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Covid vaccine and blood cancer

We're here for you if you want to talk

0808 2080 888

[email protected]

How to get a covid vaccine if you have blood cancer, or live with someone who does

Page updated 20 July 2021

Who can get the covid vaccine?

You should have already had the covid vaccine early (in a priority group) if you are aged 16 or over and any of these apply to you:

  • you currently have any type of blood cancer (leukaemia, lymphoma, myeloma, MDS, MPN), whether you're on treatment or not
  • you have a compromised immune system as a result of blood cancer in the past (immunosuppression)
  • you had a stem cell or bone marrow transplant in the past
  • you have any other underlying condition that means you're classed as 'clinically vulnerable' or 'clinically extremely vulnerable'

You should also have already had the covid vaccine early (in a priority group) if you are aged 16 or over and:

  • you are an unpaid carer for someone with blood cancer
  • you are a household contact of someone who is immunosuppressed (if you live with someone with blood cancer).

If you haven't had your covid vaccine yet, contact our support services team for help booking yours.

Covid vaccines for children aged 12 or over

On 19 July 2021, the JCVI gave its advice to the UK government that some children aged 12 and above should now be offered the covid vaccine in the UK. The JCVI is the organisation that advises the UK government and health departments on immunisation.

The latest advice says that these children should now be offered the vaccine:

  • children aged 12 to 15 who have immunosuppression - this includes children with blood cancer
  • children and young adults aged 12 to 17 who live with someone with immunosuppression - this includes living with an adult or child (any age) with blood cancer
  • young adults who are turning 18 in the next 3 months - this is to make sure newly turned 18-year-olds get the vaccine quickly.

Young adults aged 16 to 17 should have already been offered the vaccine if they have an underlying health condition, are unpaid carers, or if they live with someone with immunosuppression.

These groups should be given the Pfizer vaccine, as this is the only vaccine licensed for people under 18.

What does 'immunosuppression' mean?

Anyone with blood cancer (adult or child, any age) is classed as immunosuppressed, because blood cancer affects the immune system. This includes people who aren't currently having treatment, and people with chronic blood cancers such as MPNs.

Anyone who had blood cancer in the past is also classed as immunosuppressed. The government's Green Book (page 11) defines immunosuppressed as "anyone with a history of haematological malignancy" (blood cancer).

If you have trouble explaining to your GP that you are immunosuppressed, show them this web page, or contact us and we can help.

How will children get the vaccine?

Now the JCVI has given this advice to the government, it is up to health departments in each country of the UK to decide to follow it. Then, the NHS can begin delivering the vaccines.

We are waiting for confirmation about what you should do if your child is in these new groups for the vaccine, and how you should book their vaccine. We will update our information and social media as soon as we know more.

What about children under 12, who live with someone immunosuppressed?

Currently, no covid vaccine has been licensed for children under 12. This means we don't have the evidence we need about safety and effectiveness to recommend giving the vaccine to under-12s.

Trials are underway however, so there could be vaccines approved for under-12s in the future. The JCVI is continuing to monitor data from around the world, including trials where young children under 12 are being given covid vaccines. The guidance in the UK could change as we get more data on safety and effectiveness.

For now, if you are worried about a child under 12 living with someone immunosuppressed, talk to your doctor or medical team about what you can do. You may also want to read our information about coping with risk as restrictions are lifted and coronavirus at school.

You can talk to other parents about this on our online community forum. We can talk to you about your situation and give you our best advice and information too. Contact our Support Service on 0808 2080 888 or send us a message.

What about children under 12, who have blood cancer?

Currently, no covid vaccine has been licensed for children under 12. This means we don't have the evidence we need about safety and effectiveness to recommend giving the vaccine to under-12s. Trials are underway however, so there could be vaccines approved for under-12s in the future.

If your child has blood cancer, talk to their medical team. The JCVI advises that vaccinating a child who is clinically extremely vulnerable should be a carefully discussed between parents/guardians and the child's doctor.

For many children with blood cancer, the risk of coronavirus is not as significant as previously thought. Coronavirus affects children much less severely than it does adults, and the latest evidence suggests that many children with cancer are not at high risk of becoming seriously ill if they get coronavirus. This is why many children with cancer were removed from the shielding list in 2020.

There is a group of children that are still classed as clinically extremely vulnerable. At the moment, these children will be taking extra precautions to avoid any infections (not just coronavirus). We have more information about which children with cancer are clinically extremely vulnerable and coping with risk as restrictions are lifted.

This is understandably a really difficult situation to be in. Remember you can talk to us or talk to other parents on our online community forum.

