YOUNG VOICES TRANSFORMING THE LIVES OF YOUNG PEOPLE WITH CANCER INTRODUCTION CONTENTS 1 Introduction There’s never a good time to get cancer, but for a teenager the timing seems particularly cruel. Young people can get some of the most rare 2 Teenage Cancer Trust and aggressive forms of cancer. Their rapidly growing bodies work against them, enabling cancer to grow faster. The emotional upheaval 4 Background of adolescence can make a cancer diagnosis even harder to cope with. 6 Quality 12 Access Every day in the UK, six young people aged between 13 and 24 years old will have to face that diagnosis. Yet, as this only represents 18 Diagnosis 0.6%1 of all cancers they are often misdiagnosed initially and lack access to specialist services tailored to their specific needs. 22 Survival 26 Conclusion This report is a collection of messages from teenagers and young adults 28 Appendix about their experiences of having cancer, the issues important to them and their views on Government policy on health services in the UK. These messages were collected in a variety of ways - video messages which have been transcribed; hand written and emailed messages. They come from young people across the UK and their families. Selected messages highlighting key themes make up the body of the report; the appendix contains all of the messages. AUTHOR: Sasha Daly 1'Incidence 2008 - UK' Cancer Stats report, Cancer Research UK (2011) Young Voices - Transforming the lives of young people with cancer | 1 TEENAGE CANCER TRUST Teenage Cancer Trust believes young people’s lives shouldn’t stop Teenage Cancer Trust aims to build enough specialist units so that because they have cancer, so we treat them as young people first, all young people needing hospital treatment for cancer across the cancer patients second. UK have access to the dedicated, specialist support we provide. We exist to improve the quality of life and chances of survival for We lead the world in the care of young people with cancer. the six young people aged between 13 and 24 diagnosed with cancer Together with these young people, their families and the passion every day in the UK. We want to make sure every one of them has of our supporters, we’re challenging healthcare to meet the needs of access to the best possible care and professional support from the young people with cancer and in doing so, we’re transforming lives. point of diagnosis. • We fund and develop specialist units within NHS hospitals that bring young people together to be treated by teenage cancer experts in an environment tailored to meet their needs. • By educating young people about cancer and working with health professionals to improve their knowledge, we work to significantly improve their diagnosis experience. • And through our own research and by working with our partners in the NHS, across the UK governments and organisations both nationally and internationally, we strive to improve survival rates. 2 | Young Voices - Transforming the lives of young people with cancer BACKGROUND Health services in the UK are currently facing some of the biggest Teenage Cancer Trust’s strategic priorities were born out of financial and structural challenges ever. The economic crisis is having consultation with young people with cancer, their families, health a huge impact, with unprecedented cuts and efficiency savings being professionals, experts in teenage and young adult cancers, and trustees demanded. As a devolved responsibility, health services are now and staff. These priorities reflect our experience and understanding of controlled by different political parties. The ageing population and the challenges faced in delivering services for teenagers and young increasing numbers of people surviving and living with cancer are adults with cancer and their families over the last 21 years: also having a significant impact on cancer services. QUALITY & ACCESS These economic, political and social issues are dominating decisions about health services across the UK. It is important, against this • Funding and developing specialist facilities for young people changing background, that the improved recognition, services and with cancer across the UK, including specially trained staff outcomes for teenagers and young adult cancers are not forgotten or reversed. The UK is leading the world in services for teenagers DIAGNOSIS & SURVIVAL and young adults with cancer, but there is still more to do. • Significantly improving the diagnosis experience and outcomes The NICE Children and Young People’s Improving Outcomes for young people with cancer Guidance (2005) (NICE CYP IOG) helped to secure a step change in the recognition of the specific needs of the 13 - 24 year old age group, and design of services to meet these needs. Teenage Cancer Trust is supporting the delivery of the recommendations in the NICE CYP IOG. This guidance is recognised in England and Wales, and similar framework for Scotland and Northern Ireland would help improve services across the UK. 4 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 5 QUALITY BEING WITH OTHER TEENAGERS AND YOUNG ADULTS Teenage Cancer Trust units aren’t like ordinary cancer wards. Everything Young people with cancer being treated on adult or children’s about them has been designed to give teenagers the very best chance "Staffing levels in one hospital were very low and wards is often inappropriate and at worst damaging: of a positive outcome. This is backed up by our Nurse Consultants who I was regularly made to feel like a nuisance. My provide clinical care, develop research, deliver professional education mum and my sister (who is a student nurse) did and ensure that standards remain as high as possible. most things for me i.e. changing my bed, dressing my hickman line, helping me shower. The nurses We know how damaging it is to take a young person away from their administered my chemo and gave me drugs (which “I found having to be treated with normal life - their friends, their environment, and put them in a cancer ward with small children or older people. were always late). I understand they were very short adults, mainly OAPs, a lot worse to staffed but I do not think this is an excuse... On a I was treated on an handle than the cancer diagnosis itself... Quality is about making sure the staff and environment are specialised positive note, I found the care at the beatson (West the only thing that made it bearable and tailored to benefit the specific needs of young people. We are of Scotland Cancer Centre) outstanding and found adult oncology ward calling for national standards across the UK setting out expected service the nurses lovely... It was the little things like having was having the Teenage Cancer Trust standards including staffing and age appropriate units and services. a microwave in the Teenage Cancer Trust room or a and it was the hardest team bringing me things to do and nurse having a chat in the middle of the night.” having a friendly face. To make it as STAFFING experience of my life. normal as possible. Mairead, 25, from Glasgow, diagnosed with germ cell tumour Teenagers and young adults face a range of challenges associated with their age and stage in life. These challenges don’t disappear with I had to sleep next to old people who a cancer diagnosis, which is why professionals trained in the needs of were incontinent; who were planning teenagers and young adults are so valued: "I feel it is very important that every teenager and funerals... My whole experience would their entire family are given psychological support have been a completely different story whilst facing cancer. It is simply impossible to expect if I was on an age appropriate ward, a young person, who has so many things to worry Stephanie, 19, diagnosed aged 17, from Hertfordshire, diagnosed with Ewings Sarcoma (right pelvis) with people I can relate to, and with about including academic work, the carelessness of friends' comments, to try to cope on their own." staff who wanted to work with the teenage and young adult age group.” Nilani, 14, Bromley Kent, diagnosed with Adrenal Tumour 6 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 7 Yet, being with people of the same age makes the "I would like to open your eyes to 'God’s waiting world of difference, transforming the experience: room' which is my clinic and being the youngest person by about 40 years as I have 'old man's "I'd never really met other "My experience of the NHS is a good one - the leukaemia'... I want you to know how amazing us care and support I have received is second to 'Cancer Kids' are, and the importance of looking teenagers until coming to none. I hope that this will continue, not just for after us properly." Teenage Cancer Trust or me but all other young cancer patients I have met and who are still undergoing treatment." having the hospital meeting." Jadi, 23, diagnosed with breast cancer Fiona, Morvern and Kirsty "I want the nhs to be more focused to people's needs. when I was having chemo and radiotherapy I was never being treated with anyone that was even similar to my age and "The treatment that I am allowed to access "I hope you understand the need to what I was going through. and every week I went through Teenage Cancer Trust is the best kind into chemo someone else had died. It was just "Babies screaming at 3am along with of treatment I could ever imagine and it's unlike allow the age limit of the Teenage too hard to deal with.