CORONAVIRUS UPDATED 12th August 2020
As the Coronavirus pandemic develops, advice from the government and NHS is changing from day to day. On this page we attempt to interpret the latest information and advice into guidance for people with AT and their families and carers.
More information can be found on our Frequently Asked Questions sheet.
Telling the NHS about AT and Coronavirus
If you need to contact the NHS about a possible case of Coronavirus in someone with AT, you must tell them about AT. If you are not sure what to say, we have prepared a document to help you here.
AT and Covid-19 – Advice and Support Webinar
Here Anne introduces the AT Society’s new pre-recorded webinar initiative, due to be recorded and ready for viewing on Friday 21st August 2020.
Updates to shielding guidance
As you are aware, general Shielding advice in the UK has already been (or is due to be) paused. In England, Scotland and N. Ireland Shielding was paused from 1st August. In Wales, it will be from 16th August. More information on Shielding can be found here:
Advice on the Republic of Ireland’s Cocooning guidance has also been relaxed, but some restrictions are still in place. More detail can be found here:
Despite the general relaxing of Shielding there are, and will continue to be, exceptions to the overall advice when community outbreaks are identified in different parts of the country. If you live in one of these areas, you should be contacted by the Government/NHS Shielding service and given specific advice on what to do. However, we would also urge you to look at your local councils website to find out the specific measures in place for your locality. You can find your local council details using your postcode here:
We have been advised that the Shielded Patient List (SPL) will still be maintained whilst the shielding programme is paused, because the government/NHS may need to advise people to shield again if there is an increase in transmission of coronavirus in any community.
We have also been informed that conversations should take place with families of every child/young person on the SPL before the start of the new school term, to discuss whether they are still considered clinically extremely vulnerable.
All children and young people currently included on the SPL should also be reviewed by their clinical team, with reference to the new advice from the Royal College of Paediatrics and Child Health.
While there is evidence that face coverings help prevent people carrying the virus from spreading it, wearing a mask or cover will not necessarily protect you from catching it from other people.
Please remember social distancing and vigilant hand hygiene remain extremely important. Make sure you take all steps to avoid the possibility of infection and don’t let the face covering lull you into a false sense of security.
England: Wearing a face covering will become mandatory in shops and supermarkets in England from Friday 24th July. People not wearing a face covering can be fined up to £100, but reduced to £50 if paid within 14 days for a first offence. Face coverings are not required in places where it’s not practical e.g. pubs, cafes or restaurants. Children under 11 yrs. old and those with certain jobs or disabilities are exempt.
Scotland: Wearing face coverings in enclosed spaces has been compulsory in Scotland since 10th July. Anyone not wearing one can be issued an on the spot fixed penalty notice of £60 – this can increase if there are continued breaches. People with certain medical conditions or disabilities, and children under five are exempt.
Face covering rules on public transport:
England: Since 15th June, anyone travelling by bus, train, ferry or plane in England must wear a face covering. Some passengers are exempt from the rules including:
- Children under 11
- People with disabilities
- Those with breathing difficulties
- Anyone travelling with someone who relies on lip reading
If it is “reasonably necessary” for you to eat or drink, you can remove the face covering to do so.
People can be refused travel if they don’t follow the rules, and can be fined as a last resort. Public transport excludes cruise ships, school transport, taxis and private hire vehicles. However, ride-sharing company Uber has made face coverings compulsory.
Scotland: It is compulsory to wear face coverings on all public transport
Wales: Coverings will be made mandatory on public transport from 27th July. These coverings should be made from cotton and three layers thick. It’s also recommended that coverings are worn whenever social distancing is not possible.
Northern Ireland: The wearing of face coverings on most buses, trains and ferries became mandatory in Northern Ireland on 10th July.
Republic of Ireland: Face coverings have been required on public transport since Monday 13th July.
Wearing a cloth face covering is also recommended in situations where it is difficult to practise social distancing, for example in shops.
Update on shielding advice for England, Scotland, Wales and Northern Ireland
The UK government updated its guidance for people who are shielding in England and laid out a series of next steps for further relaxing of shielding guidance. The Northern Ireland government has also updated their advice and are following a similar pathway as in England.
The step changes will come into effect on 6th July and 1st August, but only if the scientific evidence shows a continued decrease in the community Covid-19 infection rate. For now, you are advised to continue to shield and observe strict social distancing when going outside.
Wherever you live in the UK, strict social distancing, including staying at least two metres apart from others, is still really important. People who are shielding should still avoid all non-essential face to face contact, including going to supermarkets or pharmacies. The support for shielded people remains in place.
