Downloaded from http://adc.bmj.com/ on March 8, 2015 - Published by group.bmj.com
Leading article
Improving the care of children and young people in the UK: 20 years on Albert Aynsley-Green INTRODUCTION In 2000, practitioners in child health asked a simple question—who speaks for children and their health at the policy level?1 It documented the invisibility of children in the National Health Service (NHS) and made recommendations for the future. As we experience unprecedented political turbulence, austerity, increasing poverty and ideological reforms of health and education, is all well in the UK for children, childhood and child health now?
THE CONTEXT Children are our nation’s most precious resource because of the change in the old age dependency ratio—the number of active working age adults per pensioner. In 1971, the ratio was 3.6; it fell to 3.2 in 2008, and despite a recent increase in birth rate largely in mothers born outside the UK, it could fall to 2.0 within 35 years.2 We need healthy, educated, creative and resilient children to become the productive adults supporting an ageing population, so investing in them should be a top national priority. As well as being our future, they are citizens today deserving all the entitlements that follow, including the 42 Articles of the United Nations Convention on the Rights of the Child (UNCRC). There is much to celebrate. There are outstanding children and young people exemplified by the award to exceptional young people by the Diana Princess of Wales Memorial Award, the success of young able bodied and disabled British Olympians, the authority of Young Parliamentarians, and turning the challenges of teenage cancer into effective fund-raising. These all reflect the positive attitudes and behaviours of countless children and young people. The majority are loved in their families. They are hardworking, strive to be successful, are law abiding and when given an opportunity, contribute to the society. Children, generally, are healthy and fewer die than 20 years ago. Scientific advances have transformed knowledge of Correspondence to Professor Albert Aynsley-Green, Emeritus of Child Health, University College London, Aynsley-Green Consulting, Salisbury SP28LE, UK; [email protected] 4
the pathogenesis of diseases, diagnosis and treatment so that conditions including cancers can now be cured. Prevention through immunisation has diminished the toll of polio, pertussis, rubella and meningococcal meningitis. The culture of services has been transformed with parents having unlimited access to their children in hospital, and being involved in making decisions in their care. The voice of children and young people is being realised through Article 12 of the UNCRC that states: ‘Children have the right to say what they think should happen when adults are making decisions that affect them, and to have their opinions taken into account’. Depending on its level of understanding, no one today would inflict a procedure or a treatment without fully involving the child, even young children receiving postoperative patient-controlled analgesia so they can adjust safely the rate of analgesia infused for pain relief. Resources have improved including purpose-built children’s hospitals and wards designed for newly born infants, children and adolescents. There is forward thinking in policy for children in all four administrations in the UK including the Welsh Assembly enshrining into the law of the UNCRC,3 the Scottish National Curriculum for Excellence4 and the development of new secure facilities in Northern Ireland for young offenders.5
THE INCONVENIENT PARADOX Despite these developments, all is not well for many children with outcomes for our children’s lives falling below the benchmarks of other developed nations. Why so many of our children are faring so poorly across so many domains is an uncomfortable question demanding analysis and action. A starting point is to see child health not in isolation, but in the wider context of contemporary childhood. The Good Childhood Inquiry, in which some 35 000 children participated, defined the key drivers preventing children and young people experiencing a good childhood, namely, excessive individualism in society, the soaring rate of family breakdown, relentless commercialisation, the
competitive education environment and poverty.6 In 2007, the UK ranked bottom in the UNICEF league table on the well-being of children in the richest countries of the world.7 High poverty, poor health, family and peer relationships alongside risky behaviour including alcohol misuse, early sex and teen pregnancy were accompanied by low expectations and a high rate of young people Not in Employment, Education or Training. Of special concern was the low self-assessed well-being of so many youngsters. The position in the league table rose to 16th by 2013,8 but whether this can be sustained in the light of current turbulence is doubtful. Some important changes in health-related behaviour have occurred including a fall in overall alcohol consumption in young people (but associated with an increase in ‘binge-drinking’) and a decrease in teenage conceptions.9 However, British girls have become the most obese in Europe.10 The education outcomes of literacy and numeracy are 23rd and 26th, respectively, out of 65 countries in the international Program for International Student Assessment ranking,11 with many young people lacking the skills needed for modern employment. While welcoming the need for education reform, current policy with its relentless focus on examination attainment and narrow curriculum is occurring at a time when more