Whether you were recently diagnosed, or have been living with MS for a number of years, keeping in contact can help you feel more empowered and better informed. One study found that more than three quarters of people with MS said having access to an MS-specialist nurse had made at least one positive difference to them in the past year, and on average they identified four to five benefits.1 Another study found a strong correlation between a collaborative approach to therapy decisions and treatment satisfaction.2
93% of MS nurses and neurologists think there are people with MS who do not fully appreciate the potential benefits of regular and quality engagement with specialist healthcare professionals. 3
1 GEMSS Patient Survey Meta-Analysis. MS Trust. November 2015. Available at: support.mstrust.org.uk/file/Evidence-for-MS-Specialist-Services.pdf. Last accessed: April 2018.
2 MS treatment in England: is access still a lottery? MS Society. Available at: www.mssociety.org.uk/sites/default/files/MS%20treatment%20in%20England_0.pdf. Last accessed: April 2018.
3 Multiple Sclerosis Clinician Survey of 100 Specialist MS Nurses and Neurologists by Opinion Health in July 2015.
It's really important that people with MS have access to somebody within the MS support team about once a year. This is to ensure that they’re managing well with the strategies that they’re using, to look at the symptoms that they’re having; whether they’ve developed any new ones, or they’ve got a reoccurrence of old ones. Also, to discuss relapses; whether they’ve had one, or whether they’re using great strategies to help prevent one. Del Thomas, MS Clinical Nurse Specialist
The National Institute for Health and Care Excellence (NICE) has recommended that people with MS have a comprehensive review once a year. I think this can serve several functions. For people who are on disease-modifying treatment or who are eligible for it, that means we can check to see whether they’ve had relapses. If they are on treatment, we can see whether they should stay on the drug they're on or change onto something else. As well as that, we can look to see whether there’s new disability developing and new symptoms. We know from experience that people with MS tend to put up with an awful lot. They often expect that it’s just part and parcel of the disease, that there are symptoms that just don’t go away. A lot of the symptoms for pain and stiffness, problems with the bladder and bowels, problems with their mood, can be addressed and we’d be keen that people feel free to talk about that. Dr Martin Duddy, Consultant Neurologist
That’s why it’s really important to keep engaged with your healthcare provision, because they’re going to be the people that point you in the right direction when you need it. Dr Anita Rose, Consultant Clinical Neuropsychologist
We know that there is a group of people who haven’t seen an MS doctor or a nurse, or maybe any doctor, for a year or two, and some people considerably longer than that. I think if you’re one of the people who hasn’t been involved in MS services for 10 years plus, everything is different from when you were last here in terms of the way we think about the disease and treat it, and certainly re-engaging and finding out if there is anything suitable for you would be good. For people who haven’t been in the last couple of years and are just dropping out of the system, we would encourage people to stay engaged. The notion of only having one or two drugs, and having that drug or nothing, is no longer the case. Dr Martin Duddy, Consultant Neurologist
Every time someone with MS sees a health professional, whether that be a consultant or MS nurse, it’s really good to check that the way they are managing their MS is right for them at that time. There may be some changes that need to be palliated, maybe referrals need to be made, and then more frequent follow-up may be needed to be scheduled rather than just the annual review. Del Thomas, MS Clinical Nurse Specialist
It might be that you’re experiencing problems with cognition and you want somebody to know that, who understands MS. It might be that you’re having problems with your mobility and you need to see a physiotherapist. It might be that the treatment you’re taking isn’t suiting you and you’re feeling a little unwell, or you’re having symptoms that aren’t healthy and you can use this time to reflect. So engaging is really important. Dr Anita Rose, Consultant Clinical Neuropsychologist