Covid vaccine booster doses in autumn 2021

On 30 June 2021, the JCVI released its 'interim advice' on the potential COVID-19 booster vaccine programme for winter 2021. As this is interim advice, it could change, and we will update our information when the final decisions are confirmed.

At the moment, the JCVI advice is that the following groups should be offered a third covid vaccine booster dose along with their flu vaccine from September 2021:

  • adults aged 16 years and over who are considered clinically extremely vulnerable
  • adults aged 16 years and over who are immunosuppressed
  • all adults aged 70 years or over
  • frontline health and social care workers
  • those living in residential care homes for older adults

The next group to be offered a third covid vaccine dose should be:

  • all adults aged 50 years and over
  • adults aged 16 to 49 years who are in a clinical risk group for flu or coronavirus
  • adult household contacts of immunosuppressed individuals

As most younger adults will only receive their second covid vaccine dose in late summer, the benefits of booster vaccination in this group will be considered at a later time.

This is 'interim advice' from the JCVI. This is not the government's final decision. We are waiting for a final decision about whether, and how, these booster doses will be given out. We will update our information as soon as we know more.

Flu vaccines for adults and children

If you currently have any type of blood cancer, whether you are having treatment or not, you should get a free priority flu jab.

If you had blood cancer in the past, but you still have a compromised immune system, then you should also get a free priority flu jab.

For 2021, the JCVI have recommended that countries in the UK offer free flu jabs to all of the following groups:

  • all children aged 2 to 15 by 31 August 2021 (but not 16 years or older) (nasal spray version)
  • those aged 6 months to under 50 years in clinical risk groups
  • pregnant women
  • those aged 50 years and over
  • those in long-stay residential care homes
  • carers
  • close contacts of immunocompromised individuals
  • frontline health and social care staff

We will update our information when we know more about when and how you should book your flu vaccine.

For a child aged 16 or under who has blood cancer or a compromised immune system, they should not get the nasal spray version of the vaccine, as this is a live vaccine. They should have the jab version instead, which is not live.

Useful links for booking your covid vaccine

Unpaid carers and household contacts (people who live with a clinically extremely vulnerable person) can now get vaccinated in group 6 of the roll-out. See our information below on 'Getting a covid vaccine if you are in priority group 6'.

Getting a covid vaccine if you have blood cancer (priority group 4) (clinically extremely vulnerable)

Updated 6 April 2021

People who currently have any type of blood cancer are clinically extremely vulnerable and should be on the shielding list. This means you are in priority group 4 for the vaccine. You should have been invited for your vaccine by 15 February, in all countries of the UK.

If you haven't been contacted yet, you should now contact your GP urgently to make sure you're on the shielding list, and use the links/numbers above to book yourself a vaccine.

Being on the shielding list is important not just for getting your vaccine now, but in case the same priority list is used for future covid vaccines.

If you have received letters about shielding during the pandemic, then you are on the shielding list and should have been invited for the vaccine.

If you are not on the shielding list but think you should be, tell your hospital team and your GP, as either of these can add you to the list. Send them this web page, which explains why you should be on the list and how to add you.

If your second vaccination appointment is cancelled

For most people the vaccination process is going smoothly, but we're aware that a small number of people have had their second appointment cancelled because of problems with the supply of the vaccine. Here's what to do if this happens.

  1. Talk to your GP to see if there are supplies further away, if you're able to travel.
  2. Ask your GP if your name is being held on a list, and whether someone will contact you when supplies are available again.
  3. Speak to your specialist doctor (haematologist) to see if there is anything they can do to help.
  4. Phone 119 to ask if they have information on the situation in your area.

If you need to take things further, contact your local clinical commissioning group or your local MP. You can also call our Support Services Team to talk things through.

If you have an MPN

If you have an MPN and are having trouble getting on the shielding list, share this document with your GP. It explains why you should be on the list and how to add you:

Getting a covid vaccine if you are in priority group 6 (clinically vulnerable, unpaid carers and household contacts)

Updated 27 April 2021

People in priority group 6 are now being invited for their vaccines. You will be contacted by either the NHS or your GP to invite you to book your vaccine appointment. You may also be able to use the links given at the top of this page to book your own vaccine.

Group 6 are the over-16s who are clinically vulnerable (have an underlying health condition, but aren't clinically extremely vulnerable), unpaid carers, and household contacts of immunosuppressed people.

