ACT's History: 1988-2009

It’s hard to believe that ACT has been working for children’s palliative care for 21 years. We have come a long way, and so much has changed and been achieved. When ACT first started out in 1988, children’s palliative care was a largely unknown discipline; with little specifically allocated funding or dedicated services.

The specific needs of children with life-limiting conditions and their families often went unnoticed. Although medical services were available for these children, their emotional and spiritual needs were largely overlooked.

Two of ACT’s co-founders, Sister Frances Dominica and the late Professor David Baum, could see there was a huge gap in services, policy and practice. They saw the need for focus and co-ordination, and for sharing what good practice and information existed. They could see that although these children had very different illnesses and conditions, they had many things in common. As Professor David Baum wrote:

“There is an infinite diversity amongst children with life-threatening and terminal illness: they do not represent a neat homogeneous category of patients. The nature of their illnesses varies widely as does the progression of their disease…

“However for all these differences, we believe these children have a number of features in common: inexorable progression of their disease process; the imponderable emotional burdens of premature mortality; and the balance between the child’s need for technical and scientific medical care on the one hand and his family’s need for emotional and spiritual support on the other.”

“Over the last decade [1980s], a realisation has dawned…that between the bricks and mortar of hospitals and established community services, large gaps exist in the provision of care for which these families feel a vital need. Once identified, these needs were seen to be urgent and pressing yet largely without models on which to build.”

(Excerpt from: Listen – My child has a lot of living to do
Edited by ACT founders: David Baum, Sister Frances Dominica, and Robert Woodward.)

In 1987, Sister Frances Dominica, founder of Helen House hospice for children and Professor David Baum, Professor of Child Health at the University of Bristol, initiated a survey to collate all available information on existing and planned services throughout the country for these families.

This survey and its findings led to ACT being formally established, and one of the key aims of this new association was to address the lack of co-ordination between service providers and to encourage communication between all those working in the field.

The aims of the newly formed ACT were to:

• Establish a national resource and information centre for the dissemination of up-to-date information.

• Bring together all the diverse statutory and voluntary bodies, organisations and groups involved in the field.

• Work towards the provision of a comprehensive, flexible and compassionate national network of care for children with life-limiting conditions and their families.

And so ACT was born; firstly named as the Association for Children with Life-Threatening and Terminal Conditions. In 1988 ACT started its life at the then Institute of Child Health in Bristol under the Chairmanship of Professor David Baum.

By the early 1990s the need for an organisation such as ACT was growing; demands for information, co-ordination, lobbying and a single voice that could represent both professionals and families was evident. To satisfy demand and provide a much needed membership service ACT soon began to seek additional funding and also charitable status.

In 1993 ACT became a registered charity and membership organisation. ACT’s inaugural meeting as a charity witnessed the publication of the first ACT 14 Point Charter, endorsed by William Waldegrave, Secretary of State for Health, and senior Health Minister Virginia Bottomley. The Charter highlighted the need for children’s and families’ voices to be heard and involved as key participants in the decision making process, with dignity and respect central ethos, stated that parents should be seen as the primary carers, called for honest and open communication, highlighted the needs of family members and siblings of life-limited children.

Although ACT’s life spans 21 years, its aims have stayed the same. ACT still has a vision that every child and young person who is not expected to reach adulthood should be able to access the best possible care and support.

Thankfully the world of children’s palliative care has changed. There is an excellent range of children’s palliative care services and a dedicated and skilled workforce. ACT, as the collective voice of 800 family and children’s palliative care professional members, can raise awareness and influence policy and practice. Children’s palliative care is nationally regarded as a specialist area. Each UK country has a policy framework that recognises this and ACT, with its partners, is working hard to reach this same recognition internationally. We also have just seen the appointment of the UK’s first academic Chair of Palliative Care for Children and Young People – a truly exciting opportunity to put children’s palliative care firmly on the map.

But we still have a long way to go. Funding is key to this, and in this biting economic climate we must work hard to ensure that these children and their families remain centre stage.

ACT has achieved a great deal in the last 21 years, but we can’t take all the credit. ACT’s work and the developments in children’s palliative care are a collective achievement of many committed individuals and organisations, our members, and most importantly all the families, children and young people that have strengthened our voice. A huge thank you is due to you all. We want to continue to deliver our vision for children, young people and families; and with your help, we know we can.