How should it be working?
The MS Trust helpline has received a lot of questions regarding access to treatments for Covid-19. It’s clear that there is confusion about who is eligible for these medicines and how to get them.
If you catch Covid-19, you may be eligible for a treatment to manage your symptoms and reduce your risk of becoming seriously ill. There are a range of Covid-19 medicines currently available. Some are antiviral treatments, and one is an antibody treatment.
GP services and MS services are not responsible for the delivery of Covid-19 medicines. In England, they are coordinated by regional NHS Covid Medicine Delivery Units (CMDU). In Wales, they are coordinated by the National Antiviral Service (NAVS) In Scotland, the Health Boards are responsible for Covid-19 medicines, and in Northern Ireland the Department of Health and Social Care is coordinating this.
The CDMUs have collected lists of people in England who are deemed to be eligible for Covid-19 medicines and sent out PCR and lateral flow tests to those people on the list, so that people can test as soon as they notice symptoms. This is because Covid-19 medicines need to be given early in order to be effective. In Wales, Scotland and Northern Ireland, test kits are not sent out in advance, but can be ordered online to keep at home.
If you test positive for Covid-19 – either through a PCR or lateral flow test – you should report your result and then a CMDU will usually contact you within 24 hours, either by text, email or phone. They will assess which treatment is suitable for you and either send you a medicine you can take as a tablet at home or arrange for you to visit a hospital for a treatment that is given by infusion.
Only PCR or lateral flow tests that have been sent out by a CMDU will trigger an invitation to receive Covid-19 treatment when a positive test is reported. You cannot report a positive test from a different test kit that you have bought or received elsewhere.
“I haven’t received any of the tests or emails that were apparently supposed to have been circulated to everyone, I’m one of the great forgotten” – Jen, MS Trust Facebook group
Is everyone with MS eligible?
When the Covid-19 medicines were first announced, it was not clear whether all people with MS would be classed as eligible. As far as we know, people with MS who are at higher risk of serious illness with Covid-19, despite being vaccinated, are currently eligible for these treatments.
This may be the same group of people that were eligible for a third primary dose of the Covid-19 vaccine and are eligible for a spring booster. If you belong to this group, you should have already been contacted by the NHS. This could have been in a text, letter or email. You then should have been sent a pack of lateral flow tests or PCR tests if you live in England.
In some cases, it’s clear that a wider selection of people with MS have been offered treatment. If your MS team or GP has indicated that you are at increased risk of severe illness with Covid-19, they may have added you. This may be for other reasons or conditions as well as MS.
If you are concerned about your own access to Covid-19 treatment, you may be able to find out if you are on the appropriate list beforehand, and check that your contact details are correct.
If you haven’t been contacted, and you think you should have been, it is best to contact your MS team for advice. Your neurologist should be able to confirm if you’re eligible for the treatments and can make sure this is flagged up on your medical records.
If you’re not contacted within 24 hours of your positive test, you should contact your GP, 111 or your MS team. They’ll be able to make an urgent referral for you. Being eligible for treatment does not automatically mean that you will be offered it. If health professionals feel that you are already getting better, then they may not advise it. Most people who catch Covid-19 make a full recovery, even if they do have MS.
You can read more about the latest information for people with MS about Covid-19 on our website.
My experience was very positive. After a positive PCR test I was informed by email that a doctor would call in the next 24 hrs. They did so and this was followed by another call from a health professional who, after a discussion, agreed that I would have antiviral tablets. He was very pleasant and thorough. The tablets were delivered later that day. Excellent NHS care – Ellie, MS Trust Facebook Group
Personal experiences with Covid-19 medicines
We heard a range of experiences from members of our Facebook group.
I got in touch with the number I was given, rang and left a message with phone number, no contact back at all. All I can say is I'm glad I was not too bad with covid, bad enough though. Had no tests through post either. I never ask for help, but thought being offered something that could help me and benefit others I would do it – Clair, MS Trust Facebook group
I tested positive with coronavirus on the Monday following a celebration with family and friends over the weekend. I was aware that I may be eligible for the antiviral treatments but wasn't entirely sure what the process was. Following a quick Google, I called 119 and was told that I should call my GP, so I did just that and was advised to call my MS nurse. She was helpful and said she'd ask my neurologist.
The following day I received a call from a coronavirus consultant who asked me a few questions and called on Wednesday to see if my symptoms had worsened. He prescribed a drug called Xevudy (sotrovimab) which is administered via a drip in your arm. The infusion team at Maidstone Hospital invited me into their clinic on the Friday.
I turned up at the hospital and was looked after by two nurses who administered the dose and kept an eye on my heart rate, blood pressure, and temperate to check that I didn't have an adverse reaction to the medication. It took about two hours in total and was all very straightforward.
By Sunday, my test was showing a faint line and I recovered quickly. The nurses told me that I'd have antibodies in my system for four weeks after the infusion.
My experiences are totally negative. Despite being eligible on more than one count, I have had no emails, no priority PCR, no LFT packs or emails. No help from 119. Being pushed from pillar to post. No idea if I would get antivirals should I get Covid. All very upsetting – Judi, MS Trust Facebook
I tested positive for Covid-19 after my child caught it from school. I first felt like I had a heavy cold, but the fatigue and aches set in as well. I registered my test in the evening and emailed my MS nurse, telling her about my situation, asking her if I should do anything else, or just wait for the NHS to contact me regarding antiviral treatment. She wrote back the next day saying that she thought it would be a good idea to call 111.
I called 111 later that day, as I hadn’t heard anything, and went through an assessment. The person on the phone said he was going to make a telephone appointment with my GP who would call later. It was a Friday afternoon and I was a bit worried that the GP would have gone home. But they called me at 4.30pm and asked a few questions to check I had coronavirus symptoms and a positive test. She then referred me to the prescribing team at my local hospital.
The next day, I was sound asleep at 10am when the nurse from the hospital called. I'd had a bit of a rough night with quite a lot of pain, so I felt very groggy and confused chatting to her. She asked me some more questions about my symptoms and how long I'd had them for, telling me that they'd only treat people within the first few days of catching coronavirus.
I was then offered to come in for an infusion treatment, but because I don’t drive and obviously couldn’t go on public transport, they instead opted for giving me Paxlovid (nirmatrelvir and ritonavir) tablets. She said that these shouldn’t interfere with the MS medication that I am on.
The tablets were delivered later in the day. I had to take three tablets, twice a day, for five days. Apart from a dry mouth, I felt no other side effects from the medication. Eight days after my positive test, I was negative and I felt much better.
The ADAMS project
25/05/2022 - 00:00
Dr Benjamin Jacobs spoke to us about a new study on the genetics of MS in people from minority ethnic backgrounds which may eventually shed light on why MS can be more severe for Black and Asian people.
Roxy's journey to diagnosis
16/05/2022 - 00:00
Roxy talks about her MS journey and the importance of sharing her own experiences to ensure that others don’t face the same challenges when receiving a diagnosis.
Lis' MS journey: one woman and her bike
04/05/2022 - 00:00
In May 2022, Lis will be heading off on her 5,000 mile cycling challenge. She shares how the idea came about and discusses why the support of the MS Trust was invaluable following a multiple sclerosis diagnosis.
Sign up for updates from us
Keep up-to-date with the latest MS news, explore new research, read the stories of people living with MS, find out practical tips from MS experts, and discover exciting fundraising opportunities.