People aged 16 to 64 years with underlying health conditions

If you are under 65, and you're not already included in priority group 4 (clinically extremely vulnerable), then you are in group 6 if you have had a stem cell or bone marrow transplant in the past, if you have immunosuppression due to disease or treatment, or if you have any other underlying conditions listed in the government's guidance under 'Persons with underlying health conditions'.

The government refers to The Green Book for a definition of 'immunosuppression' and The Green Book defines "anyone with a history of haematological malignancy" as immunosuppressed - see Chapter 14a page 11 of The Green Book. So if you have a history of blood cancer, you could be in priority group 6.

Although the government guidance automatically puts people whose stem cell transplant was over 6 months ago in priority group 6, it also highlights that clinicians will use their judgement to add other people to priority group 4 if they feel that's best. If you've had a transplant in the past, we have more information and sources to help you talk to your doctor about which group you are in.

If you are in priority group 6, your GP will need to know this in order to invite you for a vaccine or allow you to book it online. Try the links and numbers at the top of this page to book your vaccine, and if this doesn't work, contact your GP.

Unpaid carers (if you look after someone with blood cancer)

Unpaid carers are people who are the main carer of an elderly or disabled person (adult or child – and cancer counts as a disability) whose welfare may be at risk if the carer falls ill, or anyone who is eligible for Carer’s Allowance.

If you think you may be an unpaid carer but aren't on Carer's Allowance, read this information from Carer's UK, and contact your GP to register as a carer.

Ideally, you should be registered as a carer to get the vaccine in group 6. You can tell your GP you are a carer, even if you don't qualify for or get Carer's Allowance.

In Scotland, you should still let your GP and/or local carer centre know you are an unpaid carer, but in terms of getting the vaccine, you will also need to self-refer for the vaccine.

We are aware that people who live with someone with blood cancer have been able to get a vaccine by various methods:

  • First try the links and numbers for your country at the top of this page.
  • Call or email your GP to tell them you're looking after someone with blood cancer.
  • Call 119 and tell them you're looking after someone with blood cancer.
  • Contact your local vaccination centre and tell them you're looking after someone with blood cancer.

Household contacts of immunosuppressed people (if you live with someone with blood cancer)

On 29 March 2021, the JCVI recommended that household contacts of people who are severely immunosuppressed get a covid vaccine in priority group 6, along with unpaid carers and people with underlying health conditions.

As of 27 April 2021, we are aware that the NHS in England, Scotland and Wales are following this advice. We are awaiting confirmation from Northern Ireland as to whether they will also follow it.

Anyone who is a household contact of someone with a history of blood cancer should now be offered a covid vaccine in England, Scotland and Wales.

If you need help talking to your GP about getting the vaccine as a household contact of someone with blood cancer, share the below document with them. This document currently refers to England, but it may be helpful for people in Scotland and Wales too. We will update it for Scotland and Wales as soon as the NHS in those countries releases guidance on how they will implement the vaccines for household contacts.

Household contacts are adults who expect to share living accommodation on most days with someone severely immunosuppressed, where continuing close contact is unavoidable. Both the immunosuppressed person and the household contact need to be 16 or over. Members of support bubbles who do not share living space with the person for the majority of the week are excluded from the definition, but they may be eligible for vaccination in group 6 as registered or unpaid carers (see above).

'Severely immunosuppressed' is defined by the JCVI (and The Green Book on page 11) as:

  • anyone with a history of haematological malignancy - this means anyone with a history of blood cancer
  • people who require long-term immunosuppressive treatments
  • people who are receiving immunosuppressive or immunomodulating biological therapy, or steroid sparing agents
  • people treated with or likely to be treated with systemic steroids for more than a month at a dose equivalent to prednisolone at 20mg or more per day for adults.

You can see the letter sent to GPs in England, the update from the government in Wales, the web page from the NHS in Scotland which mentions household contacts, and also the letter from the JCVI, and the letter from Matt Hancock.

Guidance in England:

GPs will write to any patients they have who are immunosuppressed to tell them about this.

If you are a household contact of someone with a history of blood cancer, you should contact your GP to book a vaccine.

You will need to take your own proof of address to your vaccination, which matches the address of the immunosuppressed person, although GPs have been asked to be flexible if in some situations you are a close contact that does not live at the same address.

If you are registered at a different GP to the immunosuppressed person, you can use the letter they receive with your own GP to book your vaccine.

If household contacts have trouble booking their vaccination

We’re hearing that a few GPs in England aren't aware that household contacts are now eligible for vaccination, or aren't aware that appointments should be booked through them. If you're a household contact and this happens to you, show your GP the letter we've prepared above. The guidance from NHS England states very clearly that household contacts are eligible and that vaccinations should be arranged through the GP surgery.

