Author Topic: Should I complain about A&E? *Trig SH*  (Read 363 times)

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Offline Vermilion

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Should I complain about A&E? *Trig SH*
« on: August 25, 2019, 11:33:45 AM »
I'm pissed off with the local A&E after I waited 13 hours to see a doctor when I had sepsis from an infected b**n despite NHS direct saying that it was a medical emergency. I even asked the nurse if it would be much longer and she clearly lied, if she had just been honest with me I could have gone somewhere else which also have been much less stressful- it's not like A&E is a wonderful place for autistic people. I do feel that there are things that they could do to help people with autism, there was so much sensory overload for me I had a meltdown and it's not the first time it's happened at that hospital. While I will not go to that hospital again (unless I'm rushed in via ambulance and have no choice) I do feel like I should inform them of these things for the sake of others who have no option but to use that hospital. I understand that emergencies can happen but I was also an emergency because I could've died from sepsis.

Thing is that I'm so grateful for the NHS that I feel guilty about putting in a complaint. The b**n unit I was transferred to have been amazing as was the doctor I eventually saw at A&E but I do feel like I waited at too long for treatment and maybe that the duty of care wasn't met.

What do you think? Should I write to them or am I just being unreasonable?
RIP Clyde - November 25th 2018
RIP Bonnie - November 24th 2018
RIP Columbus - August 22nd 2018
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Offline Rob

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Re: Should I complain about A&E? *Trig SH*
« Reply #1 on: August 25, 2019, 01:28:31 PM »
NHS Direct are only giving an opinion based on what information they have, and it's not the same as a face to face diagnosis. Sepsis is not something that you can catch, it's an eventual reaction to an existing infection which will have started with your SH, and that's why it's not easy to diagnose early on - but it can then happen quickly. Whilst you're in the hospital, you are actually under observation and any deterioration would be noticed. Apparently there is some software currently trialling at some hospitals that flag up sepsis possibilities quicker, but that's not available everywhere yet. The bottom line is that it's not easy to spot early on as the symptoms are pretty much the same as what you might expect from a normal infection, and that you were far safer in the hospital environment than you would have been at home - in fact the outcome could have been very different had you not gone to hospital.

Hospitals are busy and staff overworked with patients waiting on trolleys. In an ideal world things would be different, but with finite funding it's a case of getting through as best possible.

Perhaps if you worded things more as an observation rather than a complaint, as an autistic patient that developed sepsis?
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Online Lorien

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Re: Should I complain about A&E? *Trig SH*
« Reply #2 on: August 25, 2019, 03:05:36 PM »
Sepsis is a huge deal in hospitals at the moment. They are more than over cautious as many people have died from undiagnosed sepsis. If there is even a slight chance 111 have to act as if there is sepsis. So it may be that they discussed it with you in these terms. I was injured at work last year and we called 111 for advice, they said because it was a head injury if a GP had not called in 2 hours they have to send an ambulance on lights and sirens. At 1hr 50mins we called them to say not to send one and we'd go by ourselves. They said we had to call 999 to cancel an ambulance.

From the perspective of someone who is both Autistic and works with young people who have non verbal autism and significant LD and challenging behaviour - there isn't much staff can do. They don't have access to quiet spaces nor the time and staff to create them. I have watched valiant efforts to strip out triage rooms to make them safe for young people because there is a risk to the young person, staff and other patients. But just finding a space is usually very difficult and usually takes the most time.

In my bag I keep a small bag of sensory toys, always have my ipod and a set of cards from stickman communications that help me communicate if I am finding it hard to speak. Maybe it would help you in those situations to have a set up that works for you to help you manage those environments when they are unavoidable?

Did you explain to the nurses that you were finding that area difficult? Once when I was probably (from later diagnosis) manic and being still was really uncomfortable the nurse from triage arranged that I could pace up and down in a certain area and when it was time to go through they would let me know.
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Offline Vermilion

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Re: Should I complain about A&E? *Trig SH*
« Reply #3 on: August 25, 2019, 06:03:44 PM »
I know that sepsis is difficult to spot sometimes, I thought I had caught a cold or flu. It was definitely sepsis though, it was later confirmed with a blood test at the b**n unit. By the time I got there I struggled to stand up and fell over. What I don't understand is why the nurse who assessed the b**n didn't realise that the infection was severe and obviously couldn't wait for so long y'know? I don't think that I was under observation if I was left in the waiting room and didn't see a nurse or doctor the whole time I was in there other than the nurse who assessed it, I was about 10 hours until I saw any medical staff after the initial assessment. As far as I could tell there were no doctors there until about 7am ish since not one person got called in. This isn't a MIU but an A&E and surely there should be a doctor there? I guess I just wanted to mention it so that they could make sure that it doesn't happen to anyone else. I just think that they could've at least been honest instead of bullshitting me so that I could've gone somewhere else. I feel like I'd never be able to trust the staff there because they lied to me, though I admit that could be just my irrational brain.

