1. Children and Young People’s Health Outcomes Forum
Presentation to Natsip
Christine Lenehan
Director Council for Disabled Children
Children and Young People’s Forum Co-Chair

2. Children and Young People’s Health Outcomes Strategy – Commission by SoS
In January 2012 SoS for Health announced a development of a Children and Young People’s Health Outcomes Strategy
He asked for the Strategy to deliver against 3 key outputs these are:
The health outcomes that matter most for children and young people
How well these are supported by the NHS and Public Health Outcomes Framework
How the different parts of the health system will contribute and work together in the delivery of these outcomes

3. Children & Young People’s Health Outcomes Strategy – Mechanism for Development
To develop the Strategy SoS established an independent Children & Young People’s Health Outcomes Forum
Membership of the Forum brings together a wide range of expertise, commitment and interest in improving healthcare for children & young people
Members were invited as individuals rather than as representatives of organisations

4. Understanding the challenge at the beginning
The scale of the task
Managing expectations
Delivering for key audiences
Managing cultures
Moving forward but….
Delivering the art of the possible

5. CHILDREN & YOUNG PEOPLE’S HEALTH OUTCOME FORUM:
‘No decision about me without me’
Key Themes
Health Promotion & illness Prevention
Acute illness
Long term conditions,
Disability & Palliative Care
Mental Health
Life Course
Premature/ LBW
Early Years
School child
Teenager
Young Adult
Cross cutting Issues 1
Integration
Medicines for CYP
Safeguarding
Looked After Children
Inequality
Teenagers, young adults & Transition
Cross cutting Issues 2
Information and Information Technology
Education, Training & Workforce
Research
General Practice
Networks

6. National Context
Children lose out to demands of adults in NHS, says report Failure to provide more than 'mediocre services' argues Sir Ian Kennedy 6 6

7. Children & Young People’s Health Outcomes Strategy – Why the need?
The starting point for the Forum’s work was an acceptance of the findings in a number of reports regarding failing of the healthcare system in relation to children and young people.
The most prominent of these is the Ian Kennedy Report 2010 which outlined a range of areas and issues with needed to be addressed
SoS made clear that the New Health System as set out in the Health and Social Care Bill needed to make its contribution to improvements in health outcomes for children and young people.

8. Children & Young People’s Health Outcomes Strategy – Why the need?
The starting point for the Forum’s work was an acceptance of the findings in a number of reports regarding failing of the healthcare system in relation to children and young people.
The most prominent of these is the Ian Kennedy Report 2010 which outlined a range of areas and issues with needed to be addressed
SoS made clear that the New Health System as set out in the Health and Social Care Bill needed to make its contribution to improvements in health outcomes for children and young people.

9. Children & Young People’s Health Outcomes Strategy – Why the need?
A number of data sources show that in a number of key areas things are going in the wrong direction when it comes to CYP health and healthcare needs eg :
Obesity prevalence in Yr6 (age 10 – 11) has increased over the past 5 yrs meaning that by 2010/ % of girls and 20.6% of boys were classed as obese within this age group
Rising rates of sexually transmitted infections eg chlamydia has increased by 25% over the past 10 yrs
Number of hospital admissions associated with diabetes, asthma or epilepsy among 11 – 19 yr olds has increased by 26% since 2002/03

10. In some areas which have improved the rate of reduction has been such that our performance in comparison to other EU countries has actually worsened. This is reflected in the chart below relating to rates of death in children from all causes

11. Children & Young People’s Health Outcomes Strategy – Key Principles
A key principle that the Forum agreed and adopted at an early stage was the need for its outputs to reflect a life course approach
By using this approach we are clear that there are real improvements to be secured in the life chances of all CYP through ensuring a healthier life through childhood, adulthood and old age

12. Children & Young People’s Health Outcomes Strategy – Key Themes & Issues
Taking the life course approach the Forum identified 4 themes that needed to be addressed if the Strategy was to be comprehensive in meeting the needs for CYP. These were:
Health Promotion and Illness prevention [Co-Leads Ann Hoskins/Barbara Hearn]
Long Term Conditions, Disability and Palliative Care [Co-Leads Gillian Baird/Colin Green]
Mental Health [Co-Leads Margaret Murphy/Lisa Christensen]
Acute Illness [Co-Leads Carol Ewing/Eric Kelly]

