Enhancing Children's Rights

Connecting Research, Policy and Practice

A. Smith

• Publisher: Palgrave Macmillan
• Year: 2015
• ISBN:
  9781137386106
• Topic: Social Sciences
• Subtopic: Social Work
• Index: Social Sciences

This volume explores how children's rights has influenced research with children and how research can in turn shape policies and practices to enhance children's rights. The book examines the impact children's rights and Childhood Studies has had on how children are constructed and regulated internationally.

Section 1

The Body

2

Reforms to Healthcare Systems and Policies: Influences from Children’s Rights

Priscilla Alderson

Countless people have shared in reforming healthcare systems and policies when they planned, provided, researched, used and reacted to the services. Two-year-old Laura, filmed by James Robertson in 1952, helped to transform national policies on children in hospital, as reviewed later. This chapter highlights just a few examples from the UK which have radically altered health services for children. Health here is defined broadly as children’s physical, mental, emotional and social health, affected by their families’ well-being, and their housing and neighbourhood – wealthy, average or deprived.

Reformers may have thought of children’s welfare, needs and interests rather than their rights. Yet their work has generally supported rights to life, the highest attainable standards of health and healthcare, nutritious food and clean water, warmth and shelter, an adequate income, recreation, leisure and education (including the benefits of educated parents and professionals), and rights to protection from discrimination, abuse, neglect and cruel or degrading treatment. Freedoms of information, thought, association and assembly enable anyone in need to access and understand health services (United Nations, 1948, 1966, 1989). Legal rights within health services include patients’ rights to privacy and family life, and to refuse or consent to treatment and bodily touching. Common law in many of the 54 British Commonwealth countries grants this right to “Gillick competent”¹ children (Brazier & Cave, 2011). Rights to due process of law helps to regulate services, maintain standards, process complaints and prevent abuses.

Most reforms have been initiated and achieved by people working within the health services: practitioners, managers and researchers. Some of these insiders have great difficulties, when they seem to criticise their colleagues by advocating new, different or better services. While very much respecting these reformers’ hard work and immense achievements, this chapter is mainly concerned with people who, like Anne Smith, were relative outsiders.

The examples of contributors to children’s healthcare systems reviewed in this chapter emphasise individuals and voluntary groups that worked mainly outside and/or in creative tension with state systems. They were usually outsiders, not medical or nursing experts but laypeople, and their personal experiences were often crucial in informing and motivating their work. They concentrated in new ways on the interests of children (and adults) as users of current or potential future services.

Although research is copiously reported, the work of connecting research to policy and practice is far less often written up. For this reason I have followed my own work and interests, and drawn on my personal experiences, shared with many other people who are trying to reform healthcare systems. I have grouped these selected activists into innovators, partners (provision), fundraisers, boat-rockers, partners (policy), betrayers and protestors. They will appear under the heading relating to their main concern, although many were active in more than one group. This chapter is mainly a historical review.

Innovators

Anne Smith’s second contribution to this volume (see Chapter 3) on promoting international childhood studies was a welcome lecture at my place of work, the London Institute of Education, which is still dominated by child psychology. Her third contribution (see Chapter 8) was given as a lecture at the nearby Thomas Coram museum, the site of the Foundling Hospital, the first children’s home in England. William Hogarth’s portraits of the founder, sea Captain Coram, and his friends who helped to fund the hospital gazed down on us. They included George Frederick Handel. Major fundraising events from 1750 were the annual performances of the oratorio Messiah, directed by Handel and sung by the foundlings with leading professional musicians. The high expectations, which the children met, and the great social experience for all choirs who sing the Messiah reflect the definition of the World Health Organization (WHO): “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” (WHO, 1946). Innovations created with and for children to improve services for them and to promote their health have a long history.

Anne Smith’s lectures in London reminded me of my somewhat similar experiences in England. We both had children who were born in 1970 and 1972, and who redirected our lives. Formerly a schoolteacher, I remember attending a course in 1974 about play. I learned explicitly to undo my teacher training and practice, which assumed that adults have to organise children’s learning and that children learn mainly through being taught formally. The course emphasised what my children were teaching me: the amazing power of young children’s self-organised learning; their happiness when they are busy experimenting; and their frustration when they are stopped from doing so.

The course on play was held at the Margaret McMillan Centre, near to where Margaret and Rachel McMillan had set up their pioneering open-air nursery school in 1914 in the London slums. Convinced that all young children need fresh air, gardens, good food, clean and warm clothes, midday rest in cosy beds and inspiring education, they worked for children’s physical and mental all-round health and well-being. They criticised schools that prepared working-class children solely for unskilled, monotonous work.

Educators who attend only to children’s minds differ from those who know that healthy minds and learning need healthy bodies (Mayall, 1996). The longest-running strike in the UK (1914–1939) was conducted by children in Burston village, in support of two teachers who were sacked for such enormities as lighting a fire in the damp school without permission – to dry the clothes of children who had walked three miles to school in the rain (Bertram, 1974). Until effective medical treatments were developed in the 1940s, tuberculosis (TB) and pneumonia exacerbated by damp clothing in freezing rooms killed thousands of children in the UK.

