people across the UK to sign a petition to all UK Health Ministers, urging them to set up the first Neuro Taskforce to establish plans to improve treatment, care and support for people affected by neurological conditions. This, in turn, would help to address the issues which limit access to treatments, such as health workforce shortages and growing waiting lists.”
The approval of siponimod was a real breakthrough
While there are now over a dozen licensed DMTs for people with the relapsing form of MS, there are still very few options for people with progressive forms of the condition. So, the approval of siponimod was a real breakthrough moment for the MS community.
However, while this marked a real step forward, it has placed new demands on already stretched neurology services. Healthcare professionals don’t have the capacity to identify new patients who could benefit from the drug. And long waiting times mean it’s a struggle for people to see their neurologist and ask about the treatment.
These issues don’t end with siponimod. Ocrelizumab is the only approved DMT for the primary progressive form of MS, yet NHS data shows that only a quarter of those eligible are being treated with it.
Improving multiple sclerosis treatment, care and support
MS is an unpredictable condition, and once diagnosed it stays with you for life. But we know that fast, timely access to treatment can make a significant difference to a person’s quality of life. Therefore, it’s completely unacceptable that so many patients are being forgotten, overlooked, and left with nowhere to turn.
Of course, the pandemic has created real challenges for the NHS in a range of different areas. But the chronic under-investment in neurology before the pandemic left it especially vulnerable to these challenges – and means that improvement is desperately needed now.
This has already gone on too long. We need to see urgent action now. The UK Government must do more to protect people with MS from long-term progression of their condition by providing additional funding and support.
That’s why, together with the Neurological Alliance, we’re calling on people across the UK to sign a petition to all UK Health Ministers, urging them to set up the first Neuro Taskforce to establish plans to improve treatment, care and support for people affected by neurological conditions. This, in turn, would help to address the issues which limit access to treatments, such as health workforce shortages and growing waiting lists.
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