You or someone that you know might have received a message from the UK Government about ‘shielding’ during the coronavirus (covid-19) outbreak. Shielding is a measure to protect people that are extremely vulnerable to the most serious effects of the virus.

Messages about shielding could take up to Sunday 29 March to reach you.

You can read about what shielding is and why it is so important on the UK Government website here.

It is understandable and normal to feel some worry during this time, especially if you have been asked to shield. However, remember that you are not alone in this situation. We remain here to offer you support and information, and we are working hard on different ways to reduce the stress and anxiety that can come from social isolation and shielding.

We understand that the letters and texts from the NHS have been sent to individuals who have been identified using coding from their GP patient record. Hospital doctors with expertise in TSC who see a range of people living with condition have not been asked to identify which patients may be ‘extremely vulnerable’.

The TSA has asked hospital doctors from the NHS TSC clinics for their views. They have recommended that you should follow advice for people who are ‘extremely vulnerable’ if you are in one of the following groups, even if you have not yet received a letter or text from the NHS:

  • If you are taking everolimus or sirolimus tablets or liquid
  • If you have lymphangioleiomyomatosis (LAM) or reduced lung function
  • If you have significantly reduced kidney function
  • If you are severely affected by the condition, and you are not able to understand and follow advice about regular hand-washing and good hygiene to stay safe and unlikely to be able to tolerate intensive treatment if you become ill

However, messages about shielding could take up to Sunday 29 March to reach you. If you have not yet received one, it could come later. If you think you fall into one of the categories of extremely vulnerable people listed above and you have not received a letter by Sunday 29 March 2020 or been contacted by your GP, you should discuss your concerns with your GP or hospital clinician.

Shielding is like self-isolation but to a greater extent, with all face-to-face and non-essential contact completely avoided from those inside and outside of the home. It is suggested that you do not go outside for any reason, including food shopping or to get prescriptions. Shielding is recommended for at least 12 weeks.

You can ask family, friends and neighbours to support you and use online services. If this is not possible, then the public sector, business, charities, and the general public are gearing up to help those advised to stay at home. Please discuss your daily needs during this period of staying at home with carers, family, friends, neighbours or local community groups to see how they can support you. Please visit gov.uk/coronavirus-extremely-vulnerable from Tuesday 24 March 2020 to register for the support that you need. This includes help with food, shopping deliveries and additional care you might need.

Those who are shielding and require essential care support for health and/or social needs should continue to receive this care. However, carers and care workers should stay away from the person shielding if they themselves have any symptoms of coronavirus – if this happens, please contact your local council for advice on accessing care.

The UK Government’s guidance on shielding and why it is so important might be helpful (here). Alternatively, please contact our support team to discuss your situation further, or contact your doctor as soon as possible.

If you think you fall into one of the categories of extremely vulnerable people listed above and you have not received a letter by Sunday 29 March 2020 or been contacted by your GP, you should discuss your concerns with your GP or hospital clinician by phone or email.

The TSA is here for you and every member of the TSC community. Together, we can get through this.

Staying at home does not mean that you can’t talk to other people – check our advice on reducing anxiety during self-isolation, get involved on our social media pages and keep checking for updates on our plans to bring everyone together remotely.

You can talk about any TSC-related topic with our friendly team of support line advisers, who are waiting for your call or email.

Make a one off or regular  donation

£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

To provide help for today and a cure for tomorrow.