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28 September 2017

Bristol North West MP gains wider understanding of palliative care following visit to Bristol Royal Hospital for Children

Darren JonesBristol North West MP, Darren Jones, made an educational visit to Bristol Royal Hospital for Children (BRHC) to gain a wider insight into paediatric palliative care.

Darren met with the palliative care and bereavement support team at Bristol Royal Hospital for Children to talk about the team's key roles at the hospital and the delivery of palliative care locally and regionally.

Darren Jones, Bristol North West MP, said: "I was delighted to visit the Bristol Royal Hospital for Children. The work of the palliative care and bereavement support team is crucial in supporting children and their families at the most difficult of times. I was impressed by the dedication, skill and empathy of this small but vital team, and I have come away from my visit with greater knowledge and understanding about the hospital's work."

Francis Edwards, paediatric palliative care liaison nurse at BRHC, said: "We were pleased to welcome Darren to the hospital, and discuss with him aspects of family care and the issues they face both in hospital and the community.

 "It was important for us to highlight the Together for Short Lives' Core Care Pathway for children with life-limiting and life-threatening conditions, which starts at the point of recognition or diagnosis, often in one of the UK's children's hospitals, and continues from that point into bereavement. I explained to Darren how the whole pathway can rollover many years for families and how we have been involved in localising the pathway  and how families will spend a great deal of time in the acute sector of which there is little understanding about this stage of their palliative care journey.

"We want to thank Darren for taking the time to visit the hospital and our teams."


 What is palliative care?

Paediatric palliative care is the business of everyone who works with children with life-limiting or life-threatening conditions.  The term 'Palliative care' does not describe a diagnosis or single intervention; it is a philosophy of care and not dependent on location. It can be seen as a thread that weaves through the lives of all children with a life-limiting illness, alongside active interventions and treatment.

Paediatric Palliative care is:

  • Care that maximises the comfort, wellbeing and quality of life of children with a life-limiting illness, and of their family and carers. It is very different to end-of-life care.
  • Palliative care does not begin at the end of life but should start from the time a child is diagnosed with a life-limiting illness.
  • End-of-life care is the end stage of palliative care where the child is very close to death. 

Together for Short Lives' Core Care Pathway

This CoreCare Pathway is designed to provide a framework for the care of any baby, child or young person with a life-threatening or life-limiting condition. It aims to ensure that families experience a co-ordinated approach to family centred care throughout their child's life. There should be clear and open communication and support to enable the family to build up and maintain access to an appropriate network of support, regardless of where they are cared for, whether in hospital, at home, or in a children's hospice.