Presentation title to go here Delivering for children and young people- the work of the health outcomes forum Christine Lenehan Director,Council for Disabled Children Co-Chair, Children and Young People’s Health Outcomes Forum

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

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

Key Themes Health Promotion & illness Prevention Acute illness Long term conditions, Disability & Palliative Care Mental Health 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 ‘No decision about me without me’ Life Course Premature/ LBW Early Years School child Teenager Young Adult

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

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.

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

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

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

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]

Children & Young People’s Health Outcomes Strategy – External Engagement One of the key roles of the Forum was to facilitate as wide an input as possible into our eventual conclusions and recommendations. We used a range of mechanisms to do this including: –Discussion of Strategy at national, regional and local events –DH website based engagement including on-line feedback forms and webchats –Meetings between the Forum with key individuals and organisations –Use by the theme groups within the Forum of critical friends to inform their work –Engagement with children and young people on what they wanted the Strategy to addres s

Children & Young People’s Health Outcomes Strategy – Engagement The Forum also undertook a large number of meetings with key organisations as part of informing their work. These meetings included: NHS CB, CCGs, H&WBB, HEE, MHRA, Monitor, RCN, RCM, CMO, DfE and DH Ministers.

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

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

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

Children & Young People’s Health Outcomes Strategy – DH website based feedback There were over 1,000 individual sets of feedback received, which included around 600 feedback forms, comments made on the DH website, papers and reports submitted. Wide range of individuals and organisations submitted views and suggestions including: oParents groups submitting comments that have taken account of the views of their members onational stakeholders such as RCM, RCN,, Asthma UK, Action for Children took the opportunity to submit their views. oSystem based organisations such as NICE and the Care Quality Commission

Feedback – Key Issues which 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.

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

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

Outcomes continued Domain Four – Improvement Area Improving women and their families’ experience of maternity services Women’s experience of maternity services Improving the patient experience of CYP in healthcare settings Improving CYP’s experience of healthcare Domain Five – Improvement Area Improving the safety of maternity services Admission of full-term babies to neonatal care Delivering safe care to children in acute settings Incidence of harm to children due to ‘failure to monitor’

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 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

Public health outcomes contd Domain Four – Improvement Area Improving women and their families’ experience of maternity services Women’s experience of maternity services Improving the patient experience of CYP in healthcare settings Improving CYP’s experience of healthcare Domain Five – Improvement Area Improving the safety of maternity services Admission of full-term babies to neonatal care Delivering safe care to children in acute settings Incidence of harm to children due to ‘failure to monitor’

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 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

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 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

Children & Young People’s Health Outcomes Strategy – Outcomes & Indicators In finalising our recommendations in relation to outcomes and indicators we adopted an approach based on 3 categories. These are: –Strengthening of existing indicators –Adaptation of current indicators to make them more relevant to children –New outcomes and indicators

Children & Young People’s Health Outcomes Strategy – Methods for Assessing Proposed outcomes and indicators When the Forum has been considering its recommendations around outcomes and indicators it has focussed on two key areas. These are –Alignment of proposed outcomes and indicators with the domains in the NHS and PH Outcomes Frameworks –Alignment with a patient centred pathway

Children & Young People’s Health Outcomes Strategy – Outcomes and Indicators Patient Centred Pathway A number of questions have been developed by the Forum against each of the Domains in the Outcomes Frameworks as part of the patient centred approach eg in Domain 1 relating to preventing people from dying prematurely the patient question being used is ‘Am I getting the best treatment with the best outcomes?’ In Domain 6 relating to treating people in a safe environment the patient question is ‘Is my treatment safe?’

Children & Young People’s Health Outcomes Strategy – Outcomes and Indicators It is fair to say that the 4 themed groups initially established within the Forum came to very different views regarding the comprehensiveness of the current indicators within the NHS and PH Outcomes Framework. For example in the case of PH the view of the Forum is likely to be that the current indicators within the PH Outcomes Framework are already substantial in coverage for CYP and the recommendations focus on strengthening existing indicators rather than recommending new outcomes

Children & Young People’s Health Outcomes Strategy – Outcomes and Indicators However, 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 the approach we took in our final report

Children & Young People’s Health Outcomes Strategy – Outcomes and Indicators Emerging Themes There were some strong and common themes which emerged 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

Children & Young People’s Health Outcomes Strategy – Outcomes and Indicators Emerging Theme s 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

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

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

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

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

Children & Young People’s Health Outcomes Strategy –Themes for 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

Children & Young People’s Health Outcomes Strategy – Example recommendations Recommendations include –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

Children & Young People’s Health Outcomes Strategy – Example 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

SEND Next Steps DfE published in May an update of progress on its Green Paper relating to Children with Special Educational Needs and Disabilities which it issued last year. Within the update it set out how education, health and care services should work together to meet the needs of this group effectively. As part of this it asked us to advise on some specific issues relating to the role that health has to play in this agenda.

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.

Where are we now ? Report presented to the SOS at the end of July Some workstreams already planned/ being discussed – neuro disability data, paediatric rehabilitation, planning wider intelligence networks, next stages in improving GP training Formal response from Government delayed due to reshuffle but internal planning continues

Where are we now 2 Formal government response expected November New SOS and Children’s Minister now engaged It is likely the majority of recommendations will be accepted and these will form the basis of a Children and Young People’s Health Outcomes strategy with a clear implementation plan