Efforts intensify to improve monitoring of sick children

Role of nurses highlighted in bid for better recognition and response to patient deterioration

Role of nurses highlighted in bid for better recognition and response to patient deterioration

There is compelling evidence that identifying and responding to deterioration in patients is not as good as it should be.

Sick child
Identifying and responding to deterioration in children and young people is a complex issue. Picture: Getty

Such failures were responsible for 7% of patient safety incidents which caused death or severe harm reported to the National Reporting and Learning System last year.

Earlier research linked more than one quarter of preventable deaths to poor clinical monitoring (Hogan et al 2014).

Much of this evidence relates to adults. But with wide recognition that the issue is more complex for children and young people, NHS Improvement and the Royal College of Paediatrics and Child Health (RCPCH) have drawn up the first ever framework for tackling the problem in this age group (NHS Improvement and RCPCH 2016).

The document sets out six essential elements:

  • Creating a culture committed to improving patient safety.

  • Fostering a partnership between staff, patients and their families.

  • Recognising deterioration.

  • Responding quickly to deterioration.

  • Creating a system of open and consistent learning.

  • Ensuring good education and training.

Some of these require system-wide action.

The framework stresses the importance of a range of factors, from the way staff inductions are run to how mistakes are investigated.

It also highlights the lack of a UK-wide paediatric early warning score – something researchers at Cardiff University are looking at.

Meanwhile there is much that frontline staff, and nurses in particular, can do by changing the way they work, the framework says.

Involving parents

Top of the list is involving parents. Those in charge of drawing up the framework were influenced by the arguments put forward by Mother’s Instinct, a group formed by mothers who have lost children.


The propotion of reported patient safety incidents causing death or severe harm in 2015 related to a failure to recognise or act on deterioration

Joanne Hughes, who founded the group after her 20-month-old daughter Jasmine died, says that while parents regularly ‘observe, recognise and escalate’ on behalf of their child whenever they are outside of the health system, they can often feel ‘inhibited’ once inside it.

University of Northampton associate professor in children’s nursing Sarah Neill believes ‘social hierarchy’ plays a big part in this, with parents acting in a receiver capacity and professionals in a controlling one.

‘My research shows that parents often feel they can’t bother busy professionals and they don’t want to be labelled difficult for doing so.’

Critical role

So what can be done? Dr Neill says nurses have a critical role to play. ‘They spend a lot of time with children and their parents and they can help give permission to parents to speak up.

‘They can make it clear that parents have a role to play, what to look out for and who to contact.’

Dr Neill, who is involved in the Ask Sniff research programme – which is looking at ways to provide parents with practical help in recognising signs of when the care of acutely ill children needs to be escalated – says steps such as making sure parents are involved in ward rounds or asking them to check medical records and notes can help in achieving this.

Staff should not be afraid of involving children and young people themselves, she says. ‘It is important to not always assume children cannot be fully involved in their care.

‘Even a young child may know more than you would expect. They may have been in out and of hospital with a chronic condition.’

The full picture


The proportion of preventable deaths linked to poor clinical monitoring

Sue Chapman, a research fellow on acutely ill children who has worked for Great Ormond Street Hospital for more than 20 years, agrees. She says the key thing to remember is that staff should not feel shy about asking parents and young patients for their input.

‘Parents may well know more than us, particularly if it is a rare illness, so we should be open to that and make sure we listen.’

She says spotting and acting on deterioration is ‘often harder’ in children than adults. ‘It’s a complex situation. We often cannot see the full picture, or all the pieces of information might not be there. With adults we will know what is a normal heart rate – there will be one set of values.

‘But with children it will depend on their age, but even that can come with problems. A chronically ill child of three may only be the size of a one year old. So what do you use?

‘Children can deteriorate very quickly too. With adults you may get more warning, and not every hospital has a paediatric intensive care unit so you may be liaising with staff from other hospitals. This is why it is vital we identify deterioration as early as possible and act quickly.’

Including parents in warning system

Like many hospitals, the Great North Children’s Hospital uses the Paediatric Early Warning System to help identify sick children. But it has amended the assessment list to include a parents’ section.

The hospital – part of the Newcastle upon Tyne Hospitals NHS Foundation Trust – introduced the change in May. The impact is being assessed but feedback is positive so far.

Paediatric intensive care unit sister Jo Mulholland says: ‘It means that when any member of staff meets a child they will ask the parents if they are worried or concerned.

‘If the parent has a significant concern care can be escalated. We can learn so much from listening to parents.’

Checklists for parents and young people

Southampton Children’s Hospital is introducing checklists for parents and young people.

Hospital staff, working with parents and the University of Southampton, got the idea from the success of World Health Organization’s surgical safety checklist.

The Southampton checklists provide information about interventions that should happen, knowing who is in charge of care, help in understanding what is planned, and checking medications and doses.

They also explain how to obtain help if needed, including contact details for the paediatric outreach team.

Paediatric nurse practitioner Amy Withers says: ‘Parents and the children themselves notice things and we wanted to empower them to play a more active role in ensuring we provide the safest possible care.

‘Parents in particular have an instinct for knowing when something is wrong with their child. We want to ensure there is a mechanism for them to raise any concerns they have – that is where the checklist comes in.’

But this is just one of the measures the hospital has taken. A weekly meeting has been established to discuss all unplanned admissions to the paediatric intensive care unit, and parents use questionnaires to give feedback on the processes.



Hogan H, Healey F, Neale G et al (2014) Learning from preventable deaths: exploring case record reviewers’ narratives using change analysis. Journal of the Royal Society of Medicine. 107, 9, 365-375.

NHS Improvement, Royal Society of Paediatrics and Child Health (2016) A safe system framework for recognising and responding to children at risk of deterioration. 

Additional resource

Nick Evans is a health writer

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