If you need to take things further, you can ask to speak to the Practice Manager at your surgery and if necessary, make a complaint. Or contact the customer contact centre for NHS England.

We're aware that some household contacts aged 16 to 18 are finding it difficult to get vaccinated because of low supplies of the Pfizer vaccine - the only one approved for this age group. If this happens, follow the advice above under "If your second vaccination appointment is cancelled".

For Scotland and Wales, we don't yet know what the process for booking household members' vaccinations will be - we will update this page when the guidance is published.

Which blood cancer patients are clinically extremely vulnerable? (priority group 4)

Blood cancer affects the immune system, and so do its treatments.

Adults with blood cancer may have a compromised immune system and therefore be at high risk of serious illness from coronavirus.

Even people who are not on treatment (for example, those on ‘watch and wait’) may have compromised immune systems due to the cancer itself.

Since the start of the pandemic, we have learned more about how coronavirus affects different people, and it is clear that people with blood cancer have a higher chance of getting seriously ill from coronavirus and of dying with it. A recent meta-analysis of studies found that 34% of people with blood cancer in hospital with coronavirus died.

It is crucial that people with blood cancer who are clinically extremely vulnerable are on the Shielded Patients List so they are invited for their vaccine at the appropriate time.

Being on the Shielded Patients List also means people will receive relevant letters from the Department of Health & Social Care. In some areas where the risk is very high, the government are advising this group not to go out to work, and these letters provide evidence to people’s employers and enable them to access sick pay and other government support.

The government automatically includes adults with blood cancer in the clinically extremely vulnerable group if they:

*If your transplant was more than 6 months ago, the government automatically classes you as vulnerable (not extremely vulnerable). But – your doctor can choose to move you to the extremely vulnerable group. We have more information and sources to help you talk to your doctor about which group you are in.

In England, the Clinical Director for Cancer (Peter Johnson) sent a letter to all cancer teams, with added clarification that the high-risk criteria includes blood cancer patients:

  • before, during or after treatment, including those being managed expectantly (on watch and wait)

How to add patients to the Shielded Patients List

GPs and hospital teams can and should add patients to the Shielded Patients List. There is guidance on how to do this across the UK here:

England

Scotland

Wales

  • You can find a list of patients who are on the shielding list through the Primary Care Portal.
  • To add a patient to the shielding list, add the code ‘65Z.. Infectious disease prevention/control NOS’ to their patient record.
  • For hospitals – tell your Health Board’s Information Department, who have access to the shielding list and who regularly submit new additions for the shielding list to the NHS Wales Informatics Service.

Northern Ireland

  • Use the Primary Care intranet site for guidance and searches you can run on EMIS and Vision to manage high-risk patients.

If GP’s are unsure about a patient’s condition, they should speak with their specialist treating team (eg haematology).

The RCGP has guidance on how to flag patients as clinically extremely vulnerable.

In England, the Medical Director for Primary Care (Dr Nikita Kanani) sent a letter to all GP practices on 2 November, requesting them to continue flagging high-risk patients and adding them to the Shielded Patients List.

During the first period of shielding in the UK, many blood cancer patients did not receive their shielding letters for weeks, some not for months. It is crucial this does not happen again, as these letters provide evidence to employers that people should be off work as per government advice.

Being on the Shielded Patients List is now crucial for blood cancer patients, to ensure they are invited for their covid vaccine.

Chronic myeloid leukaemia (CML) and Myeloproliferative neoplasms (polycythaemia vera, essential thrombocythaemia, myelofibrosis)

There has been some uncertainty about how high-risk CML and MPN patients are. The NHS at a national level does include all CML and MPN patients in the clinically extremely vulnerable category.

Now that we know how high-risk blood cancer patients are from coronavirus, it is crucial that all blood cancer patients, including CML and MPN patients, are added to the Shielded Patients List (listed as clinically extremely vulnerable) and invited for their covid vaccine as part of priority group 4.

A recent meta-analysis of studies found that 34% of people with MPNs and CML in hospital with coronavirus died.

GPs can and should add their CML and MPN patients to the Shielded Patients List. This could be important for the future, for example for future covid vaccine roll-outs, or government support for those shielding.

MPN Voice has this statement on its website, clarifying that MPN patients should be offered the vaccine.

The International Chronic Myeloid Leukaemia Foundation (iCMLf) has this statement on its website, clarifying that CML patients should be offered the vaccine.

If you have an MPN and are having trouble getting on the shielding list, share this document with your GP. It explains why you should be on the list and how to add you:

Are people in remission from blood cancer clinically extremely vulnerable?

