Campaigning

Updated 05 Oct 2017

Bloodwise campaigns to improve the lives of everyone affected by blood cancer. 

Bloodwise campaigns to improve the lives of everyone affected by blood cancer. 

We use an evidenced based approach to find out what care and support patients need, how those services are currently being provided, and what solutions are required to improve them.  We believe in not just identifying problems with patient care, but working to engage and influence decision makers to make real change happen.

Our approach

We use an evidenced based approach to find out what care and support patients need, how those services are currently being provided, and what solutions are required to improve them.  We believe in not just identifying problems with patient care, but working to engage and influence decision makers to make real change happen.

Our approach has contributed to many significant developments which have been achieved by working with others; and by having the courage to make bold decisions where they were needed.

Patient Need

We need to understand what patients need if we’re to invest the money our supporters raise wisely and for it to have maximum benefit. The first phase of our research into patient need comprised of four areas: a pilot study; quantitative research; qualitative research; and data analysis and literature review.

We spoke to 2,000 people, many of whom were blood cancer patients. We also spoke to their families and carers, their clinicians, policy makers and researchers – to find out about their experiences of blood cancer.

  • 19 focus groups in 14 cities across the UK.
  • 2 facilitated supporter groups.
  • 21 medical professionals consulted.
  • 7 in-depth one-to-one interviews with patients.
  • And 1 landmark national online survey, which was answered by 1,725 people personally affected by cancer, including 1,029 patients.

We complemented this work by analysing the ‘National Cancer Patient Experience Survey’ (NCPES) data. We also commissioned an online awareness survey through YouGov: our ‘Awareness and Terminology Study’ surveyed over 2,000 individuals.

Why we conduct Patient Need research

We need to understand what patients need if we’re to invest the money our supporters raise wisely and for it to have maximum benefit.

We need to know the answers to questions such as: How long does a blood cancer diagnosis take? How many times do people visit their GP before they’re diagnosed? What treatment do they have, with what outcome? Which blood cancers have the lowest survival rates and affect the most people?

We want to take that information and consider it alongside everything that people affected by blood cancer have told us – so we can keep making wise decisions about what research we should fund, what policies we should lobby hardest for and what support we should provide.

We need to know the answers to questions such as: How long does a blood cancer diagnosis take? How many times do people visit their GP before they’re diagnosed? What treatment do they have, with what outcome? Which blood cancers have the lowest survival rates and affect the most people?

We want to take that information and consider it alongside everything that people affected by blood cancer have told us – so we can keep making wise decisions about what research we should fund, what policies we should lobby hardest for and what support we should provide.

Get involved in our work – tell us what you think patients need

We want to work collaboratively with other organisations and individuals, both patients and medical experts, to ensure that we're always finding our more about what patients really need. There are lots of ways that patients, their family and friends, health professionals and other experts can get involved, from focus groups to online surveys. If you’re keen to get involved, get in touch or call +44 (0)207 504 2282.

Improving the Cancer Recovery Package for blood cancer patients

The Cancer Recovery Package is the care package which cancer patients access once treatment has ended.  It is a series of interventions which are designed to deliver effective follow-up care post-treatment.   It is designed to provide a more systematic and proactive approach to cancer care and rehabilitation to aid recovery.

The Cancer Taskforce Strategy, launched in 2015, sets out a series of targets across cancer care to be delivered over the following five years.  One of the recommendations is for all patients to be able to access the Recovery Package by 2020.

Whilst we support this aim, we know that the standard Recovery Package does not always meet the complex and specific needs of blood cancer patients.  The differences between blood cancer and solid tumour cancer patient pathways means the standard Recovery Package is not adequate for this population.

Bloodwise is working together with Janssen on a long-term project to look further into how blood cancer patients can be better supported.  Over the course of the three year project, we will seek to understand how the standard Recovery Package currently works for blood cancer patients, what amendments would help to improve their experience of this package, and how these changes can actioned across the country.

As the project progresses, we will provide updates here on our findings and how we will respond to what we’ve learnt.

Working in Parliament

Bloodwise works with a number of Parliamentarians to help us raise awareness of blood cancer, and the issues faced by patients, within the Houses of Parliament.  MPs and Peers help us by holding debates and asking questions, by hosting and attending events in Parliament, and by supporting our campaigns. 

We regularly update our supporters in Parliament about the work of Bloodwise via our latest Parliamentary briefing.

Get involved

We are always keen to involve patients, supporters and researchers in our campaigning activity.  If you’d like to find out more about what we do and how you can get involved, please contact us