Patient Need: Key findings
The issues patients face traverse the different stages of the patient experience: from initial awareness to diagnosis, right through to post-treatment and, for some, end of life care.
If we’re to truly beat blood cancers, we need to understand all of these 24 issues from the patient perspective, and tackle them collaboratively across the blood cancer community.
We’re raring to go and start finding solutions to the 24 needs we’ve identified. But we know we can’t do it all at once, and we know we can’t do it alone. But six of them were so urgent that we knew we needed to act now.
Priority 1: Biggest killers
Understanding what conditions have the biggest impact on lives lost is critical. The evidence has identified that just five conditions account for nearly 70% of all lives lost within five years from diagnosis: myeloma; diffuse large B-cell lymphoma (DLBCL); acute myeloid leukaemia (AML); myelodsyplastic syndromes (MDS); chronic lymphocytic leukaemia (CLL).
Priority 2: Pre-malignant conditions
The impact of these five conditions on lives lost maybe even larger if we include pre-malignant conditions.
Understanding and treatment of these conditions in their own right could help with successful management and may even help prevent pre-malignant conditions progressing.
Priority 3: Early deaths
Analysing survival rates has shown us that for specific conditions, where lives are lost at five years, 50% of deaths occur within the first three months after diagnosis. After this point, relative survival remains stable for many patients.
Research can help us to identify which patients are at a higher risk, what’s happening to them and how we can help them through these early months after diagnosis.
Priority 4: Lack of awareness around blood cancers
Our research has shown there’s low awareness of blood cancer and its symptoms amongst the general public – many patients being diagnosed with blood cancer have no pre-awareness or understanding of the disease they face.
Many patients also feel this lack of awareness exists within some primary care and secondary care settings, impacting the effectiveness of diagnosis and subsequent experience.
Priority 5: Blood cancers are different
Patients and carers told us they feel blood cancers differ to other cancers in terms of awareness, experience, care and available provision.
We need to understand this sense of difference further, whilst increasing awareness of blood cancer and of organisations that can help.
The services are out there, but blood cancer patients don’t know about them or see them as relevant. Many blood cancer patients are seen in a haematology unit, whereas other cancer patients will go to oncology.
There’s also a perception that GPs have a low awareness and understanding of blood cancer.
Priority 6: Perceived lack of provision and need for signposting
Our research has highlighted that many blood cancer patients aren’t accessing the support and resources they need.
Our evidence suggests this is because patients aren’t clear about what’s available to them as blood cancer patients, who they can contact to get guidance and signposting to services, and what organisations are out there to help them.
Key to this issue is a low awareness of blood cancer charities that are relevant to patients (including ourselves), affecting their ability to find support.
Read our detailed Patient Need report for more detail on the key issues faced by patients.