Coronavirus (COVID-19): advice for people who were on the Highest Risk List

Advice to help people who were on the Highest Risk List make informed decisions and access support services.

This document is part of a collection


COVID-19 guidance for people who remain at higher risk because of a suppressed immune system

This guidance applies to people living in Scotland. There is different guidance available for people living in England, Wales and Northern Ireland.

This guidance is for people who are immunosuppressed and includes information on vaccination, testing and treatments as well as mental health support.

Your GP or specialist clinician will have told you if you are in this category, and we have also listed the main reasons that people are immunosuppressed below. If you are unsure whether you fit into these criteria, please contact your GP or specialist clinical team.

Introduction

In March 2020, we created a list of people we believed to be at highest risk of becoming severely ill if they caught COVID-19. This was called the Shielding List and was later renamed as the Highest Risk List.

The COVID-19 vaccination programme in Scotland is working well. The evidence now tells us that most of the people who were considered to be at highest risk from COVID-19 at the start of the pandemic are now at a much lower risk, and even people with a weakened immune system are getting protection from vaccination.

This is why the Highest Risk List ended on 31 May 2022. The Chief Medical Officer has written to everyone on the List, to advise if they may still be considered at higher risk from COVID-19 or not, and tell them what this means for them.

There does remain a group of people who may not get the same level of protection from vaccination as the majority of the population. This is because they have a medical condition, or are undergoing treatment, which means their immune system is weakened. This group of people remain at a higher risk from COVID-19, and this guidance is for you.

Extra vaccine doses and booster vaccination programmes are still helping prevent many people who are immunosuppressed from becoming severely ill. That’s why we would encourage everyone to get all vaccinations they are eligible for. You should receive a letter inviting you for these vaccinations.

More information on the impact of vaccination is available in our Evidence Review.

There are now treatments available to help people who are at higher risk to recover if they do become unwell with COVID-19. These are being offered to those people who are eligible.

Even though the Highest Risk List has ended, we are still be able to identify and contact people if we need to give them advice in future, and we will continue to identify people who are eligible for vaccinations and treatments.

This page contains information on:

  • who the guidance is for
  • protective steps you can take
  • eligibility for additional COVID-19 vaccine doses
  • treatment
  • testing
  • help with your mental health and wellbeing

Who this guidance is for

People who are immunosuppressed have a weakened immune system which means they are unable to mount a full response to combat infections and diseases, such as COVID-19. Being immunosuppressed or immunocompromised is as a result of certain diseases or conditions, or because of medication or treatment for a disease or condition, including, but not limited to people who have or had:

  • a blood cancer (such as leukaemia or lymphoma)
  • a weakened immune system due to a treatment (such as steroid medicine, biological therapy (sometimes called immunotherapy), chemotherapy or radiotherapy)
  • an organ, bone marrow or stem cell transplant
  • a condition or disease which affects your immune system

Some people will be permanently immunosuppressed because of a long-term condition or treatment, while others will be immunosuppressed for shorter periods, while being treated for a shorter-term condition.

Many people with immunosuppression will be in regular contact with a hospital clinician or their GP. People who are immunosuppressed will receive invitations to vaccinations they are eligible for. Many will also have received a letter advising they may be eligible for additional treatments if they test positive for COVID-19.

If you have a new diagnosis and are unsure about whether you have a weakened immune system, your hospital clinician or GP will be able to confirm this.

Protective steps you can take

If you are immunosuppressed, the most important advice is to:

  • ensure you have had all of the vaccines you are eligible to receive
  • continue to follow any condition-specific advice you may have been given by your specialist

We recommend that you avoid meeting with someone who is feeling unwell with symptoms of COVID-19 or any other respiratory infections such as cold or flu. Avoid anyone who has tested positive for COVID-19, including in your household, where possible, until they no longer have symptoms and are feeling well.

If you have visitors, ventilate your home by opening windows and doors to let fresh air circulate. You can lessen the risk of transmission by meeting outside where possible and keeping distance as appropriate when indoors from those out with your own household. You might also consider asking them to wear a face covering and want to wear a face covering yourself.

When out and about, you can continue to physically distance from others where possible if this feels right for you. You may wish to avoid spending time in enclosed and crowded spaces. If you would like to make others aware you would like them to give you space or take extra care around you, you can get a free Distance Aware badge or lanyard from libraries, or you can order online for a small charge. Free badges are also available at some Asda stores. For more information please visit the Distance Aware page.

