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“Children are the living message we send to a time we will not see”
1There is an increasing recognition that the wellbeing of the pregnant mother, foetus, and growing child are important determinants of health in later life. However, the effects may not become apparent until at least the age of 50. Although Churchill said that one of the best investments a government can make is to put milk into the stomachs of children, it would be a brave and farsighted political party that would invest in something which was not going to show any real benefits within a parliamentary time scale or two—that is, a maximum of 10 years.
We have seen over the last few years that children are a high priority for the government of the UK across a broad spectrum. The recognition that the future of our nation depends on the education of children was highlighted by the Prime Minister’s assertion of his priorities: “Education, education, education”. The Chancellor of the Exchequer has been trying hard to end child poverty and to reduce the gap between rich and poor. Youth offending and behaviour have been the target of much action. But what of health?
The long awaited National Service Framework (NSF) for Children for England was recently published.2 A separate NSF for Children for Wales has also appeared.3 The messages in both are similar but the Welsh version comes with more of an action plan. The NSFs were part of the NHS Modernisation Plan, and several have already been published. For example, the NSF for cancer has been particularly effective in improving services, and the falling death rate across all ages is a tribute to it. Of course, the UK is only just catching up with much of Europe, which has long had better access to services which are much better funded. Cardiovascular, diabetes, mental health, and renal disease are some of the other NSFs. The children’s NSF is different. It covers a complete age group rather than a disease and, unlike the first NSFs much more importantly, it comes without any hypothecated money. The early NSFs had clear targets but these have been replaced by standards with suggestions as to how to measure whether local services meet these standards.
The publication of the children’s NSF has coincided with announcements of several other government initiatives aspiring to improve the lives of children—for example, Every Child Matters and the Children Act 2004. There is a risk that its impact and implementation strategy will be confused during the range of multi-agency work needed to achieve such an ambitious programme, so that health and healthcare services for children may not receive the attention they deserve. Much targeted work within the health service ought to take place during implementation while forwarding the cross agency work given so much attention in the NSF reports.
There is much to welcome in the NSF. The importance of health to all of the other initiatives for children is recognised. Educational achievements will be greater if children are healthy. Many patterns of health are established in childhood, and lifelong health depends on a good early start. Parents are the most important people in children’s lives, and stable relationships, safe homes, and economic opportunities are vital for health. Public services are there to help parents with their vital responsibilities.
There are a few new ideas. By one year of age, there will be a comprehensive assessment of physical, social, and emotional development along with family needs. Therapy services will be readily available to all who need them. School diets will be improved, and there should be 60 minutes of exercise each day. All disabled children will have a key worker, and methods will be put in place to reduce stress levels in carers. There are clear recommendations around improving the safety and efficacy of medicines for children.
The NSF is made up of 11 modules and each contains important messages. They cover the whole spectrum of childhood from the maternity module through to adolescence and the transition to adulthood. One of the most important is that on Medicines for Children. At present the majority of medicines prescribed for children are not licensed for that purpose. There is a clear need to undertake work to improve this state of affairs and to move towards a situation where we have the right medicine, for the right illness, tailored to the child’s individual needs, in the most appropriate formulation, and all backed up by evidence. The new clinical trial networks, recently announced by the Secretary of State, including one for children, will go a long way to achieving this important aim. The networks are modelled on those for cancer which have resulted in an increase of all patients with cancer going into trials from 2% to 7%.
The Maternity Services module gives clear guidance on how to build neonatal networks for which some money has been made available. The mental health section is also important given the increasing recognition of morbidity in this area.
Little attention has been given in the NSF to the extensive existing Department of Health guidance on the care of children in hospital and community settings or to why local implementation of these reports has not made greater progress—not through a lack of local advocacy by dedicated healthcare professionals but largely resulting from the limited priority given to children’s healthcare services. From this experience, for the NSF to succeed there is a need for central and regional direction and either dedicated funding or robust performance management to support the enthusiasm and involvement of local healthcare providers.
There is a programme of children’s topics in the work programmes of the National Institute for Health and Clinical Excellence (NICE) and the Healthcare Commission to assist in implementation, including national audits and the Confidential Enquiry into Maternal and Child Health (CEMACH) deaths enquiries.
