A CNS is a crucial member of a patient’s care team. They provide expertise in a particular disease type or patient group and offer practical and emotional support for patients. A CNS acts as an important point of communication between all members of a patient’s care team, advocating on behalf of the patient.
The value a CNS holds within the NHS is exceptional. The work that just one full time CNS does is worth around £72,000, while the average salary of a CNS is around £37,400. Additionally, through CNS led clinics and ongoing management of patient’s conditions, around £72,500 is estimated to be saved per nurse by freeing up consultant and GP time.
The value that a CNS has goes beyond monetary value, however. In 2015, the Independent Cancer Taskforce recognised that access to a CNS is the biggest influencer in improving cancer patient experience, and suggested that by 2020 all patients should have access to a named key worker (normally a CNS).
Unfortunately, we found that just 38% out of 2,019 leukaemia patients had access to a CNS in our 2016 patient experience survey. This level of access varied significantly across locations. Patients in England have better access than those in Scotland or Wales, but within England the level of access varies from 30% to 50% in different regions.
Access to a CNS also differs in relation to the type of leukaemia a patient has. Over 46% of patients with an acute (quickly progressing) leukaemia had access to a CNS, compared to just 35% of those with a chronic (slowly progressing) leukaemia.
But what difference does having access to a CNS make for leukaemia patients? Well the answer is quite a significant one. Our report evidences that CNS access has clear benefits at every stage, from diagnosis through to living with or beyond leukaemia.
Nearly all leukaemia patients with a CNS feel involved with decisions about their treatment and care to some extent, whereas around 1 in 10 of patients without a CNS do not feel involved whatsoever. This may be because patients with a CNS are more likely to understand explanations of their diagnosis, reasons for treatment decisions such as being placed on ‘watch and wait’, and more likely to receive advice about finding further information and support.
Perhaps most significantly, patients with a CNS are far more likely to report feeling better or positive after accessing their CNS compared to those who only have access to other support, such as therapy or support groups. Disappointingly, 66% of those without a CNS are also not offered any other means of support, despite the majority wanting it.
Therefore, you can see that poor levels of CNS access across the UK are really significant for patients on their leukaemia journey. At Leukaemia Care, we want to ensure that patients diagnosed with a blood cancer are supported and cared for as best as possible, and ensuring that patients have access to a CNS is significant in achieving this.
Promisingly, we found that the number of haematology/blood cancer CNSs has increased by approximately 19.2% across England between 2015 and 2017. Almost 1 in 4 trusts also have plans for increasing the CNS workforce further. This is good news for improving access, but one of our key recommendations is to ensure that the nursing workforce is continually increasing to ensure that CNS numbers are able to increase in line with the ever-growing number of leukaemia patients.