CoronavirusCoronavirus n.sutherland@m… Wed, 05/26/2021 - 15:42
Last updated: 5 August 2021
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, we have a dedicated vaccines page.
Restrictions and guidance
Guidance and restrictions relating to coronavirus are different across the four nations of the United Kingdom.
In February 2021 the UK Government published ‘COVID-19 Response – Spring 2021’, setting a roadmap out of the current lockdown for England.
On 19 July England moved to step 4 of the road map, with many of the legal restrictions that the Government had introduced through the pandemic lifted. Cautious guidance still remains. The Government also laid out five principles for managing COVID-19;
- Reinforce the country’s vaccine wall of defence through booster jabs and driving take up.
- Enable the public to make informed decisions through guidance, rather than laws.
- Retain proportionate test, trace and isolate plans in line with international comparators.
- Manage risks at the border and support a global response to reduce the risk of variants emerging globally and entering the UK.
- Retain contingency measures to respond to unexpected events, as we learn to live with the virus.
From Monday 16 August, people in England who are double-vaccinated (with at least two weeks since their second dose) or aged under 18 will no longer be legally required to self-isolate if they are identified as a close contact of a positive COVID-19 case. More information can be found at the link below: https://www.gov.uk/government/news/self-isolation-removed-for-double-jabbed-close-contacts-from-16-august
Most legal restrictions to control COVID-19 have been lifted at step 4. This means that:
- You do not need to stay 2 metres apart from people you do not live with. There are also no limits on the number of people you can meet.
- However, in order to minimise risk at a time of high prevalence, you should limit the close contact you have with those you do not usually live with, and increase close contact gradually. This includes minimising the number, proximity and duration of social contacts.
- You should meet outdoors where possible and let fresh air into homes or other enclosed spaces.
- The Government is no longer instructing people to work from home if they can. However, the Government expects and recommends a gradual return over the summer.
- The requirement to wear face coverings in law has been lifted. However, the Government expects and recommends that people wear face coverings in crowded areas such as public
- There will no longer be limits on the number of people who can attend life events or on group sizes for attending communal worship.
- We need to learn to live with COVID-19 and manage the risk to ourselves and others.
Find more information about what you can and can’t do here.
We understand that these changes may be causing you some distress and concern. If you’re feeling overwhelmed, stressed or anxious about restrictions easing and you require support with your mental health, please call our helpline on 0800 652 6352, or you can 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)
Further information can also be found via the NHS website.
Shielding for the clinically extremely vulnerable was paused on 1 April. This means that people who are classed as clinically extremely vulnerable and who have previously been advised to shield will no longer be so, and should follow the national guidance alongside the rest of the population.
As restrictions have been eased following the move to Step 4 of the roadmap, the government are advising clinically extremely vulnerable people, as a minimum, to follow the same guidance as everyone else.
However, as someone who is at a higher risk of becoming seriously ill if you were to catch COVID-19, you may wish to think particularly carefully about additional precautions you might wish to continue to take.
Individuals may choose to limit the close contact they have with those they do not usually meet with in order to reduce the risk of catching or spreading COVID-19, particularly if they are clinically extremely vulnerable and if COVID-19 disease levels in the general community are high. It is important to respect and be considerate of those who may wish to take a more cautious approach as restrictions are lifted.
Everyone on the Shielded Patient List should already have been offered a COVID-19 vaccine. If you have not yet received your first dose, please contact your GP or book your vaccination appointment online. If you have received your first dose, you should still ensure you take up your second dose of the vaccine when it is offered to you. Having two doses should further increase your level of protection.
All 16 and 17-year-olds in the UK will start being offered a first dose of the COVID-19 jab within the next few weeks. We recommend keeping an eye out for when appointments starting becoming available. As part of the wider roll out of the vaccination, some 12-15-year-olds with underlying conditions will also be able to receive the vaccine. For more information about eligibility, please see our vaccination page.
No vaccine is 100% effective and therefore even if you have had both doses, there is still no absolute guarantee that you will not become ill from COVID-19. As such, you should continue to take the extra precautions set out in this guidance to help protect yourself. Read more here.