Damp clothing was serious for children who wore the same garments all week, and who were sewn into their underclothes all winter. Led by 14-year-old Violet Potter, the Burston children marched and sang, waving flags while the authorities sacked their teachers. They set up an alternative school on the village green, with great official opposition but equally great working-class public support. In 1917, when their new school building was opened, Violet declared: “With joy and thankfulness I declare this school open to be forever a School of Freedom.”

During the 1930s, English state education policy promoted health by wavering between providing free school meals and “providing” fresh air through open windows in all weathers. Fresh air won in some areas, presumably because it is cheaper for taxpayers (Cooter, 1992). Today, public protests are renewed in England where “austerity” policies have brought food banks run by charities for the poor. One in every seven schoolchildren was deemed by teachers to be too hungry to be able to concentrate at school (Kelloggs, 2013). “Cost-effective” policies still undermine the health of the whole child, body, mind and spirit.

Although they are now largely preventable and curable, TB, pneumonia and diarrhoea continue to take their toll around the world,² despite remarkable global progress: an estimated 12 million children died in 1990, which was almost halved to 6.6 million in 2012.³ Save the Children, founded in 1919 by Eglantine Jebb, has played a vital practical part with other NGOs in the global fight for children’s health and life. Jebb was motivated by witnessing children who were starving and dying around Europe by the end of the First World War. Her Declaration of the Rights of the Child was adopted by the League of Nations in 1924. Its provision and protection rights, later expanded to include civil rights (UN, 1989), are basic to services that promote children’s health and well-being.

Pioneering individuals, small groups and charities/NGOs have complicated partnerships with state systems, harmonious or conflictual, cooperative or competitive. Some pioneers have welcomed support and funding from the state. If their initially privately run and funded services, such as children’s homes or nursery schools, become large and popular, and are eventually taken over by local authorities, this can be a welcome recognition of the success of their work. They have enlarged the views of the general public and the state about what ought to be basic, routine services, so that many more children could benefit from the initiatives. Save the Children piloted new ideas, such as playschemes for children in hospital, and intended, once their worth had been proved and high standards set, that local authorities would take them over and run them in every hospital.⁴

The leading innovators of the UK’s National Health Service (NHS) were outside any health system, and that seems to have freed them in three vital ways. First, they could clearly see deep flaws in pre-NHS health services and the terrible experiences for people who could not afford essential healthcare. Second, they were free to imagine an amazing alternative – the NHS. And, third, they did not have the complicated constraints and loyalties that can prevent insiders from making great radical reforms. William Beveridge was an academic economist and social reformer, and Aneurin Bevan, then minister of health and housing, was a former miner. He really knew about poverty, and untreated illnesses and injuries. The NHS opened on 5 July 1948, at a time of extreme post-war national debt and austerity, to replace a patchwork of local authority, commercial and charitable health services. Some 2,688 hospitals were nationalised (Bevan, 1952).

Women and children were most likely to fall through the large holes in the pre-NHS patchwork, which mainly supported working men. Many doctors greatly welcomed the NHS. There are stories of a general practitioner (family doctor) prescribing cough medicine for a child on 4 July. The next day he visited the family home and heard severe coughing. “Did the medicine not work?” he asked. “Yes it did,” replied the mother, “but his brother has caught the cough and I cannot afford more medicine.” “You can now,” said the doctor, and happily explained the new NHS. The benefits for poor families included no longer having to worry about the cost of each item of healthcare, about which child could have essential treatment and which could not, and about whether doctors added on unnecessary tests and treatments to inflate the bill. They no longer felt forced to delay seeing a doctor until it might be too late, when treatment was likely to be less effective and more expensive, and when infections might have spread through families and schools. Earlier care and prevention are especially vital for younger children because they succumb more rapidly to illness. When they survive severe illness, whether recovered or impaired, their minds and bodies, their whole lifelong identity and learning, relationships and opportunities, can be affected more intensely, and over a longer period, than adults might be affected.

The new NHS provided secure funding for expanding children’s health services. Insider innovators included growing numbers of paediatric doctors and nurses who developed the services through research translated into teaching, policy and practice. By the 1960s, neonatal units were opening with their specialist medical, nursing and technical staff, and gradually babies were kept alive after earlier and earlier premature birth. Many neonatal illnesses and impairments were prevented and cured. The NHS was designed as an integrated whole, with basic national standards in every area, however privileged or disadvantaged. Cooperation between services enabled patients with complex needs to be referred quickly between specialities, locally and regionally. A very premature baby, for example, might need specialist care for the lungs, heart, kidneys, liver, gut, brain, eyes, bones and skin.

