Nearly 5,000 blood cancer patients each year do not get the specialist nursing support that many other cancer patients receive as a matter of course, according to a charity.
The charity Bloodwise said that for the two most common types of leukaemia, almost one in five patients had no clinical nurse specialist to support them.
“They can be a shoulder to cry on, someone to face difficult conversations with”
This was significantly lower than in other areas such as breast, lung, and gynaecological cancer, where more than nine out of 10 patients have access to a CNS, it said in a report published to mark World Cancer Day.
The report – titled Clinical nurse specialists: the case for support in blood cancer – highlighted that having access to a named CNS was identified as the number one indicator of a positive patient experience in the 2014 National Cancer Patients’ Experience Survey.
It also cited a 2015 report by the Independent Cancer Taskforce, which identified the importance of CNSs.
The four-page report quoted Kirsty Crozier, a senior advanced nurse practitioner for myeloid disorders in Oxford.
“I think the CNS role is pivotal to good patient care,” she said. “A CNS can help to guide patients and relatives on where to get help, information, peer support, and psychological support for what can be an emotional roller coaster.
“They can be a shoulder to cry on, someone to face difficult conversations with, and someone to help whenever the need arises, be it at the start of treatment or a number of years down the line,” said Ms Crozier.
“Patients tell us that having a clinical nurse specialist improves their cancer journey enormously”
Commenting on the report, Bloodwise director of patient experience Diana Jupp said: “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,” she said. “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,” she added.
Bloodwise – formally known as Leukaemia & Lymphoma Research – said it was urging the government and the NHS to undertake research to assess the “true picture of CNS provision” and to improve access so that all blood cancer patients had a named CNS.
It also called for the NHS and the royal colleges to work together to increase understanding of how the needs of blood cancer patients differed to other cancer patients, and to raise patient awareness of the specialist nursing provision that was currently available.
Meanwhile, to help bridge the current gap in provision, Bloodwise has launched a telephone and email support line for anyone affected by blood cancer.
|Patient access to a CNS by cancer type in 2014|
|Cancer type||CNS access|
|Blood cancer average||87%|
|Acute myeloid leukaemia||81%|
|Chronic myeloid leukaemia||81%|
|Other blood cancers||77%|