1. Teenagers and Young Adults with Cancer – A Lost Tribe? Maria Cable RN, BSc(Hons) Cancer Nursing, MA Teaching and Learning Course Director, Coventry University, Education Committee Member, EONS and TYAC

2. The plan…. 1.Age and Adolescence 2.TYA Cancer 3.Explore some specific challenges 4.Teenage Cancer Trust 5.Teenage/Young Adult Cancer Nursing

3. Teenagers/Young Adults What comes into your mind?

4. Adolescence A time of great change and challenge. o Biological change- puberty o Hormones- teen pregnancy, spots o Brain changes- very real o Relationships – friends o Sexuality – figuring it out o Independence –eg. learning to drive, moving away from home o Education/employment – off to Uni/college, emigrating/travelling o Pressures of a modern world- internet, growing up too fast

5. Defining the age of adolescence WHO Young people = 10 – 24 years of age Adolescents = 10 – 19 years of age Youth = 15 – 24 years of age In Teenage and Young Adult (TYA) OR Adolescent/Young Adult (AYA)Cancer Care Country or RegionAge Range in years Descriptive term Australia15-25AYA USA15-39AYA Canada15-29AYA Europe15-42AYA Or TYA UK13-24TYA

6. TYA Cancer Statistics UK o Approx 2200 diagnosed annually/ 7 diagnosed per day o Slightly more males than females o Less than 1% of cancers at all ages Cancer Research UK (2014)

7. TYA Cancer Types - UK

8. Survival/ Mortality Survival o More than 80% survival at 5 years o Survival slightly higher in females than males o Survival is significantly lower in TYA’s than in children for several cancer types o Variation between diagnostic groups Mortality o Leading cause of death in TYA’s after accidental death o 310 die from cancer each year (58%Male/42%female) o Brain, other CNS/intracranial tumours most common cause of death o UK mortality rates are improving

9. Specific TYA Cancer Challenges 1. o Survival rates for TYA’s is less improved compared to adults & children o Incidence in TYA’s is rising o TYA access to clinical trials is poor o Many TYA’s receive a late diagnosis o Very small numbers in a lot of centres o Guidance for systematic referral pathways patchy

10. Specific TYA Cancer Challenges 2. o End of life care o Community o Survivorship issues o Late Effects o Long Term Follow up o Transition Adult v’s Paeds but we now practise…. TYA ‘Age Appropriate Care’

11. Service Delivery – UK Standards o National Guidance in 2005 o Principal treatment centres (x13) o Supported by local designated centres / hospitals o Unhindered access to age appropriate facilities and support o TYA Specific Multidisciplinary team meetings working with site specific teams o Inclusion of TYA in Clinical Trials

12. Teenage Cancer Trust A UK charity Clinical Services Built specialist units where young people can come together and expertise is developed Fund specific staff such as Lead Nurses, CNS’s and Youth Support Co-ordinators See the young person first and are cognisant of youth issues, Create unique resources and opportunities eg Find your Sense of Tumour, JTV. Education in Schools, transition To make this happen………….Fundraise

14. CANCER

15. Adolescence A time of great change, challenge and culture. o Biological change o Hormones o Brain changes o Independence o Relationships o Sexuality o Education/employment o Pressures of a modern world CANCER

16. How specialist TYA Cancer care supports these unique needs o Biological changes –maintaining normality through an abnormal time, impact of treatment o Hormones – fertility and growth o Brain changes – making care ‘fit’ young people o Independence – ‘Growing up and growing down’ o Relationships- maintaining old and developing new, o Sexuality – safe sex, ‘being who I want to be’, o Education/employment – provide specialist teachers, liaise with education providers, new opportunities for learning and development o Pressures of a modern world - social media, technology ASSESSMENT TOOLS- often based on HEEADSSS (Goldenring et al 2004) Home environment, Education and employment, Eating, peer-related Activities, Drugs, Sexuality, Suicide/depression, and Safety from injury and violence

17. How we do it Introducing Nicky Pettitt

18. Multi professional working ‘Coming together is a beginning. Keeping together is progress. Working together is success. ‘ Henry Ford Multi-professional team work underpins the essence of TYA cancer Care Learning with from and about each other – education is key

19. TYA Cancer Nursing Loud and clear in the UK and growing beyond Nursing Competence and Career Framework (2014) Blueprint of Care (2012) Reaching out beyond- EONS/TCT Nursing leadership Summits- Dublin and Amsterdam Teenage Cancer Trust Nursing leadership Scholarships via Florence Nightingale Foundation

20. EONS/TCT Nursing leadership Summit(s) Dublin May 2014 12 Nurses, UK, Ireland, Belgium, Spain, Netherlands, Portugal and Belgium Invited Guest Dr David Benton, CEO ICN Developing a network/community Concentrated on personal leadership styles 360 0 Feedback – Anne Mulliner, Business Coach Moving TYA Cancer Nursing on for all Community network embedded? Amsterdam Feb 2015

21. Useful organisations o TYAC – UK group for professionals www.tyac.org (where you can download Blueprint and Competence work)www.tyac.org o Teenage Cancer Trust – UK charity driving care for TYA with cancer www.teenagecancertrust.orgwww.teenagecancertrust.org International organisations o ENTYAC\SIOPE – European Professional Organisations o Canteen- Australian charity driving care for TYA with cancer o Teen Cancer America - New in 2013 o Critical Mass - Young Adult Cancer Alliance, USA

22. Want to learn more…? Accredited Education Online Post Grad Cert TYA Cancer at Coventry University, UK Single modules at Coventry University, UK Graduate Certificate of Adolescent Health and Welfare: Oncology Stream. University of Melbourne Training/Non accredited TYAC Study days Local study days Free online learning modules Ontrac, Melbourne SIOPE-ESMO E-Learning ‘Cancer in Adolescents and Young Adults’ www.coventry.ac.uk/teenagecancercare

23. Take home messages 1.See the ‘Young Person’ first; cancer second. 2.Young peoples voices are powerful and loud! 3.Small changes can make big differences to TYA’s and their families 4.Foster a likeminded community locally and become joined in the international network. 5.Don’t reinvent the wheel, Educate, Network, Collaborate. 6.Be a champion- Be TYA Cancer Nursing Champion! TYA Cancer- Lost and now Found! Thank you Maria Cable m.cable@coventry.ac.uk @mariacable2m.cable@coventry.ac.uk