Planning and providing end of life care for children is a “major challenge” for specialist nurses in Wales, according to a major report that highlights current barriers to staff networking.
Just five specialist nurses are currently charged with providing care to over 1,000 young patients with a range of complex needs, warned the report, which was published today.
It pulls together findings from a system-wide review of services currently available for children in Wales who need specialist care throughout their lives and are expected to die during childhood.
“Five specialist paediatric palliative care nurses covering the whole of Wales means that priorities have to be made, and… that planning and providing end of life care, especially in the home, is a major challenge for most”
The report suggested that, at any one time, there were 1,050 children in Wales that would benefit from specialist paediatric palliative care, around 10% of which would die in any one year.
It said the relatively small numbers in need of care had resulted in their needs becoming swallowed up by wider plans for adult palliative and end-of-life care.
The report, published by the University of South Wales and commissioned by the charity Tŷ Hafan, highlighted that previous reports on paediatric palliative care services in Wales had “clearly set out” what was needed to improve services. In particular, it highlighted the so-called Sugar report, which was written by the All Wales Palliative Care Planning Group and published in 2008.
The Sugar report called for care to be delivered by specialist multidisciplinary teams, including a clinical nurse specialist and community paediatric nursing support. It suggested as much support would take place in the home as clinical settings, and there needed to be a “sufficient staffing level of community nurses to allow this for all”.
The new report, launched with the support of ministers, noted that improvements had been made in recent years but called for a further boost to the support available. “Progress now seems to have stalled, and needs new impetus,” it stated.
The report warned that “limited specialist resources” remained a problem for the clinical workforce in providing palliative and end of live care for children across a large geographical area and complex range of conditions.
“The current working arrangements are not sustainable,” it stated. “For example, five specialist paediatric palliative care nurses covering the whole of Wales means that priorities have to be made, and it appears from the evidence they gave, that planning and providing end of life care, especially in the home, is a major challenge for most.”
It added: “The specialist paediatric nurses both in the workshops and in interviews described how challenging it was for them to plan end of life care, access continuing care funding and mobilise the resources required to enable a child to die at home.”
“The numbers of families affected might be modest but the impact of the services and the care we all provide to those in unimaginable circumstances is enormous”
However, to ease the problem of tight resources, the report suggested there was “some scope” to adopt the model being used West Wales, where health professionals were networking and working across boundaries.
There, the paediatric palliative care nurse had worked with a paediatric oncology outreach nurse specialist to implement the Hywel Dda Palliative Care Outreach Nursing Service, with “active support” from line managers.
Care is planned and coordinated by one of the specialist nurses, based on their own capacity and that of bank nursing staff, to provide the support required for a child to die at home for a maximum of three weeks.
The report said the West Wales model “deserves study elsewhere”. However, it noted that healthcare staff in other parts of the country said they had encountered barriers, both professional and geographical, to developing new ways of working.
“Specialist nurses felt that they were not allowed by their managers to work outside of their specific geographical areas and duties as detailed in their individual job descriptions,” said the report.
“The inference was that this made it very difficult for them to maximise the potential benefits of working more closely together,” it warned.
Overall, the report praised the significant commitment across the NHS in Wales and from specialist clinicians to providing good paediatric palliative care.
However, it described how the system of care was built around a small number of highly committed individuals working across complex structures and, as a result, was fragmented and fragile.
Its seven key recommendations included giving paediatric palliative care the “same status” as that for adults.
It suggested this could be achieved either by bolstering children’s representation on the country’s End of Life Implementation Board – an expert group set up in the wake of the Sugar report – or by establishing a separate Paediatric Palliative Care Implementation Board.
It also called for the development of a Paediatric Palliative Care Implementation Plan to run alongside the country’s existing End of Life Implementation Plan to better take account of the specific needs of children in Wales.
In addition, it backed the implementation of a “sustainable” 24/7 specialist telephone advice service to “ensure that timely and readily accessible advice” was provided to healthcare professionals for symptom control.
“Consideration should be given to working with other regions of the United Kingdom to develop a national service,” said the report.
Tŷ Hafan’s deputy chief executive Jeremy Jackson said: “The numbers of families affected might be modest but the impact of the services and the care we all provide to those in unimaginable circumstances is enormous.
“Developing a better understanding of how paediatric palliative care in Wales must evolve to meet future needs is essential to maintain the quality of care, extend the service and maximise its impact,” he said.
He added that, following the support of the NHS and ministers in launching the report, he was confident that it would “act as a catalyst for further engagement”.
Health minister for Wales Professor Mark Drakeford said: “I welcome Tŷ Hafan’s commitment to working in partnership with the End of Life Care Implementation Board and the Welsh government to drive forward key improvements to end-of-life care for children and young people in Wales.”