Today is World MS Day and, to a degree, it is a time for celebration. When you look back over the history of the condition, the progress we have made is immense. In the last 20 years, we have seen 13 new treatments for relapsing multiple sclerosis (MS) available on the NHS, with ever more and exciting breakthroughs on the horizon.
But a new report released today from the MS Society suggests that this volume of options, coupled with fears around side effects, and a lack of quality treatment advice, could have a negative impact on the long-term health of people with MS.
Because while the breadth of treatment options available today is a marker of true progress, it also means that many people with MS can find making a decision about treatment very difficult. Some report feeling well supported, but others describe the world of disease modifying treatments (DMTs) as ‘complex’, ‘scary’, and ‘overwhelming’. Because although it’s vital people with MS have access to a range of treatment options, so they can find what best suits their needs and lifestyles, many still need help to navigate their options.
MS affects more than 100,000 people living in the UK. The condition is often painful and exhausting and can cause problems with how we walk, move, see, think and feel. Most importantly, it’s unpredictable and different for everyone – which can create additional challenges when it comes to helping individuals manage their condition. Making a decision about treatment is as individual as every person with MS.
Our research – which was commissioned so we could better understand how to help people with MS understand their treatment options – suggests that some people with MS don’t feel they have enough support to make an informed decision about treatment. They want more and better information, and this is the responsibility of everyone in the MS community to help provide. Whether you’re a healthcare professional, service provider, or charity like us.
Dr Eli Silber is a Consultant Neurologist at Kings College Hospital. On reviewing the report, the MS specialist commented: “If people with MS are saying they don’t understand the options for treatment, this indicates a fundamental flaw in our system – and one that needs urgently addressing. Healthcare professionals need to be supported to make the most of their conversations with people with MS, but that often means freeing up capacity in the health and care system. Until then, we can all play our part in making treatment decisions a little smoother and more straightforward. It could be the difference between a person managing and living well with MS, and them really struggling.”
Evidence proves that early treatment is absolutely vital in managing MS, helping to reduce attacks and even slow progression of disability. But of the more than 100,000 people in the UK who live with MS, only 56% who could benefit from a DMT are taking one. Additional research from the MS Society shows that when people with MS feel well informed about treatment options, and have access to an MS nurse and a neurologist, access to treatment improves significantly (from 12% to 80%).
Andy, 48, from Northampton, was diagnosed with the relapsing form of MS in July 2015. He said: “I’m on treatment now, but when I was diagnosed I went a year without even seeing a neurologist. My understanding of MS was so limited that when I had three relapses I didn’t know what was going on, it was terrifying. I was having back pain, foot drop, pins and needles, hearing loss, sight loss… But I didn’t know they were due to MS and I didn’t know about all the different treatments that could help at the time.”
Kirsty, 32, from Fife, also has the relapsing form of MS. She said: “At first, I didn’t want to go on a DMT. I read up on them and thought ‘they’re so toxic’ – I thought they sounded worse than a relapse. Then I had a bad relapse and realised how silly that was! Now I’m on a new treatment it’s made such a massive difference, I never want to come off it.”
Treatment may not, of course, be the right option for some people, and that’s ok. But Kirsty and Andy’s experiences show that with the right support, they were able to find a treatment that not only worked for them but helped make an immense difference to their overall quality of life.
With the right treatment at the right time, people with MS can take control of their condition. But the only way they can reach that decision is with trusted information and support. We want to make sure every person with MS can access comprehensive information and care, and connect with other people who might be facing similar decisions, so they can fully understand their condition and how it can best be managed.
We’ve come too far in the treatment of MS to fall at the final hurdle.
Both Kirsty and Andy appear in ‘Our Treatment Stories’ – a new series of frank and honest accounts from people with relapsing MS on how they made a decision about treatment. You can watch the series online at www.mssociety.org.uk/treatmentstories.
Further information can be found at www.mssociety.org.uk