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 Manning is a social entrepreneur, writer, campaigner and commentator. She is based in London and is the founder and Chief Executive of 2020health, an independent, social enterprise Think Tank whose aim is to Make Health Personal. Through networking, technology, research, relationships and campaigning 2020health has influenced opinion and action in fields as diverse as bioethics, alcohol, emerging technologies, fraud, education, consumer technology and vaccination. Julia studied visual science at City University and became a member of the College of Optometrists in 1991. Her career has included being a visiting lecturer at City University, a visiting clinician at the Royal Free Hospital, working with south London Primary Care Trusts and as a Director of the UK Institute of Optometry. She specialised in diabetes (University of Warwick Certificate in Diabetic Care) and founded Julia Manning Eyecare in 2004, a home and prison visiting practice for people with mental and physical disabilities using the latest digital technology, which she sold to Healthcall (now part of Specsavers) in 2009. Experiences of working in the NHS, contributing to policy development, raising two children in the inner-city and standing in the General Election in Bristol in 2005 led to Julia forming 2020health at the end of 2006. Julia is a regular guest on TV and radio shows such as BBC News, ITV’s Daybreak/ GMB, Channel 5 News, BBC 1′s The Big Questions, BBC Radio, LBC and has taken part in debates and contributed to BBC’s Newsnight, Panorama, You and Yours and ITV’s The Week. She is mum to a rugby-mad son, a daughter passionate about Shakespeare, and wife of a comprehensive school assistant head-teacher. She loves gardening, ballet, Zimbabwe, her Westies Skye and Angus, is an honorary research associate at UCL and a Fellow of the RSA.
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