Twenty years ago, children’s palliative care was an emerging specialism. There was a growing awareness that children and young people with life-limiting conditions have specific palliative care needs which are different to those of adults. At the time, there were pockets of exceptional practice in children’s palliative care, but no organisation or body to help service providers communicate internationally, share learning or develop best practice.
In 2005, True Colours was also quite a new organisation, having been founded just three years previously. In our short lifetime, we had been privileged to get to know several visionaries working in the field of children’s palliative care including Joan Marston, Liz Gwyther, Lizzie Chambers and Barbara Gelb. This inspirational group, and others, began to discuss the need for an international network which would ensure that “the total needs of life-limited children and their families should be met”.
Even at that early stage, the incredible talents, pioneering vision and unwavering commitment to children of Joan Marston really stood out to us. We shared her view that an international organisation for children’s palliative care would be of huge benefit to the sector and we were proud, therefore, to support the initial board to realise their vision of a dedicated organisation, to maximise the impact we could collectively have for children and families.
We were delighted to provide the seed funding to establish the Network, employ a staff team and launch the inaugural ICPCN website, a resource which would ultimately act as a ‘one-stop-shop’ for information relating to children’s palliative care. Even back in 2005, the team had visions of an international e-learning platform, something which is now thriving with almost 70 courses. Recently, we were delighted to support ICPCN to develop a new training module on neonatal palliative care, a growing area of need, adapted from a UK-based programme we have been working on for over 10 years.
Under the expert leadership of Julia Downing, ICPCN continues to go from strength to strength. The operational landscape for children’s palliative care is not straightforward, and we know that ICPCN has had to navigate a sometimes difficult path during its lifetime to ensure that the needs of children’s palliative care providers around the world are being heard and met.
We have been honoured to walk alongside ICPCN through good times and through more challenging times, and to see the thriving organisation that it is today.
The True Colours Trust
Visit The True Colours Trust website here.
Leave a Reply