Monday 6th July 2015
UPDATE: Request your copy of the guide by emailing firstname.lastname@example.org
The ring-bound guide provides age-appropriate medical knowledge about cancer along with loads of information on other areas including working through emotions, speaking to family and friends and dealing with changes in appearance. It was created in response to research carried out by patient insight specialist Kay Fisher from Experience Engineers on our behalf, which found that young people felt there was a lack of consistent information made available to them that was tailored to their age group and that dealt with the physical and mental impact of cancer and gave advice on how to keep their lives on track.
Honest Answers Sound Advice: A Young Person’s Guide to Cancer, which was written with the help of young cancer patients and an expert team including specialist doctors and nurses, psychologists and youth support coordinators, even contains cards that can be ripped out and given to others to explain experiences and emotional needs.
The guide also adheres to the strict quality guidelines of NHS England's The Information Standard.
Attendees at our under 18s Find Your Sense of Tumour conference were the first to receive the guide.
George, 19, who spoke at the event, said:
Cancer is a taboo subject, it's weird and people don't generally know how to talk about it. To have a guide that puts it all in clear terms is just brilliant.
"It is really nice to have something that puts everything you've ever thought or worried about in one place in a way that is completely clear." - Jess, 18.
The guide is designed to complement the work of our nurses and youth support coordinators within Teenage Cancer Trust specialist units and will be available to every young person diagnosed with cancer in the UK. Combined with our new Nursing & Support Service, which will provide nursing outreach to young patients who aren’t able to have their treatment within our units, the guide will bring us much closer to our goal of supporting every young person with cancer in the UK.
Laura Clark, Head of Quality, said:
The insights from Experience Engineers showed us that young people needed much better support and information during diagnosis and throughout their cancer journey. These young patients told us what confused them and what they wished they'd known when they found out they had cancer, and we put the book together based on that.
The research from Experience Engineers showed that young people's needs fall into four main categories:
1. Communication and Collaboration: Better support and information during diagnosis and throughout their cancer journey, coupled with improved communication between healthcare providers and GPs.
2. Recognition and Engagement: Recognition from clinicians and providers that young people need personalised age-appropriate engagement, treatment and support.
3. Support to keep life normal: Young people with cancer are young people first. The lives they continue to lead outside treatment, like their education and relationships, require specific help to keep life normal. It’s also incredibly important for them to know that their families are supported, informed and looked after. Having the right support for their lives outside treatment and for families is crucial to young people’s wellbeing and their approach to recovery and survival.
4. Community and continuity: The opportunity to be supported by a peer group and a nurse specialist who can deliver therapeutic conversations throughout treatment. Continuing support from both their peer group and professionals for their life with or beyond cancer is very important.