Improving child health services in the UK: insights from Europe and their implications for the NHS reformsBMJ 2011; 342 doi: https://doi.org/10.1136/bmj.d1277 (Published 08 March 2011) Cite this as: BMJ 2011;342:d1277
- Ingrid Wolfe, specialist registrar public health1, general paediatrician2,
- Hilary Cass, paediatric neurodisability consultant3,
- Matthew J Thompson, senior clinical scientist and general practitioner4,
- Alan Craft, emeritus professor(child health)5,
- Ed Peile, professor emeritus (medical education)6,
- Pieter A Wiegersma, youth healthcare physician-epidemiologist7,
- Staffan Janson, professor8,
- T L Chambers, consultant paediatrician9,
- Martin McKee, professor10
- 1London School of Hygiene and Tropical Medicine, London WC1E 7HT, UK
- 2Whittington Hospital, London N19 5NF
- 3Evelina Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust, London
- 4Department of Primary Health Care, University of Oxford, Oxford, UK
- 5Newcastle University, Newcastle, UK
- 6University of Warwick, Warwick, UK
- 7 Department of Health Sciences, University Medical Centre, Groningen, Netherlands
- 8Karlstad University, Centre for Public Health Research, Karlstad, Sweden
- 9Bristol and Weston-super-Mare, UK
- 10European Observatory, Health Systems and Policies, London School of Hygiene and Tropical Medicine
- Correspondence to: I Wolfe
- Accepted 15 February 2011
The care provided by UK children’s health services is inferior in many regards to that in comparable European countries. Although there are many examples of good practice, health services too often provide poor outcomes and are seemingly planned around the needs of organisations rather than those of children, young people, and families. Service models are often inefficient and wasteful. Budget constraints and dramatic changes in the NHS make it more important than ever that children’s healthcare is planned carefully and appropriately for their needs (box 1). However, current plans insufficiently recognise children and young people’s special requirements and fail adequately to acknowledge important recommendations made in Ian Kennedy’s review of children’s healthcare.1
The Marmot review emphasises the importance of investment in children to reduce health inequalities at all ages.2 Health services in the UK need to adapt both to the changing nature of the challenges of disease in children and to the opportunities to intervene. Other European countries offer helpful insights into ways of improving children’s healthcare.
Box 1: How children’s health needs differ from those of adultsw1
Diseases—Some diseases are specific to childhood, but children can also manifest illnesses differently: in signs and symptoms, in the rapidity of decline and recovery, and in behavioural responses. The burden of disease in childhood is shifting away from mostly infectious illnesses to more long term conditions
Demography—A large proportion of children in the UK live in poverty. Extensive evidence links poverty to poor health outcomes, and since childhood is one of the most vulnerable periods in the life course, health of children suffers disproportionately
Dependence—Children are usually dependent on care givers to seek health care, interpret their problems, administer interventions, and communicate their views on the experience of care. This dependence makes child protection an important and distinctive part of children’s healthcare. Children’s health and wellbeing relies on multiple actors and agencies, including education, social services, and local government
Development—Children’s health needs change with their development from infancy to adolescence
Quality of UK children’s health services
There are no comprehensive assessments of the quality of healthcare for children in the UK nor systematic international comparisons. Therefore we must look elsewhere for clues about where to concentrate efforts. Direct and indirect evidence suggests problems in many areas. A confidential inquiry into child deaths found “identifiable failure in the child’s direct care” in 26% of deaths, with potentially avoidable factors in a further 43%.3 Errors by staff with inadequate paediatric training or supervision were common. Thompson and colleagues found that half of children subsequently found to have meningococcal infection are sent home from the first consultation,4 and the failure or delay in diagnosis has cost over £20m (€24m; $33m) in legal settlements in the past 12 years.5 Around 75% of children’s asthma admissions could have been prevented with better primary care.6 Over a third of short stay admissions in infants are for minor illnesses that could have been managed in the community.7
Death rates from illnesses that rely heavily on first access services—for example, meningococcal disease, pneumonia, and asthma, are higher in the UK than in Sweden, France, Italy, Germany, and the Netherlands (table1⇓).8 Survival rates are lower in the UK for some childhood cancers.9 These contribute to the UK’s higher all cause childhood mortality compared with other European countries (fig 1⇓). Although the incidence of many diseases is affected by socioeconomic conditions, deaths from the diseases cited here should be preventable by healthcare. If the UK health system performed as well as that of Sweden, the best performing country in our sample, as many as 1500 children might not die each year (table 1⇓ and bmj.com).
