COVID-19 and Rett

The coronavirus (COVID-19) outbreak continues to be a time of great concern for everyone, especially if you are caring for a child or adult with Rett Syndrome.

Whilst shielding for the clinically vulnerable is currently paused, we recognise that for families caring for a person with Rett Syndrome the situation is still worrying and uncertain.

We continue to be in close contact with Professor Santosh and team at the Centre for Personalised Medicine and other UK Rett clinicians and will continue to work to bring you the latest information on COVID-19 and Rett.

Our FAQs below may help to answer some of the questions you have.

If you have a query not addressed by the FAQs, you can submit a question via the form at the bottom of the page. We will endeavour to answer you as quickly as possible.

Also at the bottom of the page you can find news articles, updates and resources relating to Covid19 and those with Rett Syndrome.

It continues to be important that families and carers seek advice from their local clinicians, GPs, paediatricians and other specialists to support their decisions at this difficult time.

COVID-19 & Rett FAQ

Updated 7th September 2020.

If you’re clinically extremely vulnerable you were advised to take extra precautions during the peak of the pandemic in England. This is known as ‘shielding’.

The government is advising that you do not need to shield at the moment. This is because the rates of transmission of coronavirus (COVID-19) in the community have fallen significantly.

There is specific guidance on what will happen if there is a local lockdown in your area.

This guidance is government advice and it’s your personal choice whether to follow it.

What has changed

The guidance for the clinically extremely vulnerable is that shielding has been paused. This means:

you do not need to follow previous shielding advice

you can go to work as long as the workplace is Covid-secure, but should carry on working from home wherever possible

clinically extremely vulnerable children should attend education settings in line with the wider guidance on reopening of schools and guidance for full opening: special schools and other specialist settings

you can go outside as much as you like but you should still try to keep your overall social interactions low

you can visit businesses, such as supermarkets, pubs and shops, while keeping 2 metres away from others wherever possible or 1 metre, plus other precautions

you should continue to wash your hands carefully and more frequently than usual and that you maintain thorough cleaning of frequently touched areas in your home and/or workspace

you will no longer receive free food parcels, medicine deliveries and basic care from the National Shielding Service

For practical tips on staying safe, see the guidance on how to stay safe outside your home.

You will still be able to get:

local volunteer support by contacting your local authority
prescriptions, essential items and food you buy delivered by NHS Volunteer Responders
priority slots for supermarket deliveries (if you previously registered for free food parcels)

Further information about possible meausures if transmission increases, extremely vulnerable groups, sick pay and employment rights can be found here.

From 15th June 2020 it is the law that you must wear a face-covering when travelling in England on a:

bus or coach
train or tram
ferry, hovercraft or other vessel
cable car

If you do not wear a face covering you will be breaking the law and could be fined £100, or £50 if you pay the fine within 14 days.

A face covering is a covering of any type which covers your nose and mouth.

How to wear and make a face covering.

Some people don’t have to wear a face covering including for health, age or equality reasons. Some transport staff may not wear a face covering if it is not required for their job.

You should also wear a face covering in other enclosed spaces where it is difficult to maintain social distancing. For example, at stations, interchanges, ports and airports and in taxis and private hire vehicles. A taxi driver or private hire vehicle operator may be entitled to refuse to accept you if you do not wear a face covering.

The rule applies in situations where individuals from different households or support bubbles could be travelling together on a service such as a charter boat, but not if you are giving a lift to someone from another household or support bubble in your private car.

Surgical masks or respirators used by healthcare and other workers as part of personal protective equipment (PPE) should continue to be reserved for people who need to wear them at work.

An evidence review and analysis published in the Lancet on 16.04.2020 suggests that wearing a mask could be beneficial in reducing transmission of the virus by limiting respiratory droplets. (1)

This may be particularly helpful information for people who may be infected but asymptomatic (not showing signs of any symptoms) whilst caring for at risk or vulnerable family members and/or for those households where a vulnerable person is being shielded but one or more family members or carers are not able to self-isolate with the rest of the household.

Please note, if you are caring for someone with Rett Syndrome and you are in any way symptomatic, you should avoid providing care to them if at all possible.

If this is not possible, you should wear a mask to protect them from coughs and sneezes.

Here is an article from the Guardian which shows how to make two different kinds of no sew face masks.

Updated 04.05.2020

1: Cheng KK, Lam TH, Leung CC. Wearing face masks in the community during the COVID-19 pandemic: altruism and solidarity. Lancet. 2020 Apr 16. pii:
S0140-6736(20)30918-1. doi: 10.1016/S0140-6736(20)30918-1. [Epub ahead of print] 
PubMed PMID: 32305074.

