Children and Young People’s Health Outcomes Forum and Strategy

1. Children and Young People’s Health Outcomes Forum and Strategy Outcomes; Themes and Recommendations Ian Lewis Children and Young People’s Forum Co-Chair NPPG Liverpool 10th November 2012

2. If UK healthcare was equivalent to best in Europe • 5 children /day would survive • 1600+ / year would not die • >100,000 life years saved each year Most of which would be as productive adults

3. Mortality in Childhood UK compared to European 12

4. Current UK Outcomes • UK has a higher all-cause childhood mortality rate compared with Sweden, France, Italy, Germany and Netherlands. • Death rates for illnesses that rely heavily on first-access services (e.g. asthma, meningococcal disease, pneumonia) are higher in the UK than these other European countries • Survival rates for childhood cancer lower than much of W. Europe • Diabetic control is poorer and deaths from DKA higher in UK

5. Some costly failures of care... • 26% of deaths - “identifiable failure in the child’s direct care” 43% of deaths – “potentially avoidable factors” (CEMACH 2008) • Half of children subsequently found to have meningococcal infection are sent home from the first primary care consultation • Approximately 75% of admissions of children with asthma could have been prevented with better primary care • Over a third of short stay admissions in infants are for minor illnesses that could have been managed in the community

6. Issues in General Practice for Children and Young People Six-fold variation in A&E attendances Age <19yrs by GP practice of registration 6 month period Nationally – 45% of GP trainees receive direct in-hospital paediatric experience Children’s Community Nursing Teams patchy across England

7. Children & Young People’s Health Outcomes Strategy – Why the need? • Key indicators in the wrong direction: • Obesity prevalence in Yr6 (age 10 – 11) increasing 2010/11 - 17.4% of girls and 20.6% of boys were • 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 • Inequalities in outcome • Infant mortality • obesity

8. Children worst affected by hospital drug errors, warns report: The Guardian, Thursday 18 June 2009 NPSA - 60,000+ children/year medical errors >10,000 involves medication. peaks in children under four x10 errors Gentamicin in neonates- 400 incidents Only 4% of the reports came from GPs, Children & Young People’s Health OutcomesMedication errors

9. Children & Young People’s Health OutcomesLicensing of medicines and avoidable drug errors Despite EU legislation (2007) re new medicines • Most medication for children is unregulated and untested formally in children. • Unsuitable formulations contributes to the high number of drug errors • National Institute for Health and Clinical Excellence (NICE) will not give advice on unlicensed medicines and this limits the guidance that they can offer on care for children.

10. National Context Children lose out to demands of adults in NHS, says report Failure to provide more than 'mediocre services' argues Sir Ian Kennedy 2010 • GPs having little or no formal paediatric training • Caring for children and young people low on most GPs’ priorities • Lack of co-ordination, and services not working together • Wide variations in care • The need for improved data and information • The configuration of services and the importance of networks • The need to improve workforce competence • A need to promote positive health

11. National Context Putting patients and the public first ‘No decision about me without me’ Improving Healthcare outcomes Autonomy, accountability and democratic legitimacy Clinical leadership to the fore Cutting bureaucracy and improving efficiency The NHS will release up to £20 billion of efficiency savings by 2014

12. Children and Young People’s Health Outcomes Strategy – Commission by SoS • In January 2012 SoS for Health announced the development of a Children and Young People’s Health Outcomes Strategy • 3 key outputs : • 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 Established the Independent Children & Young People’s Health Outcomes Forum

13. Children & Young People’s Health Outcomes Report – Key Principles • The voice of children and young people • Healthcare provision through a child friendly lens, • The need to adopt a life-course approach, • Building resilience and self-esteem in children and young people • Integrated care • Create confidence in the new system

14. The NHS Outcomes Framework will be organised around 5 national outcome goals /domains that cover all treatment activity for which the NHS is responsible How EFFECTIVE the care provided by the NHS is What the patient EXPERIENCE is like How SAFE the care provided is The five domains will cover the range of activities that the NHS should be delivering for all patients Domain 1 Preventing people from dying prematurely Effectiveness Domain 2 Enhancing quality of life for people with long-term conditions Domain 3 Helping people to recover from episodes of ill health or following injury Domain 4 Ensuring people have a positive experience of care Patient experience Domain 5 Treating and caring for people in a safe environment and protecting them from avoidable harm Safety

16. NHS Outcomes FrameworkChildren’s Indicators to date Children e.g. infant mortality; Neonatal mortality and stillbirths Preventing people from dying prematurely Enhancing quality of life for people with long-term conditions Children and Young People e.g. Unplanned hospitalisation for asthma, diabetes , epilepsy Unplanned care – children Emergency admissions for LRTI Helping people to recover from episodes of ill health or following injury Ensuring people have a positive experience of care e.g.children and young people e.g. patient/parent survey Treating and caring for people in a safe environment and protecting them from avoidable harm Children Harm due to ‘failure to monitor’

17. Children & Young People’s Health Outcomes Strategy – Some key messages from Children & Young People • From the engagement 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 children to adult services • CYP want to have a say and be listened to in decisions about their health and take a lead where able

