When will my child or adult with Rett Syndrome be able to have the vaccine?


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.

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