In April 2023 the North East Autism Society presented  a Gold Autism Acceptance Award to James Cook hospital’s children and young people’s perioperative, anaesthetic and surgical services.

The award is in recognition of a radical programme of initiatives designed to ease the anxieties of autistic and neurodivergent youngsters who need surgery.

The hospital is the first healthcare setting to receive the honour after NHS staff across a range of disciplines worked together to increase understanding of autism and implement improvements.

Reaching the gold standard has been a team effort – encompassing porters, nurses, doctors, and consultants – but Dr 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.

Making a difference

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 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.

Autism passport

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.

Young people’s voice

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.

Interactive floor and sensory room

An entertaining interactive floor, with hundreds of features, has been added in the middle, installed between the busy and quiet areas, and there is now a sensory room for children who need it. It comes complete with adaptable lights, padded floor, and bean-bags instead of chairs.

National app

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.

Find out more about children and young people’s unit at James Cook hospital.