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 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.

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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