CoronavirusCoronavirus n.sutherland@m… Wed, 05/26/2021 - 15:42
Last updated: May 2022
We will update this page whenever we have new information. Please also keep an eye on the NHS website which is regularly updated.
If you are looking for information about the coronavirus vaccines, please have a look at our dedicated vaccines page.
On Thursday 24 February 2022, the government announced that in England all remaining domestic restrictions will be removed. This is outlined in the government publication ‘Living with COVID’.
As there are still cases of COVID-19 in England, there continues to be a risk you could catch or pass on the virus, even once you are fully vaccinated. This means it’s important you understand and consider the risks of catching or spreading COVID-19 in all situations. The government is continuing to advise safer behaviours that can be adopted to reduce the risk of infection, in line with longstanding ways of managing most other respiratory illnesses. Precautions are still particularly important to those who are at higher risk if they catch COVID-19, but because of advances in vaccination and therapeutics, this group is now better protected. Most people previously considered clinically extremely vulnerable are now advised to follow the same general guidance as everyone else, because of the protection they have received from vaccination.
Individuals can still reduce the risk of catching and passing on COVID-19 by:
a. getting vaccinated
b. letting fresh air in, if meeting indoors, or meeting outside
c. wearing a face covering in crowded and enclosed spaces, especially where you come into close contact with people you don’t usually meet, and when rates of transmission are high
d. staying at home if you are unwell.
e. taking a test if you have COVID-19 symptoms, and staying at home and avoiding contact with other people if you test positive
f. washing your hands, and following advice to ‘Catch it, Bin it, Kill it’.
You can find out more here:
Am I vulnerable to COVID-19?
Some people living with a muscle-wasting condition were previously classed as ‘Clinically Extremely Vulnerable’ (CEV). If you were identified as someone who is CEV, you would have received a letter or email and been advised to shield earlier in the pandemic. There is no longer separate guidance for people who were previously CEV. The government have advised that most people who were CEV are no longer at substantially greater risk than the general population and are advised to follow the same guidance as everyone else. If you have not already, you are advised to get vaccinated and get a booster vaccine when offered.
There is a smaller group of people who remain at higher risk of serious illness from COVID-19 due to a weakened immune system (immunosuppressed). This group are being offered enhanced protections, such as specific treatments and/or additional vaccinations, alongside other protective behaviours. For information on this, please see our Vaccines or Community-based treatment pages.
You can find out more here:
If you have any questions about your individual condition, you should speak with your neuromuscular team.
You may wish to have one of our alert or symptoms cards to hand, which can help you in times of an emergency.
Guidance to help stop the spread of COVID-19
Guidance relating to coronavirus is different across the four nations of the United Kingdom.
Get vaccinated against COVID-19 – everyone ages 5 and over can book vaccination appointments.
Open doors and windows to let in fresh air if meeting people inside. Meet people outside if possible.
Remember the basics of good hygiene. Cover your nose and mouth when you cough and sneeze, wash your hands with soap and water or use hand sanitiser regularly throughout the day and clean your surroundings.
Consider wearing a face covering or face mask when it's hard to stay away from other people (particularly indoors or in crowded places).
The government will continue to assess the situation and the risks posed by COVID-19 and based on clinical advice, will respond accordingly to keep the most vulnerable people safe.
As a minimum, you should continue to follow the same guidance on staying safe and preventing the spread of COVID-19. You should consider advice from your specialist team on whether additional precautions are right for you. However, as someone with a health condition, you may want to consider if additional precautions are right for you.
To stay up to date with the latest advice in your region please follow the relevant links below.
Wales - https://gov.wales/coronavirus
We understand that these are difficult times, and you may be experiencing distress and concern. If you’re feeling overwhelmed, stressed, or anxious, and you require support with your mental health, please book a GP appointment or contact:
Samaritans - 116 123 (every day: 24 hours)
Give us a shout - text 85258 (24-hour text service)
British Red Cross - 0808 196 3651 (every day: 10am - 6pm)
You can also find further information on the NHS website.
