Shortage of nurses and doctors hitting care for terminally ill children

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There are too few skilled nurses and consultants able to care for terminally ill children in England, a new survey published today by Together for Short Lives (TfSL) has found.

This “workforce crisis” means that too many children and their families are unable to receive the round the clock care packages they need, while others are missing out on vital short breaks for respite.

Neither the Government, NHS England and NHS Improvement nor Health Education England are taking the action needed, TfSL says. The children’s palliative care charity is calling on ministers to urgently address this crisis in the NHS People Plan, by assessing the demand for professionals, investing in specialised services and taking specific measures to boost nurse numbers.

The findings of the study, called A workforce in crisis: children’s palliative care in 2019 include:

  • 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 per cent. This is higher than the overall NHS nursing vacancy rate of 11 per cent, which is also worryingly high. Two thirds (67 per cent) 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 per cent) 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 per cent. In 2018, the overall vacancy rate for children and family social workers in England was 16 per cent.

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 round the clock care. This is because there are too few carers with the skills and experience needed.

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 fed via a feeding tube, 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. Gail said:

“As my son has recently reached the continuing care threshold, our local NHS clinical commissioning group are providing a care package for us for the next six to eight weeks. It is a problem finding the right staff and making sure they turn up for day and night shifts. It has opened my eyes to how little help we get on a regular basis and I am battling to try and get more help long term – both day and night.

“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. The carers we do have need to be trained by us to administer his medication and be able to feed him through his gastrostomy feeding tube.”

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:

  • 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.
  • 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.
  • Boost nursing numbers by taking the actions recommended by the Royal College of Nursing, including: investing at least £1 billion a year into nursing higher education, investing at least £360 million per year for nurses’ continuing professional development and legislating to make clear who is accountable for workforce supply and planning in England – and what establish safe nursing staffing levels in law.

Together for Short Lives will be formally launching its new report to MPs and peers at Westminster tomorrow. The charity is also 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.

Andy Fletcher, Chief Executive of Together for Short Lives, said:

“The NHS Long Term Plan identifies children’s palliative care is an important priority for the NHS. 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 round the clock care they need. They cannot wait any longer.

“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.”

Commenting on TFSL’s new report Anita Hayes, Head of Learning and Workforce at Hospice UK, said:

“We are concerned about the shortage of doctors and nurses available to provide care for terminally ill children and their families  and welcome this important report by Together for Short Lives.

“Healthcare providers across the different sectors and health education and training bodies need to work together in partnership to tackle this issue to help ensure that children with palliative and end of life care needs and their families receive the vital round- the-clock care they need, both now and in the future.

“The current challenges facing the end of life care workforce are not just an issue for children’s hospices but also affect  hospices for adults, some of which are struggling to recruit and retain staff. Tackling these challenges is a key priority for Hospice UK and we are working with hospices and partner organisations across the UK on innovative approaches to better support and retain end of life care staff across all care settings.”

For more information visit Together for Short Lives


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