Survey: Some patients with multiple sclerosis not engaging with specialist services

Feb 15 2016

Concern raised by MS-specialists at number of people with multiple sclerosis not in
contact with specialist services

A new survey has highlighted that the lack of engagement with specialist services of some patients with multiple sclerosis (MS) is a concern for MS-specialists. The research found that 93% of healthcare professionals with expertise in MS believe that there are people with the condition who are missing out on MS services; including access to new medicines, symptom control and holistic services that can be offered by the MS team.

To help address this issue, a new initiative funded by Biogen and developed alongside clinical experts is launching called the 1MSg campaign. The campaign aims to highlight the benefits of regular and quality engagement with MS-specialists in order to ensure people are making informed decisions about their disease-management based on the latest information. The one message at the heart of the campaign is: Take Control, Know Your Choices'.

Previous research by the MS Trust found that nearly a fifth of people with MS had seen neither an MS-specialist nurse (MSSN) or a neurologist in the past year, and so will not have received the comprehensive annual review recommended by the National Institute for Health and Care Excellence (NICE). In addition to this are the people not covered by an MSSN caseload.

The survey, conducted by Opinion Health on behalf of Biogen, amongst 100 neurologists and nurses, revealed that 97% think there are people who could benefit from reconsidering how they manage their disease in light of how the MS landscape has and continues to evolve.

Early intervention is key in the long-term management of MS

MS is not a static disease, and progression does occur. Progression of MS can lead to the development, or increased severity, of a number of symptoms and, in severe cases, patients can develop disabilities including speech difficulties and cognitive problems such as difficulty with thinking and memory.

The progression of MS can be unpredictable and can vary from individual-to-individual, and therefore monitoring is important. Thanks to the development of magnetic resonance imaging (MRI) technology, we are now able to monitor signs of disease progression that would have, otherwise, remained 'unseen'. Such technology has enabled MS experts to monitor the disease much more closely, allowing for optimal intervention to try to slow deterioration. A recent report published by the MS Society demonstrates that there is now consensus amongst thought leaders in MS to indicate that early treatment is key in improving long-term health and wellbeing, slowing down irreversible damage, and reducing relapses (presence of MS symptoms).

Dr Martin Duddy, a Consultant Neurologist specialising in MS said: "We know there are a significant number of people with MS who have lost touch with their specialist support team. The danger is that they may be missing out on treatments and care that could help to change the trajectory of their disease,

preventing relapses and slowing down progression and disability. The way we manage the condition has changed a great deal. This includes the support services we offer such as occupational therapy or dietetics, how we control or treat symptoms, how much we understand about the disease and its progression through technology such as MRI, and what we're able to offer in terms of treatments to help alter the course of the disease. I want to encourage all people living with MS to regularly see a member of their local MS team."

The survey reports that 'a lack of patient understanding about the clinical implications of not taking proactive action' is considered a significant factor in discouraging some people with MS from accessing services and support according to seven in 10 specialists. Nearly two thirds (64%) think 'the invisibility of some symptoms means the potential severity of the condition can be underestimated'.) n addition, 'a lack of awareness about the clinical benefits of early intervention', 'the unpredictability of the condition encouraging a short-term mind-set', and 'a lack of patient understanding about the range of treatment options available' were all considered key factors in dissuading some people from regular engagement with a specialist.

Top benefits of regular engagement

According to the survey results, the top benefits of regular engagement with MS-specialists are:

• Access to ongoing education to help people understand the disease.
• Advice on the management of MS symptoms.
• Regular monitoring of disease progression, including identifying relapses.
• Regular reviews and advice regarding treatment options, and advice on relapse management.

Del Thomas, MS Clinical Specialist Nurse, said: "I feel it's really important that everyone with MS sees a specialist on a regular basis. Having access to the MS team can make a real difference. We can check that people with MS are managing well and, if not, we can provide additional support. Contact with a specialist can help patients make considered decisions about what is best for them. MS is not a static disease and is changing all the time, and so monitoring and regular review can help to ensure that the condition is being managed appropriately."

1MSg launches with educational materials

The imsg campaign will launch with an educational website where people with MS, and those close to them, will have access to a range of information including video advice from leading specialists. In addition, educational materials will be delivered to GP surgeries and MS centres across the country to help spread the campaign message.