This is the first, and currently only, peripatetic service in the UK supporting teenagers and young adults (aged 13-24) with cancer. It provides age specific care and the access to peer group support that is so important, ensuring every patient has a choice in where he or she is treated, at one of seven designated centres in the region providing care as close to home as possible.
Charitable support has enhanced quality in the regional Principal Treatment Centre (PTC) and a large regional Designated Centre and the service has developed an expert team in the care of young people, alongside the disease-specific expertise to treat their illness.
The percentage of referrals increases each year, reflecting the value our peers recognise that we add. The PTC is a leading centre in recruitment to clinical trials, with its own active research programme, and hosts many visits from others wishing to replicate what the team has achieved.
In the early 1990s in-patient facilities for young people with cancer were either in children’s or adult wards; there were no age-appropriate beds, and a lack of professionals who understood their needs. These patients lacked continuing education or employment, peer group support or the opportunity to evolve independently. They were treated via protocols that were neither age nor biology specific, were poorly served by a lack of appropriate clinical trials and had no ‘voice or choice’ in their care.
These teenagers and young adults (TYAs) are learning to fly the nest while their parents must come to terms with their increasing independence but illness means that families may be suddenly thrown together again. This group demonstrates poor compliance with treatment and increased risk-taking behaviour, leading to poorer outcomes. TYAs may have a prolonged interval to diagnosis and subsequent treatment due to either patient or professional delay but have little experience of life and may fall through gaps in care, so need help to navigate services.
In 2005, the National Institute for Health and Care Excellence (NICE) produced Improving Outcomes Guidance for Children and Young People with Cancer which says that those under 18 years must be treated in the PTC, while those who are older, where possible, may be treated in hospital.
This TYA Service has gone beyond the NICE requirements to provide tailor-made care for each young person, wherever they are treated. This was achieved by working with all designated centres in the region, helping them develop, and then work closely with, the only TYA-specific unit, at a designated centre in Hull.
The service needed to increase the quality of survival, improve the quality of data collected, enhance the patient experience by listening to what they wanted, develop the expertise of professionals, ensuring collaborative, cross team working and encourage those professionals with an interest in the field by supporting their projects and acting on results.
To achieve these goals the team had to identify gaps in care, champion the voices of our patients, increase the percentage of referrals into an evolving diagnostic, therapeutic and supportive multi-disciplinary team (MTD) and exceed the requirements of NHS policy to ensure quality of care. In addition aims included the provision of age appropriate care for both in-patients and out-patients, to give each young person, where possible, an unbiased choice of their place of care, to increase survival rates, improve the information given to young people and their families, and finally to undergo a successful NHS peer review process.
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