Appointments with your MS team provide you with an opportunity to ask questions and discuss treatment options to help you manage your MS. The time available is usually quite limited so this information provides some suggestions on how to make the most of your appointments and get the best from your MS team.
Making the most of appointments
How can you get the best from your health professionals?
How does the healthcare system work?
In an ideal world, you’d be able to see any health professional whenever you liked, for as long as you needed. In reality, this isn’t possible as NHS resources are limited. MS services are structured differently around the UK so it’s a good idea to ask how things work where you are.
Some health professionals are based at MS specialist centres which are usually based in large hospitals supporting people from a wide region. Other health professionals are based in local hospitals or may travel from the specialist centre, perhaps once a week, to run an MS clinic. Some services are community-based so they may be associated with a GP practice or another local centre. So you may find yourself going to different places to see various members of your MS team.
The health professionals involved in supporting you will vary according to your individual symptoms and whether you experience relapses or not. Some of them will be MS specialists whilst others may be specialists in the management of a particular symptom (such as pain), or a particular treatment or approach (for example, physiotherapy).
Who is in my MS team?
MS health professionals often work together as part of a multidisciplinary team (MDT). Each member has a particular area of expertise so you’ll only be referred to those that are appropriate to your needs. If you’d like to find more details about your local service, take a look at our online MS services map.
After diagnosis, most people are referred to see an MS nurse. The nurse specialises in supporting people with MS and is likely to be your regular point of contact. Some MS nurses also support people with other neurological conditions so they may be called a neurology nurse or something similar.
The main role of your MS nurse is to provide you with support and clinical advice to help you manage your MS. They can talk with you about treatments for specific symptoms and suggest self-management strategies you could try for symptoms like fatigue and pain. They can also refer you on to other services, like physiotherapy, psychology or continence services, if necessary.
Some MS nurses specialise in particular treatments, like the disease modifying drugs.
How often you contact your nurse will depend on what’s happening with your MS. You might want to contact them if you think you’re having a relapse, if there’s a symptom you’re really struggling with, or if you’re experiencing side effects with a new medication.
Most MS nurse services can be contacted by phone. You usually have to phone the service, leave a message and an MS nurse will get back to you, usually within a few days. Each service will have a timeframe in which they aim to respond.
Unfortunately, not all parts of the UK have an MS nurse service. If this is the case where you are, you may have to rely more on your GP to help you with symptom management and referrals to other services.
You probably saw a neurologist for your diagnosis. Some neurologists support people with a wide range of neurological conditions whilst others specialise just in MS. If you were diagnosed by a general neurologist you might want to consider transferring your care to an MS specialist neurologist. A specialist will have more experience in treating MS but you may have to travel further to see them at an MS specialist centre. However, some specialist neurologists have satellite clinics at local hospitals so it’s worth asking what the arrangement is where you live.
You may know your GP well through your consultations over the years and they’re still there to support you. Your GP is probably the most accessible member of your healthcare team and can respond quickly to provide some medications, for example, antibiotics for a urine infection. They can also refer you into other services if you don’t have an MS nurse.
However, most GPs aren’t specialists in MS so they may need to consult your neurologist before prescribing some treatments or refer you to specialist services. Your GP may be able to investigate whether any new symptoms are part of your MS or have some other cause.
Other health professionals
You may be referred to other specialists depending on your particular symptoms. As symptoms vary so much from one person to another, the health professionals who may be involved in your care are from a wide range of disciplines. It’s unlikely you’ll encounter them all.
They could include a physiotherapist, speech and language therapist (SLT) or occupational therapist (OT). A physiotherapist can help by suggesting exercises to help improve muscle stiffness, spasms and weakness, or advising on good posture when sitting, standing or lying down. An SLT can help with communication and swallowing problems. An OT can give practical pointers on lifestyle changes or adaptations and equipment that may help you in your daily life.
For some people, seeing a counsellor or neuropsychologist can be helpful, especially if you’re finding it difficult to adjust to your diagnosis or if you’re experiencing persistent low mood. A neuropsychologist can also help with cognitive symptoms like poor memory or concentration.
You may be referred to other services with their own specialist doctors, nurses and allied health professionals. These could include specialist teams for fatigue, spasticity, pain, diet, continence or rehabilitation.
You are at the centre of your MS management team and have an important role to play. You’ll have choices to consider when it comes to your treatment. How you choose to manage your MS is a very personal decision.
You can become an expert patient by building up your knowledge of MS and its management. You can ask your MS team questions and expect support to decide the best course of action for you. Everyone with MS is different so you’ll want to find the best healthcare plan for you personally.
Preparing for your appointments
You should have regular appointments with your MS nurse and neurologist to review your MS. How often you see them will depend on how active your MS is, and on the capacity of your local MS service, but at least once a year is recommended.
Some services are able to offer appointments at short notice if your MS becomes more active or if you think you’re having a relapse.
Preparing before an appointment can help you make the best use of the time available. Sometimes, the time allocated doesn’t feel long enough – this can be frustrating for both you and your health professional. They’ll be anxious to discuss the most important issues first, just like you.
Typically, a GP has around 10 to 15 minutes for an appointment, a neurologist or MS nurse may have 30 minutes, although this will vary from one service to another and may also depend on what’s happening with your MS. It’s reasonable to ask how long your appointment is scheduled to last so you can fit in your priorities without running out of time.
It may not be possible to provide answers to all your questions but, by being prepared, you’ll be best placed to cover the topics you want to discuss. If it doesn’t all get discussed in the meeting, your health professional may be able to contact you later with further information.
