Researching transition - Tim Rapley

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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”

Transcript of Researching transition - Tim Rapley

http://research.ncl.ac.uk/transition/

transition@ncl.ac.uk

Tim RapleyInstitute of Health & SocietyNewcastle Universitytim.rapley@ncl.ac.uk

Development work

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

Development work - ‘Proposed beneficial features’

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

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

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

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.

Our Programme - Overall purpose

Our Programme - Lead applicant and co-applicants

Our Programme - Collaborators

Our Programme – Research Question

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

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

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

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

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

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’

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

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’

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)

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

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

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?

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

Our Programme – Collaboration

We are keen to learn from, work with and support other researchers and

research studies.

e.g. Seminar/Workshop series

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

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

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