1. On the Edge of Adulthood: Children’s Rights & Health Protection
Dr Alison Westman
Consultant Adolescent Psychiatrist & Medical Director,
Huntercombe Hospital Edinburgh

2. 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
Firstly it is clear that many young people are not getting either the services or the information that they need to manage their health effectively. Polls taken by the UK Youth Parliament indicate that over 90% of young people want better sex and relationships education. Surveys show that many young people are ignorant about the services in their locality (Balding, 2009), whilst studies of adolescents’ use of GP services show that, whilst young people want to use primary care, they are sometimes unaware of their rights to confidentiality, and wish to see a doctor who is more understanding of teenage issues. Research also shows that adolescent patients get shorter consultation times than adults in the GP surgery, and that many young people struggle to get appointments at times that are convenient for them (Macfarlane and MacPherson, 2007).
Key Facts
 There are 4.1 million young people aged living in the UK.
 10-20% of young people have a diagnosable mental health disorder.
 Half of all lifetime psychiatric disorders start by the midteens.
 Mental health problems in adolescence are associated with suicide, drug and alcohol misuse, teenage pregnancy and long-term
social and economic disadvantage
 The prevalence of mental health problems in young people attending general practice is more than double that in the community.
 General practice is an appropriate setting for early detection and management of mental health problems in young people.

3. Unmet need Protection from Harm
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?

4. 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).

5. 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.

6. 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 Association for Young People’s Health
Increased risk: Adolescence is a period of life when many people will engage in behaviours which carry risks for their health, either because of lack of information, peer and societal pressure, or personal vulnerability. In addition some may be aware of the risks, but lack the skills and strategies to avoid them.
 Long-term benefits for the individual: Intervening at this age point helps improve adult health outcomes1, and is in line with young people’s rights under the UN Convention on the Rights of the Child to the “highest attainable standard of health”.
 Long term benefits for everyone: Improving services to adolescents will lead to long-term cost benefits for the
NHS and other services. For example, of every £8 spent on acute hospital care in the UK, £1 goes on diabetes, which also absorbs 7% of the UK drug bill2. Tackling adolescent overweight will reap positive rewards in later years.
 Information needs: We need better information on services and health management tailored specifically for young people. Surveys show that many young people are ignorant about the services in their locality,3 whilst studies of adolescents’ use of GP services show that, whilst young people want to use primary care, they are sometimes unaware of their rights to confidentiality, and wish to see a doctor who is more understanding of teenage issues.4
 Service development needs: We need more support for development of youth-friendly services. Research shows that adolescent patients get shorter consultation times than adults in the GP surgery, and that many young people struggle to get appointments at times that are convenient for them.5 Young people report lower satisfaction with primary care than older adults.6 Many doctors are unaware that young people attend their GPs two or three times a year.7

7. Adolescent health in the UK today: Update 2012 ,
Two general views of adolescent health:
adolescence as a time of general good health and physical fitness. This is not a life period dominated by the big threats of older age & medical advances have helped in the management of chronic conditions such as asthma and childhood diabetes.
much to be worried about; widespread use of alcohol, rising levels of obesity and worrying rates of sexually transmitted infections.
There have been significant improvements in overall health outcomes in the last few decades among all age groups apart from adolescence.
For example, mortality rates amongst young people aged and have risen above rates for those in the 1-4 age group, a reversal of historical mortality trends.
Hagell A, Coleman J (2012) Adolescent health in the UK today: Update Association for Young People’s Health

8. Protection from harm: Mental health needs
Challenging period of development & change in all areas of functioning.

9. Protection from harm: Impact of Policy
Longer term themes
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

10. 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)
Recent policy developments
The last year has seen unprecedented levels of debate about how to commission and structure health services in England, with repercussions for the other three branches of the NHS within the UK.
The Health and Social Care Bill - passed its final hurdle in the House of Lords at the time of writing (April 2012).
Clinical commissioning groups will take over commissioning from Primary Care Trusts, and a new regulator, Monitor, will protect patients’ interests, with patient voices being represented in another new national body, HealthWatch.
Health and Wellbeing Boards should provide critical integration between the NHS and local authority services.
One of the most controversial elements of the proposals relates to likely increase in private sector providers integrated into the NHS.
In combination with these changes, a new body, Public Health England, will set national public health policy, with responsibility for measuring need and delivering being delegated to Local Authorities.
It is not yet clear what these developments will mean for the development of policy for young people in England, nor what lessons we might draw for other systems. Although they are not the primary focus of much of this debate, there is no doubt that young people are on the agenda at the moment.
Recent relevant policy statements about adolescent health have included “Achieving equity and excellence for children” (2010), the Coalition Government’s response to the Kennedy review on children and young people’s health.
The framework provided by the Department of Education’s ‘Positive for Youth’ policy statement also included two health related outcomes: the percentage of year olds misusing drugs and alcohol, and the percentage of conceptions per year olds.24
However, there have been some concerns expressed by paediatricians, who have suggested that equality in outcomes and child safeguarding might both be more difficult to maintain in a more fragmented and locally-based health system containing more elements of competition.25
But none of the existing commentary is specific to adolescence; in the view of AYPH, this is a useful moment to interject a plea for this age group to receive attention as the next stage of the reforms unfold. They are of course included in the development of the Children and Young People’s Health Outcomes Strategy, mentioned above, and it is critical that this document makes a distinction between outcomes for younger age groups and outcomes for adolescents.
A final policy initiative that is worth mentioning is the Children and Young People’s Improving Access to Psychological Therapies project (IAPT). The IAPT project is rolling out NICE approved psychological

11. 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
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.

12. Participation in Decisions
Confidentiality
Autonomy
Consent

13. Participation in Decisions
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

14. 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

15. 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)

16. 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)

17. 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;

18. 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’

19. 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

20. 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?

21. Provision of Essentials for Survival & Development
Access to services able to respond to all levels of need (mild, moderate & severe)
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 & non-statutory; other providers; professional bodies.

22. Tiers of service for young people with mental health difficulties

23. Provision of Essentials for Survival & Development
Mental Health Provision:
Structures are available & under constant development.
Difficulties:
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)

24. 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.