MS specialist nurses, also called MS nurses, are usually the main point of contact for someone with MS. As well as offering information, direct support and clinical advice, a nurse can connect people to other appropriate services, such as a doctor or a therapist.
MS specialist nurses
Contacting an MS nurse
How you get in contact varies from nurse to nurse. Some operate an open access service which allows you to contact them directly. Others require a referral from a GP or neurologist when contacting them for the first time.
At your first appointment with an MS nurse, they should provide you with details of their telephone contact line and explain a little more about how their particular service works and what they can offer you.
The map of MS services includes links to nurses around the UK so you can see who your nearest MS nurse team are and how to contact them. If you are under the care of a neurologist a little distance away, you will most likely find that you are referred to the MS nurse team based at the same hospital, as the MS nurses work closely with the neurologists.
What to expect from your MS nurse
MS nurses have a good understanding of the sort of problems and concerns you might experience living with MS. They are also familiar with other services locally which you may need at different points, for example Physiotherapy or Continence services, and can refer you to these services when and if it is helpful for you.
Every MS nurse service is organised slightly differently depending on the type of centre they work in, how many MS nurses are in the team, and how many people with MS they have on their case load. All MS nurses however, run their own clinics and can give you advice about symptom management, lifestyle and work issues. MS nurses are also very involved in supporting you throughout the process of choosing and taking disease modifying drugs where these may be helpful.
MS nurses are likely to be your first point of call if you are having problems – whether you think you might be having a relapse, are worried about a particular symptom or you are just feeling low in mood – whatever your concern they will listen and provide advice and support. They can refer you to a therapist (for example a physio or occupational therapist) or book you into see the neurologist; they can liaise with your GP and any other health or social care professionals you are seeing or need to see. MS nurses are also generally very helpful at answering any questions you or your family may have about your MS and its impact.
Where might I see my MS nurse?
All MS nurses offer telephone appointments and the vast majority also offer face to face appointments in clinic. Their clinics may be in the same hospital where you see your neurologist or may be held at a different hospital or community service closer to your home. Some MS nurses are also able to offer appointments via video calls.
Community based MS nurses and some hospital based MS nurses may also be able to offer home visits in certain special circumstances, though this can change depending on their workload, hospital policy and of course any changing restrictions due to Covid-19.
If you become unwell and have to be admitted to hospital your MS nurse may be able to come and see you on the ward. It is always helpful if you can let the ward staff know that you are under the care of the MS nurses and either ask them to let your MS nurse know you have been admitted or ask a relative or friend to let your MS nurse know.
An appointment with an MS nurse is usually longer than an average appointment with your neurologist. Before you go to see or speak to your MS nurse, you might find it helpful to think about the aspects of your MS which are bothering you and any questions that you have so that you can make a note so that you don’t forget what you want to ask about. Have a look at our preparing for an appointment page for ideas.
MS Nurse training
The MS Trust are the leading provider of MS nurse training in the UK. We offer every new-in-post MS nurse and MS therapist a place on our week long Foundation in MS Care course which is accredited with Birmingham City University. Over 90% of MS nurses in the UK have either attended this course or are planning to. The course provides MS specialists with an excellent grounding in MS care, delivered by highly experienced MS clinicians from around the country.
The MS Trust also run an annual conference for MS specialists and over 70% of MS nurses have attended conference in the last 3 years. The MS Trust annual conference provides MS specialists with an opportunity to listen to expert speakers who are leaders in their field, to take part in interactive workshops, to meet with exhibitors and to network with their peers.
The MS Trust also run occasional, virtual study days for MS specialist health professionals through the year.
The number of MS nurses in the UK
The first MS nurses were appointed in the early 1990s. Today there are about 300 MS nurses around the UK.
The MS Trust has campaigned for MS nurses since the mid 1990s and we provide educational and professional support. As part of this we have carried out research into measuring the value of MS nurses and the level of coverage needed so that everyone in the UK has equal access to an MS nurse. This research showed that 80 per cent of people living with MS in the UK - around 103,688 people - live in areas where there aren't enough MS nurses to provide care and support.
The MS Trust has launched campaigns to fund new nurses in the areas of greatest need and also to support Advanced MS Champions, who may be MS nurses or specialist therapists, to support people with more complex MS symptoms.