The decision to go outside is yours. If you do decide to go out, the best ways to protect yourself are to:
• Keep the number of visits outside to a minimum
• Go on your own if possible, or with members of your household. If you live alone, you can spend time outdoors with one person from another household (this should ideally be the same person each time)
• Go out when there are fewer people around, such as early in the morning
• Ideally spend time in open areas
• Always keep a distance of 2 metres from people not in your household
• Do all you can to minimise contact with people not in your household
• Do not share or exchange personal belongings (such as cups) with other people
• Avoid going into enclosed spaces, as well as shops and other buildings
• Spend as long as you feel comfortable outside.
If you would prefer not to go outside, try spending time with the windows open, to let in fresh air and get some natural sunlight.
Going outside isn’t mandatory and if you don’t feel comfortable going outside, there’s no reason to do so. It might help to discuss the decision with your GP or hospital clinician.
Please see the latest shielding guidance for each nation below.
Everyone who has been shielding in England will receive a letter explaining the changes to the guidance in the coming weeks. Here is a brief summary of the next steps;
On 6th July if the risk continues to be low, people who are following the shielding advice will be able to meet up to six people outside of their home, as long as social distancing is strictly observed. If you are shielding alone or are a single parent, you can also form a support bubble with one other household from 6th July.
From 1st August the government plans to pause shielding, but you will be advised to continue to adopt strict social distancing measures. This means if you want to go out to more places and see more people you can, but you should take particular care to minimise contact with others outside your household or support bubble.
This guidance remains advisory and scientists will be carefully monitoring the community infection rate as we move in the autumn/winter season.
Detailed information on the next steps for the shielding group in England (including advice on returning to work, schools re-opening and continuing to receive local support) can be found here
Shielding advice in Scotland has been extended to 31st July.
People who are shielding will continue to receive the support they have been getting, including pharmacy deliveries and free weekly food boxes.
From 19th June, people shielding in Scotland can go outside for any amount of time.
• To meet up with one other household per day outdoors, with a max of 8 people in the group
• To take part in non-contact outdoor activities, such as golf, hiking and fishing.
For full shielding guidance for Scotland please click here
Shielding advice in Wales is in now place until at least 16th August 2020
People who are shielding in Wales can take unlimited exercise and meet people from another household if they want to. However the advice to strictly follow physical distancing remains the same (2 metres away from anyone not in their household), as does practicing good hand hygiene and avoiding touching things touched by others
Letters are being sent to everyone in Wales who is shielding to explain the next steps. The Chief Medical Officer will then send another letter advising what to do after 16th August 2020.
For full shielding guidance for Wales please click here
From 6th July, if the risk continues to be low, people who are following the shielding advice are able to meet up to six people outside of their home, as long as social distancing is strictly observed. If you are shielding alone or are a single parent, you can also form a support bubble with one other household from 6th July
From 31 July, it is anticipated that shielding for extremely vulnerable people will be paused. More information is available on the following page:
Children returning to school
We hope to have more detailed guidance from the government soon for those children who have been shielding and the next steps for returning to school. Until we have this information, our advice is to continue to follow the guidance below.
In England, some children have been invited to attend schools again, particularly in years 1 and 6. However, the government has now rolled back its ambitions to get children back to school saying that most children will now not go back to school until September.
The policy is far from clear, and some children have been asked to return, However, this is not the same across the country, and as far as we are aware, it is not a legal requirement that children do go.
A number of families have contacted us to ask about this.
For the moment, we would strongly advise families with a child with AT that, unless there are very particular circumstances, neither the child with AT nor their siblings should return to school.
Nevertheless, we realise that individual family circumstances are different, and families will have to assess their own situation and make their own decisions. However, we urge them to do this bearing in mind our guidance above.
In Wales, the current plan is for schools reopen from 29 June to all age groups for limited periods during the week.
Scottish schools are to reopen on 11 August, the start of the autumn term, though there will continue to be some home-learning.
In Northern Ireland, pupils preparing for exams and those about to move to post-primary schools will be invited back in late August, with others returning on a phased basis in September.
If the situation changes, and as we get closer to the above dates, we will update our guidance.
Supporting your children’s education during coronavirus (COVID-19):
Information, guidance and support for parents and carers of children who are learning at home.
