Thousands of blood cancer patients denied essential care every year in the UK

The findings show almost 1 in 5 leukaemia patients have no clinical nurse specialist (CNS) to support them. This means 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.

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.

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. That specialist support for blood cancer patients is vital here was also highlighted at a recent joint Bloodwise and Anthony Nolan roundtable discussion in parliament last month.

Katie Ruane, chronic myeloid leukaemia patient and Bloodwise patient ambassador, sums up the experience: “I didn’t know what a clinical nurse specialist was for years. I was diagnosed with a chronic leukaemia and learnt how to navigate the NHS as things happened to me. I think it was around six years after my diagnosis that I was given the contact details for my clinical nurse specialist. The difference it has made knowing she was there during difficult times when changing chemotherapy and consultants cannot be put into words. Before I knew about her I didn’t think that being able to send a text or email at any time would make a difference. But it really does. Getting a smile and a hello from her in clinic, knowing she cares is a truly wonderful thing.”

The Independent Cancer Taskforce’s report identified the need for the cancer nursing workforce to keep pace with the growing number of people with cancer. It is essential that the implementation of the cancer strategy prioritises to increase the number of CNS training positions, and ensure equity of patient access to a CNS or other key worker from diagnosis onwards.

Diana Jupp, director of patient experience at Bloodwise, says: “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 simply 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.”

Our call

Consequently, Bloodwise is urging the government and NHS to:

• Carry out a comprehensive piece of work 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

To help bridge the current gap in provision, Bloodwise has also recently launched a telephone and email support line for anyone affected by blood cancer.

Read the report in full here.