Referral
Children are often seen in both primary (GP) and secondary care (local hospital) setting prior to presentation. However in the UK and Ireland, there is a network of tertiary specialist centres, known as Principal Treatment Centres, for diagnosing and treating cancer in children and young people (CYP). All children and young people must be referred here as soon as cancer is suspected, as per national NHS guidance.
These 19 regional centres are responsible for coordinating the care and management of children and young people diagnosed with cancer in their region. Some regional centres have a larger catchment area than others, but the children will be referred to their nearest regional centre if they have a suspected or a definite diagnosis of cancer. In some regions PTCs may share care with units in local hospitals known as Paediatric Oncology Shared Care Units (POSCU). Shared care is managed through a large multidisciplinary team (MDT) coordinated by the PTC.
Every CYP diagnosed with cancer will have a Key Worker who will be their consistent point of contact throughout treatment. Often the Key worker is the Paediatric Oncology Outreach Nurse Specialist (POONS) or a clinical nurse specialist (CNS) in the type of malignancy the CYP has, for example Leukaemia CNS.
Children’s Cancer and Leukaemia Group
The regional centres are linked through CCLG: The Children & Young People's Cancer Association. CCLG is a professional association for those involved in the treatment and care of children with cancer. All of the key staff within PTCs and POSCUs are CCLG members, creating a national network of expertise in childhood cancer. CCLG was set up in 1977 with the aim of improving the management of children with cancer and advancing the knowledge and study of childhood cancers. CCLG is also a funder of childhood cancer research, and a leading producer of patient/parent information about childhood cancer.
Examples of organisational excellence
- An established referral pattern
- A specialist multidisciplinary approach at the CCLG centres
- An effective medical & nursing national network/group.
International
Similarly there is a global organisation known as The International Society of Paediatric Oncology (SIOP), which has brought together doctors and nurses to develop better care for children and young people with cancer. For clinical trials for the rarer childhood cancers there is collaboration with other countries and the trials are run internationally through SIOP.
Quality initiatives and peer review
National Cancer Peer Review (NCPR) is a national quality assurance programme for NHS cancer services. It was commissioned by NHS England. The programme involves both self-assessment by cancer service teams and external reviews of teams conducted by professional peers, against nationally agreed "quality measures". Peer reviews are conducted through a national programme. The measures used to review children’s cancers were published in 2014 and can be found in the NHS Manual for cancer services: Children’s Cancer measures version 1.1. www.qst.england.nhs.uk
Further resources
The International Society for Paediatric Oncology