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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

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 info@reverserett.org.uk 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.



 

Recruitment for the clinical trial for Anavex 2-73 for people with Rett Syndrome age 18-45 is ongoing. Currently the trial is paused due to non-availability of the trial sites. Clinical Research Facilities at both Manchester and King’s College Hospital Sites are currently pausing all non-Covid trials.

However, both trial sites are preparing to bring patients in as soon as they are permitted by their local CRF authorities. If you are interested in someone with Rett Syndrome between the age of 18-45 participating in the Anavex 2-73 trial please contact andy@reverserett.org.uk

Plans for a trial in children under 18 are in place, awaiting ethics approval. Please also contact andy@reverserett.org.uk to register interest in this trial.

The GW Pharmaceuticals Cannabinoid Trial was terminated in 2020 due to the on-going disruption of the pandemic. Reverse Rett continues to support UK patients on the open label extension period.

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 or on any of the socials: twitter/insta @reverserett Fb: /reverserett

If an adult with Rett Syndrome has no history of allergic reactions then it is presumed safe for them to have the currently approved Covid vaccines along with the rest of the general public.

This includes the Pfizer-BioNTech and Oxford-AstraZeneca vaccines which are licensed for use in the UK. A third vaccine from Moderna, has also been approved and will be used when stocks become available in the spring.

People sometimes think that expected reactions to a vaccine are ‘side effects’ or a ‘bad reaction.’ This includes symptoms like an increase in temperature, a sore arm, fatigue, headache, chills, joint and/or muscle pains. You can read more about the expected reactions to vaccine and allergic reactions here.

In someone who has seizures, even a slight increase in temperature can lower the seizure threshold. It’s helpful to be aware of this and take any necessary precautions to regulate temperature if possible.

If your person with Rett Syndrome has ever had an immediate allergic reaction—even if it was not severe—to a vaccine or injectable therapy for another disease, discuss with their doctor whether they should have the Covid vaccine. 

Updated 19.02.21

Tags: COVID-19, Vaccine

None of the Covid-19 vaccines which are already approved in the U.K. have been approved for use in children yet. Until the MHRA approves a vaccine for children, most children under 16 will not be able to receive the vaccine.

Some exceptions have been made for children age 12-16 who meet all of the following criteria:

  • Over 12 years old
  • Spend regular time in a specialised residential care settings for children with complex needs
  • Tend to get recurrent respiratory tract infections
  • Have a serious neuro-disability (this would include Rett Syndrome)

Children under 12:

The JCVI says that “Recommendations on vaccinating children with other underlying conditions will be reviewed after the initial roll-out phase by which time additional data on use of the vaccines in adults should allow a better assessment of risks and benefits.(P.13, chapter 14a, Covid: Green Book)

Once there are more safety data on Covid vaccines for children under 12 and on the vaccine roll-out across the population in general, the MHRA will review risks and benefits of vaccinating children. They are likely to consider reviewing vaccinating CEV children first.

If you think your child is clinically extremely vulnerable or you aren’t sure, check out this letter from the Centre for Personalised Medicine in Rett Syndrome which could help you and your GP or paediatrician in reviewing your child’s CEV status.

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

Questions? Contact rachael@reverserett.org.uk

Update 19.02.21

There are two routes to eligibility for the vaccine for adults over 16 with Rett Syndrome.

  1. Clinically Extremely Vulnerable status -Group 4
  2. Other underlying health risks, people with Learning Disabilities-Group 6

Many adults over 16 with Rett Syndrome across the UK have now been called for their Covid vaccine in both groups 4 and 6.

If you think someone with Rett Syndrome is Clinically Extremely Vulnerable and this person has not been called for their vaccine, call your GP.

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).

Whether someone with Rett Syndrome is considered CEV or not, they are at increased risk from Covid because they have Learning Disabilities. If this is your person with Rett Syndrome, call the GP to find out where they are up to in vaccinating the identified priority groups today and remind them of your situation.

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. Lots of charities, including Reverse Rett are actively campaigning for this to happen. It could be useful to check with your GP if they have a Learning Disability Register and get your person registered straight away, even if they are under 16 and not immediately eligible for the vaccine. More information about that here.

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

Questions? Contact rachael@reverserett.org.uk

Update 25th February 2021

Unpaid carers over 16 are now being vaccinated in Group 6. See the full priority list here on page 8.

Carers in receipt of Carers Allowance in England can also book an appointment via the NHS vaccine booking page.

Unpaid carer status so far has been based on the carer being in receipt of Carer’s Allowance or being registered as a carer with the GP but you are still entitled to it, even if you don’t get Carer’s Allowance.

The organisation Contact has produced a template letter to help carers struggling to get the COVID vaccine | Contact http://bit.ly/2MxWm2Q

Update 19.02.21

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.

  • In England, vaccine appointments can be booked online here on the NHS website >> 
  • There is a vaccine helpline and booking service available in Scotland by calling 0800 030 8013
  • Carers can book vaccination appointments by phone in Northern Ireland: 0300 200 7813
  • People can also contact the GP they are registered with to book a vaccination appointment if they are in one of the priority groups.

Receiving a vaccine is a choice, and it cannot be forced upon anyone. Some carers may not wish to receive the vaccine, and they cannot be forced to do so by their employer.

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.

Tag: COVID-19

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
Print

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

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