The art of impact in better palliative care

Challenges increase as treatment improves, says Lilian Stewart

Robin House offers a place where families can relax, recharge their batteries and have fun with their children

It is often said that the Children’s Hospice Association Scotland (CHAS) helps to create amazing memories for families who use our services. The reality for families who have a child with a life-shortening condition is that it can be difficult for them to take part in events that others take for granted. That is when we can step in and help to ensure that both the everyday and the more magical moments do happen for them.

I witnessed one of those magical moments recently when, along with some colleagues, I attended the 20th International Conference on Palliative Care in Montreal. It is the world’s largest and most prestigious palliative care conference and over 1,700 delegates from 62 countries attended. We were there to discuss and promote the work of CHAS and we were very keen to ensure that the voices and experiences of the babies, children and young people supported by CHAS were heard and seen.

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To that end we shipped the entire contents of our Art 21 exhibition – a creative project carried out last year by CHAS youngsters and their siblings to celebrate 21 years of our work and through paintings, sculptures and videos – and the exhibition turned out to be one of the highlights of the conference.

One of the delegates said it “brought the child to the conference”, helping to remind all of us that we are here to support millions of people, young and old, around the world, with palliative care needs.

One of our youngsters, Jimmy, was a Doctor Who fanatic and created large colourful paintings of the Doctor’s darkest foes – the Daleks! The paintings were very much admired by the delegates and by coincidence the conference centre was also hosting a sci-fi convention, which was attended by, yes you’ve guessed it… the Daleks! It was an opportunity not to be missed. We ran up, grabbed the painting and took it to the Daleks! We wanted a photo of Jimmy’s picture to show his mum back in Scotland. Sadly, Jimmy died before the exhibition had its international moment, but for us it was a privilege to be able to show Jimmy’s work to his heroes.

There was a wealth of topics covered during the conference, including pain management; bereavement and end of life care. We were honoured to lead workshops and presentations that focused on the development of care and support we offer as well as how we engage with the families. Paediatric palliative care has unique issues and challenges and it is important that we have a forum to share and learn from other experts.

Medical development has meant that an increasing number of young people who use children’s hospice services are now living into adult life. We discussed the transition for young adults as they move to adult services and the attendant issues around this.

Our recent work in this area will see a new and dedicated team support young adults and work with partner organisations to help to ensure support in moving from CHAS into adult care provision that is more appropriate to their individual needs. But there was a great deal of agreement from delegates that, internationally, more support and services are needed for young adults as they move from children’s hospice services to adult services.

This conference was also a great learning opportunity for staff at CHAS. We are the only children’s hospice in Scotland and it is invaluable for our teams to have access to a wealth of expertise in the science, art and philosophy of palliative care, which informs our practice and helps us further develop and enhance our services.

What I found most inspiring was that everyone at that conference was not only committed to further developing palliative care around the world, but that they also thought and cared about each individual child and aimed to ensure that all their needs, medical as well as creative, social and personal, are met.

The colourful Art 21 exhibition was a powerful reminder that each baby, child, young person and adult that we support has a significant contribution to make to all of our lives – and our role is to help them achieve that through our care and support.

• Lilian Stewart is activities co-ordinator at CHAS’ Robin House