28 September 2017
Bristol North West MP gains wider understanding of palliative care following visit to Bristol Royal Hospital for Children
Bristol 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."
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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.
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