Updated 08.09.20

People with COVID-19 being looked after in hospital are in the highest degree of isolation, with healthcare professionals wearing full protection.

They will be kept completely separately from the general public attending appointments. 

However, most non-essential appointments continue to be cancelled/postponed and remote appointments are being set up as appropriate.

Do not go to hospital if you or someone else in your family has COVID-19 symptoms. Call 111 or visit NHS 111 online.

Update 08.09.20

Reverse Rett medical advisors have asked us to inform families that all people with Rett Syndrome are at high risk from complications of COVID-19 and should be treated in the same way as anyone else who is deemed extremely vulnerable.

During the on-going COVID-19 crisis, there has been some debate in the community about whether or not people with Rett Syndrome should be considered vulnerable, as a group, or at high risk of complications from Covid-19 infection.

Some families of both children and adults with Rett Syndrome received letters advising them to shield and some did not. Some received letters late, several months into the crisis and some received them after contacting their GP directly or registering on the government website.

At Reverse Rett, we continue to advise caution to all families and carers of children and adults with Rett Syndrome. Even if you are not sure if your child or adult is vulnerable, where possible, try to follow the guidance and to exercise ongoing caution, even where shielding is paused.

Full government guidance for protecting vulnerable people can be found here.

Here are some additional things you can do to try to keep someone with Rett Syndrome safe and help identify issues early:

  1. Take daily observations (temperature, blood pressure, heart rate, oxygen saturation). You may not have all of this equipment, but the more you can do the better. If there are any concerning readings, or if there is a marked change from her normal readings, please do inform a medical professional.

2. Follow the Public Health England strategy of social distancing, even within your home, and hand washing as much as possible. Any non-essential contact with others should be reduced if possible.

3. Ensure that you monitor the person’s symptoms closely. If they develop a fever or dry cough, please do inform a medical professional. Moreover, if they develop any new respiratory symptoms/you see a change in their behaviour that concerns you, please do inform a medical professional.

Help arranging collection/delivery of essential supplies:

Essential food parcel deliveries ended on 31st July. If you are on a supermarket’s priority list for delivery slots you will stay on there after this date.

In many local areas, informal groups of volunteers are still helping vulnerable families even though shielding has been paused. You can find these by searching *name of town/village covid 19 support on Facebook or on search engines.

Be aware that these are informal groups and although some have background check requirements and processes for managing money etc whilst helping self-isolating households, some will not, so care is needed in making arrangements for assistance. 

Ask family, friends and neighbours to support you and use online services.

NHS Volunteer Responders are also still available for help with getting shopping and essential supplies. You can choose what products you want and when you want them, and an NHS Volunteer Responder will then pick up and deliver your shopping to you. They can also pick up prescriptions or any other essentials you need. Call 0808 196 3646 (8am to 8pm) to arrange volunteer support.

If there’s a local lockdown or you need urgent help and have no other means of support, contact your local authority to find out what support services are available in your area.

For further information about how to get food and other essential supplies, please see the guidance on accessing food and essential supplies.


Updated 08.09.20

NHS Volunteer Responders will continue to offer support until at least December 2020, incuding collecting and delivering prescribed medications. Call 0808 196 3646 between 8am and 8pm to arrange support or visit the NHS Volunteer Responders website.

You can also order repeat prescriptions online, without needing to go to a GP surgery or pharmacy.

You can collect a prescription yourself, or ask a friend, relative or volunteer to collect it for you.

You could also speak to your pharmacy about delivering your medicine to your home, rather than needing to collect it.

You can order repeat prescriptions using:
the NHS App
GP online services
other online pharmacies

The NHS App also allows you to set and change which pharmacy your prescription is sent to, so you could pick one that will deliver your medicine.

It may also be possible to obtain a prescription of any regular medications you have run out of through NHS 111 online here.

Updated 08.09.20

Recruitment for the cannabinoid trial is currently paused. Active patients are still attending Alder Hey for appointments and we are hopeful of recruiting new patients in the coming months.

The Anavex trial is also paused but we will be starting pre-screening calls with potential participants imminently. Watch this space.

Both companies involved in the trials are 100% committed to starting the trials ASAP.

We are continuing to monitor the ongoing situation carefully. As the situation evolves, we will try to provide you with as much information as we can. 

If you are taking part in a trial and have any direct concerns about potential COVID-19 infection, please use the NHS 111 online COVID-19 service.

