Our organisation was founded in 1961, as Mother Care for Children in Hospital. It began as the result of research undertaken in the 1950s by James Robertson, a psychoanalyst, into the effects of separation from home and family on children in hospital. At that time, children endured long, lonely stays in hospital. Visiting hours were short or even non-existent. Parents were discouraged from staying with their child, to avoid disrupting hospital routine or because there was fear of cross infection.
Robertson’s 1953 film A Two Year Old Goes to Hospital showed that the most distressing part of hospitalisation for children was not pain or illness but ‘separation from mother’. Following the publication of The Welfare of Children in Hospital (The Platt Report) in 1959, which recommended that visiting to all children should be unrestricted, and the broadcast of Robertson’s film on TV in 1961, Mother Care for Children in Hospital (MCCH) was set up.
MCCH aimed to persuade hospitals that the Platt Report recommendations could work. Their meetings with professionals and parents led to the formation of more MCCH groups, and the movement grew quickly. In 1963, 23 MCCH groups joined to form a national organisation which in 1965 changed its name to the National Association for the Welfare of Children in Hospital – NAWCH.
NAWCH reached Scotland in the early 1960s when two groups started in Edinburgh and Glasgow. Both Royal Hospitals for Sick Children in these cities soon had unrestricted visiting as their normal policy, but it took much longer to see any progress in the rest of Scotland. As a result of the growing workload, in 1977 NAWCH (Scotland) became a separate Scottish Charity which in 1991 took on the campaigning name of Action for Sick Children Scotland. This new name reflected the fact that an increasing amount of children’s healthcare was taking place in the community or at home rather than in hospital. In 2008 our charity and company name was changed to Action for Sick Children Scotland. In July 2017 it changed to Children’s Health Scotland to reflect the breadth of our work.
Children’s Health Scotland along with Action for Sick Children in England and AWCH Wales has been regarded over the years as an expert in setting standards for the care of sick children. The principles of the 1984 NAWCH Charter for Children in Hospital, were expanded into the NAWCH Quality Review Setting Standards for Children in Healthcare, which has since been used by many hospitals, Health Authorities and Health Boards as a benchmark of high quality children’s health services. Subsequent Quality Reviews set standards for children undergoing surgery, adolescents in hospital, children from ethnic minorities, day surgery, children’s mental health services and health services for children and young people. Children’s Health Scotland is a member of the European Association for Children in Hospital (EACH) which has promoted the rights of children in hospital through its EACH Charter. The NAWCH Charter was used as the basis of the EACH Charter.
Today, Children’s Health Scotland continues to campaign for children and young people to receive the highest standard and quality of care when they are ill in hospital, at home or in the community. Children’s Health Scotland influences the work of many committees and groups concerned with the healthcare provided to children and young people in Scotland at times of illness, and we work with the Scottish Government, NHS Scotland and other bodies to ensure legislation and policy meet the needs of sick children and young people.
The organisation has addressed many issues over the years. These have included care of premature babies, facilities for adolescents, accommodation for parents and facilities for children, children in orthopaedic wards, parents in the anaesthetic room, children and pain, the ‘Too Dear to Visit’ travel cost campaign (with Contact a Family), dental surgical services for children in Scotland, oral health provision for children with additional support needs and access to education for children and young people absent from school due to illness.
Since becoming a Scottish charity in 1976, we have worked for improvements in the standard of healthcare provided for children and young people in hospital and community settings; and have campaigned for greater involvement of children, young people and their families in decisions about the shape of health services in Scotland. Milestones and achievements have included:
- Translation of information from users (children, young people and families) into standards of care in the National Health Service. Because of this we are regarded as an ‘expert’ in standard setting in all areas of children and young people’s healthcare.
- Campaigning for the rights of children and young people in healthcare services and the development of the European Association for Children in Hospital (EACH) Charter in 1988. The EACH Charter which sets out ten healthcare rights of children and young people, reflects the UNCRC and supports the aspirations of the Scottish Government’s Children and Young People (Scotland) Act 2014.
- The EACH Charter being included in the Scottish Government’s ‘Delivering a Healthy Future: An Action Framework for Children and Young People’s Health in Scotland’ in 2007 as a benchmark against which NHS Boards should review their children’s hospital services.
- Conducting regular surveys since 1985 of parental access and family facilities in Scottish NHS hospital wards which admit paediatric patients.
- Campaigning for the right of children and young people to receive appropriate and equitable education provision when absent from school due to ill health. This resulted in the publication in 2015 of new Guidance on Education of Children and Young People unable to attend school due to Ill Health.
- Influencing and having input into Scottish Government and NHS policies, guidance, procedures and services e.g: working with Scottish Government to develop specific guidance governing the provision to children of food in hospital (2016).
- Provision of evidence to the Scottish Parliament, Health and Sport Committee on transition between paediatric and adult services in the NHS (2014).
- Contributing to the National Foster Care Review Learning and Development Framework (2014- 2015).
- Representing the voice of sick children, young people and families on groups such as:
- The Scottish Government Children & Young People’s Health Support Group (2001 – today)
- The Scottish Government Administration of Medicines and Healthcare Procedures Group reviewing the 2001 Guidance (2014-16)
- National Steering Group for Specialist Children’s Services Implementation Group (2010-14)
- National Managed Clinical Network for Children with Exceptional Healthcare Needs (2009 – today)
- The Scottish Government Children and Young People Acute Deterioration Management Group (2009-10)
- NHS National Services Division National Managed Clinical Network Review Group (2009)
- NHS National Services Division Transition to Adult Care for Chronic Disease Working Group (2011-12)
- Royal College of Physicians of Edinburgh Transition Steering Group, Think Transition (2008)
- National Steering Group for Specialist Children’s Services in Scotland Age Appropriate Care Working Group (2007)
- Being the only voluntary organisation represented on the Healthcare Improvement Scotland: Scottish Paediatric Patient Safety Programme, Clinical Reference Group and the Scottish Government Specialist Services for Children and Young People Monitoring Group which concluded in 2014.
- Launching the EACH Child and Young Person’s Health Matters Campaign at the Scottish Parliament in October 2009.
- Developing projects as exemplars of good practice which demonstrated the importance of play as a means of preparing children for medical and hospital treatment (Hospital Play Box lending project 2002-05 and Community Specialist Play Pilot 2008-10).
- Developing and delivering ‘Special Smiles’ – a dental play project delivered in additional support for learning (ASL) schools (2007-16) in response to the Scottish Executive’s commitment to Improving Children’s Oral Health in Scotland Action Plan (2005). This project was chosen in 2011 as one of Inspiring Scotland’s Early Years Early Action ventures. In 2015 it won the Patron Prize at the National Oral Health Improvement Group Awards and runner up prize in the International Association of Paediatric Dentistry Congress Bright Smiles Bright Futures competition.
- Developing and delivering the first generic self-management programme in Scotland for children and young people with chronic conditions ‘Stay Well Lanarkshire’ (2009-12). Our self-management work continued in 2013-14 with the development of a pilot programme in West Lothian for children aged 8-11 years and we have been delivering self-management programmes in Lothian since August 2015.
- Raising awareness since 2007 of the healthcare needs of looked after children and young people and the development of an educational resource via our Children in and Leaving Care Workstream.
- The establishment of area staff who work locally, identifying and responding to grass roots issues that impact on the health of children and young people.