19. Children & Young People’s Health Outcomes Strategy – More key messages from Children & Young People • Lack of join up around health, social care and education • Poor and delayed diagnosis of conditions impacting on outcomes • General Practice, the key and most frequent point of contact not meeting the needs of CYP • Outcomes need to take a whole family approach because the health and wellbeing of families (carers) directly impacts on CYP and affects their resilience • Ensure outcomes are included for different ages (life cycle) • Transition to adult services often very disjointed and planning needs to involve family

20. Children & Young People’s Health Outcomes Strategy – Outcomes & Indicators Forum finalised its detailed recommendations based on 3 categories. • Strengthening of existing indicators • Adaptation of current indicators to make them more relevant to children • New outcomes and indicators Aligning proposed outcomes and indicators with the domains in the NHS and PH Outcomes Frameworks Aligning with our patient centred pathway

21. Children & Young People’s Health Outcomes Strategy – Outcomes and Indicators – Extending existing • For the NHS Outcomes Framework these include • Extension of indicators focussed on a limited age group within CYP e.g. infant to the whole CYP population • Pupil absence for LTCs and Mental Health • Emergency re-admissions of children within 48 hrs of discharge • Functional recovery following traumatic brain injury • incorporate the views of children and young people into existing national patient surveys in all care settings – primary care, community health care, acute/in-patients, neonatal units and outpatients • Improving experience for CYP of end of life care • All medication errors that reach the patient

22. Children & Young People’s Health Outcomes Strategy – Outcomes and Indicators NEW recommendations • For the NHS Outcomes Framework these include • time from first NHS presentation to diagnosis or start of treatment • integrated care – developing a new composite measure; • effective transition from children’s to adult services; and • age-appropriate services – with particular reference to teenagers.

23. Children & Young People’s Health Outcomes Strategy – Issues for the new system • Will the New System reinforce the fragmentation of services for CYP? • How the new system needs to work together to meet the full range of needs of CYP? • How will the system listen to CYP and families? • There are levers and opportunities within the New System to ensure integration actually happens, eg the new duty to promote integration that was established through the Health & Social Care Bill

24. Public Health England (Local health improvement in LAs) Department of Health THE NEW SYSTEM NHS Monitor (economic regulator) CQC (quality) NHS Commissioning Board HealthWatch Clinical Commissioning Group Providers Local HealthWatch Localauthorities (via health & wellbeing boards)

25. Children & Young People’s Health Outcomes Strategy – Themes for Recommendations 8 areas: • Patient voice - Putting children; YP and families at the heart • Integration and partnership • Acting early and intervening at the right time • Safe and sustainable services • Workforce; education and training • Knowledge; evidence and research • Leadership, accountability and assurance • Incentives and levers for service improvement

26. Children & Young People’s Health Outcomes Strategy – Themes for Recommendations Medication for children and young people • DH should adapt the existing indicator in Domain 5 of the NHS Outcomes Framework to measure all drug errors that reach patients • The MHRA with immediate effect, prioritises pharmacovigilance of children’s medicines, including medication errors and off-label use, in line with the new EU legislation effective in July 2012; • reporting errors to the NRLS becomes mandatory as part of the reporting for the NHS Outcomes Framework and that this becomes part of the regulatory framework for CQC and Monitor • the Royal Pharmaceutical Society works with the Colleges and the NHS Institute for Innovation and Improvement to develop a bundle of interventions in order to eliminate drug errors.

27. Children & Young People’s Health Outcomes Strategy – Themes for Recommendations Licensing of Medications EU Regulation (2007) – New drugs tested and licensed • Old medications not tested; NICE will not issue guidance The Forum believes there is an important role for the MHRA as the medicines regulator in addressing this problem and so improving child safety. The Forum believes that the situation with regard to the absence of licensing for the majority of children and young people’s medicines in this country is unacceptable • The Forum therefore recommends that DH: • commissions a study in 2013 to quantify the harm to children and the costs that arise due to errors from unlicensed and off-label prescribing and through lack of age-appropriate formulations; and • using the findings, works with the industry and academia to develop properly the use of all medicines, whether old or new, starting with those medicines producing the most harm.

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 – Next Steps • The Forum handed over the report to the SoS in July • We are looking to the Department of Health, other relevant government departments and the wider system to consider how they can take forward our findings. • CMO meeting October 4th to assess progress Keith Ridge CPO, is leading on implementation of the Forum’s recommendations re safety and effectiveness of medications Launch of the strategy by the SoS– December

30. The New Team

33. Children & Young People’s Health Outcomes Strategy – Themes for Recommendations Patient voice - Putting children; YP and families at the heart • that Healthwatch England, as the national champion for health and social care, gives appropriate consideration to the importance of the voice of all children and young people in informing its work programme, and is able to demonstrate this through its annual report; and • local Healthwatch includes children and young peoples voices are core to that work and demonstrates this through their reporting mechanisms. All health organisations demonstrate • how they have listened to the voice of children and young people, and • how this will improve their health outcomes.