Due to the coronavirus (COVID-19) outbreak, schools, colleges and childcare providers will remain closed until further notice (except for children of critical workers and vulnerable young people). The UK government has stated that schools will only reopen when scientific advice indicates it is safe to do so. The approach to reopen schools will be decided jointly with the relevant education/care sector organisations.
We recognise the challenges these closures bring to both parents and teachers and the concerns it raises about the potential impact this will have on young people’s development and overall wellbeing. For this reason, the government and the BBC have produced a library of resources to cover a variety of subjects for all key stages, including tips on how to provide structure to a young person’s day and suggestions for fun activities. This also includes SEN resources.
Parents are not expected to act as teachers, or to provide the activities and feedback that a school or nursery would. There are so many practical and emotional difficulties to navigate in these demanding times. Just do your best to help support your children’s learning and focus on taking care of yours and your families wellbeing.
Financial help and advice
Martin Lewis, Money Saving Expert, has been updating their website to answer questions that you may have around your financial situation and the rights you have. For more information visit www.moneysavingexpert.com/news/2020/03/uk-coronavirus-help-and-your-rights/
People with AT
People with AT are included within the 1.5 million people considered by the NHS to be who are at very high risk of severe illness from coronavirus (COVID-19) because of an underlying health condition. The advice for this group, and thus for everyone with AT, is that you undertake the rigorous protection regime known as “shielding”. You can find out about this here
We anticipate further updates and advice for those people who have been advised to shield in the coming weeks. For some people this updated advice may be via a letter from the NHS, however we will regularly update this page as and when we have further details.
For now, we urge people living with AT to follow the shielding and any updated guidance as seriously and closely as you possibly can.
We do not know how much more vulnerable to the virus people with A-T may be, and it would be great if we never had to find out. If shielding causes you particular difficulties, please do contact us to see what we can do to help.
Most of the advice for people living with AT on shielding that we have published to date has been produced by the NHS in England. While the approach is pretty standard across the whole of the United Kingdom, Scotland and Wales have produced their own specific guidance and there is also advice from the Irish Government. These can be found via the following links.
Irish Republic bit.ly/Covid19Ireland
What does this mean for parents and other family members?
The guidance includes measures regarding other family members such as that people shielding should:
- Minimise as much as possible the time they spend in shared spaces such as kitchens, bathrooms and sitting areas
- Aim to keep 2 metres (3 steps) away from people they live with and where possible use a separate bathroom from the rest of the household. If they do share a toilet and bathroom, it is important that they are cleaned after use every time.
- If you can, you should take your meals back to your room to eat.
However, in the case of children or people who require help with moving, feeding or personal care this is clearly impractical. If all family members are able to remain within the home, this is maybe not such an issue, but if any continue to have to leave the house, for work or other reasons, we would recommend where possible that a principal carer undertake the shielding along with the person with AT and that other family members, who do go out, keep their distance as above.
Obviously, these rules are not written in stone and will have to be adapted to the circumstances of individual families, using common sense. However the AT Society strongly advises adhering to the principle:
People with AT and their families should undertake the most rigorous regime of shielding from the Coronavirus that they possibly can.
If a person with AT or one of the family develops symptoms of the virus
If someone with AT (or a close family member) shows any symptoms of the virus, contact 111 as soon as possible. Explain that the person has AT and what that means (refer them to our website).
We also strongly advise that you let us know via firstname.lastname@example.org or by phoning 01582 760733 so that we can make sure you have the relevant information and support. If you have contact details for the Nottingham and Papworth clinics you can contact them directly.
If you have concerns about your child’s health
We have received a message from the British Association of Childhood Disability, forwarded to us by the team at Nottingham. It says that many paediatricians are concerned that children are presenting late to paediatric emergency departments due to worries about exposure to Covid-19 or not wanting to be a drain on NHS resources. There is a risk that delays may be dangerous for the child and also increase the demand for critical care.
They have asked us to underline that paediatric emergency departments are safe and functioning well. If parents have serious concerns about their child’s health they should contact their GP and not be afraid to use the paediatric emergency department when it is required.
It is particularly important where children have long term or recurrent respiratory problems and difficulties with chest clearance to make sure you know who to call in the event of a deterioration when admission to hospital might be advisable. If you have any concerns about this, please do contact us on 01582 760733.
This page provides the latest information and advice that we have. However, we cannot cover every aspect of the condition and as we have said there is a lot that is not yet known.
So our last piece of advice is to read what you can and then use your common sense. The AT Society will be here right through the emergency to talk to, to give information and guidance and, where we can, practical support. If you do have further questions or want to talk anything though, please contact us.