History of Action for Sick Children

Over the past five decades the care of sick children in hospital has been transformed. Fifty years ago children faced long, lonely stays in hospital. Visiting hours were short and sometimes non-existent. It was generally believed that parents of sick children should be discouraged as much as possible from visiting. The accepted opinion was that they might “bring infection into the ward” and their visits “evidently upset the children” who if left to themselves, would soon “settle down” and forget about home.

There were a few hospitals offering exceptions to this pattern and it was from these and from the work of the Tavistock Institute of Human Relations on maternal deprivation and separation anxiety that a gradual rethinking came about regarding the role of parents, especially the mother, in the care of the sick child in hospital. James Robertson’s contrasting documentary films, A Two Year Old Goes to Hospital (1953) and Going to Hospital with Mother (1958) clearly showed that the more distressing part of hospitalisation for a child was separation from mother, rather than illness or pain.

In 1952 the Health Ministry’s Annual Report recorded that only 23 percent of hospitals allowed daily visits while 11 per cent prohibited all visiting. By 1954 daily visiting had risen to 65 per cent but these visits seldom lasted more than one hour. By 1956 sufficient concern had been aroused for the Ministry of Health to set up an enquiry under the chairmanship of Sir Harry Platt to investigate the arrangements made by hospitals for the welfare of children in hospital as distinct from their medical and nursing needs. The committee’s report, published in 1959, The Welfare of Children in Hospital – commonly known as The Platt Report – made 55 recommendations for the non-medical care of children, recognising the importance of parental involvement and understanding children’s emotional needs. The most significant recommendations were that visiting to all children should be unrestricted, that mothers should be able to stay with their children, especially if they were under five, that the training of medical and nursing staff should include the emotional and social needs of children and families, that children should only be admitted to hospital if their care could not be given at home or in the community and children should not be admitted to adult wards The Platt Report was adopted as official policy by the Ministry but without any mechanism to force hospitals to adopt its recommendation. Consequently there was little change nor was there any appreciation of the need for change. A medical correspondent could confidently state “the great majority of hospitals seemed oblivious to the enormous amount of put upon children and their parents by rules which break important relationships necessary for the maintenance of good mental health”

In 1961 James Robertson contributed a series of articles to the Observer and showed his films on television during which he urged community pressure to improve conditions for children in hospital. Some Battersea mothers heeded Robertson’s call and set up, under his guidance, a group originally called Mother Care for Children in Hospital – MCCH. Having visited hospitals where parents were welcome they investigated the care available to children in local hospitals where they found little recognition had been given to The Platt Report. Discussions with medical, nursing and administrative staff brought forward a number of factors frustrating change. Those caring for sick children considered it “natural” for children to cry in hospital: tears had long been accepted as inevitable. It was thought that children soon forgot what happened in hospital: children’s memories were very short so no permanent damage could result. Many children who cried bitterly when first left soon settled down and could even become “quite happy”. They “just didn’t miss their mothers”. Many seemingly good reasons were given for not changing the traditional arrangements. Most hospitals were old with little space to spare. Cross infection might increase. The routine would be disturbed. Mothers would be “difficult”. Very few mothers asked for longer visiting hours or beds to be with their children. In any case they all had competing home commitments. Many children were far from home and would be treated unfairly if the others had frequent visitors. Thus the need for change went unrecognised and the probable effects of change were exaggerated or mistaken. Nor was there any understanding of the emotional effect of separation especially on the young child.

Mother Care for Children in Hospital aimed to persuade hospital staff that the new concepts were worthwhile and could work, and to persuade parents that they had a vital role to play in the care of their sick child. Public meetings were organised with both professionals and parents to promote these aims. Extensive publicity in the national press and in women’s magazines soon stimulate the formation of more MCCH groups. By 1962 ten groups had emerged and following some very sympathetic coverage in The Guardian by the famous journalist Mary Stott, the total grew to twenty-three by the end of the year. The first survey of visiting, carried out by post in 1962, and supplemented by information from the groups provided the information for the MCCH Hospital Information Service through which parents could be directed to the most co-operative hospital for their particular needs. In 1963, the 23 MCCH local groups came together to form a national association at a conference where the presentation of current topics to a lay and professional audience set the pattern for the many successful conferences that followed. In 1965, in order better to recognise its lay and professional membership, the organisation became the National Association for the Welfare of Children in Hospital – NAWCH.

