With the Covid guidelines frequently changing, what actually is the advice for people with MS?

It all depends on where you live. At the time of writing, none of our areas is on high alert. Hopefully, this remains the same. We have put together a list of reliable webpages where you can get the most up to date advice. Whilst every care has been taken to only share reputable sites, these are beyond our control. 

This will be pinned at the top of the blog so you can easily find it. Have you got something to add? Please let us know by emailing ms@bmstc.org or calling 0118 901 6000.

MS information

MS Society: https://www.mssociety.org.uk/care-and-support/ms-and-coronavirus-care-an…?

MS Trust: https://www.mstrust.org.uk/a-z/coronavirus-covid-19-and-multiple-scleros…

Government/NHS

Gov UK: https://www.gov.uk/coronavirus

NHS: https://www.nhs.uk/conditions/coronavirus-covid-19 

To request a test: https://www.nhs.uk/conditions/coronavirus-covid-19/testing-and-tracing/g…

Local councils

Bracknell: https://www.bracknell-forest.gov.uk/node/6473

Oxfordshire Council: https://www.oxfordshire.gov.uk/council/coronavirus-covid-19

Reading Borough Council: https://www.reading.gov.uk/coronavirus-covid-19/

Royal Borough of Windsor and Maidenhead: https://www.rbwm.gov.uk/home/council-and-democracy/contact-us/coronaviru…

Slough: https://www.slough.gov.uk/health-and-social-care/coronavirus.aspx

West Berkshire: https://info.westberks.gov.uk/coronavirus

Other

‘Please give me space’: https://pleasegivemespace.uk/

Siponimod has been approved on the NHS as the first-ever oral treatment for people living with active secondary progressive MS in England and Wales. 

A new treatment for secondary progressive MS

Siponimod, which is taken as a daily tablet, is the first new treatment for secondary progressive MS in over a decade. The only other available treatment for active secondary progressive MS is injected, and siponimod has been shown to be more effective at reducing relapses and delaying cognitive impairment.

The drug has been found to reduce the risk of disability progression by 37% compared with a placebo (dummy drug) and could help thousands of people take control of their MS.

When siponimod was initially rejected by NICE in England and Wales in June, the MS Society asked people with MS to tell them how the drug could make a difference. The stories really helped them to urge NICE to look again at the evidence.

Who can be prescribed siponimod?

Siponimod will be available to adults with secondary progressive MS with active disease. This means those who are experiencing relapses or have evidence of inflammation on MRI scans.

It normally takes a few months for treatments to become available on the NHS. The MS Society recommends that you should speak to your doctor if you think you could benefit from siponimod.

Source: MS Society, https://www.mssociety.org.uk/what-we-do/news/siponimod-approved-for-acti…

This year, more people than ever before will be eligible for a flu vaccination on the NHS. People with MS are eligible every year for a free flu vaccination but this year this may be extended to more members of your family.  

The MS Trust has put together a guide to the flu season and attempts to answer all your MS and Flu vaccination questions. https://www.mstrust.org.uk/news/views-and-comments/flu-season-2020

A trial shows that myelin repair in humans is possible. 

Information from the MS Society website: 

‘The results from our Phase 2a clinical trial have shown that bexarotene is capable of regenerating lost myelin – the protective coating that surrounds nerve fibres, which is damaged in MS. Now, a new trial of the diabetes drug metformin will build on this work.

Critical to stopping MS

New research presented at the MSVirtual2020 conference has shown that bexarotene, a drug developed to treat cancer, is able to repair myelin in people with relapsing MS. This is a breakthrough that scientists say is critical to their goal of stopping MS.

Professor Alasdair Coles from the University of Cambridge, who led the research, said: “The lessons we’ve learned are incredibly exciting, as we now have further concrete evidence that remyelination in humans is possible. This discovery gives us confidence that we will stop MS, and will swiftly be taken forward into further studies trialling other potential new myelin repair treatments.” ‘

You can read more on the MS Society website here: https://www.mssociety.org.uk/research/latest-research/latest-research-ne…

The MS Trust has put together this guide on how to make the most of online appointments with healthcare professionals. 

