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

Update 07.01.2021

We do not have enough information or experience of Covid 19 in people with Rett syndrome yet, to be able to say for certain who exactly is at high risk of complications from Covid 19.

People with Rett Syndrome are at increased risk of respiratory infections and cardio-respiratory compromise in general.

The Centre for Personalised Medicine in Rett syndrome (CPMRS) has issued recommendations re the consideration of Clinically Extremely Vulnerable status in children and adults with Rett syndrome which may be useful.

Help arranging collection/delivery of essential supplies:

In many local areas, informal groups of volunteers are still helping vulnerable individuals and families. You can find these by searching *name of town/village covid 19 support on Facebook or on search engines. If you need help with finding a local group to support you, email us and we will do what we can to help.

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. 

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 16.01.21

The government has made a priority list for who will be eligible for the vaccine and in what order. The list can be found here.

Whilst, the guidance for GPs states that the examples (in Table 3 page 9) are not exhaustive, and, within these groups, the prescriber should apply
clinical judgment to take into account the risk of COVID-19 exacerbating any underlying disease that a patient may have, as well as the risk of serious illness from COVID-19 itself, we are hearing from local clinicians that they are not given a great deal of freedom in deciding which patients to prioritise, outside tier groups.

Priority levels for people with Rett Syndrome

Over 16 living in care homes LEVEL 4 See page 10 of the Government’s Green Book Chapter 14a. At the bottom of the table there is a note about Younger adults in long stay nursing and residential care settings which suggests that local health departments have the discretion to make decisions about prioritising the vaccination of vulnerable groups in residential settings.

Over 16 Clinically Extremely Vulnerable LEVEL 4 (with those age 70-74)

Over 16 Underlying health conditions LEVEL 6 (at risk group and unpaid carers)

If you do not know if your person with Rett Syndrome is CEV or not, here are some recommendations from the Reverse Rett funded Centre for Personalised Medicine in Rett Syndrome (CPMRS).

GP Learning Disability Register

It’s possible that, at some point, people with learning disabilities as a group, will be prioritised in a more blanket fashion. It could be useful to check with your GP if they have a Learning Disability Register and get your person registered straight away. More information about that here.

Children Under 16 with underlying health conditions There are currently no plans to vaccinate children. However, if your child is Clinically Extremely Vulnerable or you have exceptional personal circumstances, do speak to your GP about this because again, they have the discretion to make decisions based on individual circumstances, weighing up the risks and benefits to a particular individual.

On children-page 13 of the guidance says:

There are currently very limited data on clinical risk factors in childhood, but children with neurological comorbidities are over-represented in those who develop severe COVID-19 requiring intensive care and those who die of COVID-19. Given the increased risk of exposure to infection and outbreaks in institutional settings, vaccination may be considered for children with serious neuro-disabilities (including cerebral palsy, severe autism and
Down’s syndrome) who spend regular time in specialised residential care settings for children with complex needs.

As older children have higher risk of acquiring and becoming sick from infection and there are some safety data on the Pfizer BioNTech COVID-19 mRNA Vaccine BNT162b2 in children aged 12 years and older, vaccination of older children in these settings should be considered using either vaccine. As this would be outside the terms of the MHRA approval, this would be considered unlicensed use.

You can see the full priority list (page 8) and more detailed information about the vaccine program here.

Questions? Contact

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.

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

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

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