There is no longer a legal requirement to work from home. However, employers have a legal responsibility to protect their employees and others from risks to their health and safety. Your employer should be able to explain to you the measures they have in place to keep you safe at work.
The Health and Safety Executive (HSE) have replaced COVID-19 restrictions with public health advice. Employers are no longer required to have specific measures in place.
If you need support to work at home or in the workplace you can apply for Access to Work. Access to Work may provide support for the disability-related extra costs of working that are beyond standard reasonable adjustments an employer must provide. Access to Work should prioritise applications from disabled people who are in the clinically extremely vulnerable group.
You may be eligible for Statutory Sick Pay or Employment and Support Allowance if you are sick or incapable of work, because of coronavirus or other health reasons, subject to meeting the eligibility conditions.
Kidney Care UK have put together some helpful guidance for people who are immunosuppressed and at a higher risk of illness from COVID-19, on how to talk to your employer about keeping safe in the workplace. You can refer to the following webpage for further information: Safe At Work downloadable letter for UK employers | Kidney Care UK | Kidney Care UK
VaccinesVaccines n.sutherland@m… Wed, 05/26/2021 - 15:46
Updated: May 2022
What will the coronavirus vaccine do?
The COVID-19 vaccines are designed to protect you from coronavirus by creating the antibodies and cells required to fight off coronavirus and provide immunity from the virus. Vaccines give the best possible protection against COVID-19.
This does not mean you cannot catch or spread the virus. as the vaccines are given in two doses, and the body takes time to create the protection it needs.
There are three vaccines being administered in the UK:
- Pfizer/BioNTech vaccine (Comirnaty) (5 years and over)
- Oxford/AstraZeneca vaccine (Vaxveria) (18 years and over)
- Moderna vaccine (Spikevax) (6 years and over).
Will the vaccines be safe for people with muscle-wasting conditions?
Advice from Professor Francesco Muntoni, Professor Ros Quinlivan, Dr Adnan Manzur and Dr Chiara Marini-Bettolo, the four neuromuscular experts leading the paediatric and adult North Star and SMA Reach networks of neuromuscular health professionals:
‘In line with the national and international guidelines, we can advise that the Pfizer/BioNTech, Moderna, and Oxford/AstraZeneca vaccine should be fine to receive for those living with a neuromuscular condition, including those on immunosuppression treatments. We therefore encourage you to get vaccinated at your earliest opportunity.
Those on immunosuppression may have a reduced immune response (in other words, the vaccine will be less effective) but can still have the vaccine.
It is important to remember that the Medicines and Healthcare products Regulatory Agency (MHRA) would not have licenced the vaccine if there were any doubts as to its safety.’
There are common side-effects from receiving the COVID-19 vaccine; you can refer to the information provided to you when you received your vaccine, or to the government website. If you have any concerns, you are advised to speak with your neuromuscular clinical team. If you have received a COVID-19 vaccination and have experienced side-effects, you can report all suspected side-effects to the MHRA by using the Coronavirus Yellow Card reporting system.
When will I receive a vaccine?
Everyone aged 5 and over is eligible to receive a 1st and 2nd dose of the COVID-19 vaccine. Those aged 16 and over, and some children aged 12 to 15, can get a booster dose to extend protection.
Some people aged over 12 with severely weakened immune systems may be offered a 3rd dose and a booster.
A spring booster (‘second booster’) is now being offered to people aged 75 and over, people who live in care homes for older people, and people aged 12 and over who have weakened immune systems.
If you have not yet received a vaccine or a booster, you can book an appointment on the NHS website or find a walk-in vaccination centre. If you cannot book appointments online, you can call 119, free of charge.
For more information about who can get a coronavirus (COVID-19) vaccine, please visit:
Advice for Scotland, Wales, and Northern Ireland
The general advice is for the whole of the UK. But you can follow these links to find out more specific vaccination information for these nations:
If you have any concerns relating to coronavirus or the COVID-19 vaccine, you are advised to speak with your neuromuscular clinical team.
