The Atlas of Shared Learning

Case study

High quality care for survivors of childhood cancer

Leading change

The Macmillan Clinical Nurse Specialist for Nottingham University NHS Foundation Trust (NUH) worked in collaboration with a multidisciplinary team (MDT) and commissioning colleagues to establish a new long-term follow-up pathway and service for survivors of childhood cancer.

Where to look

The Clinical Nurse Specialist identified unwarranted variation in the provision of care pathways for children and young people and those within transitional services from child to adult. Unlike most of the other principle treatment centres in the Children’s Cancer and Leukaemia Group (CCLG) there was no provision available for adult survivors of childhood cancer at NUH. Patients over 18 years old were transferred to numerous adult services. Late effects surveillance was either absent or over used.

The Clinical Nurse Specialist along with the commissioning and MDT colleagues saw an opportunity to improve service provision by establishing a new comprehensive service for this patient group so that the unwarranted variation could be significantly reduced and patients have a better experience of their care.

What to change

The Clinical Nurse Specialist worked closely with her MDT colleagues to redesign the service, based on national evidenced-best practice such as examples identified from Liverpool, Birmingham, Sheffield and the National Cancer Survivorship Initiative (NCSI). It was key to ensure that the service also had a local population focus.

A business case was developed with colleagues from the MDT. The business case focused on a ‘one stop’ multi-professional clinic where patients would have access to seamless care with direct access to professionals they needed in one space. This proposal also ensured that transitional care from children’s to adults’ services was included in the provision. The service’s aims were primarily to empower and give choice to patients, provide comprehensive, coordinated care closer to the patient’s home with easy access to support and advice tailored to the individual patient. The service has three key focused areas: endocrine, neurosurgery and clinical oncology.

How to change

The nurse-led clinics have been established to run monthly with an initial and follow up clinic session offered with MDT professionals. Initial assessments included late effects reviews, healthy lifestyle and physical activity assessments and holistic needs assessments with development of a ‘Recovery Care Plan’ to support self-management and transition onwards to primary care services or adult long-term follow-up services. The team providing the service are oncologists, specialist doctors, Macmillan Citizen Advice, psycho-oncologist and endocrinologists, in addition to the core nursing team.

The specific aims of the service are to provide:

  • A team of professionals who all have a clear understanding of childhood cancer
  • Surveillance of late effects resulting in earlier detection and intervention
  • A consistent team – key worker & clinicians
  • A comprehensive condensed service that meant patients weren’t having to attend several appointments for different speciality reviews and service input
  • On-going psychological support – early detection & intervention
  • Tailored follow-up designed for patients’ individual needs – linking regional services.

It was also anticipated that the service would reduce missed appointments and “lost to follow-up” rates as patients engaged in their follow-up needs closer to home.

In practical terms the service also provides easy access to specialist tests such as MRI Scans, Ophthalmologic testing, Cardiology / Respiratory surveillance and blood test monitoring. To support the service further, the Clinical Nurse Specialist, alongside the MDT, developed regional pathways for Epilepsy CNS, learning disability teams, rehabilitation teams & Macmillan Physical Activity Practitioners. The service and pathway were overseen by the Clinical Nurse Specialist solely responsible for the long-term follow-up of survivors of childhood cancer, and a paediatric oncologist.

Adding value

Better outcomes – MDT outcomes from these clinics were used as a summary for both patients and GPs to showcase the impact of the service, identifying effective patient care, patient outcomes and transitional care planning for young people.

Better experience – The service has been evaluaed highly. Over the 2 trial clinics, all patients and carers were asked to provide feedback:

  • At both clinics, patients overwhelmingly felt they had sufficient time at each consultation to discuss and address their health needs. Identifying that their physical, emotional, practical, psychological and spiritual needs were taken into consideration.
  • 80% of patients had received an end-of-treatment summary
  • The feedback from both professionals and patients was extremely positive with 100% highlighting that this service would be preferable rather than attending multiple clinics.

Better use of resources – To date there has been an overall saving of £15,000 which is extremely positive. In addition to these savings, there are also further resource benefits in the time spent within clinics by patients, their families and carers and the time taken in transporting patients to the clinics, which have been saved but not included in figures to date.

Challenges and lessons learnt for implementation

Key lessons learnt are:

  • Proposal must be patient centred and not professional – cost effective and using NHS resources well.
  • Psychology needs of children and young people must be included and embedded into the clinical setting to ensure appropriate support is available for the patients using the service
  • An effective MDT is essential for success. Professionals were keen to be involved.
  • Networks are extremely important in sharing lessons so these must be maintained.
  • Writing a business case helped show financial savings even when the team thought there wouldn’t be any so it’s worth completing for each proposed new service or service redesign.
  • Patients are key to developing the service and using patient stories when pulling together the business case really helped.
  • Meet clinicians face-to-face before the service starts to ensure they are supported and understand the service and its aims. This was vital to staff being on-board with the change.

Due to the success of the clinics they have been recommissioned from April 2017 onwards and a 2-year audit is planned by the team to gather data to further evidence the impact of the service and to make further improvements.

The Trust’s nurse-led clinics for adults are now being advertised to local GPs so referrals can be taken. An advice leaflet for GPs will be shared across the networks so they are supported to manage these patients better and a review of whether a community location would support growth of the service is also underway.

Find out more

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