Planned care for children with long term conditions also gives cause for concern, in both primary and secondary care, particularly as these conditions make increasingly important contributions to the overall burden of childhood disease (fig 2⇓).For example, only 3% of children with asthma have written plans to prevent and manage exacerbation,11 so contact with the health service is often reactive. There are many preventable asthma admissions, and mortality from asthma in the UK is higher than in comparable European countries.8 Similarly, a national audit found that 82% of diabetic children had HbA1c concentrations above target levels, with nearly 9% of children having at least one episode of ketoacidosis in the past year and only 4% receiving care consistent with guidelines.12 Poor diabetic control in children leads to more and earlier morbidity. The Healthcare Commission reports that 46% of acute trusts are weak in paediatric outpatient care, with services designed around acute illness rather than chronic disease.13
Explaining current patterns and problems of care
Inconsistent expertise and diagnostic resources
Access to the NHS generally is excellent and highly equitable compared with other countries.14 However, despite the multiplicity of service access points, paediatric expertise is inconsistent and diagnostic resources limited.15
Children represent about 25% of a general practice population but around 40% of its workload, young children being particularly frequent users.16 Many senior general practitioners have accumulated extensive experience of paediatrics, but fewer trainees now do a paediatric training post (in some parts of the country 40%-50%17 compared with 60% in 197018). Experience matters, especially in recognising rare but serious illnesses in children.
Many paediatricians report seeing increasing numbers of children with minor problems. A recent study suggests that 36% of referrals to paediatricians are potentially avoidable19 and this partly reflects lack of knowledge or confidence by general practitioners. Few trainee paediatricians spend any time in general practice,20 however, and many feel poorly prepared for dealing with children who have minor illnesses but anxious parents and for the myriad behavioural problems and family and school difficulties often seen in hospital paediatric clinics.
Organisation of care: the gap between primary and secondary care
Perceived difficulties in accessing urgent services have led to a plurality of first access care services, but many do not have the resources to deliver safe urgent care for children.15 Many parents seek care directly in emergency departments; indeed one in three children is now admitted to hospital in their first year of life; 67% are short stay admissions, and 39% of these are for minor infections that could have been managed elsewhere.7
General practitioner trainees may not get any paediatric exposure beyond their generic general practitioner registrar year. Hospital based staff do not have the capacity or the most appropriate skills to deal with minor illness,1 7 w2 w3 w4 These gaps in skills, confidence, and capacity between primary and secondary care create services that are overwhelmed with minor illness and acute conditions. Therefore children with chronic problems too often have to make do with disjointed care fitted in around acute services.13 w5 w6 w7 Families report unsatisfactory care experiences, such as multiple appointments in different locations on different days, and inadequate coordination and communication between professionals. Efforts to integrate care across primary and secondary services are hampered by organisational, managerial, governance, and financial constraints.
Underlying many of these problems are the planning and commissioning of health services. Existing patterns of use, rather than the needs of children and families, drive service configuration, which determines workforce training, numbers, and distribution. This leads to a flawed system becoming self perpetuating. In addition, perverse incentives such as the payment by results system promote organisational and professional self interest and competition rather than cooperation and collaboration. This is compounded by the virtual absence of incentives to provide high quality care for children in contractual remuneration structures such as the general practice Quality and Outcomes Framework.
How does Europe differ?
Comparable European countries with better child health outcomes have several features that differ from the UK (table 2⇓). Trainee primary care and specialist paediatricians in Europe follow a curriculum beginning with a three year “common trunk” emphasising primary care.21 All five countries examined in table 2⇓ have substantially more doctors looking after children (per capita) than the UK,10 22 23 but there are also important organisational differences.
In Sweden, first access and some outpatient care for children is provided by general practitioners trained in paediatrics working closely with paediatricians and children’s nurses in local health centres. Sweden also has developed “chains of care” based on agreements between providers, to counter fragmentation of services that impedes quality improvement.24
The Netherlands has a general practice system similar to that in the UK 25 but operating within a “transmural” service designed to improve coordination between primary and specialist care. This service supports education, shared guidelines, and innovative payment systems.26
In France there are incentives to register with a general practitioner, but parents can choose between office based paediatricians and general practitioners for young children, shifting to general practitioners later in childhood. Children with long term conditions typically attend a paediatrician who coordinates care with a network of professionals.27
In Germany, most children have a primary care or family paediatrician. German patients have traditionally had a choice of direct access to a general practitioner or specialist. Recently however, patients have been incentivised to see general practitioners first but children retain direct access to paediatricians.
The Italian system is for primary care and specialist paediatricians to deliver all children’s medical care. However, they work in different organisations and have similar communication and coordination problems across primary and secondary care boundaries to the UK.
How can European insights benefit UK?
Our analysis suggests there are two broad areas to consider in improving UK care: the children’s healthcare team and the wider system. A better balance is needed between accessibility and expertise for first access and planned care for children. Sweden’s model of co-locating general practitioners and paediatricians in health centres may be feasible in the UK. This cooperative model would protect the traditional NHS values of family medicine but also improve first access care and community based coordinated multidisciplinary services for children with long term conditions.
