Getting the balance right - Adult services role in improving transition Helena Gleeson Leicester Royal Infirmary Representing RCP YAASG 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”

1. Getting the Balance Right
Adult Services Role in
improving Transition
Helena Gleeson
Leicester Royal Infirmary
Representing RCP YAASG

2. What we know….
• Young people get lost to follow up around the
time of transfer and suffer a deterioration in
their health
• Young people are dissatisfied with current
provision of care during transition

3. Current health service
Paediatric services and
paediatricians
Adult services and
adult physicians
Primary Care and General Practitioners

4. Definition of Transition
"A 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"
(Society of Adolescent Medicine 2003)

5. Suggestion
“Paediatric and adult health care professionals
need to provide developmentally appropriate
health care for adolescents and young adults
with long term physical and medical
conditions addressing medical, psychosocial
and educational/vocational needs working
together when necessary to support continuity
of care“

6. Emerging Adulthood
Emerging Adulthood 18-23 years
 Identity development in adolescence
 Identity exploration in emerging adulthood
JJ Arnett 2000
Emerging adults vs adults
 Similar logical competencies
BUT
 Different social and emotional factors
 Differences in decision and risk taking

7. Developmental Delay in Young Adulthood
• Significantly delayed milestones (autonomy, psychosexual
and social development) in young adult survivors of
childhood cancer and end stage renal disease
Stam H et al, 2006
• Missed adolescent milestones (psychosocial and
vocational) in young adults with congenital heart disease
Lyon M et al, 2006
• Similar rates BUT DELAYED in adolescents with CF and
sickle cell compared to healthy peers
Britto MT, 1998

8. Suggestion
“Paediatric and adult health care professionals
need to provide developmentally appropriate
health care for adolescents and young adults
with long term physical and medical
conditions addressing medical, psychosocial
and educational/vocational needs working
together when necessary to support continuity
of care“

9. UNICEF REPORT
CARD 11, 2013
10% NEET
24th in the
league table

10. Adolescent data 2011

12. Suggestion
“Paediatric and adult health care professionals
need to provide developmentally appropriate
health care for adolescents and young adults
with chronic physical and medical conditions
addressing medical, psychosocial and
educational/vocational needs working
together when necessary to support
continuity“

14. Smooth transition
Continuity
Description
Relational
A therapeutic relationship with a named health
professional
Care from as few professionals as possible,
consistent with needs
Continuity of diabetes management through a
common purpose and plan
Seamless progression from a child to adult
service culture across service interfaces
Adjustment to the needs of an individual over
time
Care which grows with the changing demands
of the client group and works to facilitate that
change
Excellent information transfer following the
service user including effective
communication between professionals and
services
Longitudinal
Management
Cultural
Flexible
Developmental
Informational
and/or
Cross boundary

15. DM-related hospitalization rates increased from 7.6 to 9.5 cases
per 100 patient-years in the 2 years after transition to adult care
(P .03).
Previous DM-related hospitalizations,
lower income
female gender
living in areas with low physician supply
With controlling for all other factors
Individuals with continuity of care were 77% less likely to be
hospitalised than those with lack of continuity

16. Suggestion
“Paediatric and adult health care professionals
need to provide developmentally appropriate
health care for adolescents and young adults
with chronic physical and medical conditions
addressing medical, psychosocial and
educational/vocational needs working
together when necessary to support
continuity“

17. Don’t forget young people
presenting in late adolescence or
young adulthood

18. Adult services are well aware of the
importance of age appropriate care

19. Basic care for elderly 'lacking'
BBC News - 10 hours ago
Basic care for the elderly in hospitals and care homes in England is still not
good enough, the regulator says. The Care Quality Commission
report, based on a snapshot of services, found about a third failed to meet
all the standards for nutrition and dignity.
More hospitals are failing to treat their patients with dignity: Fifth don't
meet ...
Daily Mail - 14 hours ago
Rising numbers of hospitals are failing to respect the dignity and privacy of
patients, the care watchdog warns. Nearly a fifth don't meet national
standards for ensuring patients – many of them elderly – are treated with
proper compassion and consideration.
Elderly still suffer from lack of basic care
Public Service - 4 hours ago
Around 20 per cent of NHS hospitals and care homes failed to treat elderly
patients with dignity in 2012 and privacy was not as well respected as it
was in 2011, according to the Care Quality Commission (CQC). Reporting
on inspections that took place last ...

