"More awareness would be very helpful"

About: Accident & Emergency / Children's A&E

(as a parent/guardian),

This is not a complaint about the service but just some observations to draw attention to hidden disability. I attended University Crosshouse Emergency department on a Saturday night with my 14 year old autistic son. We were quickly triaged by a very nice and pleasant nurse but he kept directing questions to my son. Autism is a learning and communication condition so someone asking lots of question in rapid succession is confusing and can lead to distress and feelings of anxiety making the situation worse. Autistic people need time to process information which may mean giving at least 15 to 30 seconds after asking the question to process and then respond. Eventually my son asked me to speak for him although I did try and explain to the nurse it would be easier if I could help my son communicate as we had discussed his feelings and emotions on the journey.

We were then escorted through to the treatment area, unfortunately they had no available room so we had to sit in the corridor on wheelchairs for an hour. Now I am not saying we should have been given a room or taken priority over anyone else but the corridor was busy with lots of people and other stimuli, lights, sounds and smells. All triggers to overwhelm an autistic child.

After an hour we were shown to a waiting room, the problem the lights were overwhelming bright and there was no dimmer switch. This was a trigger for my son and he felt very uncomfortable for the next two hours we sat in this room. He did not want me to turn the light out as they would draw attention to him which he hates with a passion to be seen as different. He felt the more normal response was to wear his hoodie back to front with the hood over his face. Not ideal but it allowed him to remain calm until we were seen. He didn't notice the looks from staff, police and other patients that this act did make him different.

When we were seen by the doctor who again was lovely - same problem asking lots of questions directing everything at my son who by this time had been pleading to go home for the last hour and a half. Staff also need to be aware that autistic people take questions literally - so when the doctor kindly asking him 'How are you feeling now', he responded 'Tired' ( well it was nearly midnight by now).

The reason we were at the hospital was part of my son care/safety plan agreed with CAHMS and the Learning Disability Team is to attend the ED if he is feeling suicidal ideation/self harm to speak to the Psychiatric Liaison Team. It was only after waiting nearly four hours that the team were phoned and said they were happy to attend but would be another hour. At this point being at the ED was causing my son more anxiety and stress than making the decision to go home. The doctor was happy to discharge my son to my care.

All the staff were very nice and I couldn't complaint about their attitude. Waiting to see someone on a busy Saturday night is just one of those things. The ED was busy and the staff were doing a great job in very difficult circumstances so I am not complaining about having to wait.

I am only recommending that staff are perhaps given more awareness training around how light, sounds and smell affect people with autism. And couch their question so they are understand exactly what is being asked and giving the person processing time.

I know that training is given to staff to communicate directly with the patient and make them feel involved but staring directly at an autistic person can make them very uncomfortable and even alarmed. I consistently asked staff to direct questions to me and my son would pipe up if I had it wrong. Over the years as a family we have developed strategies to communicate and tease out the problem or thoughts or feelings and staff should take cognise of what the family member is telling them.

My son has a hidden disability which can be debilitating and more awareness would be very helpful when having to cope with what is already a very stressful situation for him.

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Responses

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

picture of Eunice Goodwin

Dear Worried mum Ayrshire,

Thank you so much for giving us such a frank insight into the experience of both you and your son. I think it is a great lesson for us to learn and to use in every walk of life, not just in the ED. It is often only once we have a first hand experience of lessons such as this, that we begin to consider different, more flexible approaches and we can reap the benefits to us all. I will pass this post to both our EDs in Ayrshire and Arran but also to a much wider audience for us all to benefit.

I hope your son is well now.

best wishes,

Eunice

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Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

picture of Eunice Goodwin

Dear Worried mum Ayrshire,

I was asked by one of the senior managers in out Emergency Department if you would be interested in contacting us so we can look in to this. It would be very helpful if you can find the time to call or email me. You can do so by calling 01563 826222 or by email on eunice.goodwin@aapct.scot.nhs.uk.

I look forward to speaking with you.

Best wishes,

Eunice

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