Getting the support you need from your MS care team
From conversations with the multiple sclerosis (MS) community, we are aware that some people living with MS don’t always book and attend scheduled appointments with their neurologist or MS nurse. For some, years have passed without so much as a single conversation with a healthcare professional (HCP) about the status of their MS.
There are various reasons for this problem. However, it’s become clear that many people living with MS don’t know what support is available from their healthcare team and as such, are unaware of the benefits of attending appointments and don’t know where to begin when asking for access to additional help. If this rings familiar to you, we hope this article will go some way to answering your questions about the support you can be offered and allow you to take advantage of the help available at your disposal
When you think of your MS care team, who do you picture? Some people may only receive care from a neurologist and MS nurse. But others may receive support from additional HCPs who are specialists in seeing to particular problems that are related to MS. Together, this wider team of experts in their respective fields can help to provide you with the support you need.
Take a look below at the aspects of MS care that different specialist HCPs are responsible for and see how you can help them to improve the care they can give you. Every journey with MS is different, so the actual list of HCPs that make up your team will depend on the country you live in and your specific needs.
A doctor that specialises in diagnosis and management of conditions that affect the nervous system, including MS, Parkinson’s disease, stroke, epilepsy and dementia. Neurologists, or specialist MS neurologists, oversee your MS care.
Often the main point of contact for someone living with MS. They can offer you support, education and medical advice, and can help to co-ordinate your care, connecting you to other services that you need.
You can make the most of the support they can give you by preparing for your discussions. Try to get into the habit of writing down anything related to your MS that you’d like to talk about with your MS nurse between appointments. This way, you won’t forget anything you’d like to bring up and can prioritise topics that are most important to you.
A physiotherapist can help you maintain and improve your physical function and movement. In MS, they support in taking up physical activity and exercise, helping you to continue leading an active and independent life. They can also help you to better manage your MS symptoms, such as stiffness, balance and muscle spasms.
These HCPs specialise in helping you overcome any barriers you experience in your everyday life, helping with tasks such as dressing, bathing, and eating. They can also visit you at home to suggest simple lifestyle changes and adaptations, or the use of specific equipment you might find beneficial for day-to-day living.
To help your therapist to really understand the problems you experience and suggest beneficial solutions, prepare a list of things you’d like to discuss during your appointments. Have a think about the physical challenges that MS brings to your daily life and be ready to talk about the success or lack of success you’ve had with past recommendations they have made
Speech and language therapist
These therapists can help to assess, diagnose, and manage speech, cognitive communication, and swallowing problems in people living with MS. For example, they can help to improve slurred speech and assist people who have difficulty in remembering or concentrating on things involving words.
Clinical psychologists are trained to help you with the impact that your MS can have on your cognitive function and mental health. This includes problems such as issues with concentration, memory, and changes in behaviour, as well as more emotional issues like changes in mood. Be ready to talk openly about any cognitive and emotional problems you are experiencing. Keeping a diary of your symptoms and how you’ve been feeling can be really beneficial in helping you and your psychologist to identify patterns.
Psychologists are able to offer a good level of support over virtual appointments. The conversations you have with your psychologist are valuable, so if your appointments are over phone or video call, it’s important that you choose a quiet room where you won’t be disturbed.
Dieticians can create food plans for people with specific medical conditions to try and help them better manage their health. If you experience swallowing problems as a result of your MS, they can also teach you preparation methods and help you to find foods that make it easier to swallow.
To make sure that you’re making the most of the knowledge and expertise your dietitian has to offer, go to your appointments prepared with any questions you wish to ask and keep a pen and paper nearby so you can take down any notes during your conversation.
From lack of appointment availability, negative experiences with HCPs in the past, or logistical issues in travelling to appointments, there are many reasons why people with MS might miss their healthcare appointments. This is a broad issue which needs to be tackled to help people like you receive the best possible care and support in your life with MS.
If travelling to and from your appointments has previously been a problem, you’ll be delighted to hear how much telemedicine has advanced – particularly over the last couple of years since the start of the COVID-19 pandemic – and so you may be able to request virtual appointments either over the phone or via a video call. Some appointments will require a face-to-face meeting with a member of your healthcare team, but you might be surprised at how valuable and convenient that virtual appointments can be from the comfort of your own home.
All of the HCPs mentioned above can play an important role in the healthcare support system for people living with MS. If your MS is having a negative influence on your life, you shouldn’t have to sit back and accept the consequences. Here are some things that you can try to make sure you are receiving the best care available:
Speak to your core MS team
Make sure you talk to your neurologist or MS nurse about any problems you encounter that are related to your MS. Tell them the whole story, no matter how trivial you think your issues may be, and continue to keep in touch with them to discuss your MS management and progression. Don’t feel like you have to wait for your scheduled check-ups.
If you haven’t been assigned to a neurologist or MS nurse, speak with your GP. They should be able to refer you to the relevant specialists who can guide and support you on your journey with MS.
Ask your wider healthcare team for resources
Contact your wider healthcare team to see if they can offer you any resources or tips to help you self-manage your condition outside of your appointments in your day-to-day life. They may also be able to direct you towards local MS groups in your area that can connect you to others with similar experiences.
Find your perfect match
Unfortunately we sometimes hear from people who have had negative experiences with HCPs. However, this isn’t the norm and if you don’t get on well with one neurologist, it doesn’t mean that you should settle for a lack of support. Neurologists and MS nurses want to help you and a negative experience may just be the result of a clash in personality or way of thinking.
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 try to accommodate your needs. Connection with a healthcare team who understand you can make all the difference!
Request virtual appointments
If you don’t feel comfortable attending an appointment in person due to the ongoing COVID-19 pandemic or will have trouble travelling to an appointment, think about whether you would still benefit from a virtual consultation. There may be instances where a virtual appointment wouldn’t be appropriate, but where possible, requesting a phone or video call would be a far better option than cancelling your appointment altogether.
As you can see, there’s a wealth of support out there for you to take advantage of. We know this is not always clear, so we hope this article has armed you with the information you need to ask your healthcare team for further help to assist you in living your best possible life with MS.
1. MS Trust – Neurologist. Available at: https://mstrust.org.uk/a-z/neurologist. Last accessed: November 2020.
2. MS Trust – MS specialist nurses. Available at: https://mstrust.org.uk/a-z/ms-specialist-nurses. Last accessed: November 2020.
3. National Multiple Sclerosis Society – Developing a Healthcare Team. Available at: https://www.nationalmssociety.org/Treating-MS/Comprehensive-Care/Developing-a-health-care-team. Last accessed: November 2020.
4. MS Trust – Physiotherapy. Available at: https://mstrust.org.uk/a-z/physiotherapy. Last accessed: November 2020.
5. MS Trust – Occupational therapy (OT). Available at: https://mstrust.org.uk/a-z/occupational-therapy-ot. Last accessed: November 2020.
6. MS Trust – Speech and language therapy. Available at: https://mstrust.org.uk/a-z/speech-and-language-therapy. Last accessed: November 2020.
7. MS Trust – Psychologist. Available at: https://mstrust.org.uk/a-z/psychologist. Last accessed: November 2020.
8. MS Trust – Dietitian. Available at: https://mstrust.org.uk/a-z/dietitian. Last accessed: November 2020.
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