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Parent and Carer Insight in Paediatric Surgery: an essential data point 

When children are unwell, there is understandable concern and worry. In paediatric surgery, our patients range from neonates to teenagers, and along with our patients we meet those close to them - parents; grandparents; siblings and carers. Many of our patients are unable to advocate for themselves or articulate their symptoms. This is only one reason why these people, who know them best, can become vital partners in care. Their input isn鈥檛 simply anecdotal; it is clinically significant. 

Listening to Silent Symptoms 

Unlike most adult patients, children often can鈥檛 tell us what hurts or feels different. Healthcare professionals in Paediatrics gain experience in communicating with children of all ages, which is necessary in making a comprehensive clinical assessment. However, it is crucial to involve those who know the patient best. A child recovering from laparotomy may struggle to express early signs of complication, but a carer鈥檚 observation of their change in demeanour may add to concern. A stoma may seem 鈥渇ine鈥� on visual inspection, yet a parent who manages it at home might notice changes in output or colour before it becomes a clinical issue. What is normal to us may not be normal for them, and vice versa.鈥� 

What may sometimes seem like over-cautious concern can, in fact, signal early deterioration. This is particularly relevant to the Paediatric setting as children have limited physiological reserve and can deteriorate quickly. Indeed, several studies have shown that parental concern is a reliable predictor of serious illness in children, particularly in non-verbal or post-operative patients (1). 

Learning from experience 

The importance of listening to families has been underscored by tragic cases such as that of Martha Mills, a 13-year-old who died in 2021 following a missed opportunity to treat sepsis after a pancreatic injury. Despite her family鈥檚 repeated concerns, no senior review was triggered.鈥� 

Martha鈥檚 Rule now provides a formal mechanism for patients, families, and staff to request an urgent clinical review from a team outside the primary care team if they feel their concerns are not being addressed (2). We were fortunate to gain insight into this from Martha鈥檚 mother, Merope Mills, in the June edition of Surgeon鈥檚 News, where she described her experience and the development of Martha鈥檚 Rule. As of 2024, the rule is being implemented in over 140 NHS trusts and is currently in phase 2. The 3-stage process of Martha鈥檚 rule is described in a number of accessible areas (RCPCH, NHSE) (3). 

Initiatives like Martha鈥檚 Rule and the updated National Paediatric Early Warning System (PEWS) reflect a system-wide recognition of the importance of carer insight. The revised PEWS tool explicitly incorporates family concern alongside clinical observations (4). 

The relevance of these patient safety initiatives to paediatric surgery is clear: our patients can deteriorate quickly, and their signs may be subtle. To keep our patients safe we need to listen to the concerns of those close to them. Particularly in complex cases 鈥� for instance, post-NEC resection, redo anorectal procedures, children with multiple previous surgeries or children with neurodisabilities - parents and carers may spot early changes long before they show up in obs or bloods. 

Embedded in Daily Practice 

So what does this mean for resident doctors in Paediatric Surgery? It doesn鈥檛 just mean always remembering to ask about I.C.E (remember that?). It means building these insights into our regular, day-to-day activities. From ward rounds to emergency reviews, it鈥檚 about asking: What does the parent think? Is this how the child usually looks after surgery? Is this crying pattern normal? 

As surgical trainees, we learn to act fast, prioritise by acuity, and respond to objective findings. But our prioritisation process must also include 鈥渟oft鈥� data 鈥� the experienced nurse who flags a subtle behavioural change, or the parent who says 鈥渢his just isn鈥檛 like them.鈥� With all the data we now have at our fingertips 鈥� imaging, bloods, e-obs, in-put/out-put charts 鈥� it鈥檚 easy to prioritise the measurable. But the people at the bedside are often our earliest warning system. The art of surgery includes not only technical skill but also diagnostic judgement 鈥� and that judgement is enhanced by listening to those who know our patients best. 

Consider a scenario: a 5-day post-pull-through Hirschsprung鈥檚 patient with a distended abdomen. Observations are stable, feeds are tolerated, and the abdomen is soft 鈥� but mum says it looks 鈥渂igger than usual.鈥� Do we ignore it? Or listen and reassess? Or take the example of a teenager with cerebral palsy, day 2 post-fundoplication. A subtle change in dystonia might be the only indicator of poorly controlled post-operative pain. Carers often know what is normal for that child better than any chart can tell us. 

Even out-with critical moments, parent and staff input can impact our decision-making 鈥� from whether to start or hold feeds, to timing of discharge, or recognising the early signs of wound problems and other post-operative complications. While Martha鈥檚 Rule offers a safety net, our goal should be to ensure families don鈥檛 need to escalate. We should be listening long before that point. 

Final Thoughts 

In paediatric surgery, a gut feeling from a parent is not just background noise. It鈥檚 an early alert, a pointer, sometimes even a lifeline. As paediatric surgeons we must recognise parent and carer insight as essential information 鈥� particularly in our most complex and vulnerable patients. So, next time you start a ward round or de-scrub to continue your on-call, remember to listen to the parents, grandparents, nursing staff, play specialists... their input might be the most helpful data you receive.鈥�� 

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