Demanding more from your MS care
We know that life can be busy and before you know it you have gone months without a check-in with your Multiple Sclerosis (MS) care team. However, it’s really important that you keep in regular contact with your team to monitor and manage your disease. Sometimes you may have to advocate for yourself during appointments to make sure you receive the care that you deserve.
Here we discuss some practical tools you can use to help you demand more from your MS care. We also provide some top tips for those that care for you, so they can help to make sure you’re not settling for care that’s anything less than you deserve.
The MS care team
To monitor your MS, you should be having regular appointments with an MS nurse and a neurologist.
Your MS nurse is likely to be your main point of contact. They can offer support and connect you to other services if needed. How often you contact your MS nurse can depend on what’s happening with your MS. You may feel the need to contact them if you’re having a relapse, struggling with symptoms, or if you’re experiencing side effects with a new medication.1
Your neurologist is a doctor that specialises in the diagnosis and management of conditions that affect the nervous system, including MS, Parkinson’s disease, stroke, epilepsy, and dementia. Neurologists, or specialist neurologists, oversee your MS care.
Depending on the country you live in and your specific needs, you may also see other specialist healthcare professionals (HCPs) including, physiotherapists, occupational therapists, and psychologists. You can learn more about the potential role of the wider MS care team here.
The importance of regular check-ups
Even when you’re feeling well, it’s important that your MS is regularly monitored to keep track of symptoms and to check for any signs of progression. There are two main ways to keep track of your MS:
1. Taking measurements based on your MS symptoms
Your MS care team will want to keep track of how your MS symptoms are changing over time. You will be asked about whether you’ve been experiencing any new symptoms, about your daily life and how you feel. Your reflexes will be assessed, as well as how well you’re able to move, speak, see, and think.
2. Taking measurements that help to assess the disease process happening inside your brain
An MRI scan is used to see the size, location, and number of lesions in your central nervous system. By comparing your MRI scans to previous scans, your MS care team can work our whether your MS is stable or active, and how your current treatment is working.
A combination of these measurements will be assessed by your MS care team to determine how you are progressing. Knowing whether your condition is under control, or if it’s getting worse, can help your neurologist understand how well your current treatment is working, and can support them in ensuring your MS is being managed in the best way possible.
Sometimes you may have a long time between appointments, making it especially important to keep track of any symptoms you may have experienced since you last saw your MS care team. This can also help you to better understand your own MS, as it can otherwise be difficult to monitor how your MS symptoms are changing over time.
Advocating for yourself
An appointment with your MS care team is a great opportunity to discuss what is important to you! To get the most out of the time with your MS care team, you may need to advocate for yourself during an appointment. For example, a doctor may not be discussing a topic that you think is important or you may want to talk about the possibility of making changes to your MS management plan. You are perfectly within your rights to demand more from your MS care team. Here are a few tips to help you advocate for yourself during appointments:
- Have you noticed a change in your MS symptoms?
- Has your MS stopped you from doing the things you enjoy?
- How well is your current management plan working for you?
- What is one thing you want to make your neurologist aware of?
- What are your priorities for the next 12 months?
You deserve to be seen, heard and to have your concerns listened to. To make sure you are on the same page with your MS care team, you can start your appointment by saying something like, “In this appointment I want to make sure we discuss ____”.
This allows you to take control of the conversation from the start of the appointment and ensures that you are efficient with the time you have together. It is important to be mindful that your MS care team are human too and deserve to be treated with respect.
However, if you feel as though you are not satisfied with your MS care team, you may be able to request a different one.
Before your appointment, it is useful to consider what you would like to achieve from the appointment. If there is nothing specific that you have in mind, you can start by asking yourselves the following questions.
Make a note of which seem the most important to you and make these a priority. Your answers can help guide your conversation with your MS care team and help you to make the most of the time you have with them.
MS appointments are important parts of monitoring and managing your disease, and it is important that your voice is heard. Remember, everyone experiences MS differently – and that makes you the expert in your MS!
Research not just what is important to you as an MS patient, but also what is important to you as a person. Be confident, don’t be afraid to question decisions made by your MS care team, and don’t settle for anything less than you deserve from your MS care.
It may help to take a friend or carer with you to an appointment. Having someone well-informed by your side who you trust to advocate for you will not only give you support, but can also give you the confidence to advocate for yourself.
Find your perfect match
It is important that you feel comfortable enough to have open and honest conversations with your MS care team. However, you may consider getting a second opinion if you feel uncomfortable during appointments, your concerns are not being taken seriously, or you are not being listened to. If you’re not satisfied with your current neurologist or MS nurse, you might be able to request a different one – this will of course depend on where you live and the availability, but many healthcare practices will do their best to accommodate your needs.
Supporting a loved one
If you are a loved one or carer of someone living with MS, you can play an invaluable role in helping them to demand more from their MS care. As a "neutral observer", you may find it easier to ask questions, address difficult topics, or ask for more detailed explanations from their care team. People living with MS have a lot on their plate, so you can also support them by advocating for appointments, to make sure the person you care for is seen regularly by their MS care team.
It is important that you discuss with the person you care for what would help them the most. This can range from simply taking them to and from appointments, to being present in the appointment and contributing to the conversation. It is important to have open and honest conversations and that boundaries are set. Below is a guide of where you may be able to offer help:
- Ask the person you care for how you can best support them in their appointments
- Be clear on what the most important topics are to discuss
- Ask the person you care for about their expectations or goals of the appointment
- Help to take notes of what is going to be discussed during the appointment
- Try a role-playing game – so they can practice what to say to the HCP
- Be attentive – have you noticed the person you care for display a new symptom? Talk carefully about your observation and make sure you don’t assume anything.
- Have a copy of the discussion points with you so nothing is accidentally missed off
- Take notes so that the person you care for can concentrate fully on their appointment
- Ask for more detailed explanations of difficult topics
- If you notice the discussion going off on an unnecessary tangent, bring the conversation back to the chosen focus
- If you feel that the person you care for isn’t receiving the care they deserve, then you may want to advocate on their behalf – remember, be firm but fair and make sure that the person with MS is comfortable that you are doing this.
- MS Trust. 2020. Making the most of appointments. Available at: https://mstrust.org.uk/information-support/newly-diagnosed/making-most-appointments Accessed: January 2023.
Talk To Your Doctor guide
Create your own personalised guide to support the conversations you have at your MS appointments.
Getting the support you need from your MS care team
Learn more about the MS care team and the benefits of attending appointments.
Setting goals in MS
Learn about the importance of setting goals and how to set the right ones for you.