Individuals with r(20) syndrome (in UK)

At Ring20, it has come to our attention that some individuals diagnosed with r(20) syndrome are not being offered the COVID-19 vaccine as part of priority group 6 within the UK. This appears to be due to GP’s not classifying the individual as having epilepsy on their medical records – even though the individual has an r(20) diagnosis and is regularly prescribed anti-seizure medications (ASM’s).

Ring20 suspect this is due to a lack of awareness of r(20) syndrome on behalf of the GP’s, however we want to ensure that individuals with r(20) syndrome (over the age of 16) are offered a vaccination appointment as part of the appropriate priority group, as is their right.

If this is the situation in the UK, Ring20 suspect this may also occur overseas too, though vaccine rollout may not be as advanced as in the UK and priority groups may differ from country to country.

Statement from the Ring20 Medical Advisory Board

Individuals with an r(20) diagnosis should have on record that r(20) syndrome is a rare form of epileptic encephalopathy – and should receive an offer of COVID-19 vaccination alongside all other people diagnosed with epilepsy.

Parents/carers of people with r(20) syndrome (in UK)

As a carer for your child (whatever your child’s age, even if they are now an adult) parents/carers of an individual with r(20) syndrome in the UK are entitled to be offered a priority COVID-19 vaccination, as an unpaid carer. You do not have to be in receipt of any benefits e.g. Carers Allowance, to qualify as an unpaid carer.

Simply request to register as an unpaid carer with your GP surgery. You will in future also receive priority access to a flu jab each year as a result of this being added to your medical records. There may be other support available to you too in the future; to which your GP should alert you. More information can be found on the Contact website. Thank you to Contact charity for sharing this information.

Ring20 cannot comment on the situation for carers outside of the UK being prioritised for a vaccine, but suggest you research locally as to whether any similar scheme is available to you.