Getting prepared beforehand 

• Find the right environment. With virtual appointments, it’s down to you to find an appropriate setting for the call. Have a think beforehand about where you’d feel most comfortable. Is there a quiet room in your house which would give you a private space to talk? If you have a particularly busy household, let your family know you’re having a private call to reduce the chance of interruptions.  
• Allow time to get the technology set up. Make sure your phone, tablet or laptop is fully charged. Test out the camera too – is there enough light in the room so you can be seen? If it’s a video appointment and you need to download an app or log into another platform, then do this in plenty of time just in case there are any hiccups.  
• Consider the device you’re using. If it’s a video call and you want to show visible symptoms, such as changes to your walking, then using a tablet on a stand, a laptop or a webcam on a computer may be more practical than trying to balance your phone on pieces of furniture. Make some notes beforehand. Prepare as you normally would for a face-to-face appointment by writing down what you’d like to discuss. Have things changed with your MS? Are there particular symptoms you’re struggling with? Are side effects from medication becoming a problem?
• Make a list of all these things. You might want to put the most important things at the top of list to make sure they get covered.

If it’s a video appointment make sure you’re ready five minutes beforehand to log on to the call. 

– Person with MS

During the appointment 

• Use your notes. Start by letting your health professional know what you want to talk about, then work through your list of priorities one by one. There may be other things your health professional raises which need to be discussed too. 
• Be prepared to take notes. Have a notepad and pen ready so you can make notes during the appointment. If you’re using your phone, consider using the loudspeaker function so you can take notes at the same time. 
• Ask questions. Don’t be afraid to ask questions if you’re not clear on something your health professional has said or if you want a more detailed answer.  
• Clarify what happens next. It can be helpful to finish the appointment with a quick summary of what’s been discussed and the next steps that need to be taken. Is there anything you’ve been asked to do following the appointment? Is your MS nurse or neurologist referring you on to another service? Keep a note of what needs to happen next and when. 

Don’t be afraid to ask them to change the set up so you feel more connected. In my appointment the nurse started looking to one side because of the different screens/webcam position, so it was like they were addressing someone else! I flagged it and they shifted so they were looking into the camera and we had eye contact. It’s so important when you’re not face to face. 

– Person with MS

After the appointment 

• Go through your action points. Maybe you need to pick up a prescription for a new medication or try some new management strategies for your fatigue. Take some time to try out the advice you’ve been given. 
• Review how the appointment went. Did you get everything out of the appointment that you needed to? Was there enough time to cover everything on your list? Make a note of anything you didn’t talk about so you can prioritise this next time.  

My video appointment worked well. There was no hassle travelling to the appointment, parking and sitting in the waiting room. 

– Person with MS

I’ve had several positive video appointments. My MS nurse was able to share his screen and show me my MRI scans which was great. – Person with MS

Although virtual appointments can be very productive for some people, they’re not always appropriate for everyone. If you feel that a virtual appointment hasn’t worked well for you then do speak to your MS team about the possibility of seeing someone face to face.

Original Article: https://www.mstrust.org.uk/news/views-and-comments/how-make-most-virtual-appointments

Source BMJ: Interesting article by Gavin Giovannoni, consultant neurologist at Barts Health NHS Trust and colleagues describe the move to provide remote care to patients with multiple sclerosis, and Rachel Horne and Alison Thomson, provide insight into what patients think of them. 

The sudden switch to remote working 

With the onset of lockdown all NHS staff who could work from home were asked to do so. This meant that they had to be given remote access to IT systems. Prior to covid-19, consultants had to wait years to be granted access to electronic patient records from home. Suddenly, within days we were given the freedom to create virtual private networks on our home computers using smartphone technology for secure login and user authentication. Read on. 

Problems with swallowing may not be the most heard of MS symptom but it affects at least a third of people living with MS. 

For some people, these changes come and go, or happen during a relapse and never re-appear. But for others, they can be an ongoing issue. Any changes to swallowing can feel strange and worrying, even if they are small changes.

But however your swallowing is affected, there are things you can do to make swallowing as easy, comfortable and safe as possible.

The MS Society recommends a few tips to help with swallowing problems including: 

• eating slowly 
• chewing well
• good posture

They have some techniques to help: https://www.mssociety.org.uk/about-ms/signs-and-symptoms/swallowing

Read the MS Society’s techniques and information about swallowing

The MS Society is running a number of online sessions bringing people with MS together to discuss different MS-related topics. 

On Wednesday 23 September they will be bringing people together (online of course) to talk about Understanding and Managing Fatigue. 

What to expect?

• Virtually meet others from the UK who have MS
• Have a chance to share experiences
• Discuss managing your fatigue after lockdown
• Share top tips on how to manage fatigue

This is not a Berkshire MS Therapy Centre event, it is organised and led by the MS Society. 

You can find out more and sign up here: https://www.mssociety.org.uk/care-and-support/everyday-living/living-well-with-ms-sessions/time-to-chat—managing-fatigue—wednesday-23-september-2pm