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Covid vaccine and blood cancer

We're here for you if you want to talk

0808 2080 888

[email protected]

Coping with the lifting of restrictions

Whatever your situation, we want to give you the practical information you need to look after yourself, make decisions and get support.

Page updated 20 June 2022

What are the risks for people with blood cancer?

If you’ve been diagnosed with blood cancer, it’s important to know:

  • People with blood cancer have a higher risk than other people of getting seriously ill with covid, being hospitalised or sadly dying from covid.
  • Covid vaccines are less effective in people with blood cancer than other people. This is because the vaccines need your immune system to react in order for them to work.

Although the vaccines don’t work fully in people with blood cancer, they do still offer some protection, which could be enough to stop you being hospitalised with covid. So it’s really important to make sure you get all of your vaccine doses.

Being at higher risk of serious illness from covid, while also being less protected by the vaccines, means it’s really important to think about your personal level of risk and how you can manage this.

We know this is a hard message to hear, but we want you to know, so you can make informed decisions about your daily life. There’s more support to help you do this below, and we are always here if you need to talk.

Face masks in healthcare settings

Following a change in NHS guidance, it’s no longer compulsory to wear face masks in all areas of hospitals and other healthcare settings. If you are immunosuppressed, this may mean you may feel more worried about attending appointments.

What you can do

It’s understandable if you are concerned, but it's essential to keep going to your appointments. There are steps you can take to lower your risk.

Remember that hospitals and clinics will still carry out local risk assessments in settings where patients are at high risk from covid. So departments like haematology or oncology may still require everyone to wear face masks.

If you’re not sure what the policy is or you have any concerns about your level of risk, call the hospital, clinic or surgery:

  • Explain that you are immunosuppressed and at high risk from covid infection.
  • Ask what the policy is about mask-wearing in the department or clinic where you have an appointment.
  • If you don’t feel reassured, say that you will be wearing a face mask and request that staff and visitors do the same.
  • Refer staff to our information on vaccine efficacy if you need supporting evidence.

Remember that surgical masks and FFP masks offer better protection than cloth face coverings. Masks classed as FFP3 offer the best protection to the person wearing them. Surgical and FFP masks should be used once and thrown away.

Keep following other infection control advice such as thoroughly washing or sanitising your hands regularly, avoiding touching your face and staying 2 metres from other people if you can.

Self-isolation and free testing changes

In England's 'Living with covid-19' plan, the government are making the following big changes:

  • From 21 February 2022, removing the guidance for staff and students in most education and childcare settings to take covid tests twice a week.
  • From 24 February 2022, removing the legal requirement to self-isolate following a positive test, although people will still be advised to avoid contact with others where possible.
  • From 1 April 2022, no longer providing free universal symptomatic and asymptomatic testing for the general public.

But for people with blood cancer, these are also important points to highlight in the plan:

  • On self-isolation, there will be specific guidance for staff in particularly vulnerable services, such as adult social care, healthcare, and prisons and places of detention.

After 1 April 2022, there will still be some limited ongoing free testing:

  • Limited free symptomatic testing available for a small number of at-risk groups - the government will set out further details on which groups will be eligible
  • Free symptomatic testing will remain available to social care staff.

Scotland, Wales and Northern Ireland have their own guidance around covid restrictions which all differ. We've included the bullet points above because the changes in England are the most significant.

Things we are pressing the government on right now

There are some big questions left to answer for people with blood cancer. Rest assured we are pressing the government for answers to these questions urgently:

  • Who is eligible for the "limited free symptomatic testing available for a small number of at-risk groups"? Will everyone with blood cancer be eligible for this?
  • Will the family and friends of people with blood cancer be able to access free tests, so they can protect the person with blood cancer?
  • How will people with blood cancer quickly access new antibody an antiviral treatments for covid? Will they still be able to get fast lateral flow tests in order to access the new treatments?
  • Will healthcare staff looking after blood cancer patients in hospital still be able to access free testing? And will they avoid caring for blood cancer patients if they test positive?

As well as seeking these answers, we are also urging the government to change some of these decisions to give more protection to people with blood cancer. See this briefing from Blood Cancer UK and 17 other charities.

What people with blood cancer can do right now

We are urgently seeking answers to the questions above, and we are pushing the government to do more to protect people with blood cancer and immunosuppression, who remain at high risk even after their vaccines.

In the meantime, you can still:

There is more about coping with uncertainty and anxiety further down this page, including tips from a clinical psychologist, other people with blood cancer, and our Support Service.

