"Experience of supporting my son in A&E"

My son has a rare genetic disorder and epilepsy, he had a seizure and then a fall resulting in a collapse. My son has a severe learning disability, he also has a diagnosis of autism and gets very overwhelmed. He really struggled with healthcare settings to the extent that we try to avoid them if at all possible despite him having multiple health issues. We were at first in a very busy waiting area, he was getting stressed and anxious to the point I did not feel I was going to be able to manage him there, he was seen fairly quickly but after having a seizure he had to be moved around to main A&E, he was on a trolly for a period on an incredibly busy unit with rows of patients receiving corridor care, again he was stressed and panicking, after a while we were asked to wait on chairs in the middle of the busy unit, he was subjected to difficult patients and his behaviour escalated where he was crying and getting agitated due to the sensory overstimulation.

We were told he would have a CT scan, he was unable to tolerate the first scan as he was hysterical and frightened but the radiographer was supportive and provided individualised support. He was able to have the scan the second attempt. It was then found he’d had a bleed on his brain, I had to seek out the scan results as my son was stressed and getting anxious and it had been a long time. We were told he would need to remain in for observation overnight, at this and hearing he had a brain bleed he became hysterical, we were in the centre of the hugely busy unit on chairs, he was so distressed I felt he would escape (he does not have mental capacity). I had to beg the team for a side room which they did provide, we had a night stay and there was another difficult patient, we felt too scared to leave the side room to use the unit and because my son was scared and unwell he ended up soiling himself with urine.

My son was hysterical at times due to the overwhelming sensory burden and fear he felt at the noise and shouting/swearing. The learning disability are not commissioned over the weekend so I could not seek specialist advocacy from the team, it took everything in my powers to try to keep him calm and able to remain in hospital, constant reassurance, negotiation. The team were lovely but they also agreed it was a terrible environment for him to be being cared for in, there is no provision or consideration of those with severe learning disabilities and there needs from an environmental perspective; people like my son should not have to be coping with difficult patients when having to access services due to their already disadvantaged position in life; we need learning disability specialist provision at weekends, we need environments or even just an earmarked side room for those with severe learning disabilities or conditions like dementia. My son actively is dishonest about his health to the detriment of it because he has endured years of care in hospital environments that are not set up for him and his peers.

I feel upset and angry that there is so much talk of individualised care and inclusivity but feel our most vulnerable in society they are being failed by a one size fits all healthcare system. 

It was a truly horrific experience for myself and my son and has significantly traumatised us both.

Myself as his carer having to stay with him on a hard chair with no easy access to washing facilities/ a mirror and feeling trapped in the side room due to the aggressive patient struggled to retrieve one of my contact lenses whilst staying with him, I thought I had removed it but days later my eye became inflamed and I needed to attend the eye hospital A&E for review as the contact lenses had remained in my eye without my knowledge, I had corneal abrasions and required treatment. I feel this also highlights how the stress and improper environment for not only a disabled person in a hospital is impactful to not only their health but can have a knock on impact to their carers too, further adding pressure to hospital resources.

This happened at the Royal Sussex county hospital in Brighton.