Access to 24/7 children’s palliative care

The UK Government and NHS England have published a number of clear policies which provide an imperative for providing palliative care to seriously ill children and their families. However, our research has found a postcode lottery across England with some families of seriously ill children unable to choose end of life care at home that fully meets National Institute for Health and Care Excellence (NICE) quality standards, 24 hours a day, seven days a week.

NICE’s standards are clear that:

• children and young people with a life-limiting condition and their parents or carers should have the opportunity to develop an advance care plan
• children with a life-limiting condition should have a named professional who leads and coordinates their care
• children with a life-limiting condition and their parents or carers should be given information about emotional and psychological support, including how to access it
• children with a life-limiting condition should be cared for by a multidisciplinary team that includes members of the specialist paediatric palliative care team
• parents or carers of children approaching the end of life should be offered support for grief and loss when their child is nearing the end of their life and after their death
• children approaching the end of life and being cared for at home should have 24-hour access to both children’s nursing care and advice from a consultant in paediatric palliative care.

Worryingly, our mapping work, carried out in 2021, found that the extent to which seriously ill children and their families can access services which achieve these standards is very patchy and depends on where they live. Of particular concern is children and families’ access to end of life care at home, 24 hours a day, seven days a week, provided by nurses and supported by advice from consultant paediatricians who have completed sub-specialty training in paediatric palliative medicine (also known as GRID training). While this standard is met in just over half (54%) of local authority areas in England during normal working hours, it is not being met four fifths (81%) of local authority areas 24/7. This means that the 24/7 standard is not being met in nearly four fifths (79%) of integrated care system (ICS) areas. It is only being met fully in three ICS areas (7%). It is being partially met in six (14%) ICS areas.

The forms submitted by each children’s palliative care network in England, on which this mapping is based, are also available to view here:

• East of England
• East Midlands
• London
• Kent and Medway
• Northern (North East, including north Cumbria)
• North West (Cheshire and Merseyside, Greater Manchester and Lancashire & South Cumbria)
• South West
• Thames Valley (Berkshire, Buckinghamshire, Oxfordshire and North East Wiltshire)
• Wessex (Sussex, Hampshire, Berkshire and Isle of Wight)
• West Midlands
• Yorkshire and Humber.

There is inconsistency between what is commissioned and what is provided. Just a third (33%) of NHS clinical commissioning groups (CCGs) in England have a service specification which states that infants, children and young people approaching the end of life and being cared for at home should have 24-hour access to both children’s nursing care and advice from GRID-trained specialist paediatric palliative medicine consultants.

This means that CCGs in just under a fifth (19%) of ICS areas have a specification which says that children approaching the end of life should have access to 24-hour palliative support at home. The standard is partially commissioned by CCGs in just over a fifth (21%) of ICS areas – and not at all in nearly half (45%) of ICS areas.

Our mapping shows that, in some areas, standards are being met without commissioned service specifications being in place. This suggests that the costs of some clinical children’s palliative care services – particularly some specialist services provided by NHS acute trusts – are being absorbed by the NHS trusts themselves or funded from charitable sources without being fully reimbursed by CCGs.

Where it is available, children’s end of life care at home is provided by children’s nurses as part of NHS community children’s nursing (CCN) teams, hospice at home teams, hospital outreach teams or a combination. Nurse consultants, clinical nurse specialists and/or children and young people’s oncology outreach and symptom care nurse specialists (CYPOONS) have the skills and experience to manage a range of symptoms, including prescribing where needed. In many cases, the medical support provided by consultant paediatricians, including those who have completed special interest (SPIN) training in paediatric palliative care, is sufficient to manage these symptoms.

However, it is important that nurses and paediatricians providing children’s end of life care in family homes in every part of England have access to advice from GRID-trained specialist paediatric palliative medicine consultants. This should be organised using a hub and spoke network model in each region. They have the skills and experience to meet the most complex palliative care needs, either directly or remotely through advice provided to other paediatricians. This is the level of care is set out in guidance and quality standards published by NICE.

The lack of access to 24/7 community children’s nursing and/or GRID-trained specialist paediatric palliative medicine consultants that we have found means that too many seriously ill children and their families do not have choice and control over how, when and where they receive palliative care. Too many are unable to access end of life care at home if that is what they choose. This is a serious health inequality. When families wish to be cared for at home – and it is in the best interests of the child to be there – keeping them in hospital because of a failure to invest in community-based children’s palliative care represents an ineffective use of NHS resources.

