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Stopping sensory overload in emergency departments for people on the autism spectrum

A deputy sister in Northern Ireland has set up a hospital quiet room to help patients cope

A deputy sister in Northern Ireland has set up a hospital quiet room to help patients cope


Ulster Hospital emergency department deputy sister Jo McConnell

Emergency departments (ED) are busy, hectic and noisy places, particularly at peak times.

Waiting rooms are generally crowded with people waiting to be seen, which can be especially distressing and unsettling for people with autism.

A large ED in Northern Ireland has responded to the difficulties this can cause by creating a calm space designed for people on the autism spectrum.

700,000

The estimated number of people with autism in the UK

Jo McConnell, deputy sister at the Ulster Hospital ED, in Dondonald, Belfast, came up with the idea of the quiet room after treating a 16-year-old boy with autism.

‘It was a busy winter shift and there were more than 100 people in the department,’ she says.

‘One boy was noticeably distressed, he wasn’t coping with how busy it was, and his mother was also distressed. Because he was having sensory overload he didn’t want to stay and we didn’t have anywhere quiet to put him.

‘I felt strongly over the next few weeks that, with the amount of patients being diagnosed with autism and coming to our department, we had nowhere to facilitate their needs, which is often just the provision of a quiet place.’

This encounter prompted Ms McConnell, who has two sons with autism, to think about how the ED experience could be improved for people with the lifelong developmental disability.

Barriers

Autism, which affects around one in 100 people in the UK, can lead to people being overwhelmed by their environment and becoming anxious, according to the National Autistic Society. When they visit healthcare settings, they can experience sensory overload and challenging behaviour, the society says.

Research has suggested that people with autism face barriers to accessing health care. A study of 20 children with autism in Canada, published in Autism journal in 2014, found that communication and sensory challenges and the degree of flexibility of healthcare providers and the hospital organisation could all cause problems (Muskat et al 2014).

A study of more than 400 people in the US, comparing those with and without the condition, found that those with autism had higher rates of unmet needs in physical and mental health, were less happy with communication with healthcare providers and had higher rates of using emergency care (Nicolaidis et al 2012).

50%

Of children with autism also have a learning disability

Source: NICE

The Ulster Hospital ED sees around 100,000 patients a year, 20% of which are children. Ms McConnell decided that a quiet, calm and private space away from the hectic setting of the waiting room would provide a better experience for patients with autism who wished to use it, or whose families felt it would benefit them.

Ms McConnell, who won the Learning Disability Award at the RCN Northern Ireland Nurse of the Year awards 2018 for the initiative, identified a small room in the department that was being used to store equipment, and placed away from the bustle of the waiting room.

While she developed ideas for the quiet room, she discussed her plans with local autism support groups and also distributed 100 questionnaires to staff to assess whether the room was wanted, their knowledge of autism and any potential need for training. She received responses from 70 staff members, including 45 from nurses.

A multidisciplinary team of staff with an interest in autism were brought together to think about what was needed in the ED to improve care.

Passport

Autism was the subject of a two-week awareness push, with posters displaying information on what the condition is and how staff can use simple calming sensory approaches. Ms McConnell also led education sessions to boost knowledge among staff.

With no extra funding available, Ms McConnell had to implement her plans at little or no cost.

The hospital electricians made necessary safety changes, such as moving the plug points, she got a new softer red floor covering and decorated the walls with cartoon characters to make the room appear less clinical.

Play_room
The hospital quiet room set up by Jo McConnell

Sensory toys, magazines and ear defenders were also added, along with an iPad from elsewhere in the department.

The department also implemented a patient passport for those with autism, where patients or family members could briefly record information such as how the patient communicates, what helps them feel relaxed, what makes them feel unhappy, stressed and frustrated, and how they demonstrate they are in pain.

A blue jigsaw sticker was implemented for paperwork for patients who disclose that they have the condition. This meant staff were more aware of any particular needs or preferences that patients may have, and could also help them be seen more promptly when possible.

‘Parents weren’t trying to be seen any faster, they were happy to wait a bit, but wanted to wait in an environment that wouldn’t distress their relative anymore,’ says ED lead nurse Roisin Devlin. ‘We have also created a patient journey map so that if a patient coming in needs to know everything that is going to happen, this diagram would do that.’

