As you may have experienced in the past, many people are referred to an MS nurse. They specialise in supporting people with MS and are likely to be your regular point of contact. The other healthcare professionals in your MS team will vary depending on your particular symptoms and individual requirements.

When you go for your consultation, it’s important to talk openly and honestly about the symptoms you have experienced and how you feel about your condition. The appointment is for your benefit, so make the most of it.

The following tips can help you prepare:

  • Make a note about what has happened since your last appointment
  • Prioritise the topics that you would like to discuss
  • Reflect on what has been working well and what has been troubling you
  • Consider whether you want someone to go with you to the appointment
  • Be honest and open minded about your options

"Pick up the phone, speak to your healthcare professional and say 'please can I have an appointment?' If you have to be re-referred, speak to your GP and get a referral."
Dr Anita Rose, Consultant Clinical Neuropsychologist

What can somebody expect from a consultation with an MS-specialist?

Often patients will come to clinic with something they want to discuss, but I also want to know about the whole picture. How’s home life? How’s work? How are the children coping with things? It’s very much about the whole picture rather than just the symptom management. It’s vitally important that all of these aspects are discussed at a consultation.

When patients come to see me they often feel very reassured that they're able to contact me and that they know when to contact me and when to contact a GP or attend A&E. It’s really important that they understand from the onset how to manage their disease. Patients who come back into the services also feel really reassured by the fact that they’ve changed their strategies and management slightly, so it’s been a very positive experience. Del Thomas, MS Clinical Nurse Specialist

How can somebody with MS get back into the health system?

If you're not in contact with MS-specialist services, I think it would be good if you were. We have good services for people with relapsing remitting disease. Usually, that’s going to be at a hospital-based clinic or a community-based clinic with a neurologist and an MS nurse. The first thing to do is see your GP, ask about what services are available in the area, maybe push a little bit if you know friends that are under a good service and you want to end up towards that, but I think that the GP is a good place to start. Dr Martin Duddy, Consultant Neurologist

If someone with MS hasn’t been seen within an MS service for a number of years, for whatever reason, it’s great to have a re-referral back into the service to discuss what’s going on around the drug horizon – there have been many changes within the last couple of years – but also to discuss their coping strategies, whether there’s been any changes within complementary therapies, or exercise and diet regimes. There’s much to discuss, I’d really encourage people to re-engage with services. Del Thomas, MS Clinical Nurse Specialist

Pick up the phone, speak to your healthcare professionals, and say ‘please can I have an appointment?’, and if you have to be re-referred speak to your GP and get a referral, but just get engaged. Dr Anita Rose, Consultant Clinical Neuropsychologist

How can somebody with MS get the most from a consultation?

When people engage with the MS service, you’ve got to think of this as a fairly finite appointment. People will have maybe half an hour/45 minutes to get through a large number of topics. The doctor will have certain things they need to know about, but also people will have issues that they want to be addressed. It can be quite daunting to remember everything you want to discuss if you're not used to being in a hospital environment, or you’re meeting a doctor that you don't know. We see people who will prepare for these with lists of questions and now, very frequently, people might bring someone with them and that’s really useful to make you feel more comfortable in the meeting. What we would suggest is that, at the end, you check your list to ensure that you have covered everything you wanted to discuss. The more prepared you come, the better that consultation’s going to go. Dr Martin Duddy, Consultant Neurologist

When preparing for a clinic consultation with a consultant, it’s useful to write down any relapses or any symptoms you have issues with and want to discuss further. This gives a good structure to the consultation, and means that the professional will cover everything that you want to discuss. Del Thomas, MS Clinical Nurse Specialist

Knowing your own choices can be very powerful. I think if people come and ask ‘am I suitable for this? I’ve read about this,’ it can spark doctors to think sometimes about really where someone stands in the illness. Don‘t be scared to read before you go in, find out what’s out there. Dr Martin Duddy, Consultant Neurologist

The 1MSg campaign is initiated and funded by Biogen

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February 2019