As was the case when the APPG published its ‘End of Life Care: Strengthening Choice’ report in 2018[1], we believe that key barriers preventing end of life care and wider symptom management for seriously ill children and their families being sustainably planned, funded and provided are:

Workforce

In the short term, there are currently too few nurses, paediatricians and other professionals with the skills and experience to provide children’s palliative care in hospitals, children’s hospices and in the community.

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. There are only 18 GRID-trained specialist paediatric palliative medicine (PPM) consultants in the UK, when the Royal College of Paediatrics and Child Health (RCPCH) estimates that 40-60 are needed. In 2022, the average vacancy rate for non-medical care and support roles (including nurses) equivalent to Agenda for Change bands 2-9 for children’s hospices charities in England is 18.4%.

We estimate that there are 10 sites across the UK that could provide GRID and special interest (SPIN) training in PPM to consultant paediatricians – and there are many who wish to undertake this training. However, only one whole time equivalent (WTE) GRID training place is being funded in the UK in 2022. We estimate that there is a funding gap of £2.26million in investment in GRID and SPIN training – in addition to other funding gaps in educating and training other professionals, including children’s nurses.

Funding

Positive progress has been made in recent years, including NHSE/I’s decision to ringfence and increase the Children’s Hospice Grant to £25million by 2023/24 – and the commitment in the Long Term Plan to match fund CCG children’s palliative care funding by up to £7million a year by 2023/24.

Despite this we estimate that the NHS should spend approximately £385million every year to meet the NICE children’s palliative care standards. Yet it will be spending only £84million every year on children’s palliative care by 2023/24. We therefore estimate that there will be a £301million gap in NHS spending on children’s palliative care in 2023/24.

Accountability

We welcome the legal duty on integrated care boards (ICBs) in the Health and Care Act 2022 to commission palliative care as they consider appropriate for meeting the reasonable requirements of the people for whom they are responsible.

However, we have specific concerns about the extent to which the government and NHSE/I will hold ICBs to account for the way in which they commission children’s palliative care.

The action we recommend

Whether or not seriously ill children and their families can access the palliative care they need at home, out of hours and at weekends should never depend on where they live. It cannot be right that the costs of some children’s palliative care services – particularly some specialist services provided by NHS acute trusts – are being absorbed by the NHS trusts themselves or funded from charitable sources without being fully reimbursed by CCGs. We therefore call for the following, urgent action:

1. The government should make sure that, using NHSE/I’s children’s palliative care service specification, NHSE/I and Health Education England (HEE) work with stakeholders to develop a plan to use the existing children’s palliative care workforce as effectively as possible, which includes organising services into NHS-commissioned children’s palliative care operational delivery networks (ODNs).
2. 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.
3. As the government increases NHS funding by a total of £10.8billion in the period to 2024/25[2], it should make sure that the NHS invests an additional £301million in children’s palliative care in England every year to meet the funding gap for services. This NHS should also maintain existing funding streams for the long term, including children’s palliative care match funding and the Children’s Hospice Grant.
4. We call on the Secretary of State for Health and Social Care to use their new powers in the Health and Care Act 2022 to direct NHSE/I to make sure that all seriously ill children in England and their families should be able to choose to receive palliative care at home, 24 hours a day, seven days a week, if it is in their best interests. This should build on the legal duty on integrated care boards (ICBs) in the Health and Care Act to commission palliative care as they consider appropriate for meeting the reasonable requirements of the people for whom they are responsible.
5. Integrated care partnerships (ICPs) should take our findings into account as they determine the health and healthcare needs of their population. Integrated care boards (ICBs) should commission children’s palliative care services in a way which meets the NICE standards. NHSE/I should regularly monitor the extent to which ICPs and ICBs do this through the new strategic clinical networks (SCNs) – and hold them to account if they fail to do so.

If these actions are not taken now, more seriously ill children and their families will be denied choice and control over their palliative care, particularly at end of life, as the number of cases of life-limiting and life-threatening conditions in children increases. The NHS will also waste money unnecessarily: NICE have already calculated that by implementing its guidance in full, valuable non-cash savings could be generated for the NHS, created by fewer unplanned, emergency admissions to hospital among seriously ill children, some of whom may prefer to access palliative care at home.

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