How can you get the best from your health professionals?
Appointments with your MS team are key to managing your MS well. They are opportunities to ask questions and discuss treatment options. The time available is limited, so we have some suggestions on how you can make the most of your appointments.
It might not be possible for them to provide answers for all of your questions during the appointment, but by being prepared you can cover the most important topics you want to discuss. If it isn't possible to discuss everything in the meeting, the health professional may be able to contact you later with some further information.
Preparing for your first meeting
Making Sense of MS: Simon Ghafur, MS Nurse Practitioner, and Jane Metcalfe, MS Specialist Nurse, give some tips on how you can prepare for your first meeting with your MS nurse after diagnosis.
How does the healthcare system work?
In an ideal world, you could see any health professional whenever you liked, for as long as you needed. In reality, this is not possible as resources are limited. MS services are structured differently in different areas so it's a good idea to ask how the service works where you are.
The types of health professionals that support you will vary according to your particular symptoms and whether you experience relapses or not. Some of them will be MS specialists and some will be specialists in the management of a particular symptom (such as pain), or a particular treatment or approach (for example, physiotherapy).
Some health professionals are based at MS specialist centres which are usually larger hospitals supporting people with MS from a wide region. Other health professionals may be based in local hospitals or may travel there 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 very local centre. Consequently, you may find yourself going to several places to see different members of your MS team.
Who is in my MS team?
MS health professionals work together as a multidisciplinary team (MDT) to support you. Each member has a particular area of expertise so you will only be referred to those that are appropriate to your needs at the moment. If you'd like to find details of your local MS service, take a look at our online map. [insert link to Map of services]
Your MS nurse
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. Not all parts of the UK have an MS nurse service.
There are also MS nurses who specialise in particular treatments, especially some of the disease modifying drugs, which are used to decrease the number and impact of relapses.
Your MS nurse can refer you to other services if you need them.
You probably saw a neurologist for your diagnosis. Some neurologists support people with a wide range of neurological conditions but others specialise in MS in particular. You may have been diagnosed by a general neurologist but may now prefer to transfer to an MS specialist. A specialist is likely to have more experience in treating MS but you may have to travel further to an MS specialist centre. However, some 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 are 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.
However, most GPs aren't specialists in MS so they will need to consult your neurologist before prescribing some treatments or will need to refer you to specialist services. Your GP may also be able to investigate whether any new symptoms are part of yur 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 are from a wide range of disciplines. Most people with MS will never encounter them all.
They could include a physiotherapist, speech and language therapist (SLT) or occupational therapist (OT). For some people, seeing a counsellor or neuropsychologist is helpful, especially if they are finding it difficult to adjust to a diagnosis of MS or if there is longer lasting depression. A neuropsychologist can help with cognitive symptoms like poor memory or concentration and an OT can give practical pointers on how to get things done if MS affects your thinking.
You may be referred to other services with their own specialist doctors, nurses and other health professionals. These could include specialist teams for fatigue, pain, diet, continence, spasticity (muscle stiffness) 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 and how you 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 will want to find the best health care plan for you personally.
Preparing for your appointments
You should have regular appointments with your MS nurse and your neurologist to review your MS. How often you see them depends on how active your MS is, and on the capacity of your local MS service, but 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 are having a relapse. Some MS nurses can be contacted by email or phone although you may have to leave a message.
Preparing for an appointment will help you make the best use of the time available. Sometimes, the time allocated is shorter than you would like. This can be frustrating for you but also for your health professional. They will be anxous 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 depend on what is happening with your MS. It would be reasonable for you to ask how long your appointment is scheduled to last so that you can fit in your priorities without running out of time.
You might like to think about:
What has happened since your last appointment?
- It may help to keep a diary which records any new or worsening symptoms, when this happened and whether they went away or are still lingering.
- You could use your diary to prepare a simple timeline so that your health professional can see at a glance what's been happening with your MS. Too much detail can make it hard to see the things that are most important.
- Is there anything else in your life that they need to know, like pregnancy or plans to move out of the area?
What's bothering you most?
- Is it accepting being diagnosed with MS and what it might mean for you?
- Is it particular symptoms? Are they new or more troublesome than before? Do they stop you doing things that are really important to you?
- Are you having difficulties with any medication? Do you find it hard to stick to the schedule? Do you think you may be experiencing side effects?
- Are you feeling anxious or depressed? Is it hard to cope at the moment?
- Do you need some written information, or an explanation, so that 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. A top three or top five could work well.
- Be specific and think in advance whether you are hoping for a particular outcome, although you should 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 so that you can compare your understanding afterwards.
- It doesn't have to be the person closest to you. Choose someone who will support you well.
Do you need to do more background reading?
- You could read about your particular symptoms, possible treatment options or the experiences of others. This way, it may be easier to understand what may be suggested to help you or to decide which option you'd like to take, if there is a choice.
In the appointment
It's a two-way discussion
Any consultation should be a conversation between you and your health professional. State 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, what you need and what your priorities are. Being realistic is important too.
Your health professionals may have their own list of priorities and these may be different from yours. They may raise things that you hadn't thought of or didn't know about. Perhaps some of their topics will overtake some of the priorities on your own list.
You may feel emotional during the appointment, for example, you may feel angry or anxious. This is an understandable and common reaction. However, your health professional is there to help so try not to let emotions get in the way of a productive conversation.
Making decisions together
Shared decision making is when you work with, and are supported by, health professionals to make decisions about treatment, based on the best possible information. There may be times when you would like a lot of support in making decisions and others when you want to be more independent.
Of course, you are only one side of the equation. Some doctors and nurses are very willing to debate the most appropriate course of action, so will leave the choice 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. You are 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 a bit trivial or embarrassing. It's very likely that someone else has asked the same or a similar question before so you are 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. It could mean having time to think things over and then having another appointment to take things forward. It might include involving friends or family.
Your health professionals may not be able to answer all 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 information like the MS Trust.
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.
- many health professionals will be happy for you to record the conversation, so you can listen to it again, especially if you have cognitive issues.
You could also keep the notes you made when preparing for an appointment, any notes made by you or your supporter during the meeting and any information about MS.
Example questions to ask
About your symptoms:
- 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?
About treatment options:
- 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?
What is MS?
Multiple sclerosis (MS) is a lifelong condition that affects the central nervous system with different people experiencing different symptoms.
Just been diagnosed?
You probably feel emotional and have a lot of questions. What happens next all depends on how active your MS is, what treatments are available and what you would like to happen.
How is MS diagnosed?
Symptoms of MS can be part of other conditions, so it's hard to diagnose quickly. Find out about the different diagnosis tests.