Blood cancer and coronavirus
Am I at high risk?
This section explains who is at high risk from coronavirus, what to do if you haven't received a shielding letter yet, and how coronavirus may affect treatment plans.
If you are a healthcare professional, our healthcare professionals pages contain the latest guidance and tools to help you care for your patients and yourself.
As COVID-19 is a new virus in humans, we don't currently know if there are differences in the way it affects people with leukaemia compared with other blood cancers. However, below you can find information on who in the blood cancer community is at high risk and how to reduce your risk.
For information about the specific cancer you have, please read our health information about leukaemia, including symptoms and diagnosis, treatment and side effects, and living with leukaemia.
As COVID-19 is a new virus in humans, we don't currently know if there are differences in the way it affects people with lymphoma compared with other blood cancers. However, below you can find information on who in the blood cancer community is at high risk and how to reduce your risk.
For information about the specific cancer you have, please read our health information about lymphoma, including symptoms and diagnosis, treatment and side effects, and living with lymphoma.
As COVID-19 is a new virus in humans, we don't currently know if there are differences in the way it affects people with myeloma compared with other blood cancers. However, below you can find information on who in the blood cancer community is at high risk and how to reduce your risk.
For information about myeloma, please read our health information about myeloma, including symptoms and diagnosis, treatment and side effects, and living with myeloma.
As COVID-19 is a new virus in humans, we don't currently know if there are differences in the way it affects people with different types of blood cancer. However, below you can find information on who in the blood cancer community is at high risk and how to reduce your risk.
For information about the specific cancer you have, please visit our blood cancer information pages and select a type of blood cancer.
Update on text messages about removal from the shielding list - 29 May 2020
Some people have received text messages telling them they are no longer on the shielding list. If you receive one of these and you haven’t spoken to your GP or treating team yet - please continue to shield until you have been able to speak to them.
Am I at a high risk from coronavirus (COVID-19)?
Last updated: 20 May 2020
This information is relevant for you wherever you live in the UK. Across the UK, people who are identified by the NHS as being at high risk from coronavirus (clinically extremely vulnerable) are being contacted directly by letter or text.
Adults and children with blood cancer may have a compromised immune system and therefore be at high risk of serious illness from coronavirus.
If any of the following apply to you, you should be contacted directly by the NHS about how to protect yourself:
- you currently have any type of blood cancer, whether you are having treatment or not, including people on watch and wait (for remission, see below)
- you have had an autologous transplant (using your own stem cells) in the last year
- you have had an allogeneic transplant (using donor stem cells) in the last two years
- you are on immunosuppression medication after a transplant, you have GvHD, or you have ongoing immunodeficiency after a transplant
If you fall into any of these categories, you should be contacted directly by the NHS to tell you what measures you should take to protect yourself. This will include shielding yourself from the general population.
The NHS is still identifying people who are at high risk and letters are still being sent out. Hospital teams and GPs are now being asked to check their patient lists and add anyone else they think needs a letter.
If you think you should have received a letter and you haven't, contact your hospital team or GP. They may need to get you a letter.
If you’re not sure whether you have a compromised immune system, check with your healthcare team.
If you have received a letter but you don't think you fall into any of the groups above, this may be because you have another condition that puts you at high risk, or it may be because your hospital team or GP believes you could still be at high risk. Speak to your hospital team or GP if you are unsure why you've received this letter.
If you are looking for information about children with cancer, the above guidelines from the NHS are intended to apply to both adults and children. However, the Children’s Cancer and Leukaemia Group have produced their own, more detailed guidance for children - see below for more on this.
If you are looking for information about risk if you’re in remission, see below.
There are certain groups of patients, such as people with CML taking TKIs, and people with MPNs, where it’s not so clear how high-risk they are. For some people, their condition or treatment doesn’t normally affect their immune system in a clinically significant way. For others, the condition or treatment does affect the immune system. In order to minimise risk, and because coronavirus is a new virus, the NHS at a national level did include all of these patients in the high risk group outlined above. However, everyone’s condition is different, and hospital teams and GPs have been asked to review who should get the high risk letter. You should speak to your healthcare team to find out the most appropriate advice for you, and whether you need a letter if you haven't had one.
