CORONAVIRUS UPDATE: Mon 22nd February 2021
As the Coronavirus pandemic continues, advice from the government and NHS will be regularly changed and updated. On this page we attempt to interpret the latest information and advice into guidance for people with AT and their families and carers.
Latest update from UK Government (England)
Please note: England is still in a national lockdown. You must stay at home, leaving only where permitted by law, and follow the rules in this guidance.
From 8th March, some of the rules in England on what you can and cannot do will be changing. Please see the governments publication ‘COVID-19 Response – Spring 2021’ for more details about the road map out of the current lockdown for England. This publication explains how the restrictions will be lifted over time and can be found here
Latest update from the Scottish Government
The Scottish government are expected to make further announcements about their phased approach to lifting lockdown restrictions this week. For more details please read the most recent guidance here
Latest update from the Welsh Government
All of Wales remains in lockdown (alert level 4). More detail on what the government guidance means for you can be found here
Latest update from the Northern Ireland Government
Current regulations are in place until 1st April 2021. They will be reviewed on 18 March 2021. More details on the current restrictions can be found here
Latest update from the Republic of Ireland Government
The Republic of Ireland remains in alert Level 5. These measures will stay in place until at least 5th April 2021. More detail on the governments plan to lift these restrictions can be found here
Clinically Extremely Vulnerable (CEV) people
People who are still categorised and CEV are being advice to continue to follow shielding advice until March 31st.
More information about shielding can be found here
People who have received a COVID 19 vaccination are advised to continue following shielding advice.
Those affected are eligible for support to stay at home, including free delivery of medicines (where friends, family, or local volunteers cannot provide help) and statutory sick pay where unable to work from home.
If you remain unsure if you are considered CEV, our advice is to follow shielding guidance and await further advice from your local clinicians.
Covid-19 Research update
The UK Primary Immunodeficiency Network (UK PIN) are about to launch a research study to explore how effective COVID vaccinations are for people affected by primary and secondary antibody deficiency (PAD/SAD). This is a vital piece of research because as yet, no one knows what level of protection people with antibody deficiency will develop after immunisation through antibody or T-cell responses.
This new study will hopefully help increase understanding about how COVID affects people with antibody deficiency, including finding out how common asymptomatic/symptomatic COVID infection has been in this group, how often/how long the virus persists and if COVID infection results in protective antibody or T-cell responses.
The researchers aim to recruit over 1000 adults with PAD/SAD over the next six months through collaboration with as many immunology centres as possible.
Read more about this exciting new study here:
Updated advice on vaccine priority groups
Covid-19 Vaccine Queries
We continue to receive numerous calls and emails from the AT community with questions about Covid-19 vaccines. Please be assured we continue to communicate with both specialist AT services in Nottingham and Cambridge about all these queries.
Our clinicians tell us there are still lots of unanswered questions about the virus and vaccines and say the situation remains very ‘fluid’ and is rapidly evolving.
Immunologists have explained that both the Pfizer and Astra Zeneca vaccines might be considered unsuitable for individuals with an AT diagnosis NOT because there are safety concerns, but because people with AT may not respond to the vaccines.
These vaccines are not considered live vaccines and, as with the influenza vaccine, people with immune deficiency are being advised to take the vaccine if it is offered, as they may derive some benefit.
Studies are in progress to look at the nature of the immune response to these vaccines in a wide range of individuals.
Please keep checking the PID UK website and vaccine information section on the UK Govt website for further information via the relevant links below:
Read PID UK vaccine information here:
Read UK Govt vaccine information here:
Vaccine information for children with AT:
Advice received from the Immunology team at the Nottingham Paediatric AT Service, is for all children with AT to accept a Covid-19 vaccine when offered. If there are reasons why any child cannot have the vaccine e.g. allergies, this will be assessed by the vaccine administration team. We have also been advised that it may take some time before children are offered a vaccine.
Children’s AT Service clinic appointments:
For now, the Nottingham clinic service will continue to offer face to face appointments. Sandra Hufton (lead nurse) will liaise with families and the AT Society regarding these clinic appointments and necessary arrangements.
Shielding information for adults with AT:
Papworth AT service colleagues have informed us that ALL adults with AT are being advised to shield, this includes those adults who have not yet been seen at the Papworth Adult AT service. Please see the shielding advice section below for further details.
Vaccine information for adults with AT:
Advice received from the Immunology team at the Papworth AT Service, is for all adults with AT to accept a Covid-19 vaccine when offered. If there are reasons why someone cannot have the vaccine e.g. allergies, this will be assessed by the vaccine administration team.
Adult AT Service clinic appointments:
All AT clinic appointments have now been postponed until at least mid February 2021. This is because Royal Papworth Hospital is being used to treat Covid patients.
Shielding guidance is currently being updated, so keep a close check on the relevant Government links below to learn more about what advice is being given in your Nation.
We also strongly advise you to keep a close eye on your local authority website, especially as lockdowns begin to change around the UK. You can find your local authority website by entering your postcode here
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.
If someone with AT or a family member has Covid-19 symptoms
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 pediatric 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 through, please contact us.