Ingrid Wolfe | Child Health, Health Services and Systems in UK Services and Systems Health and other European countries | | Child Health, Ingrid Wolfe Child Health, Health Services and Systems in UK and other European countries How do European countries compare in child health and child survival? Child Health, How do different child health services, systems, and wider determinants exert long-term influences for good or harm? Health Services and Systems Why do some countries seem to do better than others in securing and promoting in UK and other European countries their children’s and young people’s health and wellbeing? And what can we do to make things better? This thesis explores some of these difficult but important issues, describes serious Ingrid Wolfe problems in child health, and offers recommendations for European countries to ensure a healthier future for children. 2015:24 ISBN 978-91-7063-637-0 Faculty of Health, Science and Technology ISSN 1403-8099 Public Health Science DISSERTATION | Karlstad University Studies | 2015:24 DISSERTATION | Karlstad University Studies | 2015:24 Child Health, Health Services and Systems in UK and other European countries Ingrid Wolfe DISSERTATION | Karlstad University Studies | 2015:24 Child Health, Health Services and Systems in UK and other European countries Ingrid Wolfe DISSERTATION Karlstad University Studies | 2015:24 urn:nbn:se:kau:diva-35856 ISSN 1403-8099 ISBN 978-91-7063-637-0 © The author Distribution: Karlstad University Faculty of Health, Science and Technology Department of Health Sciences SE-651 88 Karlstad, Sweden +46 54 700 10 00 Print: Universitetstryckeriet, Karlstad 2015 WWW.KAU.SE PREFACE I am a paediatrician and a public health doctor, and these two strands of my work came together and were enriched by developing an interest in children’s health services, systems, and policy research in the UK and Europe. My curiosity about these subjects led to work with Professor Martin McKee on European public health, Professor Staffan Janson on children’s health, and Dr Hilary Cass on UK child health and policy. The work we did together resulted in the publication of research papers and policy reports about children’s health and health services. Invitations to give lectures and speeches followed, as did interviews with media, and meetings with politicians. I began to see that by dedicating my efforts to science and advocacy, I might become a useful bridge between the technical and the political, and thereby hopefully contribute towards improving child health. I am very fortunate now to be employed by Evelina London Children’s Hospital who created a post in paediatric public health, a new and special professional category, and by King’s College London who are supporting me to develop a children’s population health and policy research team. It is a privilege to be in a position where I can put into practice the things I have researched and written about. I am leading work to design, implement, and evaluate a new type of child health service model. This work is intended to be widely generalisable in order to help meet evolving child health needs and service pressures across the UK and the rest of Europe. My intention is to build and use expertise in child and adolescent population health, services, systems and policy research as a means to improve local and international child health. 1 In no respect has culture remained more backward than in those things which are decisive for the formation of the future. Ellen Key, The Century of the Child, 1900 The Lancet’s decade for child health began in 2000, just as Ellen Key’s century of the child ended (1, 2). A remarkable transformation in the lives of Europe’s children happened during the 20th century. At the beginning of the century, poor children lived, worked, and fuelled the Industrial Revolution with their labours while scant attention was paid to their lives, health or happiness. By the end of the century, children became widely accepted as people with rights, entitled to education and healthcare. Child health progress during the 19th and much of the 20th centuries was driven largely by social reform, growing economic security, and public health legislation. More recently, significant advances in medicine and technology have meant that the marginal contribution of healthcare to health has become proportionately more significant. While a growing appreciation for the rights of the child contributed to the improvements in children’s life circumstances, by contrast little attention has been devoted to the rights of the sick child. Children’s health systems and services in many countries were designed and are evolving largely around the needs of adults with insufficient regard for the particular concerns of children’s lives, health, and wellbeing. Similarly, health systems research has focused largely on adult health, without sufficiently considering child health; and on low and middle-income countries while problems in European health systems have been insufficiently researched. The consequences of weaknesses in European children’s health services and systems include avoidable suffering and death. These are remediable problems. Health services and systems for children must be shaped according to evidence, and research is necessary to generate evidence to provoke changes in policy and practice. 2 Children have the right to the highest attainable standard of health. In European countries, taking forward The Lancet’s decade on child health and fulfilling our obligations in the United Nations Convention on the Rights of the Child means strengthening child health services and systems to ensure they make the maximal contribution possible to improving the health of Europe’s children. This doctorate is dedicated to the work that remains to be done to secure optimal health and welfare for children. 3 ABSTRACT Background This work in child population medicine describes child health problems, assesses health services, systems, and wider determinants, and makes recommendations for improvements. Aims To explore trends in UK child health and health service quality and highlight policy lessons from the UK and other European countries. To study child health and health services in western Europe and derive lessons from different approaches to common challenges. To enhance knowledge on child to adult transition care. To describe trends in UK and EU15+ child and adolescent mortality and seek explanations for deteriorating UK health system performance, and make recommendations for improving survival. Methods Population level measures of health status and system performance; primary and secondary research on policies and practice for health system assessments. Quantitative: mortality rate trends, excess deaths, DALYs, healthcare processes Qualitative: case reports, system descriptions, analyses. Results European child survival has improved, but variably between countries. The UK has not matched recent EU mortality gains. There are 6,000 excess deaths annually in children under 15 years in EU15 countries. There are child survival inequities; countries investing in social protection have lower mortality. Children in the UK, compared with other EU countries, are more likely to be poor than adults. Non-communicable diseases are now dominant causes of child death, disease, and disability. Mortality, processes and outcomes of healthcare amenable conditions vary between countries. Better outcomes seem to be associated with flexible health care models promoting cooperation, team working, and transition. Conclusions Child health in Europe is improving, but unevenly. Child health systems are not adapting sufficiently to meet needs. Recommendations are made for improving health systems and services. Key words: child health, public health, health services and systems assessment, UK, Europe 4 SAMMANFATTNING Bakgrund Denna avhandling inom ämnet folkhälsovetenskap beskriver barns hälsoproblem i Europa och hur man genom ökad kunskap om hälsoservice, hälsosystem och andra övergripande påverkansfaktorer kan ge rekommendationer till förbättringar. Avhandlingens målsättningar 1. Att undersöka trender i barns hälsa i England, hälsoservicens kvalitet samt belysa policyerfarenheter från England och andra europeiska länder. 2. Att studera barns hälsa och hälsoservice i Västeuropa och dra lärdomar från hur man med olika angreppssätt hanterar likartade problem. 3. Att öka kunskapen om vård i övergången mellan barn och vuxenliv. 4. Att beskriva trender i England och EU15+ rörande dödsfall hos barn- och ungdomar, försöka förklara det försämrade utfallet för det engelska hälsosystemet samt ge rekommendationer för att förbättra engelska barns överlevnad. Metod Mätningar av hälsoutfall för barn på populationsnivå och bedömning av hälsosystemens funktion med primära och sekundära forskningsresultat som rör policies och hälsosystemens praktik. Kvantitativt: mortalitetstrender, överskridande dödlighet, DALY, proportionalitet hälsoarbetare/patienter, vårdprocesser. Kvalitativt: fallrapporter, beskrivning och analys av hälsosystemens funktionsgrad. Resultat Barns överlevnadsgrad har ökat, men med stora variationer inom Europa. England har inte kunnat leva upp till senare års förbättringar i detta avseende. Det är 6 000 överskjutande dödsfall hos barn under 15 år inom EU15, beräknat gentemot det bäst fungerande landets mortalitetsutfall. Det finns en ojämlikhet i överlevnad mellan rika och fattiga länder i Europa, och de som avsätter mer medel till socialt beskydd har jämförelsevis