Nurse key workers help to untangle complex cancer care for children and young people

Complex cancer care for children and young people can be untangled with the support of specialist key worker nurses, according to CLIC Sargent.

The cancer charity carried out a three-year project to test the impact of using specialist nurses as a central point of contact for families with a child diagnosed with cancer.

Nurse key workers help to untangle complex cancer care for children and young people

The project, organised through the CLIC Sargent nursing programme, funded 22 specialist key worker nurse posts across England, Scotland and Wales between October 2011 and March 2015. It followed a report by the charity More than My Illness, which highlighted the need for better coordination of holistic care for families and incorporated NICE recommendations on improving outcomes for children and young people with cancer.

An independent evaluation of the project found the key worker role can reduce stress for children, young people and their families and facilitate treatment as close to home as possible. The role can also improve communication between clinical staff, social workers and teachers so they can work together better to provide efficient and appropriate care.

An evaluation of CLIC Sargent’s Key Worker project has now been published by  London South Bank University. It found that 69.7% of patients questioned who had a CLIC Sargent Key Worker had an improved peace of mind, with 55.8% feeling less stressed. Through working in partnership with parents the key worker model was felt to “decrease parents’ feelings of isolation and increased their confidence to care for their child.”  

Doctors, teachers, senior nurses, community nurses and other stakeholders also agreed that the key worker model improved the quality of care for patients, with 86.9% reporting the model improved coordination of care, and 81% seeing an improvement in families’ experiences.

Following the positive results, all 22 positions have continued following the end of the project, either completely through NHS funding, or part-funded by CLIC Sargent.

The charity is now keen to work with the NHS, the Department of Health and devolved governments to embed the key worker nurse approach for young cancer patients in the NHS.

Jeanette Hawkins, CLIC Sargent Assistant Director and Nursing Lead, said:
“During my more than 25 years’ experience in children’s cancer nursing, I worked for a period of time as a key worker and began to believe that this model of care had the potential to be a golden thread pulling together all the strings in the complex environment of children’s cancer care.”

“Parents need a professional companion to walk with them and untangle the threads which work their way into knots between cancer centre and shared care, hospital and home, treatment and school, illness and normality, professionals and family.”

“The findings of this report and evaluation demonstrate the substantial difference that a key worker can make to the experience of young cancer patients, their families, and the professionals providing their care.”

The evaluation also found that key workers helped patients and their families navigate their way around the NHS, coordinated care between different healthcare professionals and enabled families to communicate their needs.

Rachel Hollis, Lead Nurse for Children’s Cancer at Leeds Teaching Hospitals NHS Trust, who wrote the foreword to the evaluation, said: “CLIC Sargent is to be commended on building into this project a comprehensive evaluation of the role, with a focus on demonstrating the achievement of clear patient and family-centred outcomes.

“The report provides much needed evidence of the positive ways in which the role impacts on the experience of the child and the family, and the factors which influence the achievement of the outcomes which matter most to them.”

The evaluation took into account the varying needs and resources found in principal treatment centres, where children with cancer are cared for, and concluded that the three pillars of co-ordination, knowledge and relationships have to be strong, in order for the role to be successful.

The CLIC Sargent Key worker project was made possible by £2million in funding via Tesco, which named CLIC Sargent as its Charity of the Year in 2010. This funded the 22 roles across England and Wales for three years, as well as project costs for the duration and a learning and development package for the key workers included.

NHS Supplies, through the National Cancer Action Team, funded the independent evaluation for England, while CLIC Sargent funded the evaluation being extended to Scotland and Wales.


For more information, an interview or images please contact Nick Edmondson on 020 8752 2856 or email Outside office hours please call 08448 481189.

The individual evaluation of the key worker project and the More Than My Illness reports are available on the CLIC Sargent website.

The NICE (2005) ‘Improving outcomes guidance for children and young people with cancer’ can be read online on the NICE website.

CLIC Sargent funds paediatric oncology outreach nurse specialists, who have been developing their model of care alongside the nurses who took part in the key worker project. They are also embracing the key worker model of care either as the model for their own role or by working in partnership with the child’s key worker.