young people are seeking help when contemplating suicide.12 Despite many children being protected effectively by hard-working staff, children continue to die after being failed by the services meant to protect them. The outcomes of many children in the care of the state are woefully below those in society generally, although recent policy to improve the rate of adoption is important.13 The recent scandal on child sexual exploitation in Northern England exposes failures in local authority social care and the unacceptable attitudes of the police to protect the most vulnerable children. Over 70% of young people reoffend after imprisonment14 and the needs of the 200 000 children of prisoners have been ignored leading to especially poor outcomes of health, education and employment.15 Appalling public attitudes to children were exposed in 2009,16 with 43% of adults agreeing ‘something has to be done to protect us from children’, reinforcing the installation of several thousand ‘mosquito’ ultrasonic weapons in shopping malls and on houses to prevent children gathering. This intolerance of our young
Aynsley-Green A. Arch Dis Child January 2015 Vol 100 No 1
Downloaded from http://adc.bmj.com/ on March 8, 2015 - Published by group.bmj.com
Leading article is driven by relentless demonisation of children in sections of the media. The pernicious effects of rising inequality on every facet of life are well documented.17 The need for early interventions together with implementing effective economic and employment policy to lift families out of poverty is key,18 yet politically contentious in how best to do this. Inequality in education is increasing, with children from independent fee-paying schools dominating medicine, the law, politics, literature, acting and music, thereby decreasing social mobility. It is to government’s credit that it has supported the Early Education Foundation, the introduction of the Troubled Families Initiative and the Family Nurse Partnership in attempts to reach the most disadvantaged families, but these are unable to address all those in need. Moreover, these targeted programmes are up against a concurrent assault on universal services for children and families, so the overall impact is likely to be questionable. There is, therefore, evidence that all is not well for many of our children and young people.
POLICY FOR CHILD HEALTH Sir Ian Kennedy published in 2000 his searing Inquiry into children’s cardiac surgery in Bristol where more infants died or were damaged than expected.19 He showed that nationwide, care for children was subordinated to the demands of adults; lack of understanding of what is different about children’s services in people who matter; the view that children are healthy and services are satisfactory, the ability to admit a sick child being a major success. Children were not mainstreamed in government policy, with adult-centric priorities dominating the NHS. Children and young people being unable to vote had no political traction, and this alongside a failure of leadership by professional organisations led to their needs being under-recognised. Sir Ian’s report was followed by Lord Laming’s equally critical report into the failures in care that led to the murder of Victoria Climbie.20 Both reports were influential in driving the Children Act of 200421 that made sweeping recommendations for improving child protection, and creating the post of an independent Children’s Commissioner to speak for the 11 million children in England—such commissioners had already been created in Wales, Scotland and Northern Ireland. The Kennedy Inquiry triggered the appointment of a National Clinical Director for Children to be responsible
for defining standards of care in a National Service Framework (NSF)22 with the prospect, for successful adult-centric NSFs in cancer, heart disease and mental health, of ring-fenced money and hard targets. This created an expectation that at last there would be a transformation in the low standing of children’s services. Ten years later, Kennedy re-visited children’s health services showing that while there were patches of excellence, cultural barriers in government and in services perpetuated the isolation of policy, lack of responsibility, poor use of data, the NHS not working with others and a lack of financial investment.23 Why had there been so little improvement? The British Medical Association in its report ‘Growing up in the UK’ analysed government policy on child health, concluding that ‘Politicians have been failing children on a grand scale’.24 It described the failure to implement the NSF and highlighted over 1600 children dying unnecessarily each year when compared with other European countries. Caution is needed in attributing these excess deaths to failures in the health service alone, since wider economic and social factors are also responsible for these country differences. Nonetheless, the report also documented poor outcomes occurring for even common conditions such as asthma and epilepsy, and inadequate services for children with mental ill health, with
Leading article
Improving the care of children and young people in the UK: 20 years on Albert Aynsley-Green INTRODUCTION In 2000, practitioners in child health asked a simple question—who speaks for children and their health at the policy level?1 It documented the invisibility of children in the National Health Service (NHS) and made recommendations for the future. As we experience unprecedented political turbulence, austerity, increasing poverty and ideological reforms of health and education, is all well in the UK for children, childhood and child health now?