Another vital service that expanded in the 1970s was children’s heart surgery, so that “blue babies” no longer languished and died. Whereas adult cardiology treats failing but normal hearts, paediatric cardiology treats children who are born with abnormal hearts. New research-practitioners developed foetal and neonatal anatomy, morphology and physiology, ultrasound, surgery on babies’ tiny organs, and interdisciplinary intensive care. The NHS promoted comprehensive, coordinated and continuing care, with the transfer of children in need to the few highly specialised children’s heart surgery units. Another innovation was when specialists travelled out to hold clinics in the surrounding referring hospitals. Besides saving families the time, upheaval and cost of returning to the specialist hospitals for regular check-ups, the clinics helped local paediatricians to learn about detecting and managing children’s heart problems. These and many other complex innovations contributed to children’s survival and well-being.

Partners (provision)

Some innovators are independent partners with state systems, complementing them or filling in gaps. Since the 19th century, Barnardo’s and the National Society for the Prevention of Cruelty to Children have worked to reduce and prevent child abuse in the UK. They provided models when statutory child protection services were later established and they still work alongside them now.

In the UK, palliative care (for comfort but not for cure) towards the end of someone’s life is mainly provided by cancer and other charities, including hospices. The first children’s hospice opened in 1982 in Oxford and there are now 40 children’s hospices in England. There were doubts about the benefits of hospices for children. Most sick children prefer to stay at home and near to their friends, with the help of practical support and equipment, such as hoists and ventilators (Sudbury & Noyes, 1999). Success in treatments for childhood cancer, cystic fibrosis, muscular dystrophy and other life-threatening diseases means that many more children live into adulthood and even to middle age. Rather than being places solely for terminal care, children’s hospices are therefore also respite homes for children with long-term illnesses or disability, who need nursing care. Their parents and sibling carers can have some rest and free time. Warm, loving relationships develop between the families and the hospice staff. Yet there can be problems when treating children with a life-limiting condition as if they are dying, although they might live for years to come. Some surviving adults regret never having planned ahead, gone to university or started an ambitious career because, in childhood, “I was always expected to die soon.”

Although the government funds about a third of their costs, hospices may continue as charities because of the uncertain benefits and costs of determining when exactly people need terminal care. Hospices are very well supported by donations. Many hospice staff and supporters believe that the patients have specific emotional and spiritual needs, which huge, generic mainstream healthcare services that are dedicated to cure and recovery might be less certain to meet.

Other independent providers are numerous self-help and support groups for families with long-term sick and disabled children, usually having been started by affected parents: STEPS for foot and leg problems; MENCAP for learning disabilities; SCOPE for cerebral palsy; and so on. Contact a Family is a central referral charity that they all belong to. They provide information and practical support to families, advise about benefits and inform professionals about high standards of care. Some run schools and other services, and some try to change discriminatory public attitudes.

In England, the Preschool Playgroups Association (PPA) was also centrally concerned with child and family health. It began in 1962 when Belle Tutaev wrote a letter to the Guardian which evoked enthusiastic replies from mothers who felt isolated at home when few preschool services were available. Led by mothers, playgroups sprang up in low-rent church halls and community centres, and in people’s own homes (Henderson, 2011). In Kent, a semirural county south of London, the PPA was the only option for local children, except for very expensive, formal, private nursery schools. I valued our playgroup because it was child-led and inclusive; disabled children, including my son, were welcomed without question. Fundraising and subsidies helped families from varied social backgrounds to attend, and volunteer support helped to keep down costs. Mothers and staff formed the organising and fundraising committee. Mothers could stay as long as their child wanted while settling in (some weeks for my first child), and they joined in with caring for other children, organising play and music sessions, making equipment and planning events. There was no marked divide between professional staff versus “lay” mothers, and many were friends and neighbours. Sessions were informal, often spontaneous, and the large garden was well used.

The PPA (changed to the Pre-School Learning Alliance in 1995) helped countless mothers who were actively involved in helping at sessions and made friends with other young families. Many mothers became more confident and went on to train for new, more rewarding careers. The PPA was markedly different from the chains of high-priced nurseries today with their mainly low-paid staff, and from the increasingly rule-governed state preschools. Governments of left and right are clear that they intend that preschools should, first, increase parental employment and, second, prepare children for success at school and for later employment (HM Treasury, 2003; Williams, 2014). The PPA’s aim, however, was to help children to enjoy being children, and parents to enjoy being parents – one version of health and well-being.

Years later, Alison Clark researched her mosaic multimethod work with children, consulting them about their views and choices (Clark & Moss, 2005). In one Kentish playgroup, she asked the children to...

Table of contents

• Cover
• Title Page
• Copyright
• Contents
• List of Tables
• Foreword by Hon Deborah Morris-Travers
• Acknowledgements
• Key Note
• Notes on Contributors
• Introduction
• Section 1: The Body
• Section 2: Early Childhood Education
• Section 3: Child Protection
• Section 4: Participation, Politics and the Law
• Conclusion
• References
• Author Index
• Subject Index