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COVID-19 and Rett

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

The situation is changing daily. We are 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.

We have had many question about coronavirus and how it may affect people with Rett Syndrome.

As well as regularly publishing news articles in the news blog section of the website, we will publish updated information here so that it is all in one place and easy to find.

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

COVID-19 & Rett FAQ

Update June 2020

The government has updated its guidance for people who are shielding.

People who are shielding remain vulnerable and should continue to take precautions but can now leave their home if they wish, as long as they are able to maintain strict social distancing. 

People who are shielding can meet with one other person from another household. Ideally, this should be the same person each time. 

The Public Health England website states:

This guidance is for people including children who are clinically extremely vulnerable. It’s also for their family, friends and carers.

People who are clinically extremely vulnerable are at high risk of getting seriously ill from coronavirus (COVID-19). 

This includes clinically extremely vulnerable people living in long-term care facilities for the elderly or people with special needs.

During the COVID-19 crisis, there has been some debate about who is and who is not considered clinically vulnerable or at high risk of complications from Covid-19 infection.

We know that many families who care for children and adults with Rett Syndrome have not received letters advising them to shield or that their family member is extremely vulnerable. Some have received the letters several months into the crisis.

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 for shielding which is as follows: 

Who this guidance is for

  1. If you wish to spend time outdoors (though not in other buildings, households, or enclosed spaces) you should take extra care to minimise contact with others by keeping 2 metres apart.
  2. If you choose to spend time outdoors, this can be with members of your own household. If you live alone, you can spend time outdoors with one person from another household (ideally the same person each time).
  3. Stay alert when leaving home: washing your/their hands regularly, maintaining social distance and avoiding gatherings of any size.
  4. You should not attend any gatherings, including gatherings of friends and families in private spaces, for example, parties, weddings and religious services.
  5. You should strictly avoid contact with anyone who is displaying symptoms of COVID-19 (a new continuous cough, a high temperature, or a loss of, or change in, your sense of taste or smell).

The Government is currently advising people to shield until 30 June 2020 and is regularly monitoring this position.

Update 11th May 2020

Government guidance in England has changed as of May 10th 2020 so that members of the general public, as of Wednesday May 13th 2020, will be able to:

  • Go to work if they cannot work from home but they should still avoid public transport if possible because of social distancing.
  • Take more and even unlimited amounts of outdoor exercise rather than only exercising once a day
  • People will also be free to sit in parks, and be able to “play sports” with people from the same household
  • It will also be possible for households to drive to other destinations (such as parks and beaches) in England
  • But social distancing rules – keeping at least two metres away from people outside your household – must still be followed

The guidance has not changed in Scotland, Wales or Northern Ireland.

For people who are more vulnerable, including people with Rett syndrome and other rare diseases, the guidance has not changed.

Public Health England guidance on shielding and protecting vulnerable people was updated on 5th May 2020.

For the next 12 weeks we are instructed to:

  • Stay at home and avoid any face-to-face contact with others
  • Visits from people who provide essential support to you such as healthcare, personal support with your daily needs should continue, but carers and care workers must stay away if they have any of the symptoms of coronavirus (COVID-19).
  • All people coming to your home should wash their hands with soap and water for at least 20 seconds on arrival to your house and often while they are there.

Public Health England guidance for the general public has not yet been updated to reflect the aforementioned changes. All the PHE guidance re Coronavirus can be found here.

There is conflicting information about whether or not people should wear masks, with different countries taking different approaches.

Neither the World Health Organisation, nor Public Health England have recommended mass use of masks for healthy people in the community at this point in time. Evidence suggests this is currently under review.

The US Centers for Disease Control and Prevention (CDC) does now advise the wearing of cloth masks in public and many countries, such as Canada, South Korea, and the Czech Republic, require or advise their citizens to wear masks in public places.

An evidence review and analysis published in the Lancet on 16.04.2020 does suggest 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.

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, there is still some risk of infection. All non-essential appointments are currently being cancelled and remote appointments are being set up as appropriate.

You should avoid going to hospital unless it is absolutely necessary.

