Strategic thinking: improving care for children with life-limiting illnesses

There is a unique opportunity to improve the care provided to children with life-limiting illnesses in 2017, according to experts.

There is a unique opportunity to improve the care provided to children with life-limiting illnesses in 2017, according to experts

End of life care
'Exciting times ahead' to see potentially major improvements for end of life care in young people
Picture: Alamy

Major announcements were made in all four parts of the UK at the end of last year. All have the potential to improve the way seriously-ill children are looked after.

In December the National Institute for Health and Care Excellence (NICE) unveiled its final guidance for End of Life Care for Infants, Children and Young People in England and Wales. This came a month after Northern Ireland published its own plans. The Strategy for Children’s Palliative and End-of-Life Care set out a ten-year vision for services. And in October the Scottish Government announced a £30 million five-year funding package for Scottish hospices.


life-limiting conditions affect children and young people

'It is an exciting time in all four countries,' said Katrina McNamara, director of service development and improvement at the charity Together for Short Lives. 'There is potential to see major improvements.'


But she acknowledges achieving progress will be challenging. There are 50,000 children and young people with life-limiting and life-threatening illnesses, but these are spread across over 300 different conditions.

'Some are rare so there is a huge range of issues for clinical staff to manage. We have a shortage of paediatric palliative care consultants coming through and specialist nurses with the right skills and experience.'

Ms McNamara says the managed clinical networks – recommended in England and Wales – and the version put forward for Northern Ireland, will be crucial to implementing the new standards.

As well as getting the areas to 'think strategically' about staffing and skill mix, she says they will also provide a 'crucial opportunity' to improve the coordination of care as similar networks have done for diabetes and neonatal care.

'There are informal networks in most areas in the UK, but nothing like this. However, you need to invest in them and free people up to run them – they can’t just carry out network roles on top of their day jobs.'

So what will success look like? Ms McNamara says ensuring palliative care starts at diagnosis – something that is stressed explicitly in the final NICE guidance – and putting children and families at the heart of planning care through 'open, honest communication' are two of the big goals.


children and young people have life-limiting illnesses in the UK

And this includes thinking about the wider family, she says. 'Sometimes the system is not always good at this. For example, is there the space and facilities for siblings at the bedsides of sick children in hospital?'

Director of care at London’s Haven House Children’s Hospice Eileen White says a key barometer should be what progress is made on where children and young people receive their end of life care. 'A lot of babies and children die in hospital when some want to be at home or in a hospice.'

She says there needs to be more collaboration between hospices and health and social care to enable effective advance care planning – something that the Scottish Government has highlighted as a priority as part of its funding package.


She says ensuring each family gets a key worker to coordinate care will help. 'The key worker can be anyone really – a palliative care doctor, community children’s nurse, a clinical nurse specialist – you just need someone to help coordinate and guide the family through the system.'

Lead nurse for children’s cancer at Leeds Teaching Hospitals NHS Trust and member of the Royal College of Nursing’s children and young people specialist care forum Rachel Hollis, agrees. She says the guidelines that have been published fill a 'big gap'. 'We have guidelines for palliative and end of life care for adults, but not children.'


Scottish Government package over five years for hospices

However, she has concerns. 'Many receive excellent care at the end of life, but provision of services is variable across the country.'

Ms Hollis cites the scarcity of paediatric palliative care teams and access to children’s nurses 'day-and-night' as particular problems. She says much of this comes back to the ‘critical issue of the training of children’s nurses able to work across acute and community care.'

'We also need to look at specific education, training and support for nurses providing palliative and end of life care.

'There are courses out there, but access to training is a real issue as so many different types of nurses have contact with these children and they have such complex needs.'


The UK picture

England and Wales

NICE recommendations, published in December, set out detailed symptom management and called for:

  • Children to be cared for by a multidisciplinary team, provided 24/7 access to nursing care at the end of life and given support from specialist paediatric palliative care teams.
  • Children and parents to have a central role in decision-making and the needs of siblings to be considered.
  • Age-appropriate communication, involving play, music, pictures and digital media.
  • All patients to get an advanced care plan, covering life-threatening events and preferred place to die.
  • Practical support, such as schooling, and emotional and psychological support to be considered.

Northern Ireland

The Strategy for Children’s Palliative and End-of-Life Care was published in November and made a number of similar recommendations to NICE. These included access to multidisciplinary teams, rapid transfer arrangements and putting children and parents at the centre of decision making. It also called for a new network for children’s palliative care to be established to help ensure standards are met.


In October the Scottish Government announced a £30 million five-year investment in the Children’s Hospice Association Scotland. The charity provides short breaks, end of life care, bereavement services and home care support. The money starts being pumped into the system from April and will provide about half the funding needed.

Case study – putting families at the heart of care

Haven House Children’s Hospice has been praised for the way it has made sure families’ needs are put first.

A report by the Care Quality Commission last year said the London-based hospice delivers care with ‘compassion and warmth’.

A large part of this is to do with the way the hospice seeks to involve families in helping design services. It holds regular parent forums where families can meet with trustees to raise issues and lead on service development. Electronic surveys are also provided for families to rate performance and provide feedback.

It means the hospice is always looking for ways to improve the care it provides. For example, it has recently started providing outreach play, music and respite services as well as end of life care after requests from families.

Further information

Nick Evans is a health writer

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