The Teenage Cancer Trust has blazed a trail for charities by investing in commissioning. Sue McLellen and Simon Davies explain
Genuine and equitable collaboration with the third sector happens all too rarely in the health system today. However, a partnership between the Teenage Cancer Trust and the NHS shows foresight and imagination which may prove influential in changing health services for teenagers and young adults for good.
For many years, young people and their families have been protesting against traditional models of hospital care, where younger teenagers with cancer find themselves treated among young children and older teenagers and young adults treated with much older, often elderly, people.
These are poor environments with poor outcomes, surprisingly low entry of patients into clinical trials and insufficient research into their specific and often rarer cancers. This age group has a range of specific needs, reflecting the transition from childhood to adulthood, which are complicated by cancer diagnosis and treatment and pose particular clinical management problems. Furthermore, there is wide variation in referral patterns across the UK, resulting in young people being scattered throughout the healthcare system so that teams have little opportunity to develop expertise.
After almost 20 years of campaigning for teenagers and young people with cancer to be treated in specialist age-appropriate centres, the Teenage Cancer Trust may finally see its ambitions realised. The charity has been developing specialist units in partnership with the NHS and delivering a range of other services to enhance the treatment pathways of young people and their families. Having been involved in the development of the National Institute for Health and Clinical Excellence, improving outcomes guidance for children and young people with cancer, the charity's latest innovation is to invest in commissioning.
Its chief executive Simon Davies first pitched the idea in 2005. Commissioners of specialised services became interested in the concept and have since worked closely with the Department of Health Cancer Action Team, key health professionals and other charities to bring the idea to life.
These joint efforts with the charity are now bearing fruit and in November it announced that it would be funding eight regional programme managers in England to support commissioners in delivering the guidance, focusing on the delivery of age-appropriate services. This is the first time a charity has funded commissioning roles in this way.
While it is unique for a charity to invest in commissioning, there is considerable logic from their perspective. The improving outcomes guidance is a seminal document. It has set a framework for change which has the potential to have a dramatic impact on cancer services delivery in the UK for this group and will influence other services for young people. Indeed it is a model to which no other country in the world can lay claim.
However, implementation of the guidance is complex, with each region requiring a tailored solution. We hope the programme manager roles will be the catalyst for effective and timely implementation of the guidance to improve cancer services for teenagers and young adults.
Since publication of the guidance in 2005, national cancer director Mike Richards and national clinical director for children Sheila Shribman have led a national implementation group, preparing policy and benchmarking for future service delivery.
Most contentious of all are the recommendations for the teenage and young adult group, which traverse paediatric and adult services. The new guidelines plan to change existing policy by centralising services in principal treatment centres for teenagers and young adults with cancer, developing multidisciplinary teams that link adult and paediatric professionals and creating networked shared care arrangements governed by the principal centre. All of this adds up to substantial change for traditional demarcations in services and considerable challenges.
The commissioning landscape is also changing due to the challenge of developing world class commissioning to shape services to meet the needs of young people locally, in partnership with health trusts, cancer networks and the young people themselves. We are looking for local solutions, innovation and services personalised to the needs of teenagers and young people.
The responsibility for implementing the NICE guidance sits with specialised commissioning groups and their commissioners for rare cancers - a complex area of service delivery. The resources within the commissioning teams will be stretched to deliver the structural change to implement the teenage and young adult agenda. This is why the programme managers are crucial. The high level of commitment and enthusiasm shown by commissioners and their dedication to ensuring this guidance is implemented equitably is encouraging.
Simon Davies saw the creation of these posts as a means to an end. "Our objective is to see specialist services delivered as quickly as possible to all teenagers and young adults with cancer throughout the UK, instead of only to the 30 per cent who receive it now.
"Partnering the NHS in commissioning gives the Teenage Cancer Trust the opportunity to work alongside a major initiative and help deliver the desired outcomes effectively. The charity-funded posts will supplement the commissioning teams in England for two years as the guidance is implemented. We are proud that the NHS has agreed to partner us in this unusual way."
The guidance implementation group, of which the charity is a part, expects there to be significant results, as does Professor Richards: "I very much welcome this initiative, representing as it does a significant additional resource to support specialised commissioning groups in commissioning services that will improve outcomes and patient experience for young people with cancer through full implementation of the guidance."
Leading the world
There will be detractors who may argue that this is a line that should not be crossed by the third sector. This is a simplistic view that fails to appreciate the challenges we face, let alone new initiatives that can lead the world. This could mark the start of a new era of partnership between the NHS and the third sector where there is real equality. Teenage Cancer Trust can influence the commissioning agenda in a way no other charity has been in a position to do before and as they are true advocates of the patients and families who use the services, we must welcome it.
Simon Davies is chief executive of the Teenage Cancer Trust and Sue McLellen is head of specialised commissioning at the London specialised commissioning group.