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

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

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

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. Second boosters are currently being offered to everyone who is immunosuppressed or immunocompromised aged over 12 in Scotland.

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 when the Highest Risk List ends, we will 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 recently have been invited for a second booster dose. 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 their self-isolation period has ended.

If you have visitors, ventilate your home by opening windows and doors to let fresh air circulate. You may wish to consider asking visitors to maintain some distance from you where this is possible. You can ask visitors to take a rapid lateral flow test before visiting if you wish. 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 follow to allow working from home due to COVID-19. We are 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

Primary Course

People aged five and over, who were severely immunosuppressed around the time of their first or second dose of the COVID-19 vaccine, may be eligible for a third dose.

The third dose is an additional primary dose offered before any boosters to those who may not have received as much protection from the first and second dose as the rest of the population, who are not immunosuppressed.

A third dose is usually given at least eight weeks after the second dose, but timing may depend on any treatment you may be having, and you can follow the advice of your clinician.

Boosters

Like some other vaccines, levels of protection may begin to reduce over time. The COVID-19 vaccine booster dose helps to extend the protection given by previous doses.

People aged 12 and over and are immunosuppressed are now being contacted as part of the second booster vaccination programme. Some people who are being invited now may also have received a booster last autumn or winter, however it is still important to get the second booster this Spring when offered.

NHS Scotland will 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.

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, however, LFD tests are still available for specific groups of people when they do not have 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.

You can also order LFD tests if you are:

  • visiting a hospital or a care home
  • an unpaid carer

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 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.

Connecting with You is a free service run by the British Red Cross. It’s available to all people aged 18 or over in Scotland who are experiencing issues associated with loneliness. This service can help you to reconnect with people and activities from before the pandemic. It aims to help you to build confidence in day-to-day things like going to the shops, to a café, or just getting out and about. Connecting with You can provide one-to-one support by phone, online, or in person. 

To arrange a phone conversation about what kind of support would be most helpful to you, contact the British Red Cross:

The following free services are available for adults:

  • NHS 24: call 111 if you need urgent support for your mental or emotional health. Open 24 hours a day
  • Breathing Space: call 0800 83 85 87 for a free, confidential, phone service for anyone in Scotland over 16. If you’re experiencing low mood, depression or anxiety, Breathing Space provides a safe and supportive space, listening, offering advice and providing information. Open Monday to Thursday: 6pm - 2am and Friday to Monday: 6pm - 6am
  • Samaritans: call 116 123 for confidential emotional support if you're in distress or despair. Open 24 hours a day
  • British Red Cross Helpline: call 0808 196 3651 if you're feeling lonely, worried, or are having difficulty accessing food or medication. Support is available in more than 200 languages. Open every day from 10am - 6pm
  • NHS Inform: find useful information about mental health on the NHS Inform website
  • Clear Your Head: find information to help you cope and advice on how you can support other people who you think might be struggling on the Clear Your Head website

The following free services are available for children and young people:

  • Aye Feel from Young Scot: find information for younger people about looking after your mental health and wellbeing on the Young Scot website or speak to a member or staff who you can trust at your school, college or university
  • Parent Club: find information for parents and carers of younger children on the Parent Club website

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

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