It’s still important people continue to follow the national rules and take the additional precautions set out in the guidance to keep themselves as protected as possible. Please see our dedicated vaccination page.
Scotland moved to level 0 from Monday 19 July 2021. The legal requirement for physical distancing and limits on gatherings was removed on 9 August when all venues across Scotland re-opened. Some protective measures remain in place such as the use of face coverings indoors and contact details being collected as part of Test and Protect. Adults identified as close contacts of someone who has tested positive for Covid-19 will also no longer be automatically required to self-isolate for 10 days if they are double-vaccinated (with at least two weeks since their second dose), have no symptoms and have a negative PCR test. The same conditions will also apply to anyone aged between five and 17 years old.
From Saturday 7 August, Wales completed the move to alert level 0. Face coverings remain a legal requirement indoors, with the exception of hospitality premises. Fully vaccinated adults, people under 18 and vaccine trial participants will not need to self-isolate if they are a close contact of someone with coronavirus.
Read more: https://gov.wales/alert-level-0
Restrictions in Northern Ireland were eased further on 26 July. It is mandatory to wear face coverings in particular circumstances and on public transport. From Monday 16 August, if you are fully vaccinated (more than 14 days since the second dose) you no longer need to self-isolate for 10 days if you have been in close contact with someone who tests positive for COVID-19. The current regulations are available on the Department of Health website.
Am I Clinically Extremely Vulnerable?
Only some people living with a muscle-wasting condition will be classed as ‘Clinically Extremely Vulnerable’. We have gathered guidance and advice from a group of neuromuscular clinical experts, who are leaders in their field. They have worked with people with a range of neuromuscular conditions, and they lead the adult and children’s NorthStar and SMA REACH clinical networks.
This clinical expert group agrees that people living with a muscle-wasting condition likely to be classed as ‘clinically extremely vulnerable’ are those:
- on oral steroids or other immunosuppressants (such as methotrexate). You should not stop treatment, and if possible ensure that you have a supply at home. If you become unwell, you may need to increase the dose as advised by your specialist service
- at respiratory risk (ventilated (tracheostomy, BiPAP, CPAP)), Forced Vital Capacity less than 60%, weak cough, congenital myasthenic syndrome or myasthenia gravis
- usually advised to receive the annual influenza vaccine
- with abnormal cardiac function as part of their condition
- who have difficulty swallowing, such as those with myotonic dystrophy and OPMD
- with risk of decompensation (functional deterioration of a bodily system) during infection such as mitochondrial disease.
If you are classed as ‘Clinically Extremely Vulnerable’ you will have received a letter from the NHS or from your GP telling you this earlier in the pandemic. People in this group would have received a further letter following the new national restrictions which were introduced from 2 December, to confirm that they are still identified as clinically extremely vulnerable, and outlining the support that may be available to them.
Since 1 April formal shielding has been paused, for those people that are classed as ‘Clinically Extremely Vulnerable’.
If you have any questions about your individual condition, you should speak with your neuromuscular team.
Also further guidance can be found here.
Is there specific information for families of people with Duchenne muscular dystrophy?
On 24 April 2020, the journal Muscle Nerve published an article entitled ‘The care of patients with Duchenne, Becker and other muscular dystrophies in the COVID-19 pandemic’.
Leading neuromuscular expert clinicians have also developed this guidance for people with Duchenne, who use steroids:
- be sure to have a sufficient dose of steroids available at home
- ensure you have a strategy or at least knowledge of how to deal with the adrenal suppression in case of a severe superimposed infection
- The World Duchenne Organisation has regularly updated information about COVID-19 and Duchenne muscular dystrophy (people living with Becker muscular dystrophy may also find this a useful resource)
- where possible, make sure you have to hand, which can help in an emergency.
What should you do?
In addition to making sure you have an alert or symptoms card to hand, which can help in times of an emergency, we recommend that you, and any personal assistants or carers who support you, follow the NHS guidelines.
- Always carry tissues with you and use them to catch your cough or sneeze. Then bin the tissue, and wash your hands, or use a sanitiser gel.
