Thousands of blood cancer patients are missing out on essential care every year according to a report released today (Thurs 4 Feb) by blood cancer charity Bloodwise.
The findings, published to mark World Cancer Day, show that every year nearly 5,000 blood cancer patients in the UK do not get the specialist nursing support which many other cancer patients receive as a matter of course.
The report, Clinical nurse specialists: the case for support in blood cancer, highlights how for two common types of leukaemia, almost 1 in 5 patients have no clinical nurse specialist (CNS) to support them. This is significantly lower than in other areas such as breast, lung, and gynaecological cancer, where more than 9 out of 10 patients access such specialist care.
Consequently, Bloodwise is urging NHS commissioners and the government to improve access to clinical nurse specialists so that all blood cancer patients have a named contact.
Being able to contact a dedicated nurse specialist can transform a cancer patient's experience. As well as helping them to navigate the complicated NHS system, nurse specialists are able to provide life-changing emotional and psychological support.
Having one key person to liaise with is especially paramount for blood cancer patients, who often describe feeling isolated and "different" to solid tumour cancer patients.
Katie Ruane, who has leukaemia, says: "The difference it has made knowing my clinical nurse specialist is there cannot be put into words. I didn't think that being able to send a text or email at any time would make a big difference, but it really does. Getting a smile and a hello from her in clinic, knowing she cares, is a truly wonderful thing."
Diana Jupp, director of patient experience at Bloodwise, adds: "Patients tell us that having a clinical nurse specialist improves their cancer journey enormously - it is the single most important factor in a positive experience of care. However, we know that access to clinical nurse specialists is highly inconsistent and that patients in some parts of the UK have no access at all. With increasing numbers of people living with and beyond blood cancer, this lack of provision has to change.
"We want to work alongside the NHS, health professionals and all organisations in the blood cancer sector to ensure patients get the support they need."
To help bridge the current gap in provision, Bloodwise has launched a telephone and email support line for anyone affected by blood cancer - 0808 2080 888 or email firstname.lastname@example.org..
In July 2015 the Independent Cancer Taskforce identified the importance of clinical nurse specialists and highlighted the need for the workforce to keep pace with the growing number of people affected by cancer.
Bloodwise is urging the government and NHS to:
- Undertake research to assess the true picture of CNS provision
- Improve access so that all blood cancer patients have a named CNS
- Work with the Royal Colleges and the NHS to increase understanding of how the needs of blood cancer patients differ to other cancer patients
- Work with other organisations to raise patient awareness of specialist nursing provision that is available