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

Updated 25.03.2020

Update 1st June 2020

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 shielded 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 have received letters advising them to shield and some have not. Some received letters late, several months into the crisis and some have 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 for shielding which is as follows: 

Who this guidance is for

  1. If you wish to spend time outdoors (though not in other buildings, households, or enclosed spaces) you should take extra care to minimise contact with others by keeping 2 metres apart.
  2. If you choose to spend time outdoors, this can be with members of your own household. If you live alone, you can spend time outdoors with one person from another household (ideally the same person each time).
  3. Stay alert when leaving home: washing your/their hands regularly, maintaining social distance and avoiding gatherings of any size.
  4. You should not attend any gatherings, including gatherings of friends and families in private spaces, for example, parties, weddings and religious services.
  5. You should strictly avoid contact with anyone who is displaying symptoms of COVID-19 (a new continuous cough, a high temperature, or a loss of, or change in, your sense of taste or smell).

The Government is currently advising people to shield until 30 June 2020 and is regularly monitoring this position.

This information has been taken from Public Health England Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19

Easy read guidance can be found here Guidance on protecting people most likely to get very poorly from coronavirus (shielding)

Here are some 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:

In many local areas, informal groups have been set up with volunteers who can help which you can find by searching *name of town/village covid 19 support on Facebook or on search engines. These groups can also provide information on cafes, shops and restaurants in your local area who are providing delivery services.

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. 



 

We recommend that people are prepared and ensure that they have a reasonable back up such as extra antibiotic treatment readily available in the event of increased respiratory symptoms. 

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

For help picking up or arranging prescriptions, call 0800 028 8327

In many local areas, informal groups have been set up with volunteers who can help which you can find by searching *name of town/village covid 19 support on Facebook or on search engines. These groups can also provide information on cafes, shops and restaurants in your local area who are providing delivery services.

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.

The government is in the process of setting up a more formal NHS volunteer network. More information will provided as it becomes available.

Updated 26.03.2020

During the Covid-19 crisis, NHS Trusts around the UK have postponed the opening of any new clinical trials and suspended some open trials.

For the time being, the Cannabidiol trial at Alder Hey Hospital remains active with existing patients still required to attend study visits in person.

No new patients have been admitted during the course of this crisis but it is projected now that new patients will be screened in July/August 2020 for both Alder Hey and the trial site at King’s College Hospital.

A third U.K. clinical trial is now planned to start at King’s College Hospital and other trial sites around the country in July 2020.

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 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 info@reverserett.org.uk

111.nhs.uk

NHS 111 Online – About coronavirus (COVID-19)

Update 1st June 2020

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 children will not be going 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, whether they go on to recover or not.


We have made some templates to help families to 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. 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.

Explain to your employer that someone in your house is at high risk for complications of Covid-19 and is shielding.

We can provide you with a letter to explain this to your employer if this is helpful. Email info@reverserett.org.uk for more information, subject: Keyworker.

Ask if they can support you with social distancing.

Can they change your role so that you are not coming into regular contact with the general public?

Can they provide protective equipment?

Can you be relocated so that you are working away from others?

When you get home from work, before having any contact with other family members:

Leave bags and coats by the door

Remove shoes and leave by the door or outside

Do not touch anything (light switches, door handles etc) until you have washed your hands 

Wash hands with soap for more than 20 seconds

Have a shower 

Clean your phone or purse/wallet 

Put on clean clothes

If you already have carers coming into your home, it’s likely that this is because it is essential for your person’s care and well-being that they and you, their family, have this support.

The current situation is more stressful even than your normal daily life, because you are more isolated and the person with Rett Syndrome is not able to access their usual activities; school, college, respite, day centre etc.

The situation has been going on for many weeks and you will need to stay strong both physically and emotionally as we move into the summer. It is also possible that you could become ill yourself, so having a back up plan, including other carers who are able to meet your person’s needs, is important.

Here are some rules you can put in place to minimise the risk of spreading the infection:

1. Don’t allow carers/nurses to come into your home if they have any signs of a cold or cough type illness, no matter how minor.

2. Display this poster to put on your front door to advise anyone entering your home of the precautions they need to take.

3. Carers should leave their coat in their car or remove it at the door. No bags or phones should enter your living area.

4. Carers should wash their hands and change into clean clothes for the shift, leaving their own clothes in a bag in the hallway.

4. Use antibacterial wipes to wipe down any phones, glasses or other items which are essential during their shift.

5. Ask your care staff to have limited close 1:1 contact with your child wherever possible, i.e. No kisses or cuddles or talking to them up close by their face unless vital 🙁

6. Ensure that carers are using the proper hand washing technique. Show them this video. Have soap and paper towels visible and available at all sinks. Remind them to wash their hands very often by washing your own and passing them the soap.

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
Print

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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