Charity research shows 6 in 10 people with blood cancer are unaware of key benefits they are entitled to when diagnosed
6% of survey respondents found out they had blood cancer while participating in this research
While 1 in 10 find out they have blood cancer from a nameless face – the internet or printed health information
Dr Google is a very scary person to find out your life expectancy from” says patient
Despite most people affected by blood cancer (88% of 2,571 survey respondents) agreeing that they should be told they have a type of blood cancer at diagnosis, Blood Cancer UK’s survey suggests that 2 in 10 people have still never been told they have a blood cancer by a healthcare professional. In fact, 6% of survey respondents found out they had a blood cancer while participating in Blood Cancer UK’s research.
Blood Cancer UK’s report “Raise the profile, reduce the harm”, looks at the perceptions of blood cancer and the findings are published on World Blood Cancer Day (Sunday 28 May). It includes findings from a survey of 2,571 people, including those with blood cancer, healthcare practitioners and those more widely affected.
Blood cancer is a group of conditions including diseases like lymphoma, leukaemia, myeloma and includes the diseases myeloproliferative neoplasms (MPN) and myelodysplasia (MDS). It’s the fifth most common cause of cancer in the UK, with around 280,000 people living with one of these diseases, and 40,000 diagnosed each year. However, this new research, conducted by Supernova on behalf of Blood Cancer UK, shows even when prompted, 6 in 10 (58%) of those with blood cancer are not aware of any support potentially available to them at diagnosis.
Helen Rowntree, Chief Executive of Blood Cancer UK said:
“In many cases, people are not only unaware their condition is a type of blood cancer, but they do not even know it is a type of cancer. Unfortunately, this is a situation particularly relevant to blood cancer, as people affected by the other four common cancers – breast, lung, bowel, and prostate cancer have their condition explained to them in these terms at the very beginning.
“Even when prompted people, there’s a lack of awareness of the support someone with the condition are entitled to. It’s not just financial and employment benefits people struggle to access, people with blood cancer are less likely to be offered information about psychological support than patients with breast or prostate cancer.”
Gemma Trout, Senior Support Services Nurse, Blood Cancer UK, said:
“If people are not told they have blood cancer when diagnosed they can become alarmed when they read that they do. Having a complete diagnosis allows patients to understand their treatment options along with areas of care and seek support.
“We know that often the information given by a person's medical team is focused on the condition itself. Sadly, there’s less emphasis and less time available in appointments to talk through other types of support and how families can access them at any stage.
“At Blood Cancer UK we are here to help if you have questions, worries or just want to talk about what's happening - don’t wait. You can contact our Support Service free on 0808 2080 888 or support@bloodcancer.org.uk”
Even in those who do find out about the nature of their condition, Blood Cancer UK found 1 in 10 find out they have blood cancer from a faceless source – the internet or printed health information. Both the number of people who found out from a faceless source, and those left to find out information for themselves is disproportionately high for people from an ethnic minority.
Franko, 54, from London, spoke about his experience:
“I was diagnosed with a type of blood cancer called myeloma. At that point, I had no idea what myeloma was. And nobody explained to me that it was a type of cancer. I had no idea what treatment was involved with it, and what was likely to happen to me, because nobody sat down to explain it to me. It wasn’t as if I was despondent and not listening to what the doctors were telling me. If anything, it was the opposite. I really wanted someone to sit me down and tell me absolutely everything, but instead it felt like they were always talking at each other using medical language, and I was just a guest in their conversation about me.
“Eventually I had to sit down and look ‘myeloma’ up and see what was going on myself, because nobody sat down and explained it to me. Dr Google is a very scary person to find out your life expectancy from. Luckily for me, my search results were the worst-case scenario, but I didn’t know that when reading every word over and over again. Finding out you have a type of blood cancer is always going to be hard, but having a healthcare professional sit me down and talk about these things would have changed my whole experience.”
Helen Rowntree, Chief Executive of Blood Cancer UK, said:
“Making sure everyone affected knows that their condition is a type of blood cancer would be a big step in the right direction. The more we can increase awareness, the more people will know about the services that are there to help them and we can help unlock that support for the people who need it. As an organisation that has funded research for 60 years, we know that scientific progress and new treatments will be the key to beating blood cancer. But we will be held back without the right support for patients and recognition of blood cancer.”
Findings from Blood Cancer UK’s “Raise the profile, reduce the harm” report can be found on the Blood Cancer UK website on World Blood Cancer Day. The charity is sharing a video from community members including Franko, outlining the reasons why blood cancer needs greater focus.