Campaign to improve care for people with multiple sclerosis

Treatment options for people with multiple sclerosis (MS) are about to get a lot more complicated, but there are various ways that MS specialist nurses and other healthcare professionals can help.

The landscape of treatment for people with MS is set to change dramatically this year.Two new innovative MS medicines have recently been approved for use on the NHS, and up to two more (we hope) will follow within the next year, taking the total to 11.

These medicines could significantly improve the quality of life for many people with MS, from helping control relapses to improving the ability to walk (and work) efficiently. It is an exciting, unprecedented time; but for many these changes won’t even register as people continue to face significant difficulties accessing the treatments they need, the information to decide what’s right for them, and the MS specialists who can help.

MS Society research reported in 2013 that six out of 10 people with MS are not taking a medicine that can alter the course of the condition despite being eligible for them. The research also revealed that access to these disease modifying drugs (DMDs) improves vastly when people have access to a key aspects of care, namely a neurologist, nurse, or good information. When people with MS have all three, 69 per cent are on a DMD. When they have none of these, only seven per cent are.

This year, we delved a little deeper and discovered that MS nurses play the most useful role in decision-making about DMDs. Sixty-seven per cent of people with MS we surveyed ranked MS nurses as very/extremely useful, followed by neurologists at 51 per cent.

MS nurses play a pivotal role in the lives of many people with MS but huge pressure on the system means that not everyone gets to see a nurse regularly to review their condition and treatment options (and some don’t see one at all!) Of the people we surveyed, those who had not heard of any DMDs were less likely to have spoken to an MS nurse or neurologist in the last two years.

Increasing access to MS nurses is a tall order when they are under huge pressure and strain to keep their jobs. The MS Society has saved four MS nursing posts from being cut in the last four months alone. Since 2011 we've safeguarded around 22 specialist MS posts from being axed by the NHS.

But the fact remains there are licensed medicines out there that can transform the lives of people with MS, and they’re out of reach for many. Indeed, we estimate that as many as 27,000 people might begin taking a licensed DMD if care across the UK was consistent and people with relapsing MS had access to appropriate information and support to make decisions about their care.

That’s why the MS Society is launching the Treat Me Right campaign during MS Week. Join us:

• Get in touch with us and let us know how we can work together to improve access at a local level; email campaigns@mssociety.org.uk
• Have a look at our information on the latest MS treatments http://www.treatmerightms.org.uk/
• Encourage people with relapsing MS to seek a review of their treatment options in light of the new treatments becoming available
• Visit http://www.treatmerightms.org.uk/ and add your voice to our campaign for all people with MS to get the right treatment at the right time.

About the author

Michelle Mitchell is chief executive of the MS Society