- Wash your hands for at least 20 seconds with soap and water. If you are not shielding, this is particularly important especially before leaving home, after using public transport (although we recommend that you avoid public transport if at all possible), upon arriving somewhere, before and after eating, and after using the bathroom. Use a sanitiser gel if soap and water are not available.
- Avoid touching your eyes, nose and mouth with unwashed hands.
- Avoid close contact with people who are unwell.
From 19 July, social distancing measures have ended in the workplace and it is no longer necessary for the government to instruct people to work from home.
However, employers still 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. Some employers may request employees to undertake regular testing for COVID-19 to identify people who are asymptomatic.
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.
The Coronavirus Job Retention Scheme (furlough) is available until 30 September. You may be eligible throughout this period, even when shielding is paused, providing your employer agrees. You should have a conversation with your employer about whether this is possible if you feel this is something that you would benefit from.
You may be eligible for Statutory Sick Pay or Employment and Support Allowance if you are sick or incapable of work, either due to coronavirus or other health reasons, subject to meeting the eligibility conditions.
It is important that children attend school for their education, wellbeing, mental health and long-term development. Clinically extremely vulnerable pupils and students should have returned to their school or other educational setting. This includes early year’s provision, wraparound childcare and applicable out-of-school settings.
Where parents are concerned about their child’s attendance, they should speak to their child’s educational setting about their concerns and discuss the measures that have been put in place to reduce the risk. They should also discuss other measures that can be put in place to ensure their children can regularly attend.
Also rapid lateral flow tests available have been made available to schools and colleges. Lateral flow tests can also be accessed directly for households of primary and secondary school pupils and for households of primary and secondary school staff. This testing will also help keep safe those in the community who are clinically extremely vulnerable and their families.
All early years providers, schools and colleges are continuing to put in place measures to help minimise the risk of spreading COVID-19. These include:
- use of face coverings in specific situations
- enhancing cleaning
- managing suspected and confirmed cases
VaccinesVaccines n.sutherland@m… Wed, 05/26/2021 - 15:46
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.
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 approved for use in the UK: Pfizer/BioNTech mRNA vaccine (16 years and over), Oxford/AstraZeneca vaccine (18 years and over), and Moderna mRNA vaccine (18 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 who are 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 (i.e the vaccine will be less effective) but can still have the vaccine.
In line with recent Medicines and Healthcare products Regulatory Agency (MHRA) guidance people under 30 who have had the first Oxford/AstraZeneca vaccine are advised to take the second one, unless they experienced adverse effects relating to major blood clotting following their first one. People under 30 who have not had their first vaccine will be offered an alternative to the Oxford/sAtraZeneca vaccine.
Please make every effort to avoid exposure to COVID-19. If you feel unwell then please seek a PCR-based test from the national testing centres. If this is positive please let your specialist teams know as soon as you can.
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 on 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?
The Joint Committee on Vaccination and Immunisation (JCVI) is responsible for advising UK health departments on immunisation and for setting the priority order in which people will have access to a COVID-19 vaccine. Their initial guidance, published at the end of September 2020, highlighted age as the likely most important factor in determining priority, and recognised the need for health and social care workers to receive early access too.
Under these initial proposals, it was unlikely that anyone under 65 with a muscle-wasting condition would have been higher than priority group six (out of 11).
We felt this was unfair to the many people living with a muscle-wasting condition classed as clinically extremely vulnerable to COVID-19, who have been shielding for much of the year. So we did the following:
- sought clarity on this, working through the Shielding and High Risk Coalition
- wrote to the JCVI, along with SMA UK, Genetic Alliance UK, Neurological Alliance, Disabled Children’s Partnership, Angelman UK and Contact
- joined a wider group of charities on 18 November 2020 to meet with representatives of Public Health England, MHRA and the Department of Health and Social Care to raise our concerns directly with them.
On 2 December 2020, the JCVI published its final advice on priority groups for coronavirus vaccination. We warmly welcomed news that our concerns were heard and that people classed as clinically extremely vulnerable were moved up the priority order and are now in priority group four. You can see the full guidance here.
The vaccination programme is currently focusing on priority group four, which includes all those 70 years of age and over and clinically extremely vulnerable individuals. If you are in this group you should be contacted automatically, but you can also book an appointment on the NHS website.
