Still a long way to go in paediatric palliative care

Categories: Leadership.

Dr Randall is currently on a two year posting with UWS in order to investigate and research paediatric palliative care here in Australia. ehospice sat down with Dr Randall to investigate his previous work and gain an understanding of the current state of paediatric palliative care throughout the world.

His previous work in the UK included assisting with the Department of Health £30 Million Funding for Children and Young People’s Palliative Care Projects from which he helped produce the Involve to Evolve Project and the Beyond Labels Project.

‘Involve to Evolve … was a project that had three arms, one was to design a registry of children’s palliative needs, the other was to design an online teaching module which was about getting consent and confidentiality issues to feed into that registry,’ said Mr Randall.

‘The third arm was an evaluation of that and does it make it easier to talk about paediatric palliative care and to get children on to the register.’

The Beyond Labels Project was again part of the Department of Health’s £30 Million Program and with the assistance of Karen Shaw at the University of Birmingham, attempted to adapt models of prognosis used in adult palliative care in a paediatric setting.

‘It’s the early validation work on a prognosis base tool which is colour coded. It’s very similar to the adult tools which look at stable, deteriorating, end of life and death. But it’s colour coded for children and it’s based on the work of Lynda Brook from Alder Hey Hospital which looks at surprise questions … to try and get estimates around prognosis,’ he said.

When asked, on a scale of one to ten, how much the world understands paediatric palliative care (zero meaning we know nothing, ten meaning we know everything), Dr Randall highlighted that we are not nearly as advanced as we might think but the increased collaboration between institutions are an indication that we’re taking a step in the right direction.

‘I think we’re probably further away from zero and one then we might at first think, but I don’t think we’re anywhere near seven, eight or nine,’ he said.

‘A lot of work has been done about symptom management, particularly related to pain,’ he said.

‘That knowledge is building and people are making the connection and especially some of the collaborative work is very encouraging.’

‘But to increase people’s understanding of children’s palliative care is always a good thing.’

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