1. Transition or transfer? Meeting the needs of young people Sue Dolby Consultant Clinical Psychologist Bristol Children’s Hospital

2. Definitions of transition The purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child – centered to adult orientated healthcare systems. Society for Adolescent Medicine, 1993.

3. Transition planning Phase 1: Preparation Phase 1: Preparation Phase 2: Active transfer Phase 2: Active transfer Phase 3 :Integration into adult healthcare Phase 3 :Integration into adult healthcare Bennett et al. (2005) MJA,182,8, 373 – 74.

4. YEAR 9: INTRODUCTION TO TRANSITON PROGRAMME -Aims and pathway outline -Identify key worker (SW/Clin Psychol/Comm nurse) - Initial personal plan YEAR 10 : REVIEW -Increase self management, knowledge, -Assess social, health, education & developmental needs -Personal plan YEAR 11 : REVIEW As year 10 + discussion of transfer timing at 16+ Clinic reviews & Psycho- Social meetings YEAR 12 &13 -Increase self management -Assess needs as before -Separation/independence 6/12 reviews re transfer PREPARATION FOR TRANSFER -Strengths/needs /risks social, emotional, vocational, health -Information on adult Unit -Introductory visit & links to staff -Joint complex care meeting –sig. needs (YP invited) Transfer report written with YP ENTER TRANSITION CLINIC PROCESS IN ADULTS Joint Paed /Adult Nephrologists process varies across region EVALUATION OF PROCESS & JOINT REVIEW OF PROGRAMME – Patient experience/staff experience IN LIAISON WITH: School nurses PSCHE curriculum Connexions Locality SS Disability Health Promotion etc BRISTOL CHILDREN’S HOSPITAL RENAL TRANSITION PATHWAY 2006

5. Annual transition programme interview- paediatric preparation What do you know already about the programme– any questions /particular areas you want to discuss? What do you know already about the programme– any questions /particular areas you want to discuss? Social, educational and vocational – now /near future Social, educational and vocational – now /near future Peer relationships and influences Peer relationships and influences Family relationships – individual issues re independence, individuation etc Family relationships – individual issues re independence, individuation etc Becoming a young person …. Normal developmental trajectories – your experience ( psychological & biological) Becoming a young person …. Normal developmental trajectories – your experience ( psychological & biological) Looking after yourself in relation to renal condition, transplant kidney & choosing health (specific medical concordance & sex/drugs/drinking/smoking/ obesity/ mental health) Looking after yourself in relation to renal condition, transplant kidney & choosing health (specific medical concordance & sex/drugs/drinking/smoking/ obesity/ mental health) Managing own condition ( medical/ Renal Patient view/ clinic) Managing own condition ( medical/ Renal Patient view/ clinic) Information on adult services – expectations = reality Information on adult services – expectations = reality What do we need to work on with you over the next year? What do we need to work on with you over the next year? What do you want other people to be aware of / support you with over the next year? What do you want other people to be aware of / support you with over the next year? Final year plan – when to go, what the process will be & links to adults Final year plan – when to go, what the process will be & links to adults

6. POTENTIAL BARRIERS TO SUCCESSFUL TRANSITION Minimising transition to transfer – manageable process Minimising transition to transfer – manageable process Paediatric anxieties about quality of adult provision Paediatric anxieties about quality of adult provision Attachment to patients – ‘parenting’ by the healthcare team / parenting by carers Attachment to patients – ‘parenting’ by the healthcare team / parenting by carers Lack of preparation for expectations/reality of adult services Lack of preparation for expectations/reality of adult services Adult provider concerns about managing young people Adult provider concerns about managing young people Lack of preparation for ‘independence’ and self care that is developmentally appropriate- challenge for both services Lack of preparation for ‘independence’ and self care that is developmentally appropriate- challenge for both services Based on Fox, MA. (2002). Physicians as barriers to successful transitional care. Int. J. Adolesc. Med. Health. 14, (1), 3-7. Based on Fox, MA. (2002). Physicians as barriers to successful transitional care. Int. J. Adolesc. Med. Health. 14, (1), 3-7.

