Analysis

Key workers ‘essential’ for cancer care

The role of the key worker for children with cancer has been much talked about over the years. Back in 2005, the National Institute for Health and Care Excellence recommended the post be used to co-ordinate care in recognition of the complexities involved for children, parents and professionals

The role of the key worker for children with cancer has been much talked about over the years. Back in 2005, the National Institute for Health and Care Excellence recommended the post be used to co-ordinate care in recognition of the complexities involved for children, parents and professionals.

But until now there has been little evidence of the role’s impact. This has changed thanks to a review led by London South Bank University.

The evaluation, which relied on surveys and in-depth interviews, focused on the work of 22 key worker posts in England, Scotland and Wales funded by the charity CLIC Sargent. It found many positive outcomes, including:

  • 70% of parents reporting an improved peace of mind.
  • 56% saying they were less stressed.
  • 87% of doctors, teachers and other nurses saying the role improved care co-ordination.
  • 81% of staff saying the experience of families was improved.

But there are warnings. There was a large variation in workload with the median number of patients hovering between 39 and 51. Some key workers had double these numbers. Where workloads were too high, key workers focused their attention on children at the start of treatment and during the end of life.

Variation in roles

There was also a variation in roles. Some concentrated on certain types of cancer while others covered the full range. Two only worked with families during radiotherapy. The way support was provided was also mixed. Some nurses focused on outreach making regular home visits or giving chemotherapy at home, while others were based in hospitals.

Recruitment areas also varied, although most had been working as children’s oncology outreach nurse specialists. Also, feedback from key workers showed some had doubts about the title, saying it could be confusing and they much preferred ‘specialist nurse’.

The report concluded that local areas should decide what worked best, but it was clear that key workers should be seen as an ‘essential’ part of the service.

'Untangle the knots'

CLIC Sargent nursing lead Jeanette Hawkins, who will discuss the key worker role and findings of the evaluation at a one-day conference in London on December 14, says: ‘Parents need a professional to walk with them and untangle the knots between cancer centre and shared care, hospital and home, treatment and school, illness and normality, professionals and family.’

Lead children’s cancer nurse at Leeds Teaching Hospitals NHS Trust Rachel Hollis agrees: ‘The report provides much needed evidence of the positive ways in which the role has an impact on the experience of the child and the family.’

More information

Children's keyworker service evaluation project

 

 

 

 

 

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