13. Children & Young People’s Health Outcomes Strategy – Children & Young People’s Voice
We were clear that if we were to meet our remit to identify the health outcomes which matter most to children and young people, our recommendations must be shaped by listening to their views.
We have heard this ‘voice’ in different ways, including
A commission from the DH to the National Children’s Bureau to capture the findings from consultations with children and young people on their views on their health and experience of health services

14. Children & Young People’s Health Outcomes Strategy – Children & Young People’s Voice
A number of events across the country where children and young people have come together to discuss and set out what contribution they wanted from the healthcare system to support them in living positive and fruitful lives and;
Discussions with children and young people about our draft recommendations to ensure that we have captured their key priorities

15. Children & Young People’s Health Outcomes Strategy – Key messages from Children & Young People
From the engagement already undertaken with CYP a number of key issues that they want the Strategy to address have emerged. These are too many to fully set out but here are some examples:
Better access to child friendly information
Care by professionals who have had training in working with CYP
Care to be in environments which are appropriate to their age and needs
Appropriate and efficient system for transfer from child to adult services
CYP want to have a say and be listened to in decisions about their health and take a lead where able

16. Feedback – Key Issues which have emerged
There was a wide range of areas covered in the feedback.
The majority of responses were focussed around children with long-term conditions and disabilities
Some responses focussed on very specific illnesses, issues and conditions such as allergies, diabetes, asthma and a range of rare conditions.
However, a large number of responses were more holistic in terms of the issues they raised and the actions needed to address them.

17. Children & Young People’s Health Outcomes Strategy – Outcomes & Indicators
When considering what the Forum might recommend in relation to outcomes & indicators we acknowledged and took account that we were not starting from a blank sheet
There are already a large number of child specific indicators which are included in the NHS and PH Outcomes Frameworks
We also recognised that there is also the Commissioning Outcomes Framework being finalised and this will similarly need to reflect the outputs from this Forum

18. Child Specific Outcomes & Indicators in the NHS Outcomes Framework
Examples of these:
Domain One – Improvement Area
Reducing deaths in babies and young children
Infant mortality
Neonatal mortality and stillbirths
Domain Two – Improvement Area
Reducing time spent in hospital by people with long-term conditions
Unplanned hospitalisation for asthma, diabetes and epilepsy in under 19s
Domain Three – Improvement Area
Preventing lower respiratory tract infections (LRTI) in children from becoming serious
Emergency admissions for children with LRTI

19. Child Specific Outcomes & Indicators in the PH Outcomes Framework
Examples of these
Domain One – Improving the wider determinants of health
Children in poverty
School readiness (placeholder)
Pupil absence
First time entrants to the youth justice system
16-18 year olds not in education, employment or training
Domain Two - Health improvement
Low birth weight of term babies
Breastfeeding
Smoking status at time of delivery
Under 18 conceptions
Child development at 2 – 2.5 years (Placeholder)
Excess weight in 4-5 and year olds
Hospital admissions caused by unintentional and deliberate injuries in under 18s
Emotional well-being of looked after children (Placeholder)
Smoking prevalence – 15 year olds (Placeholder)
Domain Three – Health protection
Chlamydia diagnoses (15-24 year olds)
Domain Four - Healthcare public health and preventing premature mortality
Infant mortality
Tooth decay in children aged 5

20. Children & Young People’s Health Outcomes Strategy – Outcomes & Indicators
The Forum have adopted an approach to outcomes and indicators which is based 3 categories.
These are:
Strengthening of existing indicators
Adaptation of current indicators to make them more relevant to children
New outcomes and indicators

21. Children & Young People’s Health Outcomes Strategy – Outcomes and Indicators
In the case of children with disabilities, long term conditions and palliative care as well as the groups looking at acute illness and mental health the initial conclusions are that the existing indicators do not adequately meet the needs of CYP.
This is reflected in our final report

22. Children & Young People’s Health Outcomes Strategy – Outcomes and Indicators Emerging Themes
For the NHS Outcomes Framework these include
Time from presentation at NHS setting to definitive diagnosis
Time from presentation at NHS setting to establishment of care plan
Extension of indicators focussed on a limited age group within CYP eg infant to the whole CYP population
Medication errors that reach the patient
Emergency re-admissions of children within 48 hrs of discharge
Outcome around integrated care
Outcomes around transitional care

