Accessing the virtual MS care you need during the COVID-19 pandemic

Accessing the virtual MS care you need during the COVID-19 pandemic
COVID 19 Article

The COVID-19 pandemic has forced a change in approach to healthcare, with many people, including those with multiple sclerosis (MS), experiencing a shift to remote care. And whilst virtual appointments come with many positives, there are some things that are harder to achieve without face-to-face consultations. MS monitoring is a good example of this. But we need to accept that virtual care is probably here to stay and you need to learn how to adapt and make the most of what it has to offer.

Here, we’ll talk about the various healthcare professionals (HCPs) that might play a role in your wider MS care team and explore how you can work together with your specialist HCPs to help them provide you with the best virtual care possible.

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 can help to provide you with the support you need. 

However, the recent shift into virtual care has been a challenge for many HCPs, with 75% feeling that the pandemic has had a negative impact on the way they treat and manage their MS patients.

46% of HCPs worry they don’t understand their patients’ situation as well when they can’t see them in person

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 during the COVID-19 pandemic. Every journey with MS is different, so the actual list of HCPs that make up your team will depend on your specific needs.

Neurologist

Neurologist

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.

It can be difficult for your neurologists to monitor your MS during virtual appointments, so the more information you can give them, the better. Try using an app on your smartphone or tablet to track your symptoms, or write down any symptoms you wish to discuss with your neurologist in a notebook to act as a reminder at your next appointment. If your neurologist believes that your MS requires a more thorough physical assessment, you may be asked if you feel comfortable going to see them in person.

MS checkup

MS nurse

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. 

Like neurologists, your MS nurse is likely to offer their support by video call or over the phone during the pandemic. 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.

Physiotherapist

The 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.

Unfortunately, physiotherapy is an area in particular where many appointments have been cancelled to avoid physical contact between patients and HCPs, and to reduce the spread of COVID-19. Depending on your health and where you live, your physio appointments might be in person. But if they are instead offered remotely, try to have them over a video call as opposed to on the phone. This means that you can continue to be taught exercises to complete at home and your physio can correct any errors they see in your technique.

Occupational therapist

Occupational therapist

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.
 

Similarly to physiotherapy, many home visits, were cancelled and replaced with virtual appointments early on in the pandemic. And where home visits aren’t necessarily needed, support may continue to be offered by video call or over the phone.

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 virtual 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. 

Luckily, speech and language therapy is one area of support that has transitioned well into virtual care during the pandemic. Whether it be by video call or phone, many therapists can now offer you the support that you need remotely.

Make the most of the time you have with your therapist by taking your appointment call in a place where you can comfortably speak out loud and won’t be interrupted. This will help you to stay focused on the conversation being had and any exercises you’re being asked to do.

Psychologist

Psychologist

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.

Much like speech and language therapists, psychologists are able to offer a good level of support over virtual appointments. The conversations you have with your psychologist are valuable, so it’s important that you choose a quiet room where you won’t be disturbed. 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.

Dietitian

Dietitian

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. Despite COVID-19, dietitians can still have a chat with you and see to your needs over a phone or video call. All from the comfort of your own home!

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.

All of the above HCPs play an important role in the healthcare support system for people living with MS. Although they are doing their best, COVID-19 has made it difficult for these specialists to give you the same level of care that you need and that they are normally able to provide. But this doesn’t mean that you should sit back and accept the consequences. Here are some things that you can try to make sure you are still receiving the best care available: 

Request virtual appointments

If you don’t feel comfortable attending an appointment in person due to the pandemic, 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.

TTYD guide

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.

Ask your wider healthcare team for resources

If any of your appointments with your wider healthcare team are cancelled or postponed, contact them to see if they can offer you any resources or tips to help you self-manage your condition in the meantime.

Healthcare systems around the world have done well to adapt their ways of consulting and managing the care of people with MS, with many routine reviews and disability assessments now successfully being completed via phone or video call. Both you and your healthcare team have undergone a steep learning curve this year and are doing well to learn how you can better utilise virtual care and manage your MS during the pandemic. COVID-19 doesn’t mean that the standard of your MS care has to drop!

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