‘join us on our journey’ developing a new model of care for children and young people with type...
TRANSCRIPT
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‘Join Us On Our Journey’
Developing a new model of care for children and young people with Type 1 diabetes
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A 3 year research project funded and supported by NHS Diabetes and led by Leeds Metropolitan University
Dr. Nicky KimeSenior Research Fellow
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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
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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
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• Discussions about experiences of diabetes care provision
What is currently happening?
What is missing?
What needs to happen?
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‘Bus stops’
1. Diagnosis2. Annual assessment, monitoring of complications, care
plan, etc.3. Management of complications4. Structured diabetes education5. Mental health and well-being6. Support for young people and families7. School, college, work8. Promotion of good health and healthy choices9. Sexual health and pregnancy10. Transition11. Benefits
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Findings
• Diabetes care
• Resources
• Psychological support
• Education
• School/college
• Transition
• Inconsistencies
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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
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Resources
• Too few staff and resources
• Impact on clinic, provision of support, structured education
• Inadequate staff training
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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
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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
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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
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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
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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
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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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Contact:
Tel: 0113 8126008Mob: 07826876697
www.leedsmet.ac.uk/gettingsorted