While society enjoys increasing freedoms from the lifting of COVID-19 restrictions, people with blood cancer and blood disorders are being forgotten.
Our latest patient survey shows that, over a year into the pandemic, there is still no end in sight for many shielding patients with blood cancer or a blood disorder, including people who have had a stem cell transplant.
There is very little certainty over how effective the COVID-19 vaccine is for these patients. Every day, they are faced with tough choices about if and how they can return to work and public spaces while remaining extremely vulnerable to the virus. For these vulnerable patients, there is no ‘return to normality’.
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The most difficult thing is the uncertainty. I don’t want to hold my family back from going out but, of course, I also don’t want to put myself at risk. It breaks my heart to miss them.
A shielding Anthony Nolan patient
Between March and May 2021, we asked people with blood cancer and blood disorders, including anyone who has had a stem cell transplant, to tell us what life is like for them as the general population emerges out of lockdown. The following survey results and video testimony provide an insight into the day-to-day experiences for patients.
You can help patients:
Write to your MP
Write to your MP to ask that people with blood cancer and blood disorders are not forgotten. You can download our template letter below and look up your MP’s contact details here.
What does our latest survey tell us?
Many blood cancer and blood disorder patients feel they have no choice but to keep shielding
Our online survey was open to anyone in the UK diagnosed with a blood cancer or blood disorder, including anyone who has had a stem cell transplant.
We received 273 responses between 30 March and 8 May 2021.
I really need to know if the vaccine has produced any immunity in me. Otherwise, it’s like I’m left with so much uncertainty hanging over my head.
A shielding Anthony Nolan patient
Over half of patients surveyed (58%) are concerned that the vaccine may not be effective for them.
This uncertainty is leaving many patients feeling torn between desperately wanting to see their friends and family, and knowing that every step towards ‘normality’ brings potentially life-threatening risks.
My mind whirls between thinking I should just “sod it” and go with them – after all with myeloma who knows how long I have left – and feeling that the risk of infection, means I am wiser to stay at home.
A shielding Anthony Nolan patient
A startling 42% of patients we surveyed are unlikely to stop shielding – potentially equating to up to 110,000 people with blood cancer across the UK.
Over a quarter of patients surveyed (29%) plan to keep shielding even after receiving both doses of the vaccine.
Will I ever feel safe?
A shielding Anthony Nolan patient
For many patients there is no end in sight – 44% of patients surveyed have no idea when they might feel safe enough to stop shielding, while almost one in ten (8%) think it could be a year or longer.
Essential government support is being taken away
One in five respondents (22%) are financially worse off since the start of the pandemic. It’s very likely that this figure under-represents the true impact on people’s personal finances. Costs incurred include:
- Paying for alternatives to public transport for essential visits to hospital
- Needing to buy face masks and other protective items
- Higher utility bills
- Supermarket delivery charges
I wasn’t offered furlough and now I’m in a huge financial hole because of the lack of financial support. I had to sell my previous home and have racked up credit card debt.
Anthony Nolan patient
In some cases, patients or their carers have had to quit their jobs for fear of catching COVID-19 – which can lead to severe financial hardship.
Almost half of respondents (49%) identified access to government support, including furlough and supermarket/medicine delivery schemes, as important to their ability to keep shielding. Yet with the shielding programme now closed and furlough scheme due to come to an end in September 2021, these vital support options are being taken away.
I am afraid of returning to work after nearly two years and not being welcomed due to the fact I have been shielding, but on the outside look fit and healthy. My boss seemed to think it was safe to return to work last year... even though I had been advised the opposite by my medical team.
Anthony Nolan patient
Over a fifth (21%) of respondents are anxious that their employers might ask them to return to the workplace before they feel safe to do so.
Over a year of shielding is having a concerning impact on mental health
Almost three quarters (74%) of patients we asked report having worse mental health and wellbeing than before the pandemic.
The most common emotions reported are anxiety (68%), frustration (63%), being overwhelmed (40%) and afraid (39%).
My worry and anxiety has been absolutely through the roof. It’s been awful.
Anthony Nolan patient
A number of patients told us that their mental health and wellbeing has also suffered as a result of delays to accessing treatment. Although a relatively small proportion of respondents reported having a treatment postponed (14%), over three quarters of these (65%) experienced a delay of over three months.
The low number of blood cancer and blood disorder patients who have been affected by treatment delays compared to other conditions is likely due to the urgent nature of procedures such as stem cell transplants. Nonetheless, patients have told us about difficulties in accessing essential non-emergency services.
I kept ringing my GP but I couldn’t get a phone consultation for a really long time because they were overwhelmed by people with COVID-19. I didn’t feel like they were treating my needs as important as they would have been if the pandemic hadn’t been going on. It absolutely feels like we’ve been left behind.
Anthony Nolan patient
These issues have been compounded by the sense of isolation that many patients feel due to not having as much face-to-face support and not being able to bring family or friends along to appointments.
Patients need our help – and there’s no time to lose
The results from our survey are clear. Thousands of people with blood cancer and blood disorders need more support to cope with the devastating emotional and financial impacts of the pandemic. But we can be there for patients when they need us most.
We are asking the Government and NHS leaders to step up by:
- Funding research into the efficacy of the COVID-19 vaccine and treatment options for people with blood cancer or a blood disorder. Until we have more answers, this group of people will continue to be left in the dark.
- Offering people who are immunocompromised access to routine antibody testing to help them make better informed decisions.
- Continuing supermarket priority delivery slots for vulnerable patients.
- Ensuring that anyone who wants to keep shielding can access financial support (like Employment and Support Allowance and Statutory Sick Pay) without having to go through an arduous process now that shielding has ended.
- Keeping the furlough scheme open beyond September 2021 for people who are clinically vulnerable to COVID-19.
- Providing dedicated mental health support and signposting for everyone who needs to keep shielding.
You can stop people with blood cancers and blood disorders from being forgotten.
Write to your MP
Write to your MP to ask that people with blood cancer and blood disorders are not left behind. You can look up your MP’s contact details here.
Donate to our Vaccine Research Appeal
Consider donating to our Vaccine Research Appeal to fund urgent research into COVID-19 vaccine efficacy and treatment for people who are immunocompromised.
Get your COVID-19 vaccine
Every additional person vaccinated is an extra level of protection for people who can't get the vaccine themselves or for whom it may be less effective.
You can help protect patients by getting your COVID-19 vaccination when it is offered.
Visit our patients and families page for advice and support.