CORONAVIRUS UPDATED 6/4/20
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.
‘Extremely Vulnerable’ NHS letter
By now, everyone with an A-T diagnosis in the UK should have received information from the NHS regarding being included in the ‘extremely vulnerable’ group.
The NHS information will be sent either by text, email or letter and contain details about the importance of undertaking ‘shielding’ strategies for 12 weeks. It will also include information on how to access support to get food and medicines etc. if you don’t have family or friends nearby to help you. You can register for additional support by visiting www.gov.uk/coronavirus-extremely-vulnerable.
If you are living alone or without local support, we strongly urge you to reach out to neighbours, local community groups/organisations (including religious groups) and ask for help. There are many, many people in every community who want to help. So please ask and allow them to give you the support you need.
People with conditions closely related to AT
We now have some good news for children and adults in the UK with a diagnosis of AT, AT like disorder, AOA1 or AOA2. As previously reported, we raised the issue with both clinics and NHS commissioners that many people were not being contacted by the NHS coronavirus service to advise about shielding measures, or the extremely vulnerable person central register. We asked that families let us know if they had not been contacted by the NHS. We then passed this information onto the AT clinical leads.
We are now delighted to announce that those children with any of the above conditions have been added to the central register. Letters of confirmation will be sent out from Nottingham on Friday 3rd April (to those who have not yet received info from the NHS ). Our warmest thanks to Dr Suri for his energy in resolving this issue.
The same process is being undertaken for adults by the Papworth team, but registration will take a couple more days. Please watch this space for further updates.
If you haven’t received communication from the NHS that you or your child is in the extremely vulnerable group, AND you haven’t let us know, please do so as soon as possible. You can ring us on 01582 760733, or email email@example.com.
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 urge people living with AT to follow the shielding guidance as seriously and closely as you possibly can.
Kay Atkins, the Society’s Family Support Manager, recorded a message to explain the importance of shielding and staying at home.
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 steps should we take to protect someone with AT?
The email received by a parent of a child who has A-T says:
Remain at home for a minimum of 12 weeks. Home is the safest place for you. Staying in helps you stay well and that will help the NHS too. You can open a window but do not leave your home, and stay 3 steps away from others indoors. Wash your hands more often, for at least 20 seconds.
It also refers for advice to the wepage: www.gov.uk/coronavirus-extremely-vulnerable-guidance.
The advice is for a form of protection that they are calling ‘Shielding’. This is in their words a “practice used to protect extremely vulnerable people from coming into contact with coronavirus.”
You are strongly advised to stay at home at all times and avoid any face-to-face contact for a period of at least 12 weeks from the day you receive your letter. Please note that this period of time could change.
Visits from people who provide essential support to you such as healthcare, personal support with your daily needs or social care should continue, but carers and care workers must stay away if they have any of the symptoms of coronavirus (COVID-19).
There is more detailed guidance on the link above, which we won’t repeat here. If you have any difficulty accessing the guidance, please contact us urgently.
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.
Clinical trials and studies
Organisers of the clinical trials and studies currently taking place will be in contact directly with participants. However, it is our understanding that while the CATNAP 2 study has been put on hold for now, the ATTeST (EryDex) and Intrabio trials are for now going ahead.
The ATteSt trial has been designated ‘essential’ as the active treatment may, we hope, prove life-saving/extending, and there is no realistic alternative at present. Some UK participant families have decided to omit some transfusions for now so their child can stay at home, reducing the risk of catching coronavirus. They are being supported in this and kept in the trial, with recorded protocol deviations, as suggested by the UK regulator the MHRA. Other parents, after discussing the risks, are continuing for now. Measures are being taken to reduce their risks as far as possible, and some procedures may be adapted to minimise staff, as available staff numbers reduce. Again, protocol deviations for covid-19 will not be classed as major breeches by the MHRA.
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.