34. Children & Young People’s Health Outcomes Strategy – Themes for Recommendations Acting early and intervening at the right time • All organisations in the new health system should take a life-course approach, coherently addressing the different stages in life and the key transitions instead of tackling individual risk factors in isolation • Directors of Public Health, through their health and wellbeing board, should ensure that they include comprehensive data for all children and young people within their Joint Strategic Needs Assessment • CCGs with their local authority partners need to ensure sufficient clinical expertise and leadership for looked after children, including a designated doctor and nurse.

35. Children & Young People’s Health Outcomes Strategy – Themes for Recommendations Integration and partnership • The NHS Number should be used as the unique identifier to bring together health, education and social care data for all children and young people. • The NHS CB and Monitor should prioritise and promote the issue of integrated care provision in their regulatory and performance roles within the NHS, and work with the Care Quality Commission (CQC) and Ofsted in developing a framework across non-health providers • DH should work with other government departments and partners to achieve better integration of health with education, social care and other local authority led services.

36. Children & Young People’s Health Outcomes Strategy – Themes for Recommendations Safe and sustainable services • The NHS CB must ensure there is a nationally designated, strategic managed network for children and young people. This should include maternity and neo-natal care. • CCGs need to develop local networks and partnerships with providers to address and deliver the sustainable provision of local acute, surgical, mental health and community children’s services • The NHS CB, with CCGs, should address service configuration to meet the needs of children and young people on a sustainable, safe and high quality basis. • DH should adapt the existing indicator in Domain 5 of the NHS Outcomes Framework to measure all drug errors that reach patients

37. Children & Young People’s Health Outcomes Strategy – Themes for Recommendations Workforce; education and training • HEE should identify a lead LETB to co-ordinate education, training and workforce development to reduce variability and maintain national standards • the Centre for Workforce Intelligence should address the issues of providing a safe and sustainable children and young people’s healthcare workforce • The Royal College of General Practitioners proposal to extend GP training to allow for adequate training in paediatrics and physical and mental child health is supported • All the relevant Royal Colleges should work together to agree skills and competencies in child health. • All general practices that see children and young people should have a named medical and nursing lead

38. Children & Young People’s Health Outcomes Strategy – Themes for Recommendations Knowledge; evidence and research • The NHS CB, with support from Health and Social Care Information Centre (HSCIC), should establish electronic child health records, accessible for both patients and professionals • The Chief Medical Officer should consider how an intelligence network for children and young people’s healthcare, which crosses all settings, can be established by 2013. • the National Institute for Health and Clinical Excellence (NICE) and the NHS CB work to expand and prioritise the Quality Standards work programme for children and young people • The Chief Medical Officer should use her role as head of research and development to stimulate the development of academic child health, both physical and mental, and the evidence base for practice and improving outcomes

39. Children & Young People’s Health Outcomes Strategy – Themes for Recommendations Leadership, accountability and assurance • All organisations – DH, Public Health England (PHE), the NHS CB, Monitor, local authorities and CCGs – should clearly set out their responsibilities for CYP and their families; how accountability will be exercised at every level in the system; • DH, the NHS CB and PHE should identify national clinical leadership on children and young people, for example through a deputy reporting to the CMO in DH and a National Clinical Director reporting to the Medical Director within the NHS CB. • Local commissioners, including CCGs and local authorities, should identify a senior clinical lead for children and young people • DH and the NHS CB should publish a full accountability framework for safeguarding children in the wider health system as soon as possible

40. Children & Young People’s Health Outcomes Strategy – Themes for Recommendations Incentives and levers for service improvement • DH, in its system oversight role, should maintain a focus on the pattern of funding flows across the NHS, local authorities, public health to ensure that perverse incentives are not adversely affecting patient care or service provision • NHS CB prioritise the development of an appropriate range of incentives for CYP within the Quality and Outcomes Framework [QoF] for general practice • Monitor and the NHS CB should ensure that they continue with the outcome-orientated development of Payment by Results currencies and tariffs for child health related areas • The NHS CB and CCGs should consider how they will adopt a risk sharing approach between different provider organisations in developing their commissioning plans for delivering care closer to home

41. Children & Young People’s Health Outcomes Strategy – Why the need? • Key indicators in the wrong direction: • Obesity prevalence in Yr6 (age 10 – 11) increasing 2010/11 - 17.4% of girls and 20.6% of boys were • 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 • Inequalities in outcome • Infant mortality • obesity

42. Children & Young People’s Health Outcomes Strategy – Themes for Recommendations • at the first point of care, delivered by GPs, emergency departments, ambulance services, telephone help lines such as 111 or pharmacists, all staff need to be able to demonstrate that they have had the training needed to be competent to work effectively with children, young people and their families and are able to deliver ‘safety net’ advice;

43. Teicoplanin 280mg prescribed and given instead of 28mg – twice Isoprenaline 4 micrograms / Kg / min prescribed and given instead of 4 micrograms / minute Morphine IV 4mg prescribed and given instead of 0.4mg Morphine 1.25mg oral given instead of 125micrograms prescribed Morphine 3mg oral given instead of 150 micrograms prescribed Atrocurium IV given in error instead of ondansetron Recent Medication Errors at Alder Hey that reached the patient