Henry Winter
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Landmark UK survey of blood cancer patients’ needs launched

Henry Winter
Posted by
02 Jul 2014

Leukaemia & Lymphoma Research is undertaking its most comprehensive ever UK survey of the needs of patients with blood cancers and related blood disorders.

It is hoped that the online questionnaire, which opened on 2 July and runs for two months, will attract over 2,000 responses from patients and carers. It will give patients and people affected by blood cancers an opportunity to express their needs and experiences of treatment.

The questionnaire will focus on areas of patient need during every stage of the blood cancer journey, assessing the need in a variety of areas including advice offered at diagnosis, access to a clinical nurse specialist and psychological support provision once treatment has finished.

There is evidence that in some areas there are comparatively greater levels of support needed for patients with blood cancers, which include leukaemias, lymphomas and myeloma. The 2013 National Cancer Patient Experience Survey found that just 58% of patients with haematological cancers completely understood the explanation of what was wrong with them, compared to 73% of cancer patients overall.*

Leukaemia & Lymphoma Research’s survey is part of the latest stage of its ambitious ‘Prioritisation of Patient Need’ project, which is aiming to put patients at the heart of every project that it invests in.

Lauren Dias, Research Manager at Leukaemia & Lymphoma Research, said, “We’ve been listening carefully to blood cancer patients in focus groups across the country, giving us an invaluable understanding of where improvements need to be made in the patient journey. The large-scale information we will gain from this comprehensive survey will help us to build on this insight, clearly identify problem areas where more support is needed.” 

Patients and people affected by blood cancer can complete the survey, which takes approximately 20 minutes, here.



I think this survey and the Prioritising Patient Need project as a whole is an absolutely wonderful idea. Putting patients at the heart of the charity and taking time to find out what they need and how they're feeling will help ensure that the charity provides patients and families with the best possible support. As a blood cancer survivor myself I will certainly be taking part.