20. YP health should also be way up the
agenda and in the media
• Domain 1 - prevent young people from dying
prematurely
• Domain 2 - enhance the quality of life for
young people with long term conditions
• Domain 4 - ensure young people have a
positive experience
• Domain 5 - allow young people to be treated
and cared for in a safe environment and
protecting them for unavoidable arm

22. YP health should be way up the
agenda
• Domain 1 - prevent young people from dying
prematurely
• Domain 2 - enhance the quality of life for
young people with long term conditions
• Domain 4 - ensure young people have a
positive experience
• Domain 5 - allow young people to be treated
and cared for in a safe environment and
protecting them for unavoidable arm

23. 80.7% of 16–24 year olds vs 89.2% of older adults
report good care (Emergency Department Survey
2008)
86.5% of 16–24 year olds vs 92.7% of older adults
reported good care (Inpatient Survey 2009)

25. Getting the Balance Right

26. RCP
Young Adult and Adolescent Steering
Group
• Training
• Clinical governance, standards, and aspects of
service delivery
• Young person involvement
• Chaired by Dr Angela Robinson (Consultant GU
Medicine)
• Last meeting representation from 12 specialist
societies

28. ‘Young adults’ as adult health service
users: being an inpatient
• Acute admissions the most difficult/negative aspect of
transferring from paediatrics
• Lack of information/preparation prior to inpatient episode
– not covered in transition preparation/planning
– expectations based on experiences in children’s wards
• parents present 24/7 vs visiting hours only
• health and mental conditions of other patients
• Young adults / their conditions: ‘unusual’ patient group
– lack of knowledge/understanding of condition
• self-care needs
• parental involvement in information sharing/decisionmaking
28
Bryony Beresford, The STEPP Project

29. Unnecessary Deaths!
• Top doctor quits over death of his patient at
Salford Royal Hospital
• 28 Jul 2011 12:17 Top doctor admitted he had
‘failed’ Mark Holland, who suffered two heart
attacks while being treated in Salford Royal
Hospital. Mark, 24, had a rare metabolic disorder
and needed a special diet and liquids. But a fiveday inquest heard he had no treatment
management plan, monitoring of his heart was
‘indequate,’ and suggestions by his family about
how to look after him were ignored.

30. Type of admission by age UHL Data
12000
10000
8000
Childrens
6000
Womens
Surgery
4000
Medicine
2000
0
11 to 15
16 to 19
20 to 24

31. Core Medical Trainee
Pilot Questionnaire
• 59% no specific training/teaching in adolescent health but
even of those that said they had teaching 71% said it was
minimal
• 100% of CMTs had regular exposure to young people
• AMU was the commonest place for this to happen.
• Reason for admission
– 53% DSH plus or minus intoxication
– 65% chronic conditions (T1DM, Crohns)

32. Scenario – 16 year old admitted with
D&V with evidence of self harming
compared with older people how competent/confident do you feel
Less
competent/confident
In your ability to help the patient with self management
53%
In your ability to direct them to community resources
53%
In your ability to identify vulnerable patients
53%
In your ability to deal with mental health issues
47%
In your ability to assess capacity and navigate consent
issues
In your ability to provide health promotion
41%
In your ability to communicate effectively
12%
In your ability to deal with physical health issues
6%
29%

33. Core Medical Trainees
Competencies in adolescent health
August 2012
• History taking
• The patient as central focus of care
• Managing long term conditions and promoting
patient self care
• Relationship with patients and communication
within a consultation
• Health promotion and public health
• Principals of medical ethics and confidentiality

34. The curriculum
Level A
Core
Specialist
Level B
Sexual &
Reproductive Health
Healthy
Development
Level C
Substance
Use & Misuse
Level D
Legal
Framework
Communication
& Consultation
Chronic Conditions
& Transition
Self Harm & Common
Mental Health Problems
Health promotion
& Advocacy
Concordance –
Adherence
Youth Friendly
Services
Overweight &
Underweight
Common Medical
Conditions

35. Supporting transfer to adult
services
Paediatric
care
Adolescent
care
Transfer
The “Push”
The “Pull”
Young
adult
care
Adult
care

36. Monitoring “the pull” – DNA Policy
2 no
appointment
sent
36 transferred to
tertiary adult
service
2 lost
(early)
10 failed to
attend first
appointment
34 sent an
appointment
6 lost
(4 early)
5 failed to attend
second
appointment
4 lost
(3 early)
50% lost
19 attended
6 lost
second
50% attended first two appointments (2 early)
appointment
Indicative of engagement
24 attended first
appointment
Gleeson et al. Clinical Endocrinology 2013

37. Navigating “the pull”
-Transitional care
coordinator
Holmes-Walker 2007
Retrospective cohort study of 191
young people with IDDM
Reduction in HbA1c of
0.13% but greater in
those with HbA1c
>11.1%
DKA admissions and
readmissions
Cost neutral
Length of hospital stay

38. Young Adult Clinics – improving the
crash landing?
Harden P et al BMJ 2012

39. Getting the Balance Right

40. Training for paediatric &
adult HCP
Info &
resources
Data systems
Healthcare
systems &
training
structures
Transition
coordinators
Risk &
protective
factors
Parents
Principles
of Adolescent
Peer
influences
Medicine
T
Longer
appointments
Understanding
health condition
Self
management
of chronic
disease
Adherence
Managing
Health
condition
Growing capacity
for self-care
Psychosocial
screening
Confidentiality
Promoting
autonomy
(Kennedy A & Sawyer SM 2008)

41. Summary
• Developmentally appropriate care NOT
transition
• Continuity NOT models
• Training
• All areas of adult services NOT just outpatients