This Thursday, 5 July will mark the 70th Anniversary of the founding of the National Health Service (NHS). To celebrate this milestone, we wanted to highlight the great children’s palliative care delivered by the NHS, so we asked professionals to tell us about their roles and share their reflections on supporting children with life-limiting conditions and their families. Our members at Bristol Children’s Hospital got in touch to share some fantastic insight into their roles, the support they offer families and what children’s palliative care means to them as professionals.
Amy is a staff nurse on a surgery ward at Bristol Children’s Hospital, but for the last six months she has been on secondment with the Paediatric Palliative Care and Bereavement Support Team. Below she describes how the team supports families and what she has learned during her secondment.
“The team is an acute, hospital-based service that delivers specialist palliative care and bereavement support. We’re made up of two consultants, three nurses and a clinical psychologist. We work Monday to Friday during office hours, meeting with families of babies and children for whom the future is uncertain. We provide support and guidance, helping to illuminate choices so that life can be as good as can be. As well as offering direct support to families, we offer specialist advice to the ward teams and we also regularly attend multidisciplinary meetings – both as advocates for the family, and to offer palliative care and symptom management expertise.”
“Coming from my role as a staff nurse on the surgical ward of the children’s hospital, I initially thought that palliative care would be worlds apart, but I’ve learnt that palliative care is everyone’s business. Death and dying is often taboo, especially in areas where it doesn’t regularly occur. However, all of the families that we care for have had, or will have experience of death, and we as healthcare professionals need to be equipped to support them in a sensitive and holistic manner.
“This experience has been invaluable and something that will continue to inform my practice for the future. If I had to pick the most important lesson from my time in the team, it would be that really good communication should be at the heart of every healthcare professional’s practice.”
Amy’s colleague Francis is Palliative Care Liaison Nurse. Francis told us what motivates him to work in children’s palliative care.
“I go to work so I can support families like the twins in this photo and their mother make the most of what time they have together. To help parents make a lifetime of memories in what short time they have. To help them find some kind of healing in their suffering and pain. Sitting with the suffering and pain and not trying to make it better – not giving them false expectations of a ‘cure’ or an intervention that may give them some time at the cost of losing quality time with their child. I often ask myself what would Florence Nightingale do in this situation, and I’m sure her answer would be to be present to the person in front of you and don’t try and fix it. That’s why I come to work in children’s palliative care.”
I go to work so I can support families... to help them find some kind of healing in their suffering and pain
Francis is also keen to stress that there is nothing wrong with a hospital death.
“It is often thought that most children die at home or in a children’s hospice – this is not so, and more children die in hospital. This may be because there are not the services 24/7 in their local community or capacity in their local hospice. It may also be that the family have chosen for their child to die in hospital because they feel safe and surrounded by a team that knowns them well?
“I have had the honour of working in all these settings during my career, and they all offer something different to families and to me as a nurse. Now at the end of my career I have returned to the hospital as it is here that the real challenges lie and where I feel we can make the biggest difference for families and for other professionals who still struggle with the concept and challenges of children’s palliative care.
“In most cases the palliative care journey starts for families in hospital and the data suggest for many this is where it also moves into the bereavement phase of the journey. It is our hospital-based teams’ challenge to walk alongside these families and professionals to make sure that families are left with what I call a ‘good enough memory’ of the life, the dying and the aftercare of their child. And, that professionals are left with a ‘good enough memory’ of that episode of care.”
We’re incredibly grateful to Amy and Francis for sharing their reflections and highlighting some of the ways they support children with life-limiting conditions and their families in the NHS.