‘A Fence or an Ambulance’ for disabled children

Abstract

In 1895, the English author Joseph Malins wrote the poem ‘A Fence or an Ambulance’ (https://allpoetry.com/poem/13223676-A-Fence-or-an-Ambulance-by-Joseph-Malins). The poem describes the idea that people find it more attractive to pay for the cure than the prevention – the ambulance at the bottom of the cliff rather than the fence stopping people falling off the top.

130 years on, we have yet to move to the more rational position in many of our health services. Evidence for the efficacy of early therapy intervention for children with conditions such as cerebral palsy (CP) is now accepted. But what about other aspects of preventative input? How are we doing and how best can we support families and communities to improve the health of disabled children? How can we better address the additional socioeconomic challenges to health that many of these families face including poor quality damp housing, noise and air pollution, fuel poverty, and so on?

We know that disabled children often have challenges in eating and sleeping, as well as physical activity. These are the cornerstones of a healthy life and yet, are we doing enough to teach and enable parents to understand and promote healthy behaviours from the beginning? How many children are diagnosed with attention-deficit/hyperactivity disorder, where good sleep hygiene and a healthy diet would reduce impairment? Adults with CP have higher rates of cardiovascular disease, but how often are we making sure that as children, they are accessing enough physical exercise and healthy food to mitigate this risk? Many neuro-disabling conditions affect sleep, and rigorous attention to sleep hygiene early on can avoid the behavioural elements that we so commonly see, but instead vainly attempt to treat later with medications, when behaviours are entrenched.

How can we promote healthy weight when we are not even able to accurately measure disabled children? The British Academy of Child Health ‘weight and height To Go’ project stemmed from this finding of the 2018 NCEPOD inquiry ‘Each and Every Need’ (https://www.ncepod.org.uk/2018cn.html). Subsequent audits show that UK health services are still struggling to achieve the basics in this area (https://www.bacdis.org.uk/pages/weigh_to_go). How can we improve this?

Nearly 25 years ago, we showed that immunization rates of children in UK special schools were lower than in mainstream controls.¹ Studies continue to show lower vaccination rates for vaccinations such as human papillomavirus (HPV) in neuro-disabled children.² Many of my patients were invited to book COVID vaccination in 2024 but venues were often miles away, making access difficult or impossible. We need to do better.

Disabled adults face further disadvantage in accessing preventative healthcare. The UK primary care annual Adult Health Checks for those with learning disability are still not universally offered.³ Primary care facilities may not provide a hoist so that a woman can have a cervical smear (and may not have received HPV vaccination).

We cannot yet cure the CP, the autism, the muscular dystrophy, but how can we best teach parents from early on how to facilitate their children having a healthy diet and weight, good sleep routines, and physical activity? Can we help families and professionals predict the challenges to come and take action early to reduce additional illness and impairment? It is important that trusted specialists who understand the complexity these children face provide tailored advice for parents; but do standard health promotion techniques work for these families who are under additional strain and disadvantage? And how can we ensure that universal services are accessible to those with disabilities?

So, I urge us to build into our clinical conversations and research questions the provision of more fences, reducing the need for ambulances.