Summary of priority groups – relevant for individuals with muscle-wasting conditions
- Priority group 2: This includes paid personal assistants (PAs) and employed carers
- Priority group 4: This includes adults classed as clinically extremely vulnerable. Some people living with a muscle-wasting condition are classed in this way
- Priority group 6: This includes adults who are classed as vulnerable or high risk. “A neurological or muscle wasting condition” is now included in the Government’s clinical condition list for this category. This priority group also includes carers who are in receipt of carers allowance, and an unpaid main carer (this will include family members)
It should be noted that the JCVI has highlighted that many individuals who are clinically extremely vulnerable will have some degree of immunosuppression or be immunocompromised, and may not respond as well to the vaccine. People in this group are advised to continue to follow advice on reducing their risk of infection.
On 29 March government advice was updated for adults living with adults who are immunosuppressed. JCVI recommends that adults living with adults who are immunosuppressed should be prioritised for the COVID-19 vaccine. Find more information on the government website.
Family carers, Personal Assistants (Pas) and care workers
According to government advice paid PAs or carers should contact their local authority to self-identify and make themselves known. By doing this they should be placed into vaccine prioritisation group 2.
Use this online tool to find your local authority.
However, we know that this process is not uniform and some local authorities have made this process more straightforward than others and a next best option will be for the paid PAs or carers to self-identify to their GP.
In terms of family members and unpaid carers of people who are clinically extremely vulnerable, the Department of Health and Social Care has confirmed to the Shielding and High Risk Coalition that “unpaid/informal adult carers” are included in priority group six.
On 7 April following an MHRA report, the JCVI advised that under-30s with no underlying health conditions should be offered an alternative to the AstraZeneca vaccine where available. Those who have already received their first dose of the AstraZeneca jab should continue to be offered a second dose of the same jab. For more information, you can read the JCVI statement and the MHRA press release. Please speak to your doctor about any concerns you may have.
All 16-17-year olds are now eligible to receive the COVID-19 vaccination. If you or your child are in this age group you should be contacted automatically, but you can also book an appointment on the NHS website.
On 20 July, the UK's Joint Committee on Vaccination and Immunisation (JCVI) announced that children aged 12-15 who have a severe neurodisability, Down's syndrome, immunocompromised and those with a profound and multiple learning difficulties will be offered the Pfizer-BioNTech vaccine.
The Government has since released further guidance on the eligibility of those between the ages of 12-15 years old for the COVID-19 vaccination. On 3 August 2021, the Government green book was updated to clarify this will include:
- Neuromuscular conditions that compromise respiratory function. This includes conditions (such as muscular dystrophy) that may affect swallowing and protection of the upper airways, leading to aspiration, and reduce the ability to cough and resulting overall in increased susceptibility to respiratory infections
- Immunosuppression due to disease or treatment, including individuals treated with systemic steroids for more than a month at a dose equivalent to prednisolone at 20mg per day (or for children under 20kg body weight a dose of 1mg/kg or more per day).
- Individuals aged over 12 years who are contacts of immunosuppressed individuals or who expect to share living accommodation on most days (and therefore for whom continuing close contact is unavoidable) with individuals of any age who are immunosuppressed.
We hope this improves clarity around eligibility but please contact your specialist consultant if you are still unsure whether your child is now eligible or if you believe they might be and haven’t been offered the vaccine
On 1 September 2021, the JCVI published advice that people with severely weakened immune systems should have a third vaccine as part of their primary COVID-19 vaccination schedule. This third dose should be offered to people over 12 who were severely immunosuppressed at the time of their first or second dose, including those who are on high doses of steroids.
A third primary dose is an extra ‘top-up’ dose for those who may not have generated a full immune response to the first 2 doses rather than a 'booster' jab. This top up jab should be offered at least 8 weeks after the second dose but with some flexibility to adjust this timing. Decisions on whether the administer this third jab is being decided on a case-by-case basis and your clinical team will contact you if you are eligible.
Advice for Scotland, Wales, and Northern Ireland
This advice is for the UK, however, find here links for the three devolved nation’s individual vaccination information –
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.