THE CONTEXT Children are our nation’s most precious resource because of the change in the old age dependency ratio—the number of active working age adults per pensioner. In 1971, the ratio was 3.6; it fell to 3.2 in 2008, and despite a recent increase in birth rate largely in mothers born outside the UK, it could fall to 2.0 within 35 years.2 We need healthy, educated, creative and resilient children to become the productive adults supporting an ageing population, so investing in them should be a top national priority. As well as being our future, they are citizens today deserving all the entitlements that follow, including the 42 Articles of the United Nations Convention on the Rights of the Child (UNCRC). There is much to celebrate. There are outstanding children and young people exemplified by the award to exceptional young people by the Diana Princess of Wales Memorial Award, the success of young able bodied and disabled British Olympians, the authority of Young Parliamentarians, and turning the challenges of teenage cancer into effective fund-raising. These all reflect the positive attitudes and behaviours of countless children and young people. The majority are loved in their families. They are hardworking, strive to be successful, are law abiding and when given an opportunity, contribute to the society. Children, generally, are healthy and fewer die than 20 years ago. Scientific advances have transformed knowledge of Correspondence to Professor Albert Aynsley-Green, Emeritus of Child Health, University College London, Aynsley-Green Consulting, Salisbury SP28LE, UK; [email protected] 4
the pathogenesis of diseases, diagnosis and treatment so that conditions including cancers can now be cured. Prevention through immunisation has diminished the toll of polio, pertussis, rubella and meningococcal meningitis. The culture of services has been transformed with parents having unlimited access to their children in hospital, and being involved in making decisions in their care. The voice of children and young people is being realised through Article 12 of the UNCRC that states: ‘Children have the right to say what they think should happen when adults are making decisions that affect them, and to have their opinions taken into account’. Depending on its level of understanding, no one today would inflict a procedure or a treatment without fully involving the child, even young children receiving postoperative patient-controlled analgesia so they can adjust safely the rate of analgesia infused for pain relief. Resources have improved including purpose-built children’s hospitals and wards designed for newly born infants, children and adolescents. There is forward thinking in policy for children in all four administrations in the UK including the Welsh Assembly enshrining into the law of the UNCRC,3 the Scottish National Curriculum for Excellence4 and the development of new secure facilities in Northern Ireland for young offenders.5
THE INCONVENIENT PARADOX Despite these developments, all is not well for many children with outcomes for our children’s lives falling below the benchmarks of other developed nations. Why so many of our children are faring so poorly across so many domains is an uncomfortable question demanding analysis and action. A starting point is to see child health not in isolation, but in the wider context of contemporary childhood. The Good Childhood Inquiry, in which some 35 000 children participated, defined the key drivers preventing children and young people experiencing a good childhood, namely, excessive individualism in society, the soaring rate of family breakdown, relentless commercialisation, the
competitive education environment and poverty.6 In 2007, the UK ranked bottom in the UNICEF league table on the well-being of children in the richest countries of the world.7 High poverty, poor health, family and peer relationships alongside risky behaviour including alcohol misuse, early sex and teen pregnancy were accompanied by low expectations and a high rate of young people Not in Employment, Education or Training. Of special concern was the low self-assessed well-being of so many youngsters. The position in the league table rose to 16th by 2013,8 but whether this can be sustained in the light of current turbulence is doubtful. Some important changes in health-related behaviour have occurred including a fall in overall alcohol consumption in young people (but associated with an increase in ‘binge-drinking’) and a decrease in teenage conceptions.9 However, British girls have become the most obese in Europe.10 The education outcomes of literacy and numeracy are 23rd and 26th, respectively, out of 65 countries in the international Program for International Student Assessment ranking,11 with many young people lacking the skills needed for modern employment. While welcoming the need for education reform, current policy with its relentless focus on examination attainment and narrow curriculum is occurring at a time when more young people are seeking help when contemplating