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.
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.