Last night J was unwell again. It seemed to start with lots and lots of diarrhoea and a bit of a rash on his bottom, which we thought was related. It quickly progressed to be a big angry blister-like rash all over his body and onto his neck and face.
As it spread so quickly I decided to take him to A&E, as our doctors was already closed for the evening and my experiences of calling NHS Direct always result in long waits for midnight appointments with a doctor who has limited experience of working with children. Usually I would head to our local a&e department but our last few visits there with J have seen long waits to be seen by people who are dismissive and again lack experience of examining young children. Sometimes even suggesting we take him somewhere else. They either don’t know about or take no consideration of J’s autism and the fact that he can’t deal with sitting in a busy, hot waiting room for hours on end before having to sit in a small, hot cubicle or room for a while afterwards too. On one previous visit a doctor even asked ‘is he always this much of a handful?’after we had been sitting in the waiting area for over 3 hours.
This time I decided to take him to an a&e a bit further away (30 mins further away) where they have a children’s ward within the hospital and are better equipped to deal with children in the a&e department. We still had to wait a good while in the waiting area but once we were taken through the surroundings were much better and the people a lot nicer.
After we arrived we sat in what looked like a children’s waiting area though it had no toys, just some floor cushions. This was good as J wanted to lie down. The downside was having to listen to the idiot nearby who, despite being an ‘adult’ wanted to argue with the people he was with at the top of his voice, whilst swearing and saying he wasn’t going to hang around to be treated like that by them. Great I thought, don’t. Apparently he had nearly died that day, though to look at and listen to him I would say he was doing pretty well for someone so near death’s door. Why can’t they have two separate waiting areas in a hospital? One for calm, normal people who would just like to see a doctor and another for idiots who want to be the centre of attention and can’t behave like grown-ups! Maybe I should write to them and suggest this.
While we waited J’s rash got much worse, he was driven mad and scratching it constantly, we had to change him 3 times and he became very sleepy. After a while I went back to the desk to tell them about his worsening condition and was told he was second in line now, after another young child. Again we waited another while and then he was sick all over the place. This turned out to be good though because the nursing assistant who came to clean it up saw his condition and went through to get him a bed. We were taken through to a small room with a bed, TV and walls which were nicely painted for children. J got to lie down and we could take his clothes off to let his rash cool down a bit. We didn’t get to see a doctor any quicker but he was so much calmer and he got to lie down. The nursing assistant took his temperature and put on a Thomas DVD for him to watch. He was given some Piriton to try to calm the rash and left to rest for a while. The difference was amazing. The wee soul was so much calmer and more at ease. He could close his eyes and just lie down. Thank God for him being sick and for the lovely nursing assistant, who popped back in through the night to see how he was doing. She was very kind and it made all the difference. Why can’t they all just be kind?
We thought the rash might be an allergic reaction to something because it came on and spread so quickly. The doctor thought it could be a virus, though wasn’t able to be specific about which one. After several hours in the room and a couple of doses of Piriton, he seemed to settle a little and some of the rash began to ease. The doctor was happy for us to leave, so we headed home with a bottle of Piriton just in case we needed it.
On reflection today I thought about the care J has received overall when he’s needed to visit the hospital. We have encountered many doctors, some were nice enough and others were really not. Some were downright rude and many just didn’t understand. Each time we visit we have to explain that J has autism, he’s non-verbal and has limited understanding of things. Most of the time we have to explain this to each person he sees during the one visit. To me this simply isn’t good enough. In this day and age of computers and online files no one should have to keep explaining the same information over and over again, particularly on the same occasion. What would happen if something happened to J at school and we weren’t with him on arrival at the hospital? Or, heaven forbid we were incapacitated in some way and he was being treated when we weren’t able to speak on his behalf?
I think there should be a flag on records of patients with autism, or indeed any special needs, especially if they are non-verbal. It should be the first thing a receptionist, nurse or doctor sees when they look at the information. It should help in the treatment they receive. For example, J being able to wait in the room where he could lie down was so much better than the wrestling match in the waiting room. Facilities like that should be available for vulnerable people who need them. Hospital visits are scary and stressful enough and our hospitals should be providing support to make these visits as easy as possible. Things like disabled changing facilities for bigger children or adults who require continence equipment should be a standard thing in hospitals. It shouldn’t be necessary to wrestle a 5 year old onto a baby changing unit in a toilet.
I also think it’s necessary for doctors, nurses, and indeed all staff who work in a hospital or care setting, to be trained in dealing with people with autism. It’s simply not good enough that, in a time of heightened awareness of needs, the very people who are looking after our vulnerable children and adults are intolerant or ignorant of their needs.
My petition. Please sign and share:
My change.org petition on A&E care
I realise that these things are all separate issues and I set about finding out if anyone else has had similar experiences and if anyone has sought to do anything to change it.
Going Into Hospital with a Learning Disability – NHS Choices
This site has lots of useful information and links for preparing for a stay in hospital. Some of it could be relevant in an emergency situation if you have it prepared in advance and carry it with you, such as the hospital passport.
Another mum’s experience of a&e care
This mum had a similar waiting experience to us and the same lack of understanding we have encountered during many visits. This has got to change.
Guidance for Health Professionals – NAS
Information for doctors, nurses, etc. dealing with patients with autism. Also contains link to hospital passport template thing could be useful. My only issue is that this relies on people finding and reading it. Actual training is necessary.
Training Plan for ASD – NHS Scotland
A comprehensive document about current training needs and how to meet them, as well as why training is needed. Concentrates more on other aspects of care and includes ASD specific services. Clearly this hasn’t yet filtered down through all aspects of NHS care and there is certainly a need for it to, particularly in emergency care.
I looked to see if anyone has tried to change things. I found lots of petitions relating to inpatient care, some high profile mentioned on Tv. These are mainly about appropriate care closer to home. I searched and searched but found few about improving emergency/a&e care. What I found is here:
Change.org – petition for better care of autistic children
This one linked to disabled changing facilities is also worthwhile, I signed it a while ago but it could do with more support:
Disabled Changing Facilities Petition – Change.org
I plan to write to my MP/MSP about the specific hospitals I have visited and asking for changes to training/care.