suicide.12 Despite many children being protected effectively by hard-working staff, children continue to die after being failed by the services meant to protect them. The outcomes of many children in the care of the state are woefully below those in society generally, although recent policy to improve the rate of adoption is important.13 The recent scandal on child sexual exploitation in Northern England exposes failures in local authority social care and the unacceptable attitudes of the police to protect the most vulnerable children. Over 70% of young people reoffend after imprisonment14 and the needs of the 200 000 children of prisoners have been ignored leading to especially poor outcomes of health, education and employment.15 Appalling public attitudes to children were exposed in 2009,16 with 43% of adults agreeing ‘something has to be done to protect us from children’, reinforcing the installation of several thousand ‘mosquito’ ultrasonic weapons in shopping malls and on houses to prevent children gathering. This intolerance of our young
Aynsley-Green A. Arch Dis Child January 2015 Vol 100 No 1
Downloaded from http://adc.bmj.com/ on March 8, 2015 - Published by group.bmj.com
Leading article is driven by relentless demonisation of children in sections of the media. The pernicious effects of rising inequality on every facet of life are well documented.17 The need for early interventions together with implementing effective economic and employment policy to lift families out of poverty is key,18 yet politically contentious in how best to do this. Inequality in education is increasing, with children from independent fee-paying schools dominating medicine, the law, politics, literature, acting and music, thereby decreasing social mobility. It is to government’s credit that it has supported the Early Education Foundation, the introduction of the Troubled Families Initiative and the Family Nurse Partnership in attempts to reach the most disadvantaged families, but these are unable to address all those in need. Moreover, these targeted programmes are up against a concurrent assault on universal services for children and families, so the overall impact is likely to be questionable. There is, therefore, evidence that all is not well for many of our children and young people.
POLICY FOR CHILD HEALTH Sir Ian Kennedy published in 2000 his searing Inquiry into children’s cardiac surgery in Bristol where more infants died or were damaged than expected.19 He showed that nationwide, care for children was subordinated to the demands of adults; lack of understanding of what is different about children’s services in people who matter; the view that children are healthy and services are satisfactory, the ability to admit a sick child being a major success. Children were not mainstreamed in government policy, with adult-centric priorities dominating the NHS. Children and young people being unable to vote had no political traction, and this alongside a failure of leadership by professional organisations led to their needs being under-recognised. Sir Ian’s report was followed by Lord Laming’s equally critical report into the failures in care that led to the murder of Victoria Climbie.20 Both reports were influential in driving the Children Act of 200421 that made sweeping recommendations for improving child protection, and creating the post of an independent Children’s Commissioner to speak for the 11 million children in England—such commissioners had already been created in Wales, Scotland and Northern Ireland. The Kennedy Inquiry triggered the appointment of a National Clinical Director for Children to be responsible
for defining standards of care in a National Service Framework (NSF)22 with the prospect, for successful adult-centric NSFs in cancer, heart disease and mental health, of ring-fenced money and hard targets. This created an expectation that at last there would be a transformation in the low standing of children’s services. Ten years later, Kennedy re-visited children’s health services showing that while there were patches of excellence, cultural barriers in government and in services perpetuated the isolation of policy, lack of responsibility, poor use of data, the NHS not working with others and a lack of financial investment.23 Why had there been so little improvement? The British Medical Association in its report ‘Growing up in the UK’ analysed government policy on child health, concluding that ‘Politicians have been failing children on a grand scale’.24 It described the failure to implement the NSF and highlighted over 1600 children dying unnecessarily each year when compared with other European countries. Caution is needed in attributing these excess deaths to failures in the health service alone, since wider economic and social factors are also responsible for these country differences. Nonetheless, the report also documented poor outcomes occurring for even common conditions such as asthma and epilepsy, and inadequate services for children with mental ill health, with