7. “multi-faceted, active process that attends to the medical, psychosocial and educational/vocational needs of adolescents as they move from child- orientated to adult-orientated lifestyles and systems”. White, PH. Rheum Dis Clin N Am 1997;23:697-707 Quoted by Donal O’Donoghue ww.nephronline.orgww.nephronline.org Definition of transition (2)

8. Integrating transition Integrating transition Developing self management knowledge & skills (making own choices) Developing self management knowledge & skills (making own choices) Integrating ‘Choosing Health’ ( Obesity, smoking, drinking, mental health, sexual health) Integrating ‘Choosing Health’ ( Obesity, smoking, drinking, mental health, sexual health) Integrating Every Child Matters (Be Healthy, Stay Safe, Enjoy & Achieve, Make a Positive Contribution & Achieve Economic Wellbeing) Integrating Every Child Matters (Be Healthy, Stay Safe, Enjoy & Achieve, Make a Positive Contribution & Achieve Economic Wellbeing)

9. Integrating transition Information about paediatric /young adult/ adult systems Information about paediatric /young adult/ adult systems Informed choice about where to be treated Informed choice about where to be treated Supported transition between teams / sites Supported transition between teams / sites Professionals who consider the impact of cancer on normal developmental trajectories Professionals who consider the impact of cancer on normal developmental trajectories

10. Developmental challenges in adolescence & young adulthood Achieving biological and sexual maturation Achieving biological and sexual maturation Developing cognitive capacity to utilise abstract thinking rather than concrete thinking Developing cognitive capacity to utilise abstract thinking rather than concrete thinking Develop personal identity Develop personal identity Develop intimate relationships with peers ( friendships as well as sexual with appropriate partner) Develop intimate relationships with peers ( friendships as well as sexual with appropriate partner) Establish independence & autonomy in the context of their individual socio-cultural environment Establish independence & autonomy in the context of their individual socio-cultural environment Based on Christie,D. & Viner, R. (2005) BMJ 330:301-304 Based on Christie,D. & Viner, R. (2005) BMJ 330:301-304

11. NEEDS OF YOUNG PEOPLE ? Information ( about services, condition, treatments, life with / after cancer, etc) - multimedia Information ( about services, condition, treatments, life with / after cancer, etc) - multimedia Peer support and information Peer support and information Continuity of care and staff Continuity of care and staff Follow up as a survivor – long term effects / information about childhood treatment Follow up as a survivor – long term effects / information about childhood treatment Staff who understand the impact of cancer in young adulthood Staff who understand the impact of cancer in young adulthood ‘Treat us as individuals … we’re not all the same just because we’re the same age’ ‘Treat us as individuals … we’re not all the same just because we’re the same age’

13. X Survivor

14. Bio-psycho-social-vocational development X Survivor

15. Beliefs, expectations, values, knowledge, understanding, perceptions of risk, goals, priorities etc etc Understood & shared, Beliefs, expectations, values, knowledge, understanding, perceptions of risk, goals, priorities etc etc Understood & shared,

16. Phase 1: Preparation Phase 2: Active transfer Phase 3 :Integration Adolescence Adulthood Individualised, developmentally appropriate approach (reflecting changes over time) Integrate an understanding of the developmental challenges of this period in a young person’s life – what does it mean for this young person at this point in their journey (bio-psycho-social-vocational) Identity & independence Peers & parents Informed choices – choices about Information (what, when, how)

17. jimmyteenstv.com provides films and animations made by young cancer patients to give their views on living and coping with cancer. Films are provided by various cancer wards around the UK. https://www.teenagecancertrust.org/ http://www.clicsargent.org.uk http://www.jimmyteenstv.com/2008/04/tya-session-5/

18. Transition: Getting it right DoH DVD www.dh.gov.uk/PolicyAndGuidance/HealthAndSocial careTopics/ChildrenServices/Transitions/fs/en www.dh.gov.uk/PolicyAndGuidance/HealthAndSocial careTopics/ChildrenServices/Transitions/fs/en www.dh.gov.uk/PolicyAndGuidance/HealthAndSocial careTopics/ChildrenServices/Transitions/fs/en