You should also know about:

  • Fifth vaccine doses - in the Spring, people with immunosuppression will be offered a second booster jab (their fifth vaccine dose) to keep their level of protection up.
  • Free testing - we are doing everything we can to ensure people with blood cancer, and those in close contact with them, can continue to access lateral flow tests after 1 April - we will keep you updated. There will also be lateral flow tests available to buy after 1 April 2022 - some are already being sold, for example by Superdrug and Boots.
  • Your rights at work - the government's specific guidance for people who are immunosuppressed still says: "Work from home if you can. If you cannot work from home, speak to your employer about what temporary arrangements they can make to reduce your risk." You still have rights as someone with blood cancer (which is classed as a disability) even after self-isolation rules end. There is more about your rights and talking to your employer below.
  • Financial support - while the government's covid specific financial support is being stopped, you would still be eligible for support like Sick Pay under the normal rules, if your doctor or medical team believe you're not able to work because of your blood cancer. We have much more information about financial support including benefits, grants, help with bills and reducing some of your health costs.

The risk of catching covid

One way to think about your risk of catching coronavirus in the UK is to look at what proportion of people in the country are currently infected. This gives an idea of how likely you are to come into contact with someone infected.

The Office for National Statistics gives regular reports on how many people in the community are estimated to be infected. The report from 18 February 2022 estimated that:

  • 1 in 13 people in Northern Ireland is currently infected
  • 1 in 20 people in England is currently infected
  • 1 in 25 people in Wales is currently infected
  • 1 in 25 people in Scotland is currently infected

These are averages from across the country. Infection levels vary in different areas.

This report is updated every week. Check the latest estimates on how many people in England, Scotland, Wales and Northern Ireland are currently infected.

Making decisions that are right for you

Whatever your situation, you can take some control by thinking about the different risks in your life, and which ones you might be able to change.

Everyone’s situation is different, and it’s not always easy or possible to remove every risk, but below is some guidance to help you make these decisions.

Even with risks that you can’t completely remove, there are probably ways you can make them slightly less risky. There are tips below about things to try if you are worried about the risk from school or work.

You might want to start by writing out a list of activities you do. For example: going to the shops; looking after children; going to work; meeting friends; doing a hobby with other people; going out to eat.

You can then think about:

  • Which risks you’ll remove completely (for example, you might get shopping delivered so you can avoid the shops)
  • Which risks you’ll reduce (for example, still spending time with some family members, but not having close physical contact, and only seeing a few close family members)
  • Which risks you can’t you remove (for example, going to work)

How to make decisions

To help you decide which risks to remove completely, and which ones you can reduce, think about each activity you do. Some things are less risky than others.

Higher risk activities:

  • Mixing with people quite often
  • Being in large groups of people or busy places
  • Having close physical contact with people
  • Mixing with people indoors
  • Being around people who don’t wear masks

Lower risk activities:

  • Mixing with people less often
  • Seeing people individually or in very small groups
  • Staying two meters apart from other people
  • Mixing with people outdoors

There will probably always be some level of risk in what you do. The key is to only take these small risks when it’s really worth it, and try to take as few risks as possible.

Try to avoid all the higher risk activities that you can. Don’t do any higher risk activities that are unnecessary. For example, get your shopping or medicines delivered, or ask a neighbour or relative to help collect them, so you don’t need to take risks going shopping.

If something is higher risk, only do this if you really need to, or if you feel the benefits outweigh the risk of covid for you.

Sometimes you can’t avoid everything that’s higher risk, so think about what’s most important to you. If there’s something you just can’t avoid, can you make it lower risk by slightly changing how you do it?

Here are some examples about how other people with blood cancer have made decisions:

  • Someone who still needs to attend work has spoken to his boss and agreed to do less customer service and more admin work in the office, reducing the amount of time spent mixing with other people. A note from his medical team was helpful in getting this agreed.
  • A grandparent who feels that seeing his grandchildren is still hugely important has decided to still have them over, but only for an hour at a time, with lateral flow tests done before arriving, and for the time being, no hugs or close physical contact.
  • One person who is more worried about catching covid than anything has decided to continue shielding because this is what makes her feel safest over the winter.

Coping with making decisions

Some things might be easy to avoid, but really important to you, like spending time with friends or family, or simply going to a local shop and talking to someone.

Many of us are trying to find the right balance between protecting ourselves from the virus and looking after our mental well-being. This balance will probably shift at different times, depending on how high the levels of infection are.