If you have a pre-cancerous condition such as MGUS, solitary plasmacytoma or monoclonal b-cell lymphocytosis, then you are not automatically included in the high risk group outlined above. However, if you’ve received a letter, you should follow its advice. You may have received it because your hospital team or GP believes you could still be at a high risk, or because you have another condition that puts you at high risk. If you have not received a letter, we recommend you speak to your healthcare team as soon as possible to find out what you should do to protect yourself. In the mean time, you should carefully follow the general social distancing advice for people in England, Scotland, Wales or Northern Ireland.
If you have any questions about your letter from the NHS, speak to your healthcare team - they can give you personalised advice.
Children with cancer
The bullet points above, about who may be at high risk from coronavirus, come from the NHS and are intended to apply to both adults and children. However, the Children’s Cancer and Leukaemia Group (CCLG) have produced more detailed guidance about children specifically.
CCLG have written this guidance with experts who specialise in childhood and teenage cancer, and have used UK data about children with cancer who’ve had COVID-19. This data suggests that the increased risk of coronavirus in children with cancer is not as significant as previously thought. This is consistent with data being gathered in other countries about children with cancer.
It’s important to note that the data is only based on a small number of cases (46 as of 18 May 2020), but that is because there are only a small number of confirmed cases of COVID-19 in children with cancer.
This guidance groups children with cancer into three different risk levels, with different advice about shielding and school. The guidance is intended for children and young people up to the age of 18.
This is guidance based on expert views and available data, and we hope it's helpful to share, however always check with your child's treating team about what you should do to protect them.
Extremely vulnerable children
This group includes children and young people who:
- are having induction chemotherapy for leukaemia
- are having chemotherapy for relapsed or refractory disease
- are having immunotherapy, including CAR-T treatment
- are having a targeted or antibody treatment, or have finished this treatment in the last 6 months
- have had a donor stem cell transplant in the last 12 months
- have had a stem cell transplant using their own stem cells in the last 6 months
- are having replacement immunoglobulin therapy
This group should:
- follow shielding advice
- not go to school or work
- other people they live with should also avoid going to school or work if possible
- everyone else in the household should follow guidance to shield the vulnerable child as far as is possible – how to do this is explained in the government’s information on ‘Living with other people’
This group includes children and young people who:
- are having chemotherapy for cancer, or have finished this treatment in the last 6 months
- are having treatment for leukaemia or lymphoma, or have finished this treatment in the last 6 months
- are on long-term maintenance steroids
- have completed treatment for cancer but have ongoing chronic lung, heart, kidney or neurological conditions
- do not need to shield
- can go to school or work
- should strictly follow the general advice on social distancing for people in England, Scotland, Wales and Northern Ireland.
- other people they live with should also follow the same guidance as the rest of the population on social distancing, as strictly as possible
Although not completely free of risk, the data available suggests it is safe for children in this group to return to school, as long as the school can ensure good hygiene and social distancing measures.
Children who don’t fall into the above two groups
Most children and young people who completed chemotherapy or radiotherapy more than 6 months ago are not in the vulnerable groups. They should follow the general advice on social distancing for people in England, Scotland, Wales and Northern Ireland. Check with your treating team if you have specific questions about your child.
For more information about coronavirus and children with cancer, and these guidelines, see the CCLG COVID-19 guidance for children and young people with cancer.
Always speak to your child’s treating team about the best advice for your individual situation.
I am in remission - am I at high risk?
Last updated: 20 May 2020
If you have myeloma and are in remission, you could still have a compromised immune system. You would be included in the criteria above as someone who "currently has any type of blood cancer, whether you are having active treatment or not." Therefore you should follow the advice on shielding.
If you have a chronic blood cancer but are currently in a remission, you could still have a compromised immune system. You would also be included in the criteria above as someone who "currently has any type of blood cancer, whether you are having active treatment or not." Unless your hospital team have told you otherwise, you should follow the advice on shielding.
If you're in remission from any other blood cancer, the length of time it takes for your immune system to recover after cancer and its treatment varies depending on the type of cancer, the treatment given and the individual. There is no specific time frame. Generally, it takes a few months to a year to recover. Many people’s immune system recovers to a normal level after treatment. If you're in any of the groups outlined above, you should be contacted directly by the NHS about shielding. If you haven't been contacted, but are worried about your risk, speak to your healthcare team or GP.
