Researching transition - Tim Rapley Newcastle University, NHS Northumbria Healthcare Trust NHS Improving Quality held an event in London on 31 July 2013 to progress the children and young people transition to adult services work with a focus on turning the rhetoric into practice entitled “Working to Define a Generic Service Specification for Transition”

2. http://research.ncl.ac.uk/transition/
transition@ncl.ac.uk
Tim Rapley
Institute of Health & Society
Newcastle University
tim.rapley@ncl.ac.uk

3. Development work

4. Development work
‘Proposed beneficial features’ - specific features of a transfer service
which have been recommended as good practice and for which there
is preliminary evidence of benefit

5. Development work - ‘Proposed beneficial features’

6. Development work - ‘Proposed beneficial features’
•
Age related clinics
•
Introduction to clinic and clinicians before transfer
•
Active promotion of health self-efficacy
•
A written transition plan
•
Appropriate engagement of parents from perspective of young person
and parent

7. Development work - ‘Proposed beneficial features’
•
A key worker for the young person
•
Multi-disciplinary team providing integrated care
•
Life skill training for education, relationships, housing etc.
•
Co-ordinator working at managerial level
•
Formal assessment of transfer readiness

8. Our Programme - Overall purpose
To promote the quality of life and health of young people with complex
health needs by generating evidence to enable NHS Commissioners and
Trusts to facilitate successful transition of young people from child to adult
health services, thereby improving health and social outcomes

9. Our Programme - Overall purpose
Northumbria Healthcare NHS Foundation Trust and Newcastle University
have developed a research programme to answer this question. The
programme involves further NHS Trusts and the voluntary sector.

10. Our Programme - Overall purpose

11. Our Programme - Lead applicant and co-applicants

12. Our Programme - Collaborators

13. Our Programme – Research Question

14. Our Programme – Objectives
Work with young people with complex health needs to determine what
successful transition means to them and what is important in their
transitional care

15. Our Programme – Objectives
Work with young people with complex health needs to determine what
successful transition means to them and what is important in their
transitional care
Identify the features of transitional care that are effective and efficient

16. Our Programme – Objectives
Work with young people with complex health needs to determine what
successful transition means to them and what is important in their
transitional care
Identify the features of transitional care that are effective and efficient
Determine how transitional care should be organised, provided and
commissioned

17. Our Programme – Objective 1
Work with young people with complex health needs to determine what
successful transition means to them and what is important in their
transitional care
•Formation, maintenance and consultation with a Programme Young Person
Working Group (UP)
•Evaluation of a “health passport” in a study co-led by the UP group

20. The Role of
• To represent the voices of young people
• HONEST communication between UP and the PMB
• The opportunity for young people and professionals to work alongside as
equals
• Democratic decision making paramount
• Work on serious issues and tasks in partnership with the PMB
• Question the decision making of the PMB

21. Our Programme – Objective 1
Work with young people with complex health needs to determine what
successful transition means to them and what is important in their
transitional care
•Formation, maintenance and consultation with a Programme Young Person
Working Group (UP)
•Evaluation of a “health passport” in a study co-led by the UP group
•Explore the importance young people attach to the different components of
‘successful transition’

22. Our Programme – Objective 2
Identify the features of transitional care that are effective and efficient
A four year longitudinal study
•Quantitative data collection on 450 young people, including costs and
resources used
•Qualitative data collection on 15 young people, including observations of
consultations
•Health economic assessment of the relative efficiency of illustrative models
of transition

23. Our Programme – Objective 2
Identify the features of transitional care that are effective and efficient
Exemplars for the Longitudinal study
•Chronic illness
Diabetes
•Complex physical
Cerebral palsy
•Neurodevelopmental
Autism
Focus on ‘proposed beneficial features’

24. Our Programme – Objective 2
Identify the features of transitional care that are effective and efficient
Outcomes for the Longitudinal study
•Participation: Rotterdam profile (8 items)
•Wellbeing: Warwick-Edinburgh Mental Well-being Scale (14 items)
•Health outcome: EQ-5D-Y (5 items)

25. Our Programme – Objective 2
Identify the features of transitional care that are effective and efficient
Outcomes for the Longitudinal study
•Patient and carer experience of services: Mind the Gap (22 items)
•Condition specific outcomes:
– Diabetes health markers
– CP: pain, physical markers, unmet health needs
– ASD: Hospital Anxiety and Depression Scale

26. Our Programme – Objective 3
Determine how transitional care should be organised, provided and
commissioned
•A process evaluation of how ‘developmentally appropriate health care’ is
introduced in two NHS Trusts

27. Our Programme – Objective 3
Determine how transitional care should be organised, provided and
commissioned
•A process evaluation of how ‘developmentally appropriate health care’ is
introduced in two NHS Trusts
•A study on commissioning: the current arrangements, barriers and
facilitators, how could transition services be commissioned better?

28. Our Programme – Objective 3
Determine how transitional care should be organised, provided and
commissioned
•A process evaluation of how ‘developmentally appropriate health care’ is
introduced in two NHS Trusts
•A study on commissioning: the current arrangements, barriers and
facilitators, how could transition services be commissioned better?
•A synthesis of learning from the research Programme on WHAT and HOW
to commission
•Testing commissioning guidance through local and national workshops

29. Our Programme – Collaboration
We are keen to learn from, work with and support other researchers and
research studies.
e.g. Seminar/Workshop series

30. Our Programme – Collaboration
We are keen to learn from, work with and support other researchers and
research studies.
e.g. Seminar/Workshop series
http://research.ncl.ac.uk/transition/
transition@ncl.ac.uk

32. Our Definitions
• ‘Transition’ is the purposeful, planned process that addresses the
medical, psychosocial and educational/vocational needs of adolescents
and young adults with chronic physical and medical conditions as they
move from child-centred to adult-oriented health care systems
• ‘Developmentally appropriate health care’ takes account of the
developmental needs and expectations of young people, and
acknowledges the need for progression to self management of chronic
conditions for those aged between 14 and 23

33. Our Definitions
•
Young people with ‘complex health needs’ are those with a physical, mental or
health impairment that has the potential for a substantial and long-term adverse
effect on their ability to carry out normal day-to-day activities
• ‘Proposed beneficial features’ are specific features of a transfer service which
have been recommended as good practice and for which there is preliminary
evidence of benefit