Getting the Balance Right Adult Services Role in improving Transition

Helena GleesonLeicester Royal Infirmary

Representing RCP YAASG

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 transitionWhose fault is it?

Current health service

Paediatric services and paediatricians

Adult services and adult physicians

Primary Care and General Practitioners

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)

Where is the

responsibility?

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“

Emerging Adulthood

Emerging Adulthood 18-23 years Identity development in adolescence Identity exploration in emerging adulthood

JJ Arnett 2000Emerging adults vs adultsSimilar logical competenciesBUTDifferent social and emotional factorsDifferences in decision and risk taking

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

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“

UNICEF REPORT CARD 11, 2013

10% NEET24th in the

league table

Adolescent data 2011

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“

Continuity Description

Relational A therapeutic relationship with a named health professional

Longitudinal Care from as few professionals as possible, consistent with needs

Management Continuity of diabetes management through a common purpose and plan

Cultural Seamless progression from a child to adult service culture across service interfaces

Flexible Adjustment to the needs of an individual over time

Developmental Care which grows with the changing demands of the client group and works to facilitate that change

Informational and/orCross boundary

Excellent information transfer following the service user including effective communication between professionals and services

Smooth transition

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 incomefemale genderliving in areas with low physician supply

With controlling for all other factorsIndividuals with continuity of care were 77% less likely to be hospitalised than those with lack of continuity

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“

Don’t forget young people presenting in late adolescence or

young adulthood

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

Basic care for elderly 'lacking' BBC News - 10 hours agoBasic 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 agoRising 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 agoAround 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 ...

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

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

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)

Getting the Balance Right

RCPYoung Adult and Adolescent Steering Group

• Chaired by Dr Angela Robinson (Consultant GU Medicine)

• Last meeting representation from 12 specialist societies

• Training • Clinical governance, standards, and aspects of service

delivery• Young person involvement

• 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/decision-

making

‘Young adults’ as adult health service users: being an inpatient

28Bryony Beresford, The STEPP Project

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 five-day 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.

Type of admission by age UHL Data

11 to 15 16 to 19 20 to 240

2000

4000

6000

8000

10000

12000

ChildrensWomensSurgeryMedicine

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)

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

41%

In your ability to provide health promotion 29%

In your ability to communicate effectively 12%

In your ability to deal with physical health issues 6%

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

The curriculum

Healthy Development

Legal Framework

Communication & Consultation

Health promotion& Advocacy

Chronic Conditions & Transition

Concordance –Adherence

Youth FriendlyServices

Sexual &Reproductive Health

Substance Use & Misuse

Self Harm & Common Mental Health Problems

Overweight &Underweight

Common MedicalConditions

Core SpecialistLevel A

Level B

Level C

Level D

Paediatric

care

Adolescent care

Transfer

Young adult care Adult

care

The “Pull”

Supporting transfer to adult services

The “Push”

Monitoring “the pull” – DNA Policy

36 transferred to tertiary adult

service

2 no appointment sent

2 lost (early)

34 sent an appointment

10 failed to attend first

appointment

6 lost (4 early)

24 attended first appointment

5 failed to attend second

appointment

4 lost(3 early)

19 attended second

appointment

6 lost(2 early)

Gleeson et al. Clinical Endocrinology 2013

50% lost50% attended first two appointments

Indicative of engagement

Navigating “the pull” -Transitional care coordinator

Holmes-Walker 2007Retrospective cohort study of 191

young people with IDDM

Length of hospital stay

DKA admissions and readmissions

Reduction in HbA1c of 0.13% but greater in

those with HbA1c >11.1%

Cost neutral

Young Adult Clinics – improving the crash landing?

Harden P et al BMJ 2012

Getting the Balance Right

Healthcare systems &

training structures

Self management

of chronic disease

Principles of Adolescent

Medicine

T

Training for paediatric & adult HCP

Info & resources

Longer appointments

Adherence

Understanding health condition

Managing Health

condition

Growing capacity for self-care

PromotingautonomyConfidentiality

Psychosocial screening

Peer influences

Parents

Risk & protective

factors

Transitioncoordinators

Data systems

(Kennedy A & Sawyer SM 2008)

Summary

• Developmentally appropriate care NOT transition

• Continuity NOT models

• Training• All areas of adult services NOT just outpatients