Feedback

The room opened six months ago and is used on average by about five or six patients a week. While it was intended primarily as a calm waiting space, doctors have also seen and assessed patients there.

It has been used by families with children with autism, and by adults with the condition.

‘When children go into the room, they and the parents aren’t as distressed, and if the children need to come back in the future, it doesn’t have to be a big ordeal,’ Ms McConnell says.

It has been a hit with families and people with autism for taking away some of the stress of a hospital visit.  For healthcare staff, it can be more straightforward to make a thorough assessment and provide care as patients are less likely to be distressed by sensory overload.

70%

Of people with autism also have a psychiatric disorder

Source: NICE

‘If we can get patients and parents through and they are happy, it makes a much better environment for staff who are managing such a high volume of patients,’ Ms McConnell says.

‘We have had lots of compliments on the trust Facebook page, and people have emailed in about the room, Jo, and her education, to say that they can see a significant difference,’ Ms Devlin says. ‘If we can keep patients with autism in an environment that is calm, their journey is so much more positive.

There are plans to roll out the room to the other two EDs in the trust, and another trust has also made enquiries about implementing their own quiet space.

Both Ms Devlin and Ms McConnell would encourage other hospitals to consider making such changes, which have not called on the trust’s funds.

‘It is so simple,’ Ms Devlin says. ‘It is driven by Jo’s knowledge and passion and has given patients on the spectrum a better patient experience. The quiet room is a small area, but just somewhere that is away from the hustle and bustle of the department, and can help with a patient’s anxiety levels.’

Box 1: Autism and emergency care

Emergency departments can be a stressful experience for anybody, but for a patient with autism it can be totally overwhelming, according to the National Autistic Society (NAS).

Not only is it a strange place but the sensory experience of bright lights, bleeping monitors and other equipment can completely overload their system causing a 'meltdown', withdrawal, or challenging behaviour.

The NAS recommends healthcare staff:

  • Allow the parent or carer to take control, as they will know the best way to support the patient. Allow parents and relatives to stay while giving treatment.
  • Families should inform the triage nurse that the patient is on the autism spectrum so that they can be given a higher priority than would be normal. This is to minimise the time the patient has to wait.
  • Allow the patient and carers to use the relatives’ room if it is free.
  • Try to limit the number of staff caring for the patient. Predictability will help them understand what is happening. Allocate a key person to the patient if possible.
  • People with autism can have a very high pain threshold. Even if the person does not appear to be in pain, they may, for example, have broken a bone. They may show an unusual response to pain that could include laughter, humming, singing and removal of clothing. Agitation and behaviour may be the only clues that the child or adult is in pain.
  • Always explain what you are going to do before starting any procedure or examination, using short sentences and clear language.
  • If possible, show a picture of what is going to happen or use a doll (if appropriate) to explain what you are going to do.
  • Give direct requests, for example, say ‘please stand up’. If you say, ‘can you stand up?’ this may result in the person staying seated or the answer ‘yes’, as they may not understand you are asking them to do something.

Source: National Autistic Society.  

Box 2: what is autism?

Autism is a lifelong, developmental disability that affects how people perceive the world and interact with others (National Autistic Society 2016). 

It is a spectrum condition, meaning people are affected in different ways.

There are around 700,000 people with autism in the UK. It appears to affect more men than women, although the National Institute for Health and Care Excellence (NICE) has warned girls and women may be under diagnosed.

The exact cause is unknown, but is thought to be due to a combination of genetic and environmental factors. 

In order for a diagnosis to be made, a person will usually be assessed as having persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests (National Autistic Society 2016) since early childhood, to the extent that these ‘limit and impair everyday functioning’ (Research Autism 2017).

About 50% of children with autism also have a learning disability and about 70% of people with autism also have a psychiatric disorder (NICE.

 

References

  • Muskat B, Riosa P, Nicholas D et a l (2014) Autism comes to the hospital: the experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals. SAGE Journals. 19, 4, 482-490.
  • National Autistic Society (2016) Autism guidance for health professionals. NAS, London.
  • National Institute for Health and Care Excellence (2014) Autism Quality Standard QS51. NICE, London.
  • Nicolaidis C, Raymaker D, McDonald K et al (2012) Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership. Journal of General Internal Medicine. 28, 6, 761-769.
  • Research Autism (2017) Autism (Autism Spectrum Disorder).

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