While we will continue to offer support in our 28 specialist units, our new service extends our support in an exciting way. Over the coming years we will be working with hospitals and regions across the whole of the UK to roll out the new service, giving real control back to young people with cancer to choose how and where they want to be treated.
The current picture
Around 2,500 young people are diagnosed with cancer in the UK every year, but we are currently only able to reach half of them. In some areas of the UK, young people may not know that Teenage Cancer Trust services are available to them, and in others, they might live far away from a unit and receive their treatment in a local hospital where age-appropriate care and support may not be available.
We commissioned some research from a patient insight specialist to find out the positive impact our services already make, and to help understand what young people with cancer need. The research identified a variety of needs including:
- Communication and collaboration – better support and information during diagnosis and beyond, and better communication between health care providers and GPs
- Recognition and engagement – from clinicians and providers that young people need personalised age-appropriate treatment and support
- Community and continuity – support from both their peer group and professionals for their life during treatment and beyond cancer
- Support to keep life normal – specific help to keep life normal, like education and relationships. Support for families is also crucial to young people’s wellbeing and their approach to recovery and survival
The solution: our nursing and support service
In February 2015 we announced the results of a pilot of our nursing and support service in the North West of England, run in The Christie hospital in Manchester and 18 designated hospitals across the region.
A range of specialist staff were put in place to support young people wherever they were treated, both at hospital and at home. These staff included one Lead Nurse, two Clinical Nurse Specialists, two Youth Support Coordinators and a Multi-disciplinary Team Coordinator.
The pilot was independently evaluated by the Centre for Children and Families Research at Coventry University led by Professor Jane Coad, to make sure young people and families’ voices were at the heart of the research into how clinical care is provided and managed.
The evaluation found that:
- we are reaching close to 100% of all young people newly diagnosed in the region
- the new service is highly valued by patients, families and professionals working across the region
- it increased collaboration between the hospitals and entirely changed the culture and understanding of young people’s support and care needs
Dr Sarah Burns, Haemotologist at Manchester Royal Infirmary, said:
We have already seen many examples of the difference Teenage Cancer Trust’s outreach service is making to our young patients. Examples include helping them access support groups and social events so they can meet other young people going through the same life events.