A sizeable minority of people living with multiple sclerosis (MS) are at risk of being forgotten by the NHS, the MS Society has warned.

The charity is concerned about a widening divide opening up between people with MS who are in the know about their treatment options, and those who aren’t seeing health professionals and are missing out on treatments that could significantly improve their lives.

According to a survey of over 11,000 people with MS, as many as one in ten of those with relapsing MS haven’t seen an MS nurse or neurologist for over a year [1]. Relapsing MS is the most commonly diagnosed type of MS and it causes attacks of symptoms which then fade away either partially or completely [2]. 

Among this group, just 12% are taking a disease modifying therapy (DMT) which could reduce relapses and slow progression of the condition [3].  In contrast, among those who saw both an MS nurse and a neurologist within the last year, 73% are taking a DMT.

Michelle Mitchell, chief executive of the MS Society, said: “There are more than 100,000 people living with MS in the UK and potentially thousands of them who could benefit from a DMT have not seen a neurologist or specialist nurse in the last year or more; these people risk being forgotten by the NHS. 

“For too long many parts of the NHS has adopted, by default, an approach where people are sent away from medical appointments and told to ‘wait and see’ if their condition worsens. But there are more treatments available today than ever before, and experts now agree that people should be treated close to diagnosis. We can’t let this forgotten minority be left behind – we need to work closely with MS professionals to understand why people aren’t able to access the right treatment at the right time, despite them being proven to be cost effective and improve health outcomes.” 

In line with guidelines from the National Institute for Health and Care Excellence, the MS Society is calling for every person with MS to be offered a review of their treatment and care by an MS specialist at least once a year. Reviews could be led by professionals with experience in MS who draw knowledge from health professionals of various backgrounds and areas of expertise such as physiotherapists, occupational therapists, speech and language therapists, and continence advisors. Referring people to these relevant specialists could also help to relieve pressures on neurologists and MS nurses. 

Professor Alasdair Coles, Chair of the Association of British Neurologists MS Advisory Group and Professor of Neuroimmunology at the University of Cambridge, said: “MS is 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.”

Andy Ellis, 48, from Northampton says he saw a neurologist when he was first diagnosed with MS last July, but has had no contact since. His next appointment isn’t until November. “I wasn’t told about treatments when I was first diagnosed, and I’ve had three relapses since. Each relapse was terrifying as I didn’t know what was going on or how to cope. I have lots of health problems – back pain, foot drop, pins and needles, hearing loss, sight loss – but I don’t know if they’re due to my MS as I haven’t been able to see my neurologist. I would love to know if any of my symptoms could be alleviated by DMTs and I’m worried that I’m missing out.” 

Overall, 56% of people with relapsing MS in the UK are taking a DMT – an increase from 40% in 2013 when the MS Society last did a survey of this kind. But people with MS continue to face an unacceptable lottery of treatment, care and support. For example, people diagnosed with the condition more than ten years ago are less likely to see an MS nurse when they need to compared to people diagnosed more recently. Access to DMTs is also variable – people with MS are more likely to access a DMT in Northern Ireland (77%) than in Wales (49%). Access to these treatments also varies greatly within nations too.

MS is a condition of the central nervous system and is unpredictable – one day you’ll be fine, the next you might lose your 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 Right campaign is calling for people with MS to have access to the right treatment at the right time, no matter where they live. 

See more at: www.mssociety.org.uk/accesslottery

[1] 645 out of 6097 respondents

[2] Around 85% of people with MS in the UK are diagnosed with relapsing remitting MS

[3] 76 out of 645 respondents