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Ensuring a sustainable children’s palliative care workforce

There are too few professionals with the skills and experience needed to provide children’s palliative care in hospitals, children’s hospices and in the community.

Together for Short Lives has found that:

  • There are too few community children’s nurses (CCNs) employed by the NHS: CCNs provide the bedrock of children’s palliative care. If safe staffing levels recommended by the Royal College of Nursing (RCN) were being adhered to, 5,500 CCNs would be working in England. Yet there are only 713 community children’s nurses employed by the NHS in England. While other NHS nurses do provide community-based care to children, this is an indicator of the shortages in this crucial part of the sector.
  • There are too few specialist children’s palliative care consultants: The Royal College of Paediatrics and Child Health (RCPCH) estimates that 40-60 specialist children’s palliative care consultants are needed in the UK. Worryingly, there are currently only 18 in England. This suggests a significant deficit of 22-42 consultants.
  • The growing vacancy rate in the non-medical care and support vacancy rate in children’s hospice charities is higher than in the NHS – and posts are increasingly difficult to fill: In 2022, the average vacancy rate for roles equivalent to Agenda for Change bands 2-9 inclusive (including nurses) for children’s hospices charities in England is 18.4%. The average vacancy rate for roles equivalent to Agenda for Change bands 5-9 inclusive (which we have historical data for) is 18.6%, compared to 12.2% in 2019, 11% in 2016 and 10% in 2015. The NHS nursing vacancy rate in quarter three of 2021/22 was 10.5%[1], which is also worryingly high. Two thirds (67%) of vacant posts in children’s hospices were proving hard to fill (vacant for three months or more), which is unchanged from 2019. 65% reported that posts were hard to fill in 2016 and 57% in 2015. Just under a quarter (24%) of posts had been vacant for over 12 months, compared to 25% in 2019.
  • There are too few skilled professionals to fill vacant posts in children’s hospices: 92% of children’s hospices cite an overall lack of professionals as a significant or very significant factor in the vacancy rates they are experiencing, compared to just over a half (58%) in 2019.
  • There are shortages among other health and care professionals who support seriously ill children and their families: in England in 2021, the overall vacancy rate for children and family social workers in England was 17%.

Specific skills are needed when speaking to children and families about the choices available to them and developing advance care plans with them; there is no shortage in the number of people who have the desire to provide the complex palliative care and support that children need. However, there is a dearth of education and training places and shortages in children’s nurses and children’s palliative care consultants are particularly acute.

We are concerned by the low number of national GRID training posts available for paediatric palliative medicine consultants. There is currently one whole time equivalent (WTE) GRID post in the UK for 2022; because it takes two years for existing paediatric consultants to complete GRID training only one whole time specialist consultant is being produced every two years. This is not enough to fill the existing number of consultant posts available in the UK.

Opportunities for general paediatricians to undertake special interest (SPIN) training in children’s palliative care is also compromised by a lack of training posts. This is despite considerable interest to develop capability in this field. This is being caused by the lack of paediatric palliative medicine consultants and a dearth of funding for these posts from HEE.

This paucity of speciality palliative medicine consultants means that it is particularly challenging for NHS trusts to provide and maintain specialist children’s palliative care services within their organisations.

We estimate that a total of 10 GRID training posts and 12 SPIN training posts for consultant paediatricians could be provided by the existing specialist paediatric palliative medicine consultant workforce – if funding was available from HEE. We estimate that each training place would cost £113,000 per year; we have calculated this based on the cost of the time of the specialist consultants and senior nurses who would need to provide the training, in addition to the salary cost of the consultant undertaking the training. These posts would cost a total of £2.48million per year to fund. However, we estimate that only £226,226 is being spent every year on providing GRID and SPIN training to consultant paediatricians, which leaves an annual funding gap of £2.26million.

We support the call from RCPCH that, to meet the challenges of making sure that there enough professionals who have the skills and experience to meet the needs and wishes of children and families, the existing workforce should be mapped to establish a baseline and service delivery assessed against required standards.