All the countries examined have more doctors looking after children; some have general practitioners with postgraduate training in paediatrics, many working closely with paediatricians. However, there is a need to reassess the training of all members of teams caring for children, ensuring that it supports new models of interprofessional care that bridge the primary-secondary care interfacew9 w10 and focus on the needs of the child.w11 Professionals working with children need to progress beyond occasional discussion of referrals to collaboration on effective service development and professional training. The UK could achieve this by enhancing specialist skills of general practitioners and generalist skills for paediatricians, with common curriculums and flexible training and accreditation systems.
Children’s needs must be taken account of at all levels of policy. Services should be planned around the child,w12 delivered by teams providing acute and long term care, incorporating health promotion and systems for early detection of risk factors and disease.
European examples show how services can be reorganised to support collaboration between professionals across organisational and professional boundaries. The Swedish multiprofessional health centres and chains of care system and Dutch transmural care models offer examples of how integrated services can address the fragmentation that currently impairs the efficiency and quality of children’s services in the UK (box 2). Table 3⇓ suggests some ways in which quality and cost effectiveness of care could be improved in the UK.
Box 2 Children’s healthcare in Sweden and the Netherlands
Sweden has reduced fragmentation and costs by merging small hospitals and devising chains of care to ensure integration across community, primary, and specialist care24
Primary care was strengthened by forging close links to paediatrics
GPs, who are trained in paediatrics, work closely with paediatricians, nurses, and other primary care professionals in community health centres to deliver acute and planned care for children and their families
General practitioners provide the mainstay of primary care, acting as gatekeepers to paediatricians in secondary care
Links between the two sectors are closer than in the UK, underpinned by “transmural” systems that bridge the gap between primary and secondary care26
A near universal youth health service provides a range of services to children from birth to 19 years, including health promotion risk factor and disease screeningw13 w14
Implications of NHS reform
We believe that the coalition government’s proposed changes to the NHS do not sufficiently account for children’s needs and may exacerbate the problems discussed in this paper. Problems with children’s first access care may not be solved by devolving commissioning to general practitioners (or private sector proxies), not least because of conflicts of interest28 and because national planning and investment are required to tackle workforce shortages and to improve child health data to ensure services are planned and commissioned on the basis of health needs. Services for long term conditions risk being further fragmented by policies promoting competition between providers.29 Moreover, the removal of the public health function from the NHS diminishes its ability to contribute to service planning and evaluation, and measures such as the government’s responsibility deal with food manufacturers seem unlikely to be able to constrain the powerful commercial forces already shaping policy. Although Health and Wellbeing Boards are intended to achieve links between public health and commissioners, it is not clear how the needs of children will be prioritised.
These issues are especially worrying because of our current inability to measure quality of much of children’s healthcare. Most indicators of NHS quality relate only to adults, and although indicators of children’s healthcare quality have been used in other countries,30 it is not clear how best they could be applied in the UK.
Our analysis leads us to recommend that comprehensive integrated teams in primary care settings should provide the majority of children’s healthcare. We believe such teams stand the best chance of delivering the right care, at the right time, in the right place, and by the right people. The teams should comprise jointly trained general practitioners and paediatricians working with children’s nurses, health visitors, allied health professionals, and mental health professionals. This will require more doctors with paediatric training. General practitioners should have mandatory dedicated training in paediatrics, including management of acute illness and long term conditions. Training of paediatricians should include health promotion, behavioural paediatrics, and management of long term conditions out of hospital.
Integrated teams should fill the gap between primary and secondary care by providing high quality urgent care for minor illness. This will prevent unnecessary referrals and admissions, and improve the detection of potentially serious illness. They will allow rapid on-site access to a more specialist opinion, thus providing a more convenient patient experience and an effective diagnostic safety net.w15 Integrated teams will be able to provide convenient high quality planned care for children and young people with long term conditions, as well as health promotion, disease prevention, and health education for children, young people, and families.
Integrated services should be carefully coordinated with other providers in networks. Financial mechanisms that support collaboration, such as payments by clinical pathway rather than discrete episodes of care delivered by competing organisations, are needed. Child public health doctors should work closely with commissioners, within the NHS as well as education and local authorities, to ensure children’s best interests are met and that services improve.
Cite this as: BMJ 2011;342:d1277
We thank Marina Karanikolos, Ruth Gilbert, Helmut Brand, and Claes Sundelin.
Contributors and sources: The article draws on the experience and knowledge of all authors as clinicians and researchers and benefits from perspectives across the spectrum of primary and secondary care, medical education, policy analysis, and health services research. The paper was drafted by IW in conference and correspondence with HC, MJT, AC, EP, PAW, SJ, TLC, and MM who contributed original ideas, made comments on early drafts, and revised later drafts. IW is the guarantor.
Competing interests: All authors have completed the unified competing interest form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare no support from any organisation for the submitted work; no financial relationships with any organisation that might have an interest in the submitted work in the previous three years; and no other relationships or activities that could appear to have influenced the submitted work.
Provenance and peer review: Not commissioned; externally peer reviewed.