Summary

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.

Challenge

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.

Objectives

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.

Solution

This MTD addresses the needs of each young person and has worked imaginatively to obtain funding for itself so that it is cost-neutral. The team works across two sites in Leeds and seven designated centres, with every site-specific cancer team treating TYAs. 

Every patient has a key worker and at five years they transition to a long term follow up (LTFU) service in Leeds. A pathway co-ordinator ensures real time data is collected and disseminated; keeps clinical records and ensures cancer registration is accurate. Our data has been used in many academic papers and NHS data quality reports. 

The views of the TYAs are integrated into services and they are represented on our developmental steering group. Several patient satisfaction surveys have been acted upon. 

The service works with all teams in the region, providing advice and education to help them develop their own local services, via educational events, and have mapped the gaps between adult and paediatric community services. Practices are adapted where needed for specific groups, such as ethnic minorities.

A bespoke unit for 13-24 year-olds has been developed and a professional is provided at every consultation where a young person is to receive a cancer diagnosis. The MTD helps to recruit to clinical trials and has created a bespoke package of information for patients.

Results

Feedback from young people and their families and peers is consistently excellent. Referral information and demographics have helped plan where services are needed, such as supporting the development of a unit in Hull. The team is implementing the recommendations from a two-year evaluation through a Knowledge Transfer Skills Partnership with Coventry University and the Teenage Cancer Trust. It is also developing a research project to look at the factors that affect young men with cancer (who are known to have poorer survival rates).

A specialised neuro-oncology TYA clinic has been developed to increase recruitment into clinical trials and the use of chemotherapy. In 2010-2011, 54 per cent TYAs in the region were referred to us; a year later it was 75 per cent. A TYA out-patient area has been developed at two hospitals and there is a unique Drop in Zone.

TYAs are guided to internet sites that are safe and reliable and are developing the first App where patients can access and store their own information. The team is a founding unit of www.jimmyteens.tv – an internationally known website for young people who share their experiences of cancer online; now viewed by at least 150 people a day.

Evaluation

The main challenges have been:

• Getting the right staff
• Working with professionals who failed to appreciate that young people need specific services. The team has been able to break down these barriers and now work alongside staff whose initial reluctance has been converted into enthusiastic understanding
• Financially, the team has had to work with charities but this takes time.

Geoff Hall, cancer lead clinician in Leeds said: “The TYA service… is a true jewel in the crown for cancer services both locally in Leeds and Yorkshire, and more widely across the UK. The exceptional quality of care they deliver is matched with a strong commitment to collect and integrate clinical data with patient reported outcomes and feedback to both understand and develop their service.”

Impact

Others organisations are now seeking to replicate and adapt this service and providers in Paris, California, Denmark, Texas, Canada, Amsterdam and Madrid have been informed by visits. The team acknowledges that this is an expensive service so it has had to work tirelessly with NHS trusts and charities to ensure that it continues to provide quality care. 

The main impact for patients has been about quality rather than cost-saving and the efficiency of this service is deeply felt by the young people treated and their families.