Distance aware badgesDistance aware badges e.smith.bodie Mon, 06/28/2021 - 16:19
To make the public aware of the need to enforce strict social distancing MDUK is making available four badge designs that people can use when going outside to encourage others to stay back.
One of our four designs utilises the Bevan Commission’s ‘Distance Aware’ work in Wales – this is a simple yellow shield that emphasises the 2m social distance that needs to be followed.
The other three are designs created by MDUK supporters. Two are specifically designed for children coming out of shielding, and the other is for adults.
The use of these badges is entirely optional. You can download the PDF to print off to put in a lanyard case, or an A4 size in portrait or landscape if you want to attach it somewhere like a wheelchair.
The UK Government has also published social distancing cards and badges to download.
Bevan Commission ‘Distance Aware’ badge
If you need a lanyard to hold your Distance Aware badge, you can get an MDUK orange lanyard from our shop.
Community based COVID-19 treatmentCommunity based COVID-19 treatment i.mahmood Thu, 12/09/2021 - 09:30
The COVID-19 vaccines continue to remain the best way to defend against a coronavirus infection. However, for some people with certain health conditions there remains the risk of becoming seriously unwell with a coronavirus infection. In addition to the vaccines, the NHS are now offering new monoclonal antibody and antiviral treatments to individuals deemed to be at the highest risk from COVID-19. They are designed to help people in the community, who are in the earliest stages of infection, by stopping serious illness. To be effective, the treatments need to be given as soon as possible following symptoms and a positive lateral flow test. The following information will help you to understand more about the treatments and who might be able to access the treatments and how they can be accessed.
Who can access COVID-19 treatments?
You may be eligible for a COVID-19 treatment if all the following criteria apply:
- You are 12 and over
- You are at the highest risk of becoming seriously ill from a COVID-19 infection
- You have symptoms of COVID-19
- You have tested positive for COVID-19
You may be at the highest risk of developing severe disease from COVID-19 if you have one of the listed conditions below:
- Down syndrome
- certain types of cancer or if you've had treatment for a certain cancer
- sickle cell disease
- chronic kidney disease (stage 4 or 5)
- severe liver disease
- if you've had an organ transplant
- certain autoimmune or inflammatory conditions, such as inflammatory bowel disease
- HIV or AIDS and a weakened immune system
- a condition that affects your immune system
- a rare condition affecting the brain or nerves (multiple sclerosis, motor neurone disease, Huntingdon's disease, or myasthenia gravis)
Once a referral has been made to the Covid medicines delivery unit (CMDU), a doctor or a specialist will carry out an assessment to see if you will be eligible to receive the treatment.
What treatments are available?
The available treatments have shown a reduction in the risk of hospitalisation and severe illness. The following treatments are being delivered by the Covid Medicines Delivery Unit (CMDU) team and available on the NHS to those who meet the eligibility criteria:
- Paxlovid is an oral antiviral medicine. Paxlovid has many potential drug interactions, which means that it may not be suitable for many high-risk patients. The assessing clinician should be made aware of any medication you take to manage your condition, so they can make an informed decision about whether this line of treatment would be suitable.
- Sotrovimab is a biological medicine, also known as a neutralising monoclonal antibody treatment. It is a one-dose therapy, which needs to be given through a drip (infusion) in your arm and can only be delivered in a clinical setting, such as a care centre or a hospital. The CMDU will advise you on how and where you will receive this treatment, including information on how to travel there and back safely.
- Remdesivir is an antiviral treatment given through infusion like Sotrovimab, however unlike Sotrovimab, which only requires one treatment, remdesivir is given over three separate days. You can start remdesivir seven days after the onset of symptoms.
- Molnupiravir: is an antiviral medicine that works to stop the virus from growing and spreading. Like Paxlovid, this is an oral medicine that comes in capsules, and is to be taken at home. It is important to carefully follow the advice of the clinician who has prescribed this medication to ensure you are taking the treatment correctly.