If you have a question which has not been answered here, please contact us on 0161 413 0585 or by email

Updated 08.09.20

Although many families have not been able to see their family member with Covid-19 whilst they are being treated in hospital, there have been some exceptions made for children and for some people with severe disabilities depending on location.

At the moment, patients are only being admitted to the hospital if they are seriously ill and likely to benefit from hospital care.

There are some families and carers of patients with Rett who have decided that their adult child would not go into hospital if they become infected because they may not be candidates for critical care.

Whether patients are going to be admitted to hospital or not, carers must inform NHS 111 that the person is unwell, what their status is and that there is a high risk of complications. Whether the person is going to be admitted to hospital or not, they may require Oxygen, tube feeding and medication to help them stay calm/comfortable in this difficult situation.

We have created some templates to help families organise their thoughts and wishes in this situation. 

1. About me template. This can be filled in online and printed at home so that you have a short document to hand to provide vital information and a snapshot sense of who this person is, to paramedics or other medical professionals as needed.

2. Hospital Passport. This is another useful document which can help clinicians know a little more about your person with Rett, including medical details such as medications, allergies and practical advice for procedures such as blood draws etc.

3. Advanced statement template. This is for families to complete if they do not want their child to be given a DNAR order. It does not stop doctors signing a DNAR order. The family’s consent is not needed. But it is a way for us to make our wishes known and a reminder that families should be part of any ‘best interest’ decision taken at this time.

Please note: It is very important that anyone who is worried that someone with Rett Syndrome has COVID-19 contacts NHS 111. Early presentation of serious complications are more likely to be treatable/treated, especially in children.

Updated 08.09.20

Current government advice is that shielding for vulnerable people is now paused and therefore all children should return to education settings.

Clinically extremely vulnerable children should attend education settings in line with the wider guidance on reopening of schools and guidance for full opening: special schools and other specialist settings.

Siblings of vulnerable people should also be returning to school.

At Reverse Rett, we continue to urge families to exercise caution and to continue to follow social distancing guidance, hand-washing and mask-wearing as far as possible.

Practical tips for keeping your person with Rett Syndrome as safe as possible may include:

  1. Take daily observations (temperature, blood pressure, heart rate, oxygen saturation). You may not have all of this equipment, but the more you can do the better. If there are any concerning readings, or if there is a marked change from her normal readings, please do inform a medical professional.
  2. Ensure that you monitor the person’s symptoms closely. If they develop a fever or dry cough, please do inform a medical professional. Moreover, if they develop any new respiratory symptoms/you see a change in their behaviour that concerns you, please do inform a medical professional.

3. Continue regular hand-washing and ensure that all family members wash hands thoroughly as soon as they re-enter the home from education or work settings.

4. If your child/adult with Rett Syndrome will tolerate mask-wearing then do use one; if not, try to ensure that the adults who interact with him/her wear masks and socially distance whenever possible.

5. Continue to keep social interactions as limited as possible and maintain ‘bubbles’.

Updated 08.09.20

Packing a hospital bag can be stressful, especially when someone you care about is unwell enough to require hospital care.

We’ve created a checklist of things you might want to include to help make it that bit easier.

If you have completed them, the hospital passport and/or ‘about me’ document can be very useful and allow the doctors/nurses treating your person with Rett Syndrome to access key information without needing to quiz you!

An Advanced Statement document can also be useful in communicating the family’s wishes to those treating your person with Rett.

For person with Rett Syndrome:

  • Changing stuff – pads, wipes, sacks
  • Pyjamas
  • Bed socks
  • Favourite teddy/toy
  • iPad/DVD player + charger
  • Favourite book(s)
  • Wash bag – toothpaste, toothbrush, hairbrush, soap, flannel, hand towel, hand gel/sanitizer, scrunchie
  • Hospital passport and/or
  • List of medications printed to hand in – name, d.o.b., hospital number, meds, doses, times
  • List of professionals involved + contact numbers, printed to hand in – name, role, contact number + school/respite/hospice details
  • Box/bag medications (especially if prescribed any not commonly used in children’s wards, as pharmacy will likely not have in stock to prescribe immediately and need to order in)
  • If peg/button/gastro fed – feed, syringes, extension tube, giving sets, pump (enough for a couple of feeds until situation established)
  • Favourite snacks
  • Drink cup/straw

For yourself:

  • Your own wash bag and toiletries
  • Notebook + pen
  • Own medication
  • Phone + charger
  • Nightwear and change of clothes
  • Purse including cash
  • Snacks and water
  • A good book/Kindle

Submit any COVID-19 questions you have below


For more information and any advice, please don’t hesitate to get in touch.

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