In the middle of World Autism Acceptance Week, staff at The James Cook University hospital will today be presented with a special award for making life easier for autistic and neurodiverse children facing operations…
Despite being only six, little Isabella Wright has already faced frequent visits to hospital for surgery – and there’s more to come.
At just four days old, Isabella was diagnosed with bilateral hip dysplasia and, since then, she’s had six operations, each one lasting up to nine hours.
Her hospital visits were made more stressful by the fact that she is also autistic, with complex sensory issues adding to the natural anxiety everyone feels when facing surgery.
“I can’t praise the hospital enough for the improvements that have been made – it’s made it so much easier for Isabella and us as parents,” says her mum, Jacqui.
First healthcare setting in region to receive the award
Today (29 March 2023), representatives of the North East Autism Society (NEAS) will be at the hospital to present a ‘Gold Autism Acceptance Award’ to South Tees Hospitals NHS Foundation Trust’s children and young people’s perioperative, anaesthetic and surgical services.
The first healthcare setting in the North-East to receive the award, it is recognition of the commitment by staff to understand the needs of autistic children and make changes that can make all the difference to their time in hospital.
Isabella was diagnosed as autistic two years ago and, in her case, the extra care has included changing the taste of her premedication to an orange flavour to prevent it making her sick.
She was also put into a side ward to protect her from noise and lighting, and her parents were allowed quicker access into the recovery room because she suffers from separation anxiety.
In the x-ray department, she receives low-sensory x-rays, dimmer lights are used, the number of people in the room is minimised, and she’s able to play on her iPad while the x-rays are being taken.
“The consultants and anaesthetists are also brilliant,” adds Jacqui.
“They speak slower, use short sentences, and don’t overwhelm Isabella with information. The award is well deserved and I’m sure other hospitals could learn from them.”
Getting it right for patients
Reaching the gold standard has been a team effort – encompassing porters, nurses, doctors, and consultants – but Amy Norrington, consultant paediatric anaesthetist, has been central to the progress.
“Of course, it’s very nice to receive the award, but what’s far more important is working with NEAS to get it right for patients,” she says.
“We want the parents of autistic children to know that this is a place where people are doing their best to make the hospital journey easier. We don’t get it right every time – we’re not perfect – but the aim is to listen and keep on improving.”
The drive to improve care for autistic and neurodivergent children coming into the hospital coincided with Dr Norrington’s arrival nine years ago. She noticed that autistic children were especially anxious when arriving for operations and began to look at what changes could be made.
“Anxiety releases more adrenaline and stress hormones, so the patient needs more anaesthetic to go to sleep. That makes them more likely to be sick afterwards and feel more pain,” she explains.
“If children are pinned down, they develop a fear of hospitals that can last into adulthood, so we started to form plans for autistic children, developing better pathways and resources.”
To begin with, the work was ad-hoc, but it has accelerated since the trust formed a partnership with NEAS, using the charity’s extensive knowledge and experience to instigate change.
Autism acceptance embedded into training
Autism acceptance has been embedded into staff training at the trust’s two hospitals – James Cook and Friarage Hospital at Northallerton – leading to around 25 autism champions being identified across multiple disciplines.
Early identification is crucial to the programme, with surgeons alerting nurses in the pre-assessment clinic as soon as autistic children are listed for surgery. An ‘autism passport’ has been created, based on a questionnaire, and including key medical information, along with patients’ likes and dislikes.
“Some children might like bubble-wrap, others like particular colours – it’s all about what’s individual to each patient. Light, noise, smell, taste are all taken into consideration,” explains Dr Norrington.
“We discovered that a lot of children don’t like open-back gowns, so they can wear their own clothes whenever possible. Other children can’t bear cream on their hands, or have a fear of needles, so we’ve developed individual strategies for dealing with that.”
As well as the pre-assessment clinic, a separate consultant clinic has been introduced for children who are particularly anxious and need additional support. An entrance with a quiet route into the hospital has also been identified.
Autistic children have been given a voice in the process, being asked how the children and young people’s surgical day unit could be improved. Their feedback led to an architect redesigning the space to create a quiet area, while other changes have included red walls being painted in the calmer colours of pale blue and white, along with dimmable lighting.
A national app, called Little Journey, and designed by London anaesthetist, Dr Chris Evans, has also been customised for children coming into the hospital, and has proved particularly effective for autistic patients.
Making a difference
The gold award will be presented by Kerrie Highcock, family development manager for NEAS, who says: “Right from the start of our conversations, it was clear how passionate the team was about making a difference to autistic children and their families. It’s been a joy to work with them, and we look forward to the partnership developing.”
“I love my job and the opportunity it gives me to make it better for children coming into hospital,” says Dr Norrington.
“Every child deserves individual care that gives them the chance to have their operation without anxiety being a barrier. It’s like using lots of ingredients to make a recipe that each patient can tolerate.”
As for six-year-old Isabella, yet another operation is due soon – but her parents have the comfort of knowing that she’s in award-winning hands.
To find out more about the Autism Acceptance Award, please contact the North East Autism Society on 0191 410 9974 or go to: www.ne-as.org.ukautism-acceptance-award