For further information on the available treatments, please refer to the NHS website: https://www.nhs.uk/conditions/coronavirus-covid-19/treatments-for-coronavirus/
How to access treatments?
Access to treatments will be down to testing for a COVD-19 infection. In the early stages of the COVID-19 treatments rollout, access to these medicines were only available following a positive PCR test, and people deemed eligible at the time were advised to keep a spare PCR test kit at home in case they began to experience symptoms. PCR testing is no longer available in most areas of the UK. If you still have a PCR test kit at home, you can keep a hold of it as you may be asked to use it later by the NHS team arranging your treatment.
A lateral flow test (LFT) will need to be used to test for a COVID-19 infection. It is important to note that since the 1st of April, access to a LFT is not widely available for most people. However, for people who are eligible for COVID-19 treatments, it is possible to access to tests.
You should make sure that you have some test kits at home. If you need to order more tests, or you do not have any you should order your free tests via the GOV.UK website: https://www.gov.uk/order-coronavirus-rapid-lateral-flow-tests. You can also call 119 to order tests if you are unable to do so online.
If you begin to experience COVID-19 symptoms, you will need to complete a LFT following the kit instructions as soon as possible. You should do this even if your initial symptoms seem mild. It is important that the test you are completing is an NHS test, and not one you have purchased privately. This is because it is not possible to report the result of a private test on the GOV website and will mean that you cannot be contacted by the NHS about COVID-19 treatments.
Once you have carried out a test, you must report the result of the rapid test via https://www.gov.uk/report-covid19-result or by calling 119. It is important to carry out these steps without delay, so that you can be contacted by the NHS if your result is positive.
If you do receive a positive LFT and you are eligible for a COVID-19 treatment, the treatment will need to begin very soon after the start of your symptoms – this is so the medicine can work more effectively. You will usually be contacted within 24 hours of a positive result by a clinician from the NHS. The NHS doctor will need to speak with you to get some more information, they might ask some questions about any medication that you take. It’s important to let them know as much information as possible so they can check if treatment would be appropriate.
The NHS team that gets in touch will let you know which treatment will be suitable for you and they will give you the information on how to access this. Some of the COVID-19 treatments can be taken at home and others will need to be given in hospital or health clinic. All treatments for COVID-19 are free on the NHS, and you will never be asked to pay for any prescribed medication.
If you have not been contacted by the NHS within 24 hours of a positive test, and are eligible for treatment, you should contact your GP practice, specialist consultant or you can call 111. An urgent referral can be made from your GP, specialist or via 111.
Treatment advice for Scotland, Wales, and Northern Ireland
For the latest information about the treatments in the other UK nations, please visit:
- Northern Ireland Treatments for coronavirus (COVID-19) | nidirect
- Scotland Coronavirus (COVID-19): Treatments | NHS Inform
- Wales COVID-19 treatments | GOV.WALES
If you have any questions or concerns relating to COVID-19 treatments and your neuromuscular condition, we advise that you contact your GP or your neuromuscular team directly.
Separate to the COVID-19 treatments available through the NHS, there are some antiviral medicines available through a UK wide clinical study led by the University of Oxford, which is known as PANORAMIC.
This study investigates new antiviral treatments for COVID-19 and the aim of this is to find out whether antiviral medicines administered to those with COVID-19 in the community reduce the need for hospital admission, and whether they help people to recover quicker. Currently, the antiviral treatments Molnupiravir and Paxlovid are being investigated.
The following criteria need to be met to be eligible to join this study:
- you are experiencing COVID-19 symptoms, which have begun in the last 5 days
- AND you have had a positive COVID-19 test
- AND you are aged 50+, OR you are aged 18 and over with one of the conditions listed here.
You do not need to be vaccinated against COVID-19 to take part in this study.
If you think you would be eligible to take part in this study or want to find out more about what is involved in the trial, please follow this link for more: https://www.panoramictrial.org/participant-information.