Good Idea: Young UK cancer sufferers to benefit from holistic support

Layla Haidrani
Tuesday, March 17, 2015

Following a successful pilot project in the North West, a support service for young cancer patients that focuses on their social and emotional needs during and after treatment is to be launched nationally.

Person-centred care looks after emotional needs as well as a young person’s physical health. Picture: Teenage Cancer Trust
Person-centred care looks after emotional needs as well as a young person’s physical health. Picture: Teenage Cancer Trust

Name: National Nursing and Support Service

Provider: Teenage Cancer Trust and the NHS

Over the next five years, young people affected by cancer will benefit from age-appropriate tailored care and support provided by the Teenage Cancer Trust and the NHS.

After a successful pilot in the North West, based around the principal treatment centre in Manchester, the service will launch the new nursing and support service across the whole of the UK, ensuring that the 2,500 young people diagnosed with cancer each year have access to specialist support wherever they live in the country.

To ensure better support for young people affected by cancer, the trust will provide improved communication between care providers and GPs. This joined-up service will give young people better support and information during diagnosis and treatment.

Kay Fisher, founder of Experience Engineers and a patient insight specialist who has carried out research on what young people need from a service, says: "Young people being treated for cancer want to be treated as young people first and foremost. They don't want to spend precious time with their families talking about what treatments they've had each day. One patient said to me he didn't like it when his mum came in and he spent the whole time explaining what happened that day and week. They want everything explained to their family before so that they can spend the precious time they have talking about family life."

The recognition that young people need age-appropriate treatment and support was envisaged for a number of years by Sam Smith, head of nursing at Teenage Cancer Trust. While working as a nurse at The Christie Hospital in Manchester, she observed that doctors and nurses in local hospitals were unable to offer age-appropriate support to young people. And in some regions, less than half of young people were referred to specialist principal treatment centres for young people's cancer. As a result, not all young people have access to Teenage Cancer Trust facilities or specialist teenage or young adult cancer nurse specialists, and so miss out on age-appropriate care and support. The weakness of the system confirmed to Smith the need to bridge the gap in cancer care of young people. She says: "I thought if we could provide an independent service, this would ensure the change that we needed to see would come to fruition."

Independently evaluated by Professor Joan Coad at the Centre for Children and Families Research at Coventry University, the pilot's joined-up approach between healthcare providers and GPs had positive results in the North West. The evaluation found that the new service model - which sees nurse specialists and youth support co-ordinators treat children at home and in hospital - increased collaboration between the 18 local hospitals and changed the culture and understanding of young people's support and care needs. It is estimated that nearly 100 per cent of all young people newly diagnosed in the region were reached.

For Teenage Cancer Trust, it is vital that young people have the right support for their lives outside treatment and for families it is crucial to young people's wellbeing and their approach to recovery. To help retain elements of normal life, activities and events were developed with family and siblings in mind. Louise Pennington, a Teenage Cancer Trust specialist nurse for teenagers and young adults, says: "The emotional and mental wellbeing of the young people is as important as physical health. We aim for complete balance with holistic care that is person-centered."

Moreover, the opportunity to be supported by a peer group and a nurse specialist throughout treatment, and in dedicated units for teenagers and young adults was valued by young people, says Professor Coad. "Teenagers and young adults absolutely loved it. They felt for the first time they were getting that age-appropriate care, that choice of where they had treatment."

Lucy Baguley, aged 17 from Birmingham, says being on dedicated units specifically for teenagers and young adults with cancer offered "comfort". She says: "The ward I was on was like being with another family. It was really comforting as I was able to relate to them. I didn't feel like I was on a cancer ward, it felt like I was with my friends."

For young people, consistent treatment support does not stop once recovery is under way. Caroline Heniyatt, youth support co-ordinator says: "It's really important we care for the young person after treatment. Young people will get a key worker and that'll be the youth support co-ordinator. Even after treatment, we can still work with them for a couple of years. The consistency can last up to five years."

The trust maintains that promotion and education are key to ensure teenage cancer patients, GPs, doctors and other healthcare professionals are aware of our services so every young person has access to specialist care.

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