About: East Surrey Hospital / Trauma and orthopaedics

(as a parent/guardian),

My son is profoundly autistic and non verbal. We arrived at A&E with a suspected head and neck injury. I explained to the triage nurse that his autism meant he would find waiting in a hospital environment very difficult and she responded that they were used to dealing with autism and not to worry. It is my firm belief that she did not act on the information I had given her about his autism. After almost two hours of waiting, which for a child with a head injury and who is non verbal with autism is far too long to wait, staff tried to move him to an examination room. The 2 hour anxiety build up then resulted in a major meltdown for my son who was overcome with anxiety and fear and was then trying to escape the Emergency Department. The 2 hour wait caused the meltdown and as I had explained to the nurse, when the anxiety kicks in the opportunity to examine him is then lost. I heard the same nurse say that his behaviour was 'destructive' and she had failed to realise that 2 hours of waiting in a hospital for a non verbal autistic child in pain, was what had caused the meltdown. My son has severe and complex needs and has learning difficulties. None of this was taken adequately in to consideration when assessing him on arrival at A&E. In order to relax him in case a scan was needed he then had to be restrained for diamorphine to be sprayed up his nose. I agreed to this because it was the only option to try and relax him BUT had he not been kept in a state of anxiety waiting for 2 hours he would not have needed to be medicated to relax him. If he had been properly assessed and seen immediately he would not have had to be restrained for diamorphone. This was a direct result of the 2 hour wait.

It breaks my heart to think of what my non verbal son feels about being restrained by 3 adults to have drugs sprayed up his nose. Frightened, confused, powerless and massive anxiety. All of which is detrimental to future hospital visits for him. A terrible experience for him and not a place he will want to re-visit. We where then left for another hour for him to calm down and relax and then were told they would need to observe him for another 4 hours before deciding whether he would need to do under anaesthetic for examination or a scan.

The paediatrician explained there was concern he may have fractured a bone in his neck. He had a large bump on his head also. Another 4 hours of observation on top of all the hours he had already been waiting was simply not an option for him. It was unfair to me to keep him in a place that was causing him such anxiety. His pain levels seemed lower, possibly because of the diamorphine, so I took the decision to observe him at home. Not an easy decision to make as we were sent away with information on head injuries and a suspected fracture to the neck. On leaving the department one of the nurses told my son

The nurse tokd my son-to be kind to your mummy in future, because she had seen him kick out at me when he was having the anxiety meltdown. I was astounded that she thought he had been 'unkind to me' and that the triage nurse had described him as 'destructive'. The very same nurse that on arrival had told me ' we deal with children with autism all the time'. As a parent of two children with autism I was shocked and horrified at how little autism awareness there was amongst the staff of a children's department at our local hospital.

I am on the committee for a local charity that supports children with autism and their families, interAKtive. We have around 200 members across Surrey and amongst other things we actively help to raise awareness in the community about autism. I feel duty bound to bring the problems we faced late on in  December to your attention in an attempt to try and improve autism awareness amongst the hospital staff, or at least the Children's A&E Department. I would hate to think of any of other families and children with autism facing such difficulties as we did that day. Every child with autism is different and if mum says he finds waiting difficult then it needs to be taken very seriously in order for these children to be examined effectively. interAKtive is able to offer information about autism and we would be very happy to work with you to try and turn this negative into a positive. Our Chair, delivers informative talks about autism from a parent's perspective to help raise awareness and understanding in the community. She would be very willing to come and speak with staff as it is at the very heart of what we do. Many of these children, my two sons included, are non verbal and so do not have a voice so the parents are their voices. My son had a terrible experience at A&E so I need to be his voice but I also need to try and change that for next time and for all those that could be effected in the meantime .... www. interaktive. org. uk

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Response from Surrey and Sussex Healthcare NHS Trust

Dear interAKtive

I am sorry you had such a traumatic experience with your son in our paediatric emergency department. This clearly identifies an area where some further education is needed and I will discuss how we can facilitate this with the Matrons for ED.

I would be interested to discuss any further suggestions you may have, so please contact me on: Nicola.shopland@sash.nhs.uk

With best wishes,

Nicola Shopland

Divisional Chief Nurse, Medicine

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