You might like to think:
What has happened since your last appointment?
- It may help to keep a diary to record any new or worsening symptoms, when they happened and whether they went away or are still troubling you.
- You could use your diary to prepare a simple timeline so your health professional can see at a glance what’s been happening with your MS. Too much detail can make it hard to spot the things that are most important.
- Is there anything else in your life that they need to know about, like pregnancy or plans to move out of the area?
What’s bothering you most?
- Is it accepting your diagnosis and what it might mean for you?
- Is it a particular symptom? Is it new or causing more issues than before? Does it stop you doing things that are important to you?
- Are you having difficulties with any medication? Do you find it hard to remember to take it? Are you experiencing any side effects?
- Are you feeling anxious or low in mood? Is it hard to cope at the moment?
- Do you need some written information, or an explanation, so you can understand your MS better?
- Would you like to know about sources of support, perhaps at work or with childcare, or to meet other people with MS?
What are your priority topics for the appointment?
- You could write them down in order. Between three and five works well.
- Be specific and think in advance whether you’re hoping for a particular outcome, but remember to be open to other possibilities that may be suggested.
Who might go with you?
- You don’t have to have another person with you but it can be helpful. They can be an extra pair of ears and keep notes of the conversation which you can refer back to afterwards.
- It doesn’t have to be the person closest to you. Choose someone who’ll support you well.
Do you need to do more background reading?
- Reading about your particular symptoms, possible treatment options, lifestyle changes, relapse management or the experiences of others might make it easier to understand what is suggested to help you or to decide which option you’d like to take, if there is a choice.
During the appointment
It’s a two-way discussion
Any consultation should ideally be a joint discussion between you and your health professional. Explain clearly what you’ve experienced, what you’d like to happen and anything that you don’t understand or would like repeated. It’s important to be open about how you feel and what your priorities are. Being realistic is important too.
Your health professionals may have their own list of priorities and these might be different from yours. They may raise things that you hadn’t thought of or didn’t know about. It’s not unusual for some of their topics to overtake some of the priorities on your own list.
You might feel a range of emotions during your appointment, such as feeling upset, anxious, overwhelmed or even angry. This is normal and your health professional will be used to these reactions so try not to worry too much if you do become emotional.
Your health professional will do their best to support you whilst ensuring the conversation remains productive so you get the most out of your appointment.
Making decisions together
Shared decision making is when you work with, and are supported by, health professionals to make decisions about your treatment, based on the best possible information. There may be times when you’d like a lot of support in making decisions and others when you want to be more independent.
Of course, you’re only one side of the equation. Some doctors and nurses are more willing to debate the best course of action, some will leave the choice entirely to you, but others prefer to give clear-cut advice about what they think is most appropriate.
Each of you brings something important to the conversation. Your health professional will have knowledge and experience in managing MS, whilst you’re the expert on your own values, expectations and priorities, and only you know how your body is feeling.
It’s good to ask
The appointment is for your benefit so make the most of it. Don’t be afraid to ask about anything that’s important to you even if it might feel trivial or embarrassing. It’s very likely that someone else has asked a similar question before so you’re unlikely to take your health professional by surprise.
Don’t worry about asking for information to be repeated, explained in a different way or written down for you. It’s important that you come away from the appointment with everything you need.
In many situations, asking three key questions works well. They are:
- What are my options?
- What are the pros and cons of each option?
- How do I get support to help me make a decision that is right for me?
Support might be printed or online information. It could mean referral to another health professional with more relevant expertise. Maybe you might want time to think things over and then have another appointment to take things forward. Or you might want to involve family or friends.
Your health professionals might not be able to answer all of your questions. Not everything has been discovered about MS and they may not be able to say what is happening, or may happen, to you. Sometimes, they may be able to find out the information that you need or can point you to other sources of support like the MS Trust.
After the appointment
It can be helpful to keep some basic notes about appointments and the ups and downs of your MS. You might like to keep:
- a record of names, locations, phone numbers and email addresses for your health professionals
- the dates of appointments with brief notes on what was discussed and decided
- copies of letters to you or your health professionals
- a simple symptom diary, which includes when you started or stopped any medication, and records any relevant events in your life like infections or times of stress.
You could also keep the notes you made when preparing for an appointment, any notes made by you (or the person who went with you) during the appointment, and any information leaflets you’ve been given about MS.
Example questions to ask
- What is causing this symptom?
- Will it improve or get worse?
- Will this symptom stay forever?
- Are there any treatment options?
- Are there likely to be any triggers which set it off?
- What can I do myself to manage this symptom?
- What shall I do if my symptoms get worse?
- What would I do if I experience new symptoms?
- What are my treatment options - both drugs and non-drug approaches?
- What are the pros and cons of each option?
- Why should I consider taking this particular treatment?
- How effective is this treatment?
- Are there any side effects or risks associated with this treatment? If so, what are they?
- Is there anything that can be done to reduce the impact of side effects or the risks?
- Does the treatment affect any other treatments I am taking, either for MS or for other health issues?
- How long will I need treatment for?
- How will I know if the treatment is working?
- Will the treatment need to be monitored or reviewed and when will this happen?
- What will happen if I don’t have any treatment?
- Is there anything I can do to help myself?
- Where can I go for more information?
- What are the tests for?
- Will they hurt, or are there risks involved?
- Where do I have to go to have these tests?
- How and when will I get the results?
- What impact could these tests results have on my treatment options?