‘Join Us On Our Journey’ Developing a new model of care for children and young people with Type 1 diabetes

A 3 year research project funded and supported by NHS Diabetes and led by Leeds Metropolitan University Dr. Nicky Kime Senior Research Fellow

Aims Develop a model of care that will deliver the aspirations of the policy document, ‘Making Every Young Person With Diabetes Matter’ Improve the care provision for children and young people with Type 1 diabetes in England

Methodology 9 sites across the Yorkshire and the Humber region Talking groups and 1:1 interviews with children and young people (aged 6-25) with Type 1 diabetes, their parents and professionals

Discussions about experiences of diabetes care provision What is currently happening? What is missing? What needs to happen?

‘Bus stops’ 1.Diagnosis 2.Annual assessment, monitoring of complications, care plan, etc. 3.Management of complications 4.Structured diabetes education 5.Mental health and well-being 6.Support for young people and families 7.School, college, work 8.Promotion of good health and healthy choices 9.Sexual health and pregnancy 10.Transition 11.Benefits

Findings Diabetes care Resources Psychological support Education School/college Transition Inconsistencies

Diabetes care Differences within paediatric care and between paediatric and adult diabetes care Consultants and nurses helpful and supportive Care received in clinic good; not necessarily case on ward No awareness of care plan Review of annual assessment especially monitoring of complications

Resources Too few staff and resources Impact on clinic, provision of support, structured education Inadequate staff training

Communication and support Young people and parents want to see consultant/nurse on their own Adults talk over young people like they are not there More support for families Children, young people and parents have no one to talk to More psychological support (including for individuals, families and professionals) Support groups for children, young people, parents and siblings

Education Ongoing, 1:1 More structured education (DAFNE for young adults) and reinforcement Information on sexual health, healthy eating and exercise Information giving process (diabetes camps) Increased awareness amongst GP’s Consistency of information

School Variation in quality of care Positive and negative experiences of children and young people Staff goodwill (insurance and liability) DSNs instrumental in developing care plan Updates difficult (group training sessions) Increased awareness amongst staff and pupils

Transition Length of transition time important More information for young people and parents prior to transition More communication between paediatric and adult services Record keeping

Inconsistencies Conflicting information from consultants and nurses in clinic Different checks within and between clinics (including between paediatrics and young adults) Variable psychological support Variable level of care and differing advice from ward staff Education and structured education different between hospitals Variable policies within and between schools

Areas for improvement Staff training Structured education Psychological support Transition Young adult diabetes care Staffing levels Clinic Annual assessment and monitoring of complications 24hr on-call provision Record keeping GP and public awareness of Type 1 diabetes Care provision and Type 1 diabetes education within schools

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