Why is 24/7 community children's palliative care still not widely available?

A new report highlights asignificant lack of 24-hour community care cover for parents of children who have life-limiting conditions. Often parents have no choice but to take their child to the emergency department – a strain for all involved.

A new report highlights a significant lack of 24-hour community care cover for parents of children who have life-limiting conditions. Often parents have no choice but to take their child to the emergency department – a strain for all involved.

Picture: iStock

Caring for children with life-limiting conditions at home is a 24-hour responsibility for parents, requiring supportive palliative care from community children’s nurses (CCNs). 

But a report from the charity Together for Short Lives (TFSL) reveals that one third of English clinical commissioning groups (CCGs) do not fund CCNs to provide palliative care for seriously-ill children at night or weekends. Absence of this support may mean parents have to call an ambulance to take their child to an emergency department, the report claims.

'Inappropriate use of resources'


TFSL’s director of service development, and a former children’s nurse Katrina McNamara, says: 'Having to call an ambulance or bundle an ill child into a car and take them to A&E at night is upsetting, and disruptive for families, and an inappropriate use of NHS resources.


Approximate number of children in England with life-limiting or life-threatening conditions

'A&E is the wrong environment for these children, as staff may lack the individualised palliative care skills a CCN or primary care nurse (PCN) provide. Getting it right for these families is imperative, as they have no second chance to build lifelong memories of their child’s last days at home.'

Acting chair of the RCN Children and Young People’s Palliative Care Group, Rachel Cooke, is aware of the problem.

'The RCN is concerned about the lack of 24-hour community palliative care cover and has raised the issue with the government. Unlike adult palliative care, children’s services miss out because CCGs are concerned about costs, so tend to focus on numbers rather than patients’ needs.’

Life-limiting childhood conditions range from congenital heart problems in babies, to adolescents with neuromuscular disease, requiring nursing care for hours or even years in hospital, hospice or at home. But for those who choose home, the reassurance of 24-hour nursing support is essential in situations such as if a nasogastric tube is dislodged, a child’s condition deteriorates suddenly or they reach their final hours.


The government has described CCNs as 'the bedrock of the pathways of care’ for such children and is committed to prioritising children’s palliative care; while National Institute for Health and Care Excellence recommendations have been reinforced by new quality standards.

So what is going wrong? A shortage of CCNs is to blame for some parents facing a 'postcode lottery’ of 24-hour home nursing support, suggests the report.


Percentage of English CCGs who fund CCNs to provide 24-hour palliative care

Indeed, CCGs face challenges in fulfilling children’s palliative care commitments, admits Ms McNamara. ‘Recruitment difficulties and nurses quitting the profession have led to a dwindling CCN workforce. But clinical nurse leaders can raise CCGs’ awareness of community needs to create skilled, but realistic, workforce plans, comprising generalist and specialist PCNs.’

Ms Cooke agrees: 'Pockets of excellent practice exist where senior PCNs are working creatively across boundaries, communicating measured patient need to CCGS and establishing 24-hour nursing support for home-based patients.'

What Together for Short Lives found

  • Children’s palliative care services in England are 'patchy and inconsistent' 
  • Although 55% of English clinical commissioning groups (CCGs) pay for primary care nurse (PCNs), just 44% commission these services out of hours
  • Although 93% of English CCGs pay for community children’s nurses, just 67% commission these services out of hours – a 6% decrease since 2016
  • The government’s end-of-life care commitment is being implemented in only half of English CCGs
  • Only 31% of CCGs are implementing National Institute for Health and Care Excellence (NICE) guidelines on end of life care for infants, children and young people with life-limiting conditions. Only 29% of CCGs commission NICE’s required multidisciplinary paediatric palliative care teams, which must include one PCN
  • About 17% of CCGs are not paying for age and developmentally appropriate services for young people with life-limiting and life-threatening conditions
  • There is a postcode lottery of bereavement care for parents whose child has died. Almost 17% of CCGs do not pay for this support and almost half fail to commission it out of hours


In London, where CCN numbers are low, Julie Bayliss, nurse consultant in children’s paediatric care at Great Ormond Street Hospital, leads a team of five palliative care nurse (PCNs) specialists running a 24-hour on-call service for home-based patients with life-limiting conditions.


‘If a parent or professional worries that a child might experience increasing pain or nausea overnight or at weekends, our team will communicate closely and adjust medication through a detailed symptom-management plan.

'Similarly, if it is anticipated a child might die overnight, we ask parents how they would like to be supported. Whether they choose hospital, hospice or prefer staying at home, we provide phone support,’ says Ms Bayliss.

Ms Bayliss concedes that if equipment such as syringe-drivers fail, patients must be transferred to hospital. ‘Even then our on-call team is available to support patients and hospital staff.’

Keyed-in to family dynamics

Despite medical and psychological backup, helpline work is challenging, but enormously rewarding, says Ms Bayliss.

‘Supporting parents requires sensitivity and being emotionally keyed-in to individual family dynamics. But we see this as a privilege if it enables a dying child to remain at home.’


South Warwickshire NHS Foundation Trust consultant nurse for children with complex health needs, David Widdas has developed a successful, specialist community children’s palliative care service, including 24-hour CCN support plus a nurse-led helpline.


Number of whole time equivalent CCNs in England, which is just 10% of RCN recommendations

Source: Together for Short Lives (2017)

Describing the service as a 'sustainable one-stop shop’, Mr Widdas says: ‘Our vision has been to pull children’s and specialist services together to create a team of 75, which includes CCNs, paediatricians, support workers and nurses specialising in palliative care, cystic fibrosis and rheumatology. For example, a birth-injured baby might initially require tube feeding by a CCN, a PCN if needs increase, or a support worker if the child later attends school with a tracheostomy.

‘Our care is highly individualised, because every team member understands each child’s condition at any given time, by being updated on children’s palliative care needs at monthly supportive care forums. Our strategic palliative care network, which includes clinical staff, CCG and local authority members, also meets quarterly.'

What can be done?

So how, in an era of NHS cuts and falling nurse numbers has this effective 24-hour community children’s palliative care service been created?

'We’ve developed our service around children’s predicted needs by proactively grasping funding opportunities – such as the Diana teams – and communicating patient’s needs to CCGs. Though nurse recruitment is a struggle, we seek training opportunities through our local university. For example, up-skilling healthcare assistants practically and theoretically.'

National Institute for Health and Care Excellence recommendations

  • Children cared for at home at end of life have 24-hour access to a community children's nurse and advice from a children’s palliative care consultant
  • Children receive care from a multidisciplinary team which includes a children’s palliative care specialist
  • Children and parents are involved in developing an advanced care plan
  • Children and parents are given access to emotional and psychological support
  • Parents and carers of children approaching end of life or who have died should be offered support for their grief and loss
  • Children have a named medical specialist coordinating their care

(NICE 2017)



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