On the Edge of Adulthood:
Children’s Rights & Health Protection
Dr Alison Westman
Consultant Adolescent Psychiatrist &
Medical Director,
Huntercombe Hospital Edinburgh
Children & Young
People’s Rights
• Children’s rights & adolescents’ rights in
health services
• UNCRC
– Protection from harm
– Prevention of discrimination
– Participation in decisions
– Provision of the essentials for survival &
development
Protection from Harm
Unmet need
– What is important about adolescence and
identifying and meeting health needs of
adolescents?
– Does policy development support this?
– How do service structures enable professionals to
meet the need?
Protection from harm
“The effects of poor health during
the teenage years can last a lifetime.
Keeping adolescents healthy is a
valuable investment in the nation’s
future”
(Chief Medical Officer’s report, England, 2007).
Protection from harm
• Sir Ian Kennedy’s Report ‘Getting it right for children and
young people’, described teenagers as
• “… ’a forgotten group’, caught between child and adult, and
therefore between bureaucratic barriers and professional
spheres of influence”
(p38).
• “One of the main cultural obstacles for young people is the
lack of recognition of them as distinctly different from children
as well as adults ......”
Kennedy Ian (2010) Getting it right for children and young people; Overcoming cultural barriers in the nhs so as to meet their needs.
Adolescent health in the UK
today: Update 2012
• Why encourage a specific focus on adolescent
health?
– Increased risk
– Long-term benefits for the individual
– Long term benefits for everyone
– Information needs
– Service development needs
Hagell A, Coleman J (2012) Adolescent health in the UK today: Update 2012. Association for Young People’s Health
Adolescent health in the UK
today: Update 2012
,
Hagell A, Coleman J (2012) Adolescent health in the UK today: Update 2012. Association for Young People’s Health
Protection from harm:
Mental health needs
• Challenging period of development & change in all areas of functioning.
Protection from harm:
Impact of Policy
• Longer term themes
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Health inequalities
Transition from paediatric to adult services
Focus on outcomes
Young people’s participation in their own healthcare
Young people’s participation in service development: Cultural shift &
legislative requirements for involvement of young people
• Central Government Departments: Framework of core principles for
involvement of young people across depts; Action Plans required from all
depts to evidence this; increasing access to information (websites, reports
of consultations).
• Central Government & Local level: expectation of ‘routine’ involvement in
service development
Protection from harm:
Impact of Policy
• Recent policy developments:
– Restructuring within health services, including:
• Children & Young People’s Outcome Board, led by the Chief Medical Officer,
• A new Children & Young People’s Health Outcome Forum.
– Relevant policy statements about adolescent health included:
• “Achieving equity and excellence for children” (2010), the Coalition Government’s
response to the Kennedy review on children and young people’s health.
• ‘Improving Children & Young People’s Health Outcomes: a system wide response’
(2013), the Coalition Government’s response to the Children & Young People’s
Health Outcome Forum Report (2012).
– IAPT (Improving Access To Psychological Therapies)
Prevention of Discrimination:
Special Groups
• Young people with learning disability:
– UN Convention on the Rights of Persons with Disabilities (UNCRPD)
– Integrated CAMHS; In-patient services
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Young people with other disability – hearing loss
Looked after children
Adolescents from BME communities
Asylum seekers
Young offenders – increased levels of mental health need; increased risk of
learning difficulties.
• Transitions to adult services
– Managing to ensure continuity of care; Change in emphasis – individual & family; social
and emotional needs; from education to occupation.
– ADHD; emerging Personality Disorder; enduring & severe mental health problems.
Participation in Decisions
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Participation
Confidentiality
Autonomy
Consent
Participation in Decisions
• Participation –
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In decisions regarding their care
In the quality of services received
In the development of services
By being informed; giving an opinion; being able to influence a
decision; having authority to be the main decider.
• Requires:
– access to mechanisms that allow them a voice,
– provision of and need for accessible information
– Identification of factors which prevent or facilitate children's
participation.
Franklin A, Sloper P (2005) Listening & Responding? Children’s participation in health care within England. International Journal of
Children’s Rights 13. ½, 11-29
Participation in Decisions
• Consent
– 16-18 year olds – presumed competent to consent unless evidence to contrary
– If not competent, decision-making moves to person with parental responsibility
– person with parental responsibility may request access to medical records but
competent child must consent.
