Thousands of people with multiple sclerosis (MS) could be left behind as new NHS medicines emerge that are out of reach for many with the condition, the MS Society warns.
The charity estimates that a quarter (27,000) of all people with MS in the UK might begin taking a licensed ‘disease modifying’ drug (DMD) if care was consistent and all people with MS had access to appropriate information and support to make decisions about their care.
There are now nine MS drugs approved for use on the NHS, but thousands with MS are not taking any treatment and many are in the dark about the drugs that have the potential to alter the devastating impact of their condition.
The news comes as two new, innovative MS medicines have recently been approved for use on the NHS, and up to two more may follow within the next year. For the first time many of these new drugs offer people the chance to take a pill rather than injections, which could significantly improve quality of life for many with the condition.
One in four in the dark
A report released by the MS Society last year found 60% of people with relapsing MS in the UK were not taking a DMD, despite being eligible. New research released today has established 26% of people who had never taken a DMD had not even heard of any disease modifying MS medicines and many struggle to access regular support from health care specialists.
These are licensed medicines for people with relapsing MS that can reduce the frequency and severity of MS attacks and in some cases can slow the progression of disability.
Michelle Mitchell, Chief Executive of the MS Society said: “For too long, people with MS have faced significant barriers in accessing the treatments they need, the information to decide what’s right for them and the specialists who can help.
“New, effective medicines are emerging that could dramatically change the landscape of treatment for people with relapsing MS, but the years of research that led to their development will count for nothing if people can’t get hold of them.
“We’re worried the gap is widening between the best care some people receive and the worst care many more experience. There are people going years without any treatment at all, as their MS worsens, unaware there could be effective, new options out there for them.
“We understand the pressures the NHS is facing, but there are licensed medicines that can transform the lives of people with MS, and it’s frankly shameful that they are out of reach for so many.”
Information and healthcare professionals key to access
The MS Society’s research last year established that when people have access to healthcare professionals and adequate information, 69% are taking a DMD, when they didn’t have either, only 7% were on treatment.
Yet the charity’s survey, carried out during Nov – Dec 2013 among 1150 people with relapsing MS, revealed that 35% of people who have never taken a DMD had never discussed disease modifying treatments with their neurologist. Usually, neurologists are the only healthcare professional eligible to initiate a prescription.
The MS Society has warned that if nothing is done to improve access to treatments, thousands could be worse off as they struggle to manage their symptoms or continue to face serious and debilitating relapses – leaving them unable to work or more reliant on expensive NHS services.
To mark the start of MS Week today, the charity is launching the Treat Me Right campaign and calling for:
- People with MS to seek a review with a health care professional to discuss their treatment options
- MS Professionals to outline what they will do to help people make informed choices about treatments
Michelle Mitchell added: “People need to discuss their options carefully with a MS nurse or neurologist to ensure they’re making the right decision for them, whatever that may be.”
Multiple sclerosis is a neurological condition affecting more than 100,000 people in the UK, and is most commonly diagnosed in people between the ages of 20 – 40 years old. MS can get steadily worse, or remain unpredictable throughout people’s lives.
For more information on MS, or to read more about the campaign, go to www.treatmerightms.org.uk or call 0808 800 8000.