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When will the person I care for with Rett Syndrome be able to have the vaccine?

11/01/2021

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