The biggest cancer you’ve never heard of

Guest Blog by Chris West, Head of Media & Public Affairs at Bloodwise

Being given the news you have cancer is one of the most devastating things you can hear.  People who have gone through it talk about the shock, about not knowing if they’ll live beyond it, and wondering how to go about telling their family.

Now imagine that in addition to all that, you have the added confusion and fear of being told you have a cancer you’ve never heard of.  You don’t know anything about this kind of cancer, or know anyone who’s ever had it.  You don’t understand what the disease is, what the treatment options are, or where to go for information and support.

This is too often the experience of patients who are diagnosed with a blood cancer.  It’s a complex disease area comprising of 137 individual diseases, some of which affect thousands of people, others only a handful.  Combined, blood cancer is the fifth most common cancer in the UK, accounting for 38,000 new cases and 14,000 deaths each year, yet many people have never heard of it, let alone the charities that exist to help.

To address this, our charity is taking two big steps this month.

Firstly, we’re changing our name.  As the charity has grown over recent years, we’ve started to do more and more for patients.  The name Leukaemia & Lymphoma Research obviously covered our world leading research, but didn’t include our growing patient support services, our campaigning and advocacy work or our fundraising.  In addition, our vision is to beat all blood cancers, not just lekaemia and lymphoma.  Our name was no longer representing who we are or what we do, and starting to hold us back.

The name Bloodwise embraces all blood cancers.  It’s simple, short, and crucially, easy to remember, particularly important to someone who’s life has just been turned upside down by news of a diagnosis.

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The second big step we’re taking is to embark on the UK’s biggest blood cancer awareness raising campaign this month, to coincide with Blood Cancer Awareness Month.

Early this year, we published the results of our research into what patients need.  We asked 2,000 people affected by blood cancer what patients and their families needed most.  They came up with many areas of need from right across the patient pathway, including diagnosis, treatment, and care once treatment had ended.

One major issue of need they raised was low public awareness.  Low awareness added significantly to feelings of worry, confusion and isolation for patients.  Being diagnosed with a cancer you’ve never heard of, one that contains many long and complicated words can often make patients feel like there’s nowhere they can turn to for support – low awareness of the disease equals low awareness of charities that can help.  In addition, patients felt that increasing awareness of blood cancer would be a starting point in addressing all the other areas of need they identified.

Screen Shot 2015-09-09 at 11.07.403,000 billboards will be going up across Britain this month for the “137 campaign”, raising awareness of blood cancer and the diseases it includes.  We hope this will help to raise awareness of one of the biggest cancers in the UK – and starting to demystify blood cancer can only help to support and reassure patients and their families.

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About Julia Manning

Julia is a social pioneer, writer and campaigner. She studied visual science at City University and became a member of the College of Optometrists in 1991, later specialising in visual impairment and diabetes. During her career in optometry, she lectured at City University, was a visiting clinician at the Royal Free Hospital and worked with Primary Care Trusts. She ran a domiciliary practice across south London and was a Director of the UK Institute of Optometry. Julia formed 20/20Health in 2006. Becoming an expert in digital health solutions, she led on the NHS–USA Veterans’ Health Digital Health Exchange Programme and was co-founder of the Health Tech and You Awards with Axa PPP and the Design Museum. Her research interests are now in harnessing digital to improve personal health, and she is a PhD candidate in Human Computer Interaction (HCI) at UCL. She is also dedicated to creating a sustainable Whole School Wellbeing Community model for schools that builds relationships, discovers assets and develops life skills. She is a member of the Royal Society of Medicine’s Digital Health Council. Julia has shared 2020health's research widely in the media (BBC News, ITV, Channel 5 News, BBC 1′s The Big Questions & Victoria Derbyshire, BBC Radio 4 Today, PM and Woman's Hour, LBC) and has taken part in debates and contributed to BBC’s Newsnight, Panorama, You and Yours and ITV’s The Week.
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