Tackling tears and the burden on the NHS: Lightyear Foundation launches Human Body sensory workshops to familiarise disabled children with medical environments  

The Lightyear Foundation – a charity which aims to ensure that all children can have access to a good quality science education – has announced the second in its series of Sensory Science workshops with the specific aim of demystifying the medical process for disabled children and reducing the number of ‘failed’ NHS appointments.

The workshops use sensory equipment and drama techniques to help disabled children develop mechanisms to cope with the number and nature of the medical procedures they must attend. This in turn will reduce the cost to the NHS when appointments are not able to go ahead due to the distress caused to the child and their parents/carers.

The cost of repeated appointments: personal and public

There are currently around 770,000 disabled children under the age of 16 in the UK – around one child in 20. The conditions these children may have are varied – cerebral palsy, autism and Down’s syndrome, visual or hearing impairments amongst them – but they all have one thing in common. They are likely to need to see medical professionals significantly more often than their non-disabled peers.

Understandably, this is by no means always pleasant. Research undertaken by Lightyear Foundation earlier this year showed that 68% of disabled children find medical appointments difficult[1] and 55% found medical procedures challenging.

Perhaps most crucially of all, this is having an impact on outcomes. The medical professionals surveyed estimated that 34% of medical procedures for disabled children had to be repeated because the first or previous attempts were not successful (for example because of anxiety or sensory issues). This doesn’t just make medical procedures much more difficult for children and their parents, it also puts significant pressure on the already over-burdened NHS.

Pressure on parents

Medical appointments are not only a flashpoint for stress for children, they’re also a great source of stress for parents and carers. As part of the research, Lightyear Foundation also interviewed 50 parents and carers of disabled children aged under 16 and asked them to rate how they found taking their child to medical appointments.  With a score of 0-10 (with 10 being extremely challenging), the average score was 8.5. Many of the parents/carers referenced lack of understanding from medical professionals – unsurprising given that GPs have received no training to help them treat people with a learning disability[2].

In addition to the personal stress caused to disabled children and their parents, repeating appointments can also put already stretched parents under financial pressure. With 40% of disabled children in the UK living in poverty[3] and parents/carers finding it increasingly difficult to hold down jobs whilst caring for their child, taking unpaid leave and factoring in working days around medical appointments can put families under great financial strain.

Key pressure points

In order to achieve the best results, Lightyear Foundation’s research included identifying the most common stress points for disabled children and their parents in medical appointments. These were: (1) Waiting, (2) Noisy or crowded areas, (3) Unfamiliar people, (4) Staying still, (5) Not understanding what’s happening.

Children and parents identified the most challenging procedures as:  (1) Blood tests , (2) Cannula insertion, (3) Electroencephalogram (EEG), (4) MRI scans and (5) General Anaesthesia.

In order to familiarise children with these procedures, the workshops use a variety of techniques. The myriad wires of an EEG machine are re-purposed into an EEG maypole. Children can create art with (safe!) syringes or have fun mixing  plasma, red blood cells, white blood cells, and platelets to create a healthy blood potion. Child-friendly human body kits give children an insight into which of their organs are being checked, and why.

It’s not just about giving children the  tools they need to deal with the challenges they face, it’s also about getting disabled children interested in science too. By reinforcing the learning in the National Curriculum and raising aspirations for future STEM careers, it is hoped that the workshops could help inspire the nation’s disabled scientists of the future, following in the footsteps of Alan Turing (Asperger’s Syndrome), Thomas Edison (deaf), Isaac Newton (autism), Ralph Braun (muscular dystrophy) and  Geerat Vermeij (blind).

Discussing the initiative, Katherine Sparkes, CEO of Lightyear Foundation who’s also mum to Poppy, aged 10 with Cerebral Palsy said: “Regular medical appointments and intrusive procedures are a significant challenge for disabled children and their parents. Hospitals, tests and consultations can be stressful for all of us, so imagine how frightening it can be for a disabled child, who may not understand what is happening or why.  In such circumstances, it is no wonder that so many medical procedures have to be abandoned because the child has become too anxious. It’s bad for the child, bad for the parents and undoubtedly bad for the already burdened NHS.

“But our workshops aim to tackle this.  They offer a general introduction to medical environments and the human body, helping to familiarise disabled children with medical environments to help take the fear factor out of appointments. We also provide take home materials for parents and carers covering tips and techniques to help prepare and alleviate anxiety at appointments.”

Emma Stockton, Consultant Anaesthetist, Great Ormond Street NHS Foundation Trust added: “Children with learning disabilities in particular find medical procedures and environments challenging and exhibit anxieties over and above non-disabled children.

“Often in a hospital environment sensory issues can be magnified with lights, new sounds, people and smells, it can be overwhelming for them.  Therefore, I very much welcome this project and whilst every child is individual, familiarizing children in this way whilst at the same time introducing them to human biology and reinforcing the National Curriculum is so valuable.  Not only could it help relieve some anxiety for the children, but it’ll help support parents/carers whilst making it easier for us medical professionals to administer treatment, potentially even reducing the likelihood of medical procedures having to be repeated.”

For more information about the foundation please visit www.lightyearfoundation.org