Surveys of visiting and accommodation continued allowing NAWCH to contest Ministerial statements of major improvements in unrestricted visiting (75% of hospitals) with more accurate information collected at ward level (only 23%). These early surveys revealed a variety of meetings for the term unrestricted. “It is our aim to unrestricted visiting but visiting in the morning is not encouraged.” Visiting on this ward is unrestricted but do not stay more than half an hour.” “Visiting on operation day is at Sister’s discretion and is discouraged to save parents any unnecessary distress.” By 1966 NAWCH discussions with the Ministry and question by Members of Parliament in the House of Commons had established a clear definition of visiting arrangements. HM (66/18) Visiting children in Hospital stated that fixed visiting hours were to be abandoned, that there should not be any rule restricting visiting, before or after any operation or of children who have an infectious illness, that a decision not to visit a child on a particular day should only be made by the consultant in charge, that hospital information leaflets should make it clear that parents could visit at any time during the day and that mothers of young children should be able to stay in hospital with their children. This precise clarification of the position greatly helped NAWCH in its campaign to get its ideas accepted both by hospital staff and by parents. Since that time the Association has campaigned, with considerable success, for family centred care, with particular emphasis on the removal of all restriction on visiting. By the early ‘80s it could report that more than half the wards admitting children could offer some accommodation for parents and at least the same number had completely open visiting. Since then there has been continued improvement demonstrated by local and national surveys

By 1967 NAWCH was an expanding organisation of fifty-five branches in England, Scotland and Northern Ireland, there being a separately established and managed organisation in Wales. With a grant from the Sembal Trust the Association opened its first office in London. Coming into Hospital, an advice leaflet for parents, issued in 1967, was the Association’s first publication. Sadly no longer published it sold in its millions to hospitals and parents alike, it helped families to a more enlightened hospital experience and formed the model for many hospital admission leaflets. In 1984 the Association took on a new role as the standard setting body with the publication of the NAWCH Charter for Children in Hospital. This was immediately recognised by the Department of Health and endorsed by more than fifty professional and voluntary organisations involved with the health and social care of children. In 1989 the Charter principles were expanded into Setting Standards for Children in Health Care – The NAWCH Quality Review. Many Health Authorities and NHS Hospital Trusts used this as the basis for the specifications and contracts required by the 1991 changes in health care provision. In 1991 NAWCH became Action for Sick Children (ASC), the new name reflecting the fact that an increasing amount of children’s health care was now taking place in the community or at home rather than in hospital. This pattern of care had been reflected since 1963 in the first clause of the NAWCH constitution and formed the basis of the first clause of the 1918 NAWCH Charter.

Action for Sick Children published a series of Family Information Leaflets, specifically designed for parents and children ranging from the original, updated Coming into Hospital to four further Parent Guides: You and Your GP, What to do in an Emergency, Going to Outpatients and Hospital isn’t that bad!. Others in the series included Children and Pain, Needles – Helping to take away the fear and Teenagers in Hospital. The Quality Review Series continued with an updated and extended version of the first review now called Health Services for Children and Young People – a Guide to Commissioners and Providers. Other titles in this standard setting series include publications on such subjects as adolescents in hospital, children’s surgery, mental health care, appropriate health care of black and ethnic minority children and emergency services for children and young people Action for Sick Children developed a unique library and information service for parents, professionals and the media. An historical collection of articles traced the developments in the hospital care of children since the 1960’s and library searches on specific topics were available.

Action for Sick Children branches acted as a consumer information base to bring to public notice inadequacies and inappropriate provision in children’s health services. They have been available to give advice, confidence and support to parents who know what their children need but were frustrated by staff unwilling to change. Surveys of visiting have depended on branch members to obtain a national picture. They have funded hospital facilities such as hospital play programmes, parents’ accommodation, admission leaflets, slide sets and videos, hospital comics and painting books and set up travel services to take families to hospitals for appointments and to visit sick children. One such travel service Manchester Sick Children’s Transport, has been a long-standing independent charity. Branch members also take part in training programmes for nurses and medical students, provide relevant publication s for their reference libraries and have funded their own members and hospital staff to attend local and national conferences and government consultations. Others provide hospital information programmes in the community for children in play groups and nursery schools using specially designed Play Boxes and some have run a hospital crèche for siblings.

Association members were early appointed to health service management bodies thus participating in service provision and hospital planning. Many members have served on Health Authorities and Trusts and represented the interests of children and families on consumer councils monitoring health care such as Community Health Councils and their successor bodies. Through it annual conferences and its journal it has brought topics of interest and enlightenment to a wide lay and professional audience. Members have made contributions to many national and international conferences promoting family centred health care and presentations have been made both locally and nationally on television, radio, in the press and via the internet. The Association served as a pattern for other countries wishing to develop similar programmes.

Demonstration visits to the UK were arranged for staff from overseas and ASC members visited many countries to spread the message. Participants in such programmes include the Netherlands, Kuwait, Saudi Arabia, Malta, Finland, the Czech Republic, Poland, Switzerland, New Zealand, Australia, Japan and China. Action for Sick Children is a founder member of the European Association for Children in Hospital – EACH, whose Charter published in 1988, is based on the 1984 NAWCH Charter.

Though always a lively critic of government ASC was praised by ministers and officials for its careful fact finding and its sense of responsibility as well as its persistence in following up cases where practice was thought to be wrong. It has made significant contributions to government consultations and national and professional co-ordinating committees. Consultations have included such seminal Department of Health memoranda as Visiting Children in Hospital (1966), Hospital Facilities for Children (1971), The court Report (1976), Play in Hospital (1976) The Welfare of Children in Hospital (1991) and The Care of the Critically Ill Child (1997). These were followed by contributions to the Parliamentary Select Committee Report on Child Health Services (1996), The Bristol Enquiry (2001), the National Service Framework (2004) and its consequent monitoring report Every Child Matters, (as well as the many hospital committees overseeing its implementation), the Child Health Strategy (2009) and the White Paper “Equity and Excellence: Liberating the NHS” (2010).