Recognising that children are sick is perhaps more difficult then it might at first appear. The decreasing numbers of babies and children who are really sick means that new ways have to be found to educate and update all professionals. Dr Ffion Davies has produced a DVD entitled “Spotting the Sick Child”,4 11 000 copies of which have been distributed to a wide range of professionals.
Children and parents should expect accessible services that are clearly understandable, with user friendly information about conditions. Both should be involved in decision making in partnership with health professionals and services should be effective, well coordinated, and achieve the desired outcome. Motherhood and apple pie? Perhaps so, but the present services often do not adhere to these principles.
The NSF is not prescriptive, and in line with NHS policy it will be left to local initiative to ensure that the standards are met. There will be no central direction. There are messages for clinicians: use evidence based initiatives, consider the child’s “illness journey”, maintain competence, value teamwork, make clinical decisions with parents, and where possible develop flexible services.
There is much here that is good, but is it likely to be implemented and make a difference? Is the government really taking children seriously? As I mentioned earlier, there is no money dedicated to it. Health policy needs to recognise children as a priority. There are no long trolley waits, and very few children die for lack of care, and so children are often forgotten when priorities are set. There is a huge initiative on chronic disease management in adults, but children and their families suffer too. Children and young people want choice, yet a serious shortage of trained professionals makes this impossible in the near future. Choice—which is a key issue in health policy—is therefore not an option for children.
In spite of the policy of decentralisation of power, a clear message must come from the centre that strategic health authorities and primary care trusts must take children’s health seriously. They particularly need to focus on those children with complex health needs and serious disability. The quality of life of the whole family is affected by a lack of coordinated services. They bear the brunt, children are excluded from school, and they do not achieve their full potential.
More and more can be done, and is expected, for children thanks to medical advances. However, local services are not able to meet their needs when they are discharged from hospital. Will this initiative work and make a real difference to the health of children and the lives of them and their families?
In the commissioning of services it needs to be recognised that planning cannot succeed at a very local level, and the entire spectrum of care needs must be considered. Managed networks of care covering the whole of the patient’s illness journey need to be developed. The importance of multi-agency working is stressed. Although implementation is not compulsory, the inspection agencies (the HealthCare Commission in conjunction with OFSTED) will have a key role to play in ensuring that standards are met.
But what can central government do to help? They can continue to reduce inequalities in opportunity for children and families—this means reducing and ending child poverty. Indeed, reduction in poverty has the potential to improve health much more than health service interventions. The importance of child poverty is recognised but measures aimed at its reduction may increase inequalities unless there is targeted action; there is limited emphasis given to how this might be achieved.
Children’s interests cross government department boundaries, and the development of information systems that cross boundaries is paramount. Health, social services, and education would be a start, but others could be usefully included. There are moves to have a single individual record number for all of these services and, if the confidentiality problems can be overcome, a single electronic patient record as proposed by the National Programme for Information Technology (NPFIT) could make a real difference.
In December 2004 the National Director for Mental Health produced his five year report following the publication of the mental health NSF. He reported suicide rates at their lowest recorded level, most users of services having a positive experience, staff numbers increasing, and much more. The Health Minister welcomed the report and announced a further £30 million in investment for general psychiatric intensive care. Similar improvements have been seen in cancer services, cardiovascular disease, and diabetes. Unfortunately there are no such clear outcome measures that can be identified in the children’s NSF.
There has been a large investment in child and adolescent mental health services and money made available to develop neonatal intensive care. However, it will take substantial investment in all healthcare services for children to ensure that in five years’ time the National Director of Children’s Services can write a similarly glowing report.
It is almost 30 years since the last comprehensive review of children’s services by the late Donald Court. It took many years for its important recommendations to be implemented. The National Director of Children’s Services, Professor Al Aynsley Green, has put enormous energy and enthusiasm into the NSF. He has managed to persuade all government departments to think about children. He should be congratulated on the birth of an NSF weighing in at 2.4 kg. It is an excellent blueprint, and could be implemented over the next 5–10 years. However, it will need real and committed priority given to children across government departments, a clear implementation plan, and deserves to have targeted funding.
“Children are the living message we send to a time we will not see”
Competing interests: none declared
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