Letters have been sent to individuals who have been identified for shielding 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 full list of people who are considered ‘clinically extremely vulnerable’ to covid-19, and are on the shielding list, is:

• Solid organ transplant recipients
• People with specific cancers:
  • People with cancer who are undergoing active chemotherapy
  • People with lung cancer who are undergoing radical radiotherapy
  • People with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
  • People having immunotherapy or other continuing antibody treatments for cancer
  • People having other targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
  • People who have had bone marrow or stem cell transplants in the last 6 months or who are still taking immunosuppression drugs
• People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD)
• People with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell disease)
• People on immunosuppression therapies sufficient to significantly increase risk of infection
• Problems with your spleen, for example splenectomy (having your spleen removed)
• Adults with Down’s syndrome
• Adults on dialysis or with chronic kidney disease (stage 5)
• Women who are pregnant with significant heart disease, congenital or acquired
• Other people who have also been classed as clinically extremely vulnerable, based on clinical judgement and an assessment of their needs. GPs and hospital clinicians have been provided with guidance to support these decisions

If you think that you should be considered ‘extremely vulnerable’ to covid-19 but have not received a letter, you should speak to your GP or TSC clinician to discuss your individual case further.

You might find the official UK Government guidance on shielding useful, and NHS Digital’s shielded patient’s list.

Those who are on the ‘clinically extremely vulnerable’ list for covid-19 should be vaccinated as part of group 4 of the vaccinations priority list. You can see the priority list in full, and which groups those in the TSC community are likely to be part of, here.

What you can and can’t do while shielding depends on whether you live in England, Scotland or Wales, and more information will be provided in the letter that you receive from the UK Government. Broadly, you should:

• Keep socialising to an absolute minimum
• Limit the amount of time that you spend outdoors (leaving the home only for exercise or for an essential reason, such as to pick-up important medicine)
• Not attend work, school, college or university (unless remotely from your home)

This letter by the TSA can help explain the situation to your employers so that they can make reasonable adjustments for you.

More information is available on the UK Government’s shielding page, the Welsh Government’s shielding page and the Scottish Government’s COVID-19 page.

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.

You can register for the support that you need here. 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 or been contacted by your GP, you should discuss your concerns with your GP or hospital clinician by phone or email.

More information can be found on the NHS Digital covid-19 page here.