Travel costs for the families visiting and attending hospital have been an issue for the Association since the first NAWCH Fares Enquiry in 1972. Further campaigns followed but despite firm representations to the Department of Health, as well as question in the House of Commons, few changes have ever been made. A more targeted enquiry into the variable cost of parking in2004, Park the Car, Park the Charge, demonstrated that travel costs were still an ongoing issue. Enquiries into parking and travel costs in collaboration with the University of Salford have shown some welcome improvements but overall parking costs have increased continually over the years.

In 2001 in celebration of its fortieth anniversary ASC launched its Best Practice Awards to recognise excellence in children’s health care. In 2008 the Norah Rees Award for a Master’s dissertation from a nurse that best reflects the aims and values of Action for Sick Children was launched. (Sadly, both awards are no longer in place). 2007 saw the launch of a new project Dental Playbox (DPB), its aim to help children learn through play about dental treatment and encourage them to co-operate with the dentist, thus making going to the dentist less scary. First developed and now generally in use in Scotland. DPB has an accompanying leaflet and video available on the ASC website.

Since 2004 ASC has been developing processes and techniques to enable children and young people to participate in decision making in response to the requirement of the National Service Framework (2003), to communicate with children and young people to determine their specific needs and involve them meaningfully in the decision -making process regarding their healthcare needs. Publications for these projects include Evaluating Children’s Health Services – the Adolescent User Perspective. Adolescents as a resource group were mainly underused when planning for their needs in hospital is undertaken. This report published in 2006, demonstrated the development of a unique survey process to assess the views of adolescents undergoing health care. In 1959 the Platt Report recommended that this group of young people should receive significant and separate provision in hospital, a recommendation not generally implemented. The Principles for Involving children and Young People in Service Planning Processes of Hospital Services, also published in 2006, was a practical guide for staff working in health settings on how to consult and involve children and young people. It demonstrates that consultation involved more than simply asking for views but also requires attentive listening followed by relevant action to turn the ideas offered into reality. Consent to Treatment for Children and Young People, a 2006 funded by the Department of Health, offered advice to parents and staff and defined the way in which children and young people should be personally involved in decisions affecting their own health care.

Voices for Children and Young People – a review of the literature, by Dr. Jane Coad, followed in 2007. This proved useful for those concerned with decision -making in health care provision and the need, as recommended by its eminent paediatric reviewers, to ensure that the views of children and young people are fully considered. To make such a process easier, and possibly more likely to occur, ASC published Involving children and Young People in Healthcare – A Planning Tool. This tool kit, launched at the Royal College of Paediatrics and Child Health on 6th October 2009, aimed to support those working in the health care sector, both primary and secondary, by providing a programme to enable them to engage with children and young people. These tools proved to be of great value to the new commissioning bodies established by the GP Consortia, given that one of the principles of the Whit Paper was the value and necessity of patient involvement, a role emphasised by Action for Sick Children since its inception in 1961.

In 2009, ASC celebrated the fiftieth anniversary of the publication of the Platt Report by holding a national conference in Manchester with presentations from many eminent contributors. Honorary membership of Action for Sick Children was awarded to two long-standing members a DVD outlining the development of the charity was produced. In 2011, to celebrate the fiftieth anniversary of the founding of the Association in April 1961, ASC also held a Jubilee Lecture at the Royal Society of Medicine to an invited audience and it also sponsored an Art Competition for children who were in hospital in April 2011 and invited hospitals to organise birthday celebrations.

Working in a collaborative and persuasive manner it has been influential in promoting a pattern of health care for children and their families, which meets their specific needs. It has gathered information from users and professionals, undertaken and sponsored research and translated the results into standards of care, which have been adopted nationwide. The organisation has used it expertise to influence key policy makers nationally and locally to help make children’s health a priority and has developed a good working relationship with professionals to achieve change. As an independent voice in health care for children and families for more than fifty years.

The Association has seen major changes in the recognition of the emotional, social and psychological needs of sick children, so clearly stated in the Department’s 1991 policy document The Welfare of Children and Young People in Hospital. “We now have a far greater knowledge of how children develop both emotionally and physically. With that understanding has come an awareness of the emotional vulnerability of the young child and the effect which early experience can have on later development. A good quality service should provide for the child as a whole, for his or her physical and emotional wellbeing, not just for the condition for which care is required. It must be child and family centred with children and families experiencing care, treatment and support as they move through the constituent parts of the services”. A great deal has been achieved but there is still more to be done!

Action for Sick Children is an outstanding success story, and whilst somewhat smaller today is still campaigning for the rights of the sick child / young person, and still delivering Dental Playbox.

This article is an extract from an ASC publication Celebration of a Transformation published in 2011 and was written by Peg Belson MBE BA PhD, Hon Fellow RCPCH / Hon Fellow ASC

Children are our future,
it’s up to us to take care of them