For the TSC community, our understanding from working with clinicians in the NHS TSC clinics is that this is likely to mean that the community will be prioritised as follows:

1. Individuals living with TSC who are living in care homes for the elderly where vaccination of the whole resident population is recommended – including younger adults who are living alongside older residents – are likely to be vaccinated in GROUP 1.
2. Individuals living with TSC who have received a letter from their GP or specialist consultant informing them that they are clinically extremely vulnerable are likely to be vaccinated in GROUP 4, alongside everyone aged 70 and over
3. Individuals aged 16-64 living with TSC who have an underlying health condition which put them at higher risk of serious disease and mortality are likely to be vaccinated in GROUP 6, as are any adults who live with other adults that are considered ‘immunosuppressed’. Individuals living with TSC at higher risk are those who have:

• chronic respiratory conditions (such as LAM)
• chronic kidney disease (such as AMLs of kidney cysts)
• chronic neurological conditions (such as epilepsy)
• severe or profound learning disabilities
• immunosuppression due to treatment with mTORs, or
• severe mental illness

If you are being treated with mTORs for AMLs or SEGAs, you may wish to speak to your clinician about whether to stop taking the drug for a week before and a week after being vaccinated. However, if you are offered a vaccine at short notice you should take it, and not delay. If you are taking mTORs for LAM or epilepsy, then it is probably better not to take a break from treatment. But, it is important to speak to your clinician. The bottom line is that you should speak to your GP or TSC clinician before any decisions are made about whether to stop or continue treatment alongside vaccination.

4. Older carers should also prioritise their own health and make sure that they are likely to be vaccinated AS PART OF THEIR RELEVANT AGE GROUP to keep themselves and their loved one safer. Carers who are in receipt of a carer’s allowance or those who are the main carer or an elderly or disabled person whose welfare may be at risk if the carer falls ill should be offered vaccination in GROUP 6
5. Individuals who live with TSC but are not clinically extremely vulnerable or at higher risk are likely to be vaccinated AS PART OF THEIR RELEVANT AGE GROUP. There is no evidence that having TSC makes you more vulnerable to catching covid-19 or being more seriously affected by it than the general population if you do not fall into the clinically extremely vulnerable or higher risk groups

Further resources

The Challenging Behaviour Foundation have published helpful advice on reasonable adjustments to support individuals with severe learning disabilities who may struggle with needles and vaccination.  You can find this information here.