– Under 16 years – not automatically deemed to be competent to consent to treatment
but may assume such responsibility if capacity assessed.
– However, even a legally competent adolescent may have decision to refuse treatment
over-ruled by parent.
• Gillick Competency/Fraser Guidelines
• Mental Capacity Act for over 16 years olds
Participation in Decisions
• Barriers to Participation:
– Implications of traditional views about children’s status and concerns
about adult/child relationships; children’s lack of power
– Complexity & bureaucratic nature of organisations
– Adult attitudes towards capabilities & competence of children;
protection of children
– Lack of training & research evidence to promote participation
– Lack of time, resources, funding
– Young people themselves – attitudes towards adults; lack of
confidence; lack of resources (eg, transport); other competing
priorities.
Franklin A, Sloper P (2005)
Participation in Decisions
• Factors that facilitate participation:
– Clarity & shared understanding
– Staff training & development
– Using flexible & appropriate methods
• Using multi-media approaches & other methods; resources such as communication
aids, interpreters; use of advocates, mentors; gaining familiarity through multiple
contacts; flexibility over ways children communicate; independent facilitators
supporting confidentiality; making participation fun & rewarding. (Cavet & Sloper,
2004)
– Organisational culture & systems
• Listening culture; commitment.
– Assessing & evidencing the impact of participation
Franklin A, Sloper P (2005)
Mechanisms to facilitate participation
• Improving Children & Young People's Outcomes (2013):
– Modernisation health & social care – local emphasis
– Bodies identified as having specific roles in pursuing best
interests of children & young people include:
• NHS CB (Commissioning Board; Public Health England – establishes
local health & wellbeing boards;
• NHS Trust Development Authority;
• Health Education England;
• Healthwatch England – appointment of leading children’s
advocate, Christine Lenehan as a co-chair; local Healthwatch
organisations;
• DH; Clinical Reference Groups; CQC;
Mechanisms to facilitate
participation
• Specific initiatives involving children
– CQC consultation over 3 year
strategic direction & involvement in
consultation activity;
– Support from DH for ‘You’re
Welcome’
Participation in Decisions
• You’re Welcome
– Quality Criteria for local areas to:
– involve young people in service improvement
– enhance patient experience
– increase young people’s opportunity to share in decisions about
their health
– Summary of 10 themes
• Access; Publicity; Confidentiality and consent; Environment; Staff training,
skills, attitudes and values; Joined-up working; Involvement in monitoring and
evaluation of patient experience; Health issues for young people;
• Sexual and reproductive health services; Targeted and specialist CAMHS
Mechanisms to facilitate
participation
• Criticisms:
– Focus of change and development is not specific
for young people
– Services appear more fragmented and locally
based; ? more competition
– What will be the impact of changes on equality in
outcomes & safeguarding?
– What will be the overall impact for young people?
Provision of Essentials for Survival &
Development
• Access to services able to respond to all levels of
need (mild, moderate & severe)
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Developmentally appropriate and approachable services
Location
Availability & resources
Professional training
• Transition from Children’s Services to Adult
• Responses: Integration & Partnership – e.g.,
government, central & local; statutory & nonstatutory; other providers; professional bodies.
Tiers of service for young people with
mental health difficulties
Provision of Essentials for Survival
& Development
• Mental Health Provision:
– Structures are available & under constant development.
– Difficulties:
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High level of demand – 10-20% of the adolescent population
Waiting times can be long; threshold for access increased
Training of professionals not always adequate
Difficult to make complaints
Services are being cut because of reductions in budgets
State of Children’s Rights Report (2012)
In conclusion…
• There is a lot happening that is very positive and shows:
– awareness of the importance of young people’s health;
– positive efforts to facilitate their involvement and effective
participation at Central Government and local levels and welcoming
other stakeholders;
– and to provide necessary mechanisms
• But…
– That tends to be in the context of grouping young people with
children, or families, or all ages.
– Mechanisms are numerous and diverse; joining up processes to
demonstrate effective outcomes & make the process rewarding and
reinforcing for young people will be extremely difficult.
– Economic conditions & budgetary restrictions leading to service
constraints.