Engaging young people to attend a Transition Clinic – an idea in action – Dr Shelagh Watts & Dr Emily Betts, Clinical Psychologists, Buckinghamshire Hospitals NHS Trust

 BPT means that is recognised that young people are just as in need of focussed care up to 19 years  Data clear that YP need care as metabolic control deteriorates and patients are lost to follow up in this group (Pacaud et al 2005)  Data shows engagement in a clinic is as much about the therapeutic relationship than other factors,(Allen 2010;Watanabe 2010),non judgemental, honesty & knowledge  Need to keep sight of patients  Model of clinic needed that nurtures and develops their autonomy, not just letting them go Transition in Diabetes

 Patients seen in their own allocated clinic 16-21yrs by Adult Team  YP seen on their own  Opportunities for discussion with MDT about age related lifestyle issues; driving/university life/alcohol. BUT Low attendance rate and a feeling that YP not engaged with clinic and staff; are they missing the structure, expectations & familiarity of paediatric input? Bucks Hospital Trust Young Persons Clinic & Transition Clinic

 How to engage the YP in the clinic- particularly in the first year of transition 16/17 years to set up expectations of clinic care  Hospital environment poor, no grouped set of clinic rooms or user friendly waiting area  Model of care? with/without parents, paediatric team and/or adult team, seen by team or individual professionals ?  Need to do SOMETHING to get going  Education Workshop for new group of 16yr olds transferring to the YP/transition clinic? YP Business Meetings MDT including psychology

From To How could this work?  Small YP survey suggested YP feeling scrutinised in clinic & wanting more information but not adverse to meeting other YP. AIM to change Young Persons perceptions of their clinic appointments through the workshop attendance.

 Agenda to introduce /familiarise YP to the clinic staff and environment  Allow YP to be apart from their parents  Raise topics that could be discussed in future clinics  Reassure parents about the next level of care  Encourage YP to communicate with each other Confidence and technique for marketing the workshop borrowed from Paediatric Diabetes Planning

 All MDT involved in delivery of workshop  Message of importance and expectation ‘first Transition Clinic appointment’  Timing important, eg at a transition point when wanting information  Small groups that move from topic to topic  Take away information  Numbers- expect 50% attendance.  Transition clinic; 17 families with 16 yr olds invited –all due to move up to clinic in the next 3-6 months –. Previous Experience from Paediatrics

1.Introduction to families and agenda setting 2. Young Peoples Groups  Hospital walk about (reduce worries about finding the place, talk to staff and each other)  Biology lesson/information packs (meet staff & give structure that allows group discussion)  Myth Busting (peer group and staff/YP discussion) 3. Parents discussion. Reassure in the consistency of care offered across the clinics. Format with the ‘communication’ Agenda

 Facilities far from ideal- borrowed Staff Education centre, lookouts needed to find families  Performance Anxiety of Staff  Doubts about the agenda ON THE SPOT  Numbers attending 8 YP 10 parents – rejig groups  House keeping, refreshments!  Parents Group 50/50 mum/dad  Reluctance to finish by parents and YP- no break out space Reality on the Day

 Introduction (to team and agenda for the session)  Orientation (to the hospital and adult Diabetes Centre) Would this be difficult to engage the young people in?  Biology (overview of diabetic patient vs. non diabetic patient). Previously used in groups with success.  Myth busting (range of diabetes “myths” developed by staff). Encouraged the young people to vote true or false and facilitated discussions. Eg ‘My BG levels affect my mood & concentration, I have to do a BG test whenever I drive, insulin makes you fat; my diabetes won’t be affected if I take drugs’ Workshops

 Designed brief evaluation form  Completed after the session-just by patients  Rated venue, each workshop and meeting other young people.  Given room for comments on what was helpful/not necessary Evaluation

 Venue - “good” by all 8 patients  Orientation – range 6-10 in the “very useful” range.  Basic biology – range 7-10 in the “very useful” range.  Myth busting – range 7-10 in the “very useful” range.  Meeting other young people – range 8-10 Patient Feedback

 What did you find helpful about the afternoon?  “Meeting the team, learning about the changes”  “I found the discussions with the team and doctors useful for understanding the transition and more about adult life with diabetes”  “Meeting new team and finding out where I need to go”  “Hearing other people’s opinions and facts on diabetes-helped to give a better insight”  “Understanding which myths were true and false”  “Socialising with the staff and other young people”  “Myth busting and getting to talk to other people the same age”  “Knowing about some things I didn’t know!  Was there anything you thought that wasn’t necessary today? “no” or no comment  Any other comments? None Patient Feedback

 Unplanned group discussion with parents occurred – psychological discussion about keeping their children on board with diabetes care.  At times it was very emotional, but different members of the team available to facilitate the discussion (Psychologist, Dietician and Medic).  Could the clinics be held on another day? Most felt this was a really useful session for them as well as their child. Parent’s feedback

 This was the first info session we had run for new patients transitioning from paediatrics.  Overall felt beneficial- the families were as anxious as staff about transition  We need an additional activity to take place during the orientation slot as this was completed very quickly.  Has enabled a trial of a more flexible model of care in clinic – All patients have turned up so far!  Further plans about communicating with this group using Assistive Technology  We will review the leaflets in the pack  When is the ideal time to run this session?  Doing Something better than talking about it! Team debrief and reflections