Peer Support Groups for Young People with Diabetes Newham UCLP Programme Dr Shanti Vijayaraghavan September 2016

Key Facts about Newham Borough of Newham 332,583 pop.  30% are < 20 years, making it the youngest borough in the UK  90% of school children are from a minority ethnic group  42% of children < 16 years are living in poverty  Obesity levels in children are higher than the English average The age-specific prevalence of T2DM in children and young adults within Newham is the highest in the UK at 0.57/1000 (Type 2 Diabetes in children and young adults in East London: an alarmingly high prevalence. A Balasanthiran, T O'Shea, A Moodambail, T Woodcock, AJ Poots, M Stacey, S Vijayaraghavan. Practical Diabetes June 2012;29(5):193-8)

Our figures Total number of patients (active) on Diamond (Diabetes Database) years : 219 Type 1 = 162 Type 2 = 46 Other = 11

Our Young Adult Service (2010) Joint monthly multi-disciplinary transitional clinic with the paediatric team Clinic located in community health centres Designated diabetes specialist nurse – routine walk-in service, open access, evening clinics Information leaflets (What to expect from a consultation) Text messaging reminders, &telephone access, Skype-based follow up Work with colleges, employers

Challenges DNA rates (2008/9): 37-50% Frequent A&E use by the same group of patients Poor self-management and engagement (LBN MORI 2009) Poor pregnancy planning Poor transition Poor clinical outcomes

You’re Welcome 2010 One of 14 National Pilot Sites Key Findings from three focus groups:  Need for improved ease and flexibility of access to acute services  Need for peer support groups  Need for a more “ holistic” model of care November 2011: Multi-agency stakeholder workshop (patients, carers, local colleges, commissioners, public health, police!) to develop a five-year plan for an effective and user-friendly Transitional Diabetes Services

“Understand that there may be other things going on in my life when you treat me: be interested in me as a person, not just a diabetic”

Peer support for young people (16-25 years) with diabetes – impact on self-management and user engagement (2014) Aim: to explore the scope and feasibility of a peer supported diabetes self-management programme for young people, using a “story sharing” model Monthly, evening drop-in two hour groups Community venues Ability to discuss a range of health/non-health issues Work with a range of local partners Facilitated by a social anthropologist and research nurse Involve young people in the design of these groups

Project Outputs PATIENTS A well established peer support group for young people years with support from local stakeholders addressing health & social care needs SERVICE A re-designed clinical service using patient feedback ACADEMIC: Qualitative & quantitative data to determine impact on clinical outcomes, patient engagement and organisational impact ? Subsequent RCT

Peer Support Project Venue: Sir Ludwig Guttmann Health & Wellbeing Centre Date: 15 th May 2014 Time: 10am – 2pm Purpose: Launch of the Peer Support Project Building support from partners for the Peer Support Project Outcomes Wider awareness of diabetes in young people and peer project Commitment from partners to support the project Draft programme of events to inspire young people and improve engagement with services Programme 10:00 – 10:30 Arrival and refreshments 10:30 – 10:35Welcome and purpose of day – Graeme Betts, Executive Director Health & Partnership, LBN 10:35 – 10:45The challenge of diabetes – Sue Milner, Director of Public Health, LBN 10:45 -10:55 Diabetes in Young People – the Newham Story - Dr Shanti Vijayaraghavan, Teresa O’Shea - Specialist Diabetes Nurse, Barts Health 10:55 -11:10 Patient Stories 11:10 -11:15 Guttman Academic Partnership: peer support groups for young people with diabetes - Dr Shanti Vijayaraghavan, Barts Health 11:15 – 11:20Official launch of the Project – Cllr Clive Furness 11:20 – 11:30Introduction to work groups to discuss how partners can build support to inspire young people with diabetes to engage with services. 11:30 – 12:30 Discussion in workgroups 12:30 – 12:45 Feedback 12:45 - 1:00 Next steps 1:00 – 2:00 Lunch

What next?  The East London* CCG TST (Transforming Services Together) Programme: 1.The Newham Diabetes Project led by Newham CCG 2.Appointment of a Youth Champion to lead the Peer Support Groups 3.A multi-agency working group 4.Appointment of 4 Youth Commissioners to lead service redesign  Working with East Ham Library to create a Young People’s Hub  Exploring the role of group clinics for young people with diabetes: NIHR HS & DR proposal * Newham, Tower Hamlets, Waltham Forest

We need help with..... How do we keep young people engaged? How do we involve younger people ( year-olds)? How can one embed this model? Do we need a Young Person’s Centre in Newham to provide integrated care?

The team: Desiree Campbell- Richards, Diabetes Research Nurse Teresa O’Shea, DSN for Young Adult diabetes service (recently retired) Fiona Pullen, DSN for Young Adult Diabetes Service Rita Sudra, DSN for Young Adult Diabetes Service Dietetic colleagues – Paediatric and Adult Diabetes Services Ohmar Myint, Associate Specialist Young Adult Service Anna Collard. Social Anthropologist Dr Abdul Moodambail, Consultant Paediatrician Jenny Hurley, Paediatric DSN Dr Jessica Walker, Clinical Psychologist Rachelle Ferrer, Newham Diabetes Project Anil Shah, Newham CCG Lead The Youth Champion, Youth Commissioners, Peer Group Members THANK YOU