Report: A workforce in crisis – Children’s palliative care in 2019 – Together for Short Lives

A growing shortage of skilled children’s palliative care doctors and nurses across England has reached crisis point, a new report from Together for Short Lives reveals. The charity says the situation is leading to seriously ill children and their families missing out on crucial out of hours care and vital short respite breaks.

A workforce in crisis: children’s palliative care in 2019, is calling on government ministers to take urgent action to address the children’s palliative care workforce crisis in the NHS People Plan.

The report shows a children’s palliative care workforce at breaking point:

  • There are just 15 children’s palliative care consultants in the UK – the Royal College of Paediatrics and Child Health (RCPCH) suggests there should be 40-60.
  • The nursing vacancy rate in children’s hospices is growing, with posts increasingly difficult to fill. On average, children’s hospices told Together for Short Lives that they had a vacancy rate of 12.2%. This is higher than the overall NHS nursing vacancy rate of 11%, which is also worryingly high. Two thirds (67%) of children’s hospice nursing posts remain vacant for three months or more.
  • There are too few skilled children’s nurses to fill vacant posts in the NHS and children’s hospices. Over half (58%) of children’s hospices cite an overall lack of children’s nurses as a significant factor in the vacancy rates they are experiencing.
  • There are too few community children’s nurses (CCNs) employed by the NHS: safe staffing levels recommended by the Royal College of Nursing (RCN) suggest there should be around 5,500 CCNs in England. In fact, the NHS in England employs just 574.
  • There are shortages among other important health and care professionals: the vacancy rate for allied health professionals (AHPs, including physiotherapists, occupational therapists, and psychological therapists) is 14%. In 2018, the overall vacancy rate for children and family social workers in England was 16%.

Serious impact

These staff shortages are having a direct impact on terminally ill children and their families. Despite being assessed as needing 24-hour support by the NHS, some children and young people are not getting around the clock care. This is because there are too few carers with the skills and experience needed.

It is a problem finding the right staff and making sure they turn up for day and night shifts.

Gail Bedding, mother of 15 year-old Fergus

Gail Bedding from Hampshire is mother of 15 year-old Fergus, who has a condition called microcephaly. Fergus’s needs are complex – he uses a wheelchair, is non-verbal, is gastrostomy fed, has very little communication and has recently undergone spinal fusion surgery. He needs constant nursing care, but he and his family struggle to access the support they need. “My son has recently reached the continuing care threshold, so our local NHS clinical commissioning group is providing a care package for us for the next 6-8 weeks,” Gail says. “It is a problem finding the right staff and making sure they turn up for day and night shifts.”

Gail says the experience “has opened my eyes” to how little help the family receive on a regular basis, and she is now “battling” to try and get more around the clock care in the long term. “We live in a rural area, and therefore it is difficult to recruit the right people to meet Fergus’ needs and for him to mix with his peers and have any sort of social life,” she says. “The carers we do have have to be trained by us to administer his medication and be able to feed him through his gastrostomy feeding tube.”

Urgent action needed

“The NHS Long Term Plan identifies children’s palliative care is an important priority for the NHS,” says Together for Short Lives CEO Andy Fletcher.

“Yet the services that provide it are struggling with a dangerous mix of growing staff shortages and rising caseloads. Terminally ill children and their families are missing out on the care they need.”

Together for Short Lives is calling on ministers to end the children’s palliative care workforce crisis by making sure the following measures are included in the NHS People Plan:

  1. Health Education England to urgently assess the gaps in the children’s palliative care workforce, include the demand from children’s hospices in its planning models – and develop a competency framework for professionals providing children’s palliative care.
  2. NHS England and NHS Improvement’s specialised commissioning team to urgently fund NHS trusts and children’s hospices to create specific specialist medical training posts.
  3. Boost nursing numbers by taking the actions recommended by the Royal College of Nursing, including at least £1 billion a year into nursing higher education, and at least £360 million per year for nurses’ continuing professional development.

Together for Short Lives will be formally launching their new findings to MPs and peers at Westminster on Tuesday 22 October and are encouraging the public to sign an open letter to Health and Social Care Secretary Matt Hancock asking him to make sure that these vital steps are taken.

“Families cannot wait any longer,” says Andy Fletcher. “It is imperative that ministers make sure the NHS People Plan sets out a programme to boost the number of professionals working with these children in the NHS and voluntary sector, in hospitals, children’s hospices and the community.”

Download the report here.

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