We welcome the work of ‘Managing Complexity in Children’s Healthcare: A Partnership for Change’, a group of individuals and organisations committed to working together and sharing good practice and resources. This collaborative aims to improve the healthcare of children with medical complexity and their families – and provide support and educational materials for the professionals looking after them.

We also welcome the Children’s Palliative Care Education and Training UK and Ireland Action Group’s Education Standard Framework[4]. This supports provides a sustainable, standardised approach to educating and training children’s palliative care professionals in the UK. We ask NHSE/I, HEE and the Council of Deans of Health to work with us to make sure that this approach becomes embedded in education and training for all children’s palliative care professionals in England.

We recognise that the workforce challenges which limit the extent to which seriously ill children have access to 24/7 palliative care are part of wider shortages in the healthcare workforce in England. We acknowledge that the government has committed to an additional 50,000 nurses by the end of this parliament, in addition to five new medical schools. We also accept that specialist children’s palliative care education and training places for health professionals, such as GRID and SPIN training, can only be expanded at a rate which is proportionate to an expansion to education and training for professionals in other areas of healthcare.

To overcome the children’s palliative care workforce challenge, we call for action from the following organisations:

The government

The government should make sure that, using NHSE/I’s children’s palliative care service specification, NHSE/I and HEE work with stakeholders to develop a plan to use the existing children’s palliative care workforce as effectively as possible. This should include organising services into NHS-commissioned children’s palliative care operational delivery networks (ODNs), as is the case for neonatal critical care[5].

When the government settles the health workforce education and training budget with the NHS, it should include funding to expand the children’s palliative care workforce. This should include an aspiration to increase spending on specialist paediatric palliative medicine GRID and SPIN training to £2.26million per year, proportionate to an expansion in the overall medical education and training budget. Ministers should also make sure that the additional 50,000 nurses that the government has committed to by the end of this parliament includes children’s nurses with the skills and experience to provide palliative care to children in hospitals, children’s hospices and at home.

We join other bodies including the Royal College of Nursing in asking that the government:

  • introduces accountability for provision of workforce in legislation in England
  • acts to increase the supply of registered nurses
  • removes financial barriers to international health professional recruitment throughout the UK.

Take part in our campaign now to call on the Prime Minister to take this action urgently.

HEE (and then NHSE/I following the merger with HEE in July 2022)

  • Urgently assess the gaps in the children’s palliative care workforce across the range of professions who care for seriously ill children, across hospitals, children’s hospices and community services.
  • Assess the demand for nurses from children’s hospice organisations and the independent sector and include it in their planning models.
  • Develop a core skills education and training framework for children’s palliative care; this could help employers to identify key skills for roles and teams, conduct training needs analysis and plan, design and commission appropriate levels of and systems for training. This could also ensure robust peer review systems can be established.
  • Focus specifically on outlining career pathways and providing guidance for delivering outcomes-led education for children’s palliative care nurses.
  • Fund NHS trusts to create more specialist medical training posts. This would help to make sure that paediatric palliative medicine GRID and SPIN training can take place.

Education providers

  • Education providers should make sure that children’s palliative care is embedded in undergraduate and postgraduate medical and nursing courses; we note that children’s palliative care should be embedded in nursing courses in a way that is consistent with existing regulations.
  • If it is found that there are too few children’s nurses likely to fill posts across all types of healthcare provider, for example, universities should increase the number of places they offer to undergraduates.

ICSs

We believe that, in carrying out their people function, ICSs should develop actions plans to make sure seriously ill children and their families are well supported by children’s palliative care professionals. The NHS Long Term Plan states that children’s palliative care is a priority. Statutory, voluntary and independent sector providers will all be crucial in making sure that seriously ill children are able to access the palliative care they need. On this basis, it is vital that ICSs secure sustainable children’s palliative care workforces across all of these sectors.

Policy and influencing