The latest news from JEANETTE HAWKINS, member of the Paediatric Oncology Nurses Forum (PONF) Steering Group.

UPDATE: Guidelines for shared care for children with cancer

In August 2005 the National Institute for Health and Clinical Excellence (NICE) produced a guidance document, Improving outcomes in children and young people with cancer (part of a series of Improving outcomes guidance for cancer patients). Since then the National Cancer Action Team has been formulating “quality measures” to enable implementation to be monitored by commissioners and cancer networks. These are expected in 2008.

This work has been welcomed by the oncology community as it will pave the way for CYP services to be peer-reviewed against nationally agreed quality measures.

Part of the NICE guidance considered the delivery of shared care for children and young people with cancer. Shared care is a pattern of working that enables patients to receive part of their care closer to home in their local district general hospital, but under the overall supervision of a principal treatment centre for children’s cancers.

This model had been developed informally in some parts of England, but it was not developed consistently around the country and had largely been set up via goodwill arrangements between willing clinicians. Although the quality of care was usually very good in shared care units, the services were often fragile because they had not all been adequately resourced in terms of infrastructure, education and training, commissioning arrangements and service level agreements.

Monitoring quality

To help formulate the quality measures for shared care, the Cancer Action Team set up a small working party of clinicians, nurses, cancer managers and commissioners. RCN PONF members played an important part in this working party, producing detailed recommendations on national levels of shared care and the suggested infrastructure, training and funding pathways needed to deliver it.

The levels of shared care have now been signed off and distributed to commissioners and cancer networks to enable further development and formal identification of shared care units to begin. The central premise of shared care as described in the NICE guidance is: “Safe care as locally as possible, not local care as safely as possible.”

It is important to note that the work so far only covers children and young people nursed in a paediatric setting (0–16 years approximately). A further working party is considering whether the shared care model is appropriate and possible for young people (16–24 years) cared for in an adult setting.

Three levels of shared care

Your local cancer network has greater detail of what is expected at each level, but here is a summary. Having levels allows units to select the option which is achievable within the service provided and also restricts care that is outside a unit’s means to deliver safely. The quality and level of expertise is the same at all levels, but the higher levels of shared care will have a wider range of services available. (POSCU = paediatric oncology shared care unit)

POSCU: Level 1

  • Inpatient supportive care: Examples – febrile neutropenia management, non- neutropenic infections, enteral feeding support, rehabilitation support, local palliative care support.
  • Outpatient supportive care: Examples – central line flushes, re-pass NG tubes, blood product support.
  • Outpatient clinic: May include interim assessments, short and long term follow-up, dispensing oral chemotherapy and dose adjustment within agreed guidelines.
  • Bolus IV chemotherapy: Examples – vinca alkaloids, cytarabine.
  • Treatment management – Multidisciplinary team (MDT) meetings at least monthly
  • Exclusions – Day case infusion chemotherapy, inpatient chemotherapy and all exclusions in Level 3

Opting out of any of these criteria may be locally agreed between PTC, POSCU and commissioners in exceptional circumstances. The decision may be based on adequacy of experienced medical cover out-of-hours.

POSCU: Level 2

  • All Level 1 components plus day case infusion chemotherapy.
  • Treatment management – MDT meetings at least fortnightly.
  • Exclusions – Inpatient chemotherapy and all exclusions in Level 3. There is no ability to opt out of components in Level 2.

POSCU: Level 3

  • All Level 2 components plus inpatient 24 hour paediatric chemotherapy.
  • Treatment management – Weekly MDT meetings.

There is no ability to opt out of components in Level 3.

  • “Opt-in” options – Provision of an intrathecal chemotherapy administration service in full compliance with national (HSC 2003-010) and local guidance. Only provided with paediatric anaesthetic support and agreement of PTC.

Specific exclusions to Level 3 care – that is, care that can only be administered in a PTC:

A long list in the recommendations of activities can only be delivered by a principal treatment centre, including diagnosis, bone marrow transplant, phase one and two clinical trials. Hospitals should consult the main document.

 

Once the designation of principal treatment centres and paediatric oncology shared care units through a commissioning process is complete, it is expected that all children with suspected or diagnosed cancer will be referred and treated in one of these hospitals.

However, all hospitals that accept children in their emergency departments would be expected to have sufficient knowledge and skill to stabilise a sick child using the principles taught in basic and advanced paediatric life support courses. The patient should then be transferred to a designated centre at the earliest safe opportunity.