23. Children & Young People’s Health Outcomes Strategy – Outcomes and Indicators Emerging Themes
For the PH Operating Framework most of these are related to extensions of current indicators to strengthen them for CYP. Areas included are:
Extension of suicide measure to look at rate in CYP
Extension to measurement of weight to cover adolescent age group
Educational attainment and progress to be used as measures of effectiveness of healthcare for children with LTCs and disabilities

24. Children & Young People’s Health Outcomes Strategy – Outcomes and Indicators Emerging Themes
For the PH Operating Framework most of these are related to extensions of current indicators to strengthen them for CYP. Areas included are:
Extension of suicide measure to look at rate in CYP
Extension to measurement of weight to cover adolescent age group
Educational attainment and progress to be used as measures of effectiveness of healthcare for children with LTCs and disabilities

25. Children & Young People’s Health Outcomes Strategy - System
For these outcomes and indicators to actually get traction it needs to be clear what the role of the health system as a whole and the individual elements within it are in terms of their achievement.
This is why we have spent significant time as a Forum seeking to understand how best we can position our recommendations.
The following slide seeks to reflect the system components that we have taken account of in our work

26. Secretary of State and Department of Health
PARLIAMENT
Secretary of State and Department of Health
Healthcare, public health, adult social care policy
Mandate, Outcomes Framework, Framework Agreement
Outcomes Framework
NHS Commissioning Board
Eg Equality and Diversity council
Advice.
challenge
PHE
Local Authorities
Public Health
Adult Social Care
Clinical Commissioning Groups
NHS Care
Health and Wellbeing Board
Local account-
ability
Local account-
ability
Contracts
Framework Agreement
Framework Agreement
Regulation
Care Quality Commission
Monitor
Providers
NHS Trusts, FTs and other providers (VCS, private sector)
Regulation
Regulation 26

27. Children & Young People’s Health Outcomes Strategy – The System
We applied 3 lenses in looking at the system, these were:
The prospective of the child and their family on their journey through the system
Those cross cutting themes which the Forum looked at in relation to outcomes due to their particular importance for a wide range of impacts for CYP
The organisations and institutions in the system and the related mechanisms, tools and incentives following the Health & Social Care Act 2012

28. Children & Young People’s Health Outcomes Strategy – The System, Early Recommendations from the Forum
Due to decisions being made in advance of the completion of the Forum’s work we wrote to the SoS in April with 3 early recommendations these related to:
Increased training for GPs in relation to working with CYP
The need for all organisations within the new health system to adopt a life course approach in terms of its operating model
The establishment of a strategic clinical network at a national level for CYP

29. Children & Young People’s Health Outcomes Strategy – Emerging Themes for further Recommendations
These are:
Leadership, accountability and assurance
Patient voice
Commissioning at all levels
Partnership and integration
Safe and Sustainable services
Workforce Education and Training
Knowledge and Evidence
Incentives and funding flows

30. Children & Young People’s Health Outcomes Strategy – Examples of recommendations
To promote effective integration of services across health, education and social care the establishment of the NHS Number as being the unique identifier across all the system
All health system organisations need to be able to demonstrate how the voice of CYP has influenced their decisions and priorities
All data should be collected and published in a way that allows you to be better able to assess progress at frequent points in a child’s development eg data should be collected and published based on key transition points such as leaving primary school

31. Children & Young People’s Health Outcomes Strategy – Examples of recommendations cont’d
Recommendations on improving safety in relation to children’s medicines both to improving prescribing accuracy and safety in delivery
The NHS Mandate truly reflects necessary objectives which will deliver health improvements from everyone from cradle to grave
Child Health Records currently captured through the Red Book should be transferred to an electronic system accessible to both professionals and patients to enable real time working

32. SEND Issues – CYP Outcomes Forum
Recommendations from Outcomes Forum and early findings from the Green Paper pathfinders will be considered and used to inform the Children and Families Bill on joint commissioning.
Reflect on the NHS Future Forum’s recommendations on Integrated Care and link to own recommendations and outcomes for disabled children and those with SEN.
To consider the routes of redress available within the NHS to children, young people and their families as part of the Outcomes Forum’s recommendations.
NHS Future Forum working group asked to look at securing improvements for this group of children as part of its work considering how the constitution can be strengthened.