It’s important to realise that with the current Omicron variant, the risk of catching covid has increased a lot, and will continue to be high for at least the next few weeks.

Everyone's personal situation is different, and you need to do what's best for you overall.

Talking to someone can help you work things out - talk to other people with blood cancer in our online forum, or talk to us.

You might also want to see our information about coping with your emotions during the pandemic.

Practical things you can do

When you are doing things, the risk will be lower if:

  • You get all of your covid vaccine doses and booster
  • People you spend time with have been vaccinated and boosted
  • You keep the number of different people you see low - can you prioritise who you choose to see?
  • You spend shorter amounts of time with people (for example an hour or two rather than all day)
  • The people you choose to see are not mixing widely themselves.
  • You meet people outdoors rather than indoors
  • If indoors, you have doors or windows open, so there is good ventilation
  • People around you wear a face mask
  • You don’t share food, cutlery, tea towels, bath/hand towels, or other things that touch your face.

You could also consider:

Make use of lateral flow tests

Take regular rapid covid tests, and ask other people to do the same before they see you . These are available for free from pharmacies or online. It's very important to know that these tests are far from 100% accurate and false negatives (where someone tests negative even though they are carrying covid) are common. While a positive test can certainly help show if someone does have covid, so they can isolate and you can avoid mixing with them, a negative covid test does not prove that someone doesn’t have covid.

If you have children at school, you might be very worried about catching covid this way.

Talk to your child’s school about your situation. They might be able to find ways to further reduce the risk of your child catching covid at school. Some schools are sill able to support home learning and are trying hard to support vulnerable families.

Ask your medical team for advice. They may give you information to share with the school, to help you have a conversation.

You could talk to other parents with blood cancer on our online community forum.

It’s a worrying time for parents and children. Our Support Service can tell you about support and resources for your children if they are finding things hard.

As of December 2021, governments in all four countries of the UK are advising that anyone who can work from home should do this. If your job can be done from home, tell your employer now that you need to stay at home, because you are at high risk from covid.

If you’ve been diagnosed with any blood cancer, you have rights. You are protected by disability law across the UK, even if you’re in remission.

If you can’t work from home, employers still have a duty to protect the health and safety of all their staff. Talk to your medical team and get a note to say it’s unsafe for you to attend the workplace, or that changes need to be made to reduce risk.

As someone with blood cancer, you are protected by the law, which says that your employer must consider reasonable adjustments to help you stay safe at work. This can include making changes to reduce your risk of infection at work.

You might want to share our fact sheet for employers with your employer.

If you're still being pressured to go to work, despite your medical team's advice that it is unsafe, get advice from Acas (Helpline: 0300 123 1100).

We have more information about:

  • Legal protection from discrimination
  • Working from home – even if you don’t normally
  • Adjusting your role or hours to reduce risk
  • Asking your employer for a risk assessment
  • Financial support

See our information on work and money.

Talking to family and friends about your level of risk

Some people say their friends and family don’t fully understand why they are still so worried about covid.

Other people are finding it hard to say no and are feeling guilty about not wanting to mix with others.

Show your family and friends our information about vaccine efficacy in people with blood cancer, to help explain why you are so concerned.

You can also talk to us about how to stick to your boundaries. It’s something we often talk to people about.

Coping mentally

This is a really difficult situation to be in, for you as well as your family and friends. Coping mentally with all the worry is challenging.

You might want to read our information about coping with your emotions during the pandemic.

Even though we can’t take all the risks and worry away, just talking to someone who understands can help. Other people with blood cancer in our online community forum may have similar worries and could give you tips from experience.

We will continue to advocate on behalf of everyone with blood cancer, to get the government and the NHS to improve the care people with blood cancer are getting.

In the team time, we want you to know we are here to support you through it. Contact our Support Service on 0808 2080 888 or [email protected].

Whatever you want to talk about, we are here.

Covid treatments for people with blood cancer

Despite all the worry about catching covid, if you do catch it, there are new treatments for people with blood cancer to prevent severe covid.

Make sure you know about the latest treatments, which have been shown to work in people with impaired immune systems.

If you test positive, make sure you ask about getting these new treatments. Find out more about new covid treatments for people with blood cancer.

You may also want to read our information about what to do if someone in your household gets covid.

"As someone with blood cancer, every day, month and year I can do things feels extra precious. But I feel like covid has robbed me of some of this.

