Blood Cancer UK: Hopes for our community’s future in the time of COVID

This thought leadership series has been paid and developed by Kite, a Gilead Company.

This Blood Cancer Awareness Month, Blood Cancer UK’s Kate Keightley explains the need for better awareness and understanding of this common, but less-understood disease.

Blood cancer is the fifth most common cancer in the UK and the third most deadly, killing more people than prostate and breast cancer.¹ Unlike other cancers, the signs are not always as obvious and the symptoms largely unrecognised and unknown to the general public.²

Thankfully, many forms of blood cancer respond well with early diagnosis and treatment, and this is the driver behind the annual push during Blood Cancer Awareness Month to spread the word and increase understanding of all blood cancers.

Effects of the pandemic on the blood cancer community

This year our community faces some particular challenges as the scale of COVID’s impact becomes clearer.

The pandemic has, as with so many other critical illnesses, delayed identification and treatment. We noticed that the number of people coming through to Blood Cancer UK asking about signs and symptoms or a new diagnosis at the start of the pandemic had dwindled considerably. Instead, while the number of people contacting us increased substantially, their queries were almost all focused on COVID and many said they didn’t feel safe going to see their GP if they felt unwell.

Now, although referrals have picked up, we are worried they have not yet reached a sufficient rate to clear the backlog from the last 18 months. Our main concern is the number of people living with an undiagnosed blood cancer who are unaware they are at higher risk of severe disease should they contract COVID.

It’s clear that the pandemic has taken a considerable toll on patients’ mental health. In our 2020 survey of over 6,400 people in the blood cancer community, 87% said that their mental health had been impacted.³ This is the short-term situation – there are likely to be long-term effects as well.

Physical and mental health support for patients

Our first aim during the pandemic was to provide support for as many people affected by blood cancer as possible during this difficult time. We offered weekend and evening services, and this made it easier for more people to access us and gain support at a convenient time.

The pandemic inevitably brought a spike in anxiety³, but in our experience, any announcement or change in guidance can amplify confusion and the spread of misinformation. Our role is to counteract that and provide clear information aimed at the specific concerns of many in our community. The challenge as shielding has come to an end is to support those people who feel even more neglected by the government than they were previously.

As lockdown restrictions eased a few months ago, there was scant mention of people who were immunocompromised. Messaging was targeted towards the general public, not those most at risk. The biggest issue we saw as restrictions eased was that many people weren’t aware they might still be at high risk even after two vaccinations, which left them unable to make informed decisions.

We are advocating for an improvement in central government’s communications with the immunocompromised community, so they feel included and supported at every level and therefore less anxious and fearful.

Three key areas of research

Ongoing provision of mental health support for those people who have been shielding for a long time is crucial and needs adequate funding. Within this, we identified three key areas requiring further investigation: additional measures to vaccines; the impact of the third dose of the vaccine; and more support around the signs and symptoms of blood cancer.

Blood Cancer UK, in partnership with other charities and industry, has funded a research programme to understand the effects of vaccination for people with different types of blood cancer on different types of treatment to develop more tailored guidance to people’s level of risk. We are also closely watching the development of additional options that may protect people who are immunocompromised beyond the vaccine. There are some exciting developments – the role of monoclonal antibody preventative treatment, as well as post-exposure treatments, are areas of real interest. We now need to understand how these alternatives may be prioritised for people who haven't developed adequate antibodies from vaccination.

Sharing insight across communities

When we bring together all those working in blood cancer: industry, research networks and healthcare professionals, we can better understand the effectiveness of vaccines across different blood cancer conditions and treatments. To this end, we’ve set up the Blood Cancer UK Vaccine Task Force⁴, which will run for 12 months and is supported by a coalition of funders including Gilead.

“When we bring together all those working in blood cancer: industry, research networks and healthcare professionals, we can better understand the effectiveness of vaccines across different blood cancer conditions and treatments.”

In the same spirit of collaboration, we have teamed up with a number of other blood cancer charities across the world for Blood Cancer Awareness Month, sharing insights from people who have had a blood cancer diagnosis about their signs and symptoms and importantly, their route from GP to haematologist. We are also highlighting the enduring importance of research, which has not only impacted the treatment of blood cancer but has triggered insights across oncology.

Help and support for blood cancer patients

This month we’ve also launched a range of material for people who've been newly diagnosed. We find that this is when patients need the most support and sound advice. An information booklet is now available offering guidance and information relevant to this particular stage in their journey, and there’s a weekly webinar to help people adjust to the changes brought about by a recent diagnosis.

Our clinical trials support service aims to increase access to clinical trials and by identifying trials people may be eligible for and providing support before, during or after a clinical trial. Our accompanying webpages feature stories, blogs and insights from our researchers, detailing how their involvement in trials has impacted them. In all, we’re funding 90 projects across 27 different institutions in the UK.

Hope for the future in blood cancer

Everything we do is geared towards beating blood cancer, supporting people experiencing blood cancer now, and keeping the blood cancer community’s needs at the heart of decision making in the UK. We'll continue to work with the Department of Health and NHS England in the UK, and across healthcare bodies around the world so our efforts are not unilateral.

I truly believe that we can beat blood cancer in a generation through research. We are reaching more and more people each day, but it’s still a small proportion of the numbers diagnosed each year. But by extending our reach and our services, I hope more people with blood cancer will have access to a place to turn to for support, advice and the reassurance that they’re not alone.

About the author

Kate Keightley is head of support services at Blood Cancer UK

About Blood Cancer UK

We're a community dedicated to beating blood cancer by funding research and supporting those affected. Since 1960, we've invested over £500 million in blood cancer research, transforming treatments and saving lives. For more information visit bloodcancer.org.uk.

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