Patients in remission from myeloma could still have a compromised immune system and are included in the criteria as someone who "currently has any type of blood cancer”. They should be on the Shielded Patient List.

Patients in remission with a chronic blood cancer could still have a compromised immune system and are included in the criteria above as someone who "currently has any type of blood cancer”. They should be on the Shielded Patient List unless their specialist doctor advises otherwise.

Patients in remission from any other blood cancer: The length of time it takes for the immune system to recover after cancer and its treatment varies depending on the type of cancer, the treatment given and the person as an individual. There is no specific time frame. Generally, it takes a few months to a year to recover. Many people’s immune systems recover to a normal level after treatment. However, some patients experience ongoing issues with being more prone to infections and getting more severe infections. It’s important to discuss this with patients and their specialist blood cancer teams, to agree whether they would benefit from being on the Shielded Patients List. Even if they are not on the shielding list, they may still be 'clinically vulnerable' (rather than clinically extremely vulnerable) and should therefore be included in priority group 6 for the covid vaccine - see above under 'People aged 16 to 64 years with underlying health conditions'.

Patients who finished chemotherapy in the last 3 months: These patients may still have a compromised immune system. This should be discussed with the patient’s specialist blood cancer team.

Patients who've had a stem cell transplant: If the transplant was in the last 6 months, they are automatically classed as clinically extremely vulnerable and should be on the Shielded Patient List. If the transplant was over 6 months ago, the government guidance automatically classes them as vulnerable (not extremely vulnerable). But – their doctor can choose to move them to the extremely vulnerable group if they feel this is best. We have more information and sources about how long people may be extremely vulnerable for after a transplant.

Support for GPs

If you have any patients affected by blood cancer, you can signpost them to Blood Cancer UK for support and information.

We are also very happy to speak to GPs and other healthcare professionals if helpful - contact us for information about blood cancer and coronavirus.

Our support line offers emotional and practical support. It is free to call on 0808 2080 888 or email [email protected]

Our website has up-to-date information about blood cancer, coronavirus, and living with blood cancer.

Where can I have the covid vaccine safely?

The covid vaccine will be rolled out at hospital hubs, local community services (like GP surgeries), and vaccination centres (like conference centres and sports stadiums).

Any setting administering the vaccine will follow strict guidelines to ensure this is a COVID-safe environment for clinically extremely vulnerable people to visit.

GPs and any other settings delivering coronavirus vaccines have been given strict guidelines and instructions on things like:

  • storage and handling of the vaccine
  • training of healthcare providers who will administer the vaccine
  • ensuring a COVID-safe environment
  • managing side effects and any reactions
  • monitoring patients when they have the vaccine and for 15 minutes afterwards.

They have also had their site inspected to ensure they are ready for the roll-out.

What are the side effects of the covid vaccine?

Like all vaccines, the Pfizer, AstraZeneca/Oxford and Moderna covid vaccines can cause side effects, although not everybody gets them.

Pfizer vaccine side effects

Most side effects are mild or moderate and go away within a few days.

Common side effects include pain, swelling or redness at the injection site, tiredness, headache, muscle pain, chills, joint pain, fever and nausea (feeling sick).

Here is the full list of reported side effects, including less common ones: Pfizer vaccine side effects.

AstraZeneca/Oxford vaccine side effects

Most side effects are mild or moderate and go away within a few days, with some still present a week after vaccination.

Common side effects include tenderness, pain, warmth, redness, itching, swelling, bruising or a lump where the injection is given, generally feeling unwell, feeling tired (fatigue), chills or feeling feverish, fever, headache, feeling sick (nausea), being sick (vomiting), joint pain or muscle ache, and flu-like symptoms, such as high temperature, sore throat, runny nose, cough and chills.

Here is the full list of reported side effects, including less common ones: AstraZeneca/Oxford vaccine side effects.

Moderna vaccine side effects

Most side effects go away within a few days of appearing.

Common side effects include tenderness and swelling of the underarm glands on the same side as the injection site, pain or swelling at the injection site, headache, nausea (feeling sick), vomiting, muscle ache, joint aches, stiffness, feeling very tired, chills and fever.

Here is the full list of reported side effects, including less common ones: Moderna vaccine side effects.

Healthcare workers who administer the vaccine can tell you about any side effects and are trained in what to watch out for. You will also be asked to wait for 15 minutes after your injection to make sure you are OK before you leave.

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 support line on 0808 2080 888. 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.

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.

We're here for you if you want to talk

0808 2080 888

[email protected]