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COVID-19 and Rett

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

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.

On this page you will find news articles, updates and resources relating to Covid 19 and people with Rett Syndrome.

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

COVID-19 & Rett FAQ

Unpaid carers have now been added to the priority list and are in LEVEL 6 along with people age 16-65 with underlying health conditions. See the full priority list here on page 8.

Update 13.01.21

Agency carers should be vaccinated as key workers. They are eligible for the vaccine now as LEVEL 2.

Independently employed carers/PAs are also eligible for the vaccine in LEVEL 2. The process for assessing eligibility and ensuring that these people are vaccinated has not been established yet.

Green book Chapter 14a page 11 states:

Frontline healthcare staff. This includes the following groups:

Staff involved in direct patient care
This includes staff who have frequent face-to-face clinical contact with patients and who are directly involved in patient care in either secondary or primary care/community settings.

This includes doctors, dentists, midwives and nurses, paramedics and ambulance drivers, pharmacists, optometrists, occupational therapists, physiotherapists and radiographers. It should also include those working in independent, voluntary and non-standard healthcare settings such as hospices, and community-based mental health or addiction services.
Temporary staff, including those working in the COVID-19 vaccination programme, students, trainees and volunteers who are working with patients must also be included.

Until there is guidance which spells this out more clearly for GPs and a mechanism for them to bring independently employed carers into the process, it may help for families to provide their carers with an official letter stating that they are employed as a carer for someone who has underlying health conditions or who is Clinically Extremely Vulnerable and are therefore eligible for the vaccine.

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

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