"ED experience of a person with intellectual disability"

We recently took our adult son to the ED at Fiona Stanley Hospital. He had such severe abdominal pain he could barely walk and was crying out in pain. We called ahead and he was seen promptly and taken into the 'resus' area of ED where he was seen promptly by a doctor. Our son has an intellectual disability (ID) and doesn't use a lot of speech but in this state of pain he couldn't speak. The ED doctor was very nice and was gentle and spoke to him. Our son allowed this doctor to take blood for tests even though he was scared.

The doctor prescribed pain relief via suppository. It took a very long time to get the suppository - probably 45 mins at least because the medication had to be obtained from a ward; none in ED, which I found surprising. When it finally arrived, I was stunned when both the nurses who had been taking his case notes and observations separately suggested that I administer the suppository! Would they do this with any other adult male and his mother? I declined and said this is their role and that my role had been to explain what was happening and be there to comfort him. This expectation that I would do everything was, in my opinion, evident during the rest of his stay in ED and the short stay unit.

I had to assist him myself to get in and out of bed, and to try to get him transferred for a CT scan - I asked for help but the two staff didn't move to help me. The CT scan staff (on our second visit with some sedation) subsequently wrote case notes that he had been aggressive, which was untrue. He was terrified of the machine and struggled not to be moved into it. One of the night shift nurses suggested I could go home at about 3.30am to get some sleep and that they'll look after him, but I said I'd stay. The nurse's reaction - oh, you're so dedicated - left me almost speechless. Again, it is my belief that this would not be said to any other family member and shows how much attitudes need to change in the FSH nursing staff.

They brought me a chair/bed and I rested for a couple of hours. In the morning, he was sent for the wrong ultrasound and then had to go back for another. Thankfully, the sonographers were very nice and he wasn't scared. The consultant explained that they were trying to find the cause of the pain but may not be able to work it out. The consultant and a junior doctor suggested it could be constipation but I said it didn't look like it, from our experience with constipation, and the degree and type of pain. The junior doctor felt my son's abdomen but did it while he was sitting up, not lying back, and did not do any other of the things I'd have expected such as auscultation. I asked if they'd felt a mass and they were unsure and stated that there may have been something. Yet this doctor said it was 'probably constipation' and we could go home where I should give him Movicol. I said if there was any more pain such as this we'd be back with expectations of them doing more.

I understand the difficulty with diagnosis and discussed this with the consultant who explained things well, but I expect all efforts to be thorough. My son was much helped by the pain relief but was not altogether feeling okay. They decided he could stop fasting and the morning nurse brought his meal. This nurse, who came on at the beginning of the morning, barely spoke with my son, nor engaged with him the whole time they were his nurse. They spoke with me, even when they came on duty and told me their name. I introduced my son by name and myself but, in my opinion, this nurse was very uncomfortable. When told that they could bring a meal the nurse asked me - does he eat normal food? Really? Not only had this nurse and the other nurses spoken to me the whole time, in my son's presence, this particular nurse also did not use his name and asked this question in front of 'him'! I said yes, of course. The nurse brought a tray, placed it on the table and did not remove the container of urine that had been sitting there for many hours. I suggested it should be moved. It was as if they couldn't get out of the cubicle quick enough each time.

When the nurse returned for the tray and asked me - how did he go with the food? - I really struggled to contain my anger. Apart from not looking at the tray to see he had eaten much of it, again they never even looked at my son, nor used his name. I asked them why they didn't speak to their patient and they looked visibly shocked and didn't know what to say. They took the tray away and we didn't see that nurse until we were leaving the unit.

The junior doctor said we could go but couldn't have a discharge letter because, as they stated, the system is down. My son got dressed and as we were leaving we stopped at the nurses' station to tell them. They said we couldn't go until we had a discharge report! I said the doctor said we could go and we were going. They said they needed to take his line out. I said he hadn't had a line in... So, the experience was pretty awful for us both.

There are more details, and we intend to lodge a complaint with FSH. It was really disappointing because I had previously received excellent care myself in ED and expected a higher standard of care. Based on my experience, FSH staff - nurses especially it seems - urgently need some training in providing appropriate care to people with intellectual disability. Thinking over our experience, it is my belief that they need to treat people like everyone else, speak to them directly (even if they don't use speech) and to really listen to them and their family members. They need to stop assuming the family member will do the things that they as staff should do - this appears to me to be an assumption about 'carers' I think. They need to stop making assumptions and judgements - as well as the aggression comment in the case notes, there were other inaccuracies based on nurses' assumptions and beliefs. I did wonder later whether the aggression comment by CT staff caused the morning nurse to not engage with my son. I wish to speak with someone about this experience as soon as possible and will contact the hospital.