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