Living with Leukaemia

Living with Leukaemia is our annual patient survey that aims to reveal the experience of leukaemia patients from diagnosis through to treatment and living with or beyond blood cancer.

There are 26 new cases of leukaemia diagnosed in the UK every day, equating to approximately 9,500 new cases of leukaemia each year.

Leukaemia affects people of all ages and with both quickly progressing (acute) and incurable, chronic leukaemia types, the experience of patients can differ hugely and there are a wide range of issues that patients face. From the emotional impact of a diagnosis, to physical effects of the blood cancer or treatment, or the wider practical implications on employment or finances.

In 2016, Leukaemia Care partnered with Quality Health to undertake our first survey of individuals who had been diagnosed with a blood cancer. The survey received 2019 responses from leukaemia patients and was designed to improve understanding of the issues faced by patients and inform the work that Leukaemia Care are doing to support patients.

Between September and December 2017, the survey was run again, receiving over 2,300 responses from leukaemia patients. The second patient survey aimed to allow annual comparison between the results, to see if any issues are improving or worsening, and provided greater understanding on certain issues, by asking new questions.

The findings and subsequent recommendations for improving patient care from both the 2016 and 2017 surveys are now available below.

Thank you to all the patients who have shared their experience in the surveys. You are helping to inform the work of Leukaemia Care and improve the experience of leukaemia patients in the future.

We would also like to thank ACLT, Anthony Nolan, Basil Skyers Myeloma Foundation, Bloodwise, CLIC Sargent, CLL Support Association, Lymphoma Action, MDS UK, MPN Voice, Myeloma UK, Teenage Cancer Trust and WMUK for their help in sharing the survey.

Living with Leukaemia – 2017 patient survey (NEW!)

Our latest report reveals the experience of over 2,300 leukaemia patients and makes 11 recommendations for improvements.

The first three recommendations cover more generally the improvements required for all leukaemia patients in the areas of early diagnosis, financial support and emotional/psychological needs.

The additional recommendations are specific to the four main types of leukaemia. For acute leukaemia types, acute lymphoblastic and acute myeloid leukaemia, the recommendations are based around improving awareness to ensure patients are diagnosed early, and improving the support and information offered to patients around their employment and financial rights. The recommendations for chronic lymphocytic leukaemia (CLL) focus on improving support and information provision for patients on ‘watch and wait’, due to the significant emotional implications of being placed on the scheme.

As well as improving clinical nurse specialist (CNS, often known as Macmillan nurse) provision. CNS provision is also one of the recommended improvements identified for chronic myeloid leukaemia (CML) patients, in addition to ensuring that CML patients are more involved in their treatment decisions and are offered more information about the different treatment options.

You can download the executive summary here.

You can download the full report here.

Living with Leukaemia – 2016 patient survey

The first living with leukaemia report highlights the experience of 2019 leukaemia patients and recommendations for improvements were made in the following areas:

  1. Awareness of leukaemia as an aid to early diagnosis
  2. Information and support for different leukaemia types
  3. Understanding a leukaemia diagnosis
  4. Watch and wait
  5. Clinical trials
  6. Living with leukaemia
  7. Further support

You can download the executive summary here. You can download the full report here.