How we’re planning to make people more aware of blood cancer

As part of our new strategy, we said we wanted to raise the profile of blood cancer as a health condition. Why? Because people with blood cancer are being held back by the fact that awareness of blood cancer is much lower than for other common types of cancer (breast, bowel, lung and prostate).

For example:

• Because people with blood cancer often aren’t aware their condition is a type of cancer, they risk missing out on important entitlements like employment protection, free prescriptions and disability benefits, and are less likely to access support from charities. We believe everyone with blood cancer has a right to know they have a type of cancer, though it’s important this news is delivered sensitively.
• People with blood cancer are less likely to leave their diagnosis understanding what is wrong with them than people with other types of cancer. The fact they’re often not told their condition is a type of blood cancer is one of the reasons for this.
• The fact that blood cancer is seen as a group of rarer conditions (leukaemia, lymphoma, myeloma, and others) rather than a type of cancer in its own right means there is less awareness of symptoms among both the public and GPs, and less political focus on improving healthcare.

But while our new strategy identifies lack of awareness of blood cancer as a problem we need to fix, it doesn’t set out how we’re going to do it.

So we asked our community for their views and then a group of people – members of Blood Cancer UK staff and people with blood cancer – used this community feedback as a starting point to working this out.

It was already obvious that if we want to raise the profile of blood cancer, this needs to be a big part of our communications over the next few years. So you should notice that more of our communications – particularly the communications aimed at people who we’re not already in contact with – focuses on this. (Our recent awareness video by sporting celebrities is an early example of this.)

But raising awareness of blood cancer is about much more than just the communications we put out. There are lots of other barriers to it being seen as a common cancer in its own right, from the way healthcare professionals and other charities talk about blood cancer, to the way the Government and the NHS report cancer data.

We don’t have the resources to focus on all of these. So as a group, we looked at the different options, for each one analysing data and debating how achievable it would be to bring about change. We decided on three priorities that we think focusing on will give us the best chance of success. These are:

The diagnosis is a crucial point in someone’s blood cancer journey, and yet only a quarter of people are told at diagnosis that they have a type of blood cancer.

We also know that people with blood cancer are less likely to leave their diagnosis feeling they fully understand what is wrong with them compared to people with other common cancers. People hearing “a type of blood cancer” – a descriptive term that gives a sense of what is going wrong in the body – should help them understand their diagnosis better than just terms like “leukaemia”, “lymphoma” and “myeloma”, which are derived from Latin and Greek.

Given that 40,000 people are diagnosed every year, introducing the term “blood cancer” at this point could also be a catalyst for raising the profile of the disease.

Over the next few years, we will be working with the health professionals who are involved in diagnosing people – specialist doctors, GPs and cancer nurse specialists - to get to the point where everyone leaves their diagnosis understanding that they have a type of blood cancer.

There are lots of charities and NHS organisations that produce excellent health information, both online and in print, about the various types of blood cancer.

But while much of this health information already uses the term blood cancer, lots of it doesn’t.

This seems an opportunity to make the case to these organisations that where they have information on a type of blood cancer, it’s important they mention it’s blood cancer.

If our history has shown anything over the last 60 years, it’s the ability of the blood cancer community to change the world for people affected by blood cancer. We’ve shown time and again that we can achieve extraordinary things together, so it stands to reason that our community needs to be a key part of raising awareness of blood cancer.

This means that rather than just communicating about it through things like getting articles in newspapers, putting messages out on social media and doing advertising, a key way we’ll spread the message will be by giving the blood cancer community the tools to be able to this themselves.

We now know the areas we’re going to be focusing on, but we don’t yet have a plan for what we’re going to do in each area. So over the next couple of months, we’ll be talking to people affected by blood cancer and healthcare professionals, so that we understand as well as possible how we can make a difference in each of these areas.

We don’t yet have a firm date for when the campaign will launch, but as we firm up our plans, we’ll keep you posted.

But while there’s lots we don’t know about our campaign on this, there are two things we are already sure of:

• Our work on this will be shaped by people affected by blood cancer. We’ve started in the right way by including people affected by blood cancer in the group that has set the direction for this work, and we need to continue this.
• The lack of awareness of blood cancer is a big, complex problem, and so our approach to addressing it won’t be perfect straight away. This means it’s important that we constantly learn from what we do, so we can do more of the things that work, and less of the things that don’t.

By working in this way, over the five years of our strategy we want to see an increase in awareness that blood cancer is one of the UK’s five most common cancer, and an increase in awareness that individual conditions such as lymphoma and myeloma are types of it.

We know bringing about this change will be a challenge. But given the strong evidence that people with blood cancer have a worse experience because blood cancer is not yet seen as a common cancer in its own right, it’s a challenge that we’re committed to meeting.