Wherever possible, you should wash your hands regularly and avoid touching your face. You can also use hand sanitiser where available.

Consider whether to continue to wear a face covering in crowded public spaces. These protect others, but can also offer some protection to the wearer.

There are no longer any regulations for employers to allow working from home due to COVID-19. We are still encouraging employers to work with employees and to consider hybrid working where this is possible.

Employers have a duty to make the workplace safe, and to carry out regular risk assessments. If you are worried about returning to the workplace, speak to your employer about any adjustments they can make to reduce your risk. More information about going to work is available on the safer workplaces page.

COVID-19 vaccines for people who are immunosuppressed

People who are immunosuppressed will receive invitations to vaccinations they are eligible for.

Previous doses

How many vaccine doses you will have been offered or received will depend on your age, your health condition and when you were diagnosed with, or started treatment for immunosuppression. For more information on how many doses of COVID-19 you are eligible for, please visit NHS Inform.

Boosters

Vaccines boost your immunity. As protection reduces over time, it is important to have the vaccines when you are offered them. COVID-19 immunity wanes over time, but your protection against serious illness from COVID-19 increases with every additional dose of the vaccine you receive.

Those with immunosuppression have been offered boosters at various stages of the COVID-19 programme and NHS Scotland will continue to contact you to arrange appointments for vaccinations you are eligible for.

We, and the NHS would encourage everyone, including your household contacts to get all vaccinations when offered, at the earliest opportunity.

More information on vaccinations, including boosters, is available on the NHS Inform website.

Treatment

The NHS is offering new monoclonal antibody and antiviral treatments to people who remain at a higher risk of becoming more seriously ill if they catch COVID-19.

The list is regularly reviewed and currently includes some people who have:

  • Down’s syndrome
  • certain types of cancer, or have received treatment for certain types of cancer
  • sickle cell disease
  • certain conditions affecting their blood
  • chronic kidney disease (CKD) stage 4 or 5
  • severe liver disease
  • an organ transplant
  • certain autoimmune or inflammatory conditions (such as rheumatoid arthritis or inflammatory bowel disease)
  • HIV or AIDS who have a weakened immune system
  • inherited or acquired conditions affecting their immune system
  • rare neurological conditions: multiple sclerosis, motor neurone disease, Huntington’s disease or myasthenia gravis

You may have received a letter to tell you that you may be eligible for treatments if you develop symptoms of COVID-19 and test positive. You should follow the instructions and get in touch with your Health Board contact on the letter if you do test positive.

More information, including who is eligible and how to contact your Health Board, is available on the NHS Inform website

If you believe you may fall into one of the groups mentioned above, but you have not received a letter telling you that you may be eligible, contact your clinician.

Testing

If you have symptoms or test positive for COVID-19

Stay at home and avoid contact with other people if you have symptoms of a respiratory infection such as coronavirus and have a high temperature or do not feel well enough to go to work or carry out normal activities. 

If you’re immunosuppressed and you test positive for COVID-19, contact your Health Board as soon as possible to find out if you are suitable for one of the new COVID-19 treatments. More information, including who is eligible and how to contact your Health Board, is available on the NHS Inform website.

Lateral Flow Device (LFD) Tests

Most people in Scotland no longer need to test when they do not have coronavirus symptoms.

If you have received a letter advising you may be eligible for the treatments outlined above, you can order LFD tests by calling 119, or order online.

If you are immunosuppressed and due to receive pre-elective surgery, then you will receive an LFD testing kit from the hospital which should be taken at home.

It is important to report all LFD results on the NHS Inform website, and to follow the stay at home guidance if you test positive.

If you are eligible for treatments, please follow the advice in your letter and contact your local Health Board.

If you feel unwell, contact your GP, or 111. If it is an emergency, call 999.

Help with your mental health and wellbeing

We know that many people who were on the Highest Risk List have found it difficult to think of themselves as being at higher risk from COVID-19. Many people have told us they’re feeling anxious about returning to activities they used to enjoy, or lonely because they have shielded and are finding it difficult to reconnect with people or activities they used to enjoy.

If you are struggling, you may wish to talk to your GP or someone else from your clinical team, for example a physiotherapist or nurse you feel comfortable speaking with. There is support available for you – it’s important as many people as possible try to regain a better quality of life.

Further information and resources are in the mental health and support page of this guide.

Back to top