"What I have to keep coming back to is 'scaling the problem' – as long as I don’t catch covid and die from it, then anything is better than that. I also try to see what covid has given me – for me, this is more time with family. It’s easy to become fixated on the losses, but there have been some gains. To anyone else struggling with this, please talk about your concerns – don’t hide them! There are lots of people who understand what you’re going through in our online forum."

Mel, living with chronic lymphocytic leukaemia (CLL).

Dealing with uncertainty

Lots of people talking to us are finding that not knowing how long they’ll need to shield for, or not having the government support to be able to shield if they feel unsafe, is becoming increasingly difficult. There are also uncertainties about how effective the vaccines will be, and whether coronavirus rates will stay down as new variants emerge.

All this uncertainty makes it difficult to look to the future, to plan, to feel hopeful or even happy. It might also be having an impact on your employment or personal relationships. Uncertainty can also cause anxiety, feeling out of control, anger or sadness.

Rebecca, our Support Services Team Leader, shares the suggestions she often gives to callers on our support line:

"It’s important to acknowledge that we are living in challenging times. Uncertainty, whether from coronavirus, a blood cancer diagnosis, or even something like moving house, can sometimes feel unbearable, and lead us to ‘catastrophise’ or focus on the worst possible scenario. This type of thinking is a common response and may seem protective, but it can lead to spiralling “what if” thoughts and panic.

"The first step is to recognise these unhelpful thoughts and to ask yourself, are the things I’m thinking/telling myself based on the information available to me? What information do I need to make an informed decision? Is the source of my information reliable? Sometimes we select information that magnifies negative details, and filter out information that offers balance. There’s a lot we don’t know, and our minds can fill in the gaps with incomplete information, predictions and worry.

"The second step is to ground yourself in the present and the here and now, which can help you sort through your thoughts and feelings, and allow you to reflect before you respond or act. This gives you the space to ask yourself, what do I need right now to help me cope? What support is available to me? We often feel better when we have a plan, as being proactive and focusing on the things we can control can reduce worry.

"The third step is to ask yourself, who can I talk to about this? How have other people found ways to cope? Isolation can increase fears and create more unhelpful thoughts. Seek out connections with others. Sometimes we need help from family or friends, or a professional, to help us sort through our thoughts and feelings and find ways to respond to challenges. You can contact our Support Services Team to talk to one of our team.

"The most important thing is to be kind to yourself. You are not alone. Your feelings are normal. It is normal for your capacity to cope with change to fluctuate, especially if you have other stressors in your life. There are steps you can take and strategies you can practise, to help manage anxiety – some of these are described below."

Paul's story

My mental health and coping strategies for shielding

Paul's story

Self-care tips from a clinical psychologist

Our panel of experts answer your questions about managing uncertainty around blood cancer and the covid-19 vaccine.

"Shielding as a family (for those of us who chose to) hasn’t been easy for household members either.

"It’s been almost a year of full isolation for us too. For those of us who’ve watched our loved one fight for their life, the sense of responsibility to protect them now is overwhelming. Better days are coming though, and we'll keep doing it for as long as it takes, because more than most, we know what's at risk."

Jude, whose husband is living with lymphoma.

In times of uncertainty, many people find these things helpful:

  • First of all, acknowledge and accept how you feel – it’s normal to find this uncertainty difficult.
  • Talk about it – there are many people with blood cancer struggling with this, who are supporting each other. Talk to others or simply read about what helps them in our online forum.
  • Limit how much news you read or watch. It can become slightly addictive, especially if you’re feeling anxious. Try limiting it to once a day.
  • Take moments to engage with or focus on something, to bring your mind into the present moment, rather than worries about the future. For example, do something practical, take some long, slow breaths and count them, or engage your senses by listening to a song, or just really looking at what’s around you, whether in your home or on a walk.
  • Try mindfulness – there are so many ways to be ‘mindful’ (it's not just through meditation) and it reduces stress. Try some of our guided exercises – they take just a few minutes and could help you to feel calm.
  • Find more information and resources on our page about coping with your emotions about coronavirus.

How are other people with blood cancer managing their own risks?

Our panel of experts answer your questions about managing uncertainty around blood cancer and the covid-19 vaccine.

Remember...

This won’t last forever. But for now, it is a difficult time, and we are here to help. Get more tips and support coping with uncertainty from our Support Services Team on 0808 2080 888 or [email protected]. Or, talk to other people with blood cancer in our online forum.

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We're here for you if you want to talk

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