Sensory overload – making the NHS more accessible for autistic patients

Universal access to healthcare is one of the cornerstones of the NHS, with this founding principle having continued to shape the development of the health service throughout its history.

Despite this, many patients still struggle to access the care they need, with autistic and neurodivergent people among those most likely to experience obstacles to receiving appropriate health services.

These challenges can include difficulties in communicating with healthcare staff and fear of being stigmatised, to the overwhelming sensory effect of having to spend hours in a busy hospital waiting room to receive treatment.

It was addressing and overcoming barriers such as these that led paediatric emergency medicine consultant Giles Armstrong (pictured above) to look at what changes could make his own workplace, the Royal London Hospital in Whitechapel, more inclusive.

As part of this ambition, Dr Armstrong and his senior paediatric nurse colleague Sarah Gamester, enrolled their trust Barts Health for the NAS (National Autistic Society) autism accreditation programme.

The programme, which now consists of three separate awards, is the only one of its kind in the UK with accreditation only granted to organisations that successfully demonstrate an understanding of and commitment to supporting the needs of autistic people.

‘I really had some anxieties about this being the right place to be starting within healthcare to be trying to gain an inclusion award,’ says Dr Armstong.

‘Emergency departments have a lot of moving parts. There’s a constantly changing pattern of staff on different shifts and lots of loud noises and bright lighting.

‘Then there was this realisation that everything I was worried about was in airports as well, and I read that Manchester airport had become accredited if an airport can get an inclusion award, then I thought it wasn’t unreasonable that an emergency department could get one too.’

A study from 2022 examining barriers to healthcare and adverse outcomes for autistic adults found that 34 per cent of autistic people participants to the study stated that they had no medical help even when experiencing ‘potentially serious or life-threatening’ conditions.

The same study revealed that 51 per cent of autistic respondents found the waiting rooms of healthcare settings to be a barrier to their accessing of care, with just 3 per cent reporting they did not feel anxious about a visit to the doctor, compared with 33 per cent of non-autistic respondents.

‘If you needed to assess an autistic person, who has had to wait in the waiting room for three hours, by the end of those three hours that person would likely be so over simulated it would probably have counted as some form of torture,’ explains Dr Armstrong.

‘Medical assessment under these circumstances is difficult if not impossible, and you would often end up doing things like having to hold people down just to feel an abdomen, or something which was unpleasant for the patient, unpleasant for the staff and didn’t really give you as good a quality of an assessment.’

Despite being far less imposing in terms of size and patient numbers, primary care settings can pose many of the same accessibility challenges to autistic people as hospitals.

Sarah Davis is a GP partner at Sedlescombe & Westfield Surgeries in East Sussex. It was while serving as part of her primary care network’s quality improvement group two years ago that she decided to enrol her practice on the NAS accreditation scheme.

While not yet fully accredited, Dr Davis’s surgery has made a raft of changes to its working practices all of which are designed to improve accessibility for neurodivergent patients.

These range from making information on the surgery website more accessible to directly contacting patients to record information regarding what reasonable adjustments they might require when accessing care.

While describing the changes as ‘still very much a work in progress’, Dr Davis says she felt the measures taken had already made a positive difference to a patient population with a 2.2 per cent rate of autism – double the national average.

‘We initially started this work because many staff members have a lived experience with autistic relatives and children and we recognised the struggles they face,’ says Dr Davis.

‘About two years ago [we] became aware of just the scale of the amount of people that are affected by autism. Signing up to the accreditation the NAS offer has helped focus our minds and understand what best practice should look like.’ 

While Dr Davis and her practice colleagues have encountered challenges around engagement when gathering patient preferences for reasonable adjustments, where these have been implemented the improvements have been notable.

One example is that of an 11-year-old autistic patient who previously would become very agitated when attending the practice, in large part because of the waiting room environment and uncertainty with which staff would be treating him.

Dr Davis said that allowing access to a separate waiting area and a preferred clinician had had a transformative effect.

Another patient, a man in his 20s who had previously strongly resisted engaging with medical services, was able to select a preferred clinician after attending the surgery to have an injury treated.

‘Now that he’s got his preferred clinician he has attended for two learning disability health checks. Whether that means he is living a healthier life he at least knows where to come now and has demonstrated that he’s much happier about coming to us than he ever was before.’

Dr Armstrong initially signed his trust up to the accreditation programme in 2019, and although progress was waylaid by the arrival of the pandemic, he and his colleagues were successful in attaining accreditation in 2023.

Despite the length of the process, Dr Armstrong says that, in his experience, creating an inclusive environment for autistic and neurodivergent patients is less about introducing large-scale or expensive change, but rather listening to patients’ needs and embracing a culture of openness.

‘The things that had the biggest impact mostly did not actually require much effort and while they required a little bit of thought and care and attention, they didn’t require a huge investment,’ explains Dr Armstrong.

‘Typically, when you arrive at a hospital you sit in the waiting room until you’re called. These areas are always brightly lit and often noisy. They’re overwhelming places even as a neurotypical adult, and we certainly have a number of autistic patients who really struggle with the sensory overload of the waiting rooms.

‘One of the simplest changes we made, which patient feedback has shown to have had a big impact, was that we changed our processes around signage to make it clear that we'll try and make reasonable accommodations if you or your relative is autistic and ask if it would be easier to wait to be seen elsewhere.’

He adds: ‘This could be the coffee shop or outside in the courtyard. Some people are very happy to stay, but we offer them the choice. For some families that’s really important.’

In addition to this new approach in staff working practices, further steps have been taken to improve inclusivity and the experience of neurodivergent patients including the creation of a sensory room in the hospital’s paediatric department.

The trust also appointed members of staff who volunteered to serve as ‘autistic champions’ to help deliver training to colleagues around their interactions with neurodivergent patients and understanding their needs, something that is a mandatory requirement under the Health and Care Act 2022.

A further change that contributed to his trust’s accreditation was the development of function on the hospital’s IT system allowing for healthcare passports to be more visible when accessing patient records.

Developed by the National Autistic Society, health passports aim to support autistic people in expressing their personal needs to healthcare staff such as preferences in communication, how they might express physical pain and what things that are likely to cause significant alarm or distress.

‘The single biggest challenge we faced was how to make healthcare passports more visible on our computer record system,’ says Dr Armstrong.

‘The IT department built us a filter so now, as long as you tag the healthcare passport when you're uploading it, and there’s a standard operating procedure for telling people how to upload healthcare passports, then actually you can filter, and you can just identify the healthcare passports.’

Almost two years on from his workplace’s award, Barts remains the only trust in London to have gained NAS accreditation. Dr Armstrong hopes that by highlighting his experience, greater numbers of hospitals and GP practices will embark on the process.

‘We’ve spent quite a lot of time promoting what we’ve done, both within Bart’s health and within London, and I’ve spoken to about three or four different venues about what we did,’ explains Dr Armstrong.

‘The NAS were very clear that the expectation around us being inclusive was not to provide 15 different types of distraction toys for children who were autistic. It’s about informing the public about what to expect, and therefore how to prepare.

‘I think people are sometimes a bit put off by the formal assessment process [but] there’s lots of things that can be done that are relatively small and simple.

‘I’ve always stressed that even if you don’t feel you can go whole hog towards NAS accreditation the first step is to look at some of the quick and easy wins.

‘Think about what your pathways [you have] for supporting people who can’t manage in your waiting room, and that will be a big help in itself.’

Find out more about the NAS accreditation award programme