If you have finished chemotherapy treatment in the last 3 months, speak to your healthcare team or GP about whether you should be added to the list of high risk people, and whether you should shield. Until you have spoken to your team, follow the guidance on shielding.
Some people who don't consider themselves as being in a high risk group above may also receive a letter from the NHS - this may be because they have another condition that places them at high risk, or because their GP or hospital team believes they could still be at high risk. If you are unsure about the advice given in your letter, contact your hospital team or GP - they can give you personalised advice.
If you are at high risk
If you have received a letter or text from the NHS about being at high risk, or your healthcare team has advised you to follow the shielding guidelines, then read our information on shielding.
If you are struggling to get a letter
Contact us on 0808 2080 888 or [email protected]
In England, show your clinical team the letter from the Clinical Director for Cancer in England (see below).
Blood Cancer Medical Information Card
We’ve made this card so you can keep important details like your NHS number and your medical team with you at all times. This could be especially important if you’re admitted to a different hospital for any reason. It should help ensure your usual doctor or hospital team is aware and involved in any discussions about treatment or care.
To use this card:
- Download it and fill in your details (you’ll need to open it in Adobe Acrobat Reader)
- Print it, or take a photo on your phone and ‘favourite’ it
- Tell family and friends where your card is
Download your card here:
Your healthcare team are still there for you
While it’s true that doctors and nurses are very busy responding to coronavirus, and you may see changes to your appointments or the way you contact your team, they are still there for you. Your healthcare team want to hear from you if you have worries, questions, or your symptoms change – keeping you well is a priority. We have more information on how treatment and appointments are being affected by coronavirus.
How can I reduce my risk of catching coronavirus?
Last updated: 7 May 2020
If you have any type of blood cancer, or are otherwise at high risk from coronavirus (see above), we advise that you shield. Children with blood cancer should do the same. This is to reduce the risk of you catching coronavirus as much as possible, as it could have a more serious effect on you.
Other people that live with you, including adults and children, should follow strict advice to protect you within the home. If these measures aren't possible, they should also shield with you. Read more about this in our information on how to shield.
Working with Government on access to shielding letters
On 7 May, Peter Johnson (Clinical Director for Cancer in England) sent out this letter to cancer teams across England. This letter urges cancer teams to continue identifying patients at high risk from coronavirus and urging them to shield. It includes links to how GPs and hospital teams can add patients to the list for a shielding letter. It states that the process for adding patients to this list will continue to be open throughout the COVID-19 incident. The letter also clarifies who is at risk in the blood cancer community, specifically including people with MDS and those being ‘managed expectantly’ (on watch and wait).
In view of the concerns we had from people with blood cancer in Wales, we worked with Angela Burns, a member of the Senedd, to contact the Minister asking about people with CLL and MPNs. We recieved this response, which indicates that some people with CLL and MPN should be included in the shielding guidance:
Tell us about your experience
You can help improve support for people with blood cancer by completing our impact of coronavirus survey. The results will help us understand the impact on people with blood cancer and help us support clinicians and the NHS.
Keep updated about coronavirus and blood cancer
Join our mailing list for key updates about coronavirus for people with blood cancer, what we're doing to help, and ways you can help, including campaigns you may be interested in.
Support for you
Call our free and confidential helpline on 0808 2080 888 from Monday to Friday, 10am to 7pm, and Saturday to Sunday, 10am to 1pm.
We are currently receiving a very high volume of calls related to coronavirus, so if you're not able to get through straight away, please leave a message and we'll get back to you as soon as we can.
You can also email us if you prefer to get in contact that way. We'll usually get back to you within two working days, but due to the current rate of calls and emails we are currently receiving it may take us longer.
Talk to other people with blood cancer on our Online Community Forum – there is a group for coronavirus questions and support.
You can also find out what's helping other people affected by blood cancer through coronavirus and beyond in our pages on living well with or after blood cancer.
General information on cancer and coronavirus
Last updated: 20 May 2020
While this page gives information specific to blood cancer, we have also worked with a group of cancer charities and the NHS to answer some commonly asked questions about coronavirus and cancer. You can see the document published by One Cancer Voice here:
One Cancer Voice is a group of cancer charities working together to provide consistent advice.
The following companies have provided funding for our coronavirus support, but have had no further input: AbbVie, AstraZeneca, Celgene, Gilead, Incyte, Kyowa Kirin, Novartis, Pfizer, Sanofi, Takeda.