This page takes you through what you should expect from appointments with health care professionals and from longer term NHS care.

Getting the most out of appointments

To get the most out of any appointment with a health care professional, there are a few things you can do in advance and on the day:

  • write a list of questions and put them in order of importance
  • make sure you ask the most important questions first
  • try to stay focused on your MS or particular symptoms you are dealing with
  • if there’s a lot to cover, try and book a double appointment so that you have a little extra time
  • take a partner, family member or friend who can act as a second set of ears, take notes and prompt you if you forget anything. If on your own, take something to make notes with. You could record the appointment, but out of courtesy it’s best to let the doctor know you’re doing that
  • keep a diary of your symptoms and other MS-related experiences. Take it with you appointments so you everyone can keep track of your MS
  • take copies or printouts of things you’ve seen and want to bring up

Medical terminology can be daunting. Don’t be afraid to ask for things to be repeated if they are unclear, and ask for any terms you don't understand to be explained.

What if the person you see doesn’t have enough time with you, or maybe isn’t the best communicator? You can take your questions or worries to their support staff. This could be the MS nurse, for example.

Between appointments you can get advice, support and information from the NHS on:

  • 111 if you live in England, Scotland or Wales
  • in Northern Ireland you can call your doctors surgery for the out of hours service.

Or call our MS Helpline if there are things you have questions about.

Asking for a second opinion

If you're unhappy with a doctor's decision, you can ask to see what another doctor thinks. You'll need to ask your current doctor to arrange for this second opinion.

There’s no law at the moment that says you have a right to a second opinion. But General Medical Council guidelines for doctors say they should respect your wish for a second opinion. Doctors usually agree to a reasonable request for one.

To get a second opinion from a different GP, ask at your surgery to see a new doctor. If necessary, a GP can refer you to a specialist for a second opinion.

If you need help getting a second opinion, including from hospital staff, you can speak to the:

  • Patient Advice and Liaison Service (PALS) if you’re in England – ask your GP surgery for details. PALS also have officers in hospitals
  • a PALS team or the organisation called Llais if you’re in Wales
  • the Patient Advice and Support Service (PASS) if in Scotland
  • the Patient and Client Council if you’re in Northern Ireland

Home visits and open appointments

If you're severely affected by your MS, it might be difficult or impossible to get to appointments, with a GP or a specialist in a hospital. There might be options.

Ask if a GP or MS nurse can visit you at home. Or they might speak to you over the phone, or use a video call if that's something you can do. Some specialists like physiotherapists and incontinence advisors do home visits, as do occupational therapists.

Or you might be able to have an ‘open appointment’. This is when you can book an appointment on a date that’s good for you. If it’s for a hospital appointment, a service in the community or to see an MS nurse, you won’t need your GP to refer you. You can make the appointment any time during a period of several months.

Free transport to appointments

Your MS might affect you so badly that you can’t get to appointments on public transport, or no one can take you by car. Then your local ambulance service might offer free patient transport patient transport services (PTS). Ask your GP about this or whoever arranged your appointment.

Treatment plans and care packages

When you see any health care specialist for the first time, they will assess the particular symptoms they have been asked to treat.

They will then develop a treatment plan.

In some areas overall ‘care packages’ are developed for people with many symptoms to manage. This is done after an assessment of your needs by the members of your multidisciplinary team.

A written care plan will include:

  • who is involved in your health care
  • treatments and therapies
  • details of anything else you need to stay in good health

Everyone involved in treating you, including doctors, nurses, therapists, and sometimes social workers, should work with you to follow the plan.

These care plans can be particularly useful if you’re finding the care you receive from the NHS are disjointed or confusing.

If you don't have a care plan, but feel you'd benefit from one, ask your GP, MS nurse or therapist.

Monitoring and review

Health care professionals should monitor and review your situation on a regular basis.

They must make sure any new developments in your MS are recorded and dealt with in your treatment programme.

You can ask to be reassessed at any time if you feel it's needed. Guidelines on treating MS from NICE say everyone should see an MS specialist at least once a year. This is true no matter what stage your MS is at. That includes advanced MS.

This yearly review should look at all parts of your care, including how your MS is being treated. These guidelines cover England, Northern Ireland and can be used in Wales. Scotland has its own guidelines, but they don’t mention how often patients should be seen.

This review with an MS specialist should happen at least once a year. It’s usually with a neurologist but for some people it might be with another member of the team looking after them, like their MS nurse. If needed, your medications can be changed and referrals to specialist can be made.

If you don’t feel you’re getting the care you’re entitled to, you can make a complaint.

Find out how to make a complaint

Webinars to help you manage your appointments

We run a range of webinars including some where we talk about managing your appointments. Browse them all to see what's coming up.

Browse our webinars