I understand that there's not a lot of things that can be done at A&E re autism but I feel that there was a lot of unnecessary sensory stuff going on. An example is the amount of noisy vending machines with flashing lights which added to the stress of the place. I know it wouldn't bother 'normal' people but it really got too much and it wouldn't do any harm to turn the noise and lights off. I did ask if I could wait in the foyer but then they claimed that they'd called me and I didn't hear them- I did explain that I needed to wait somewhere quieter due to autism but I'm guessing that the receptionist didn't tell them. I feel like a bit more communication could be helpful. I remember a previous visit when I was brought in by paramedics and I told them that I'm autistic and that I'd prefer to be treated at home, it wasn't possible but when they took me to the hospital no one was informed so I kept having to tell every nurse, doctor, crisis team etc. They do need to communicate better I think? I know that A&E is a busy place but I feel like they could have made it more bearable for people with sensory issues, is it reasonable to make suggestions about it?

Are my concerns valid? I know that I haven't exactly got a rational brain which is why I'm asking others about it. I really don't want to come across as an arsehole, I'm so grateful for the NHS, they've saved my arse a number of times but I just feel that things could be improved at A&E y'know? Maybe if I wrote to them I could also mention how good other services have been such as the b**n unit/GPs etc and just make some suggestions? Is that reasonable?
RIP Clyde - November 25th 2018
RIP Bonnie - November 24th 2018
RIP Columbus - August 22nd 2018
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Online Lorien

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Re: Should I complain about A&E? *Trig SH*
« Reply #4 on: August 26, 2019, 05:26:11 AM »
I've never heard of sepsis not requiring treatment in ICU and where an injury is involved often surgery. Are you sure that there wasn't a misunderstanding?

All A&E departments are required to treat people within four hours irrespective of the reasons for attending, so if it took that long to treat you then they will have had to investigate themselves.

If you feel like making a complaint will help then do, but it may frustrate you more. I've made 2 complaints ever. Both had multiple 'sorry we've exceeded our target as we are still investigating' the woman from the crisis team lied as much as possible and appeared to get a 'don't do that again' chat for the things they could corroborate and the oh her, a GP was 'spoken to' and given additional training. Neither made me feel better. But both caused more stress than ifv I had left it.
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Offline Basement Agent

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Re: Should I complain about A&E? *Trig SH*
« Reply #5 on: August 26, 2019, 09:50:56 PM »
I think it depends on what you want to get out of it. If you do go down the complaints route, maybe keep it as feedback - succinct, keep most of the emotion out of it - fine to say disappointing, stressful. If there was something systemic note that, but I wouldn't necessarily get into the blame game as you just be hitting your head off a brick wall on that front. Unless you feel something was clinically negligent or there were seriously poor communication skills.

Disability access for invisible/nuerodevelopmental ones may not feature high on the agenda in institutions (in policy perhaps, but less so practice because of resources and change is very slow to the adapt to the ASD population). Have a look online and see if you can find a hospital that has been recognised for good ASD practice and suggest this as a model, that way your comments are constructive.

Something for future reference. https://www.autism.org.uk/about/health/hospital-passport.aspx

I use noise cancelling earphones and find them quite good.
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Online Tucan

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Re: Should I complain about A&E? *Trig SH*
« Reply #6 on: August 27, 2019, 09:51:09 AM »
A few of my autistic friends also use noise cancelling headphones and they are great. I tried a pair.
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Offline Vermilion

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Re: Should I complain about A&E? *Trig SH*
« Reply #7 on: August 27, 2019, 02:35:39 PM »
Noise cancelling headphones are a good idea but I worry that I won't hear when I'm called in..

The 'complaint' would be feedback/suggestions with the only aim to make make things a little better for those on the spectrum. I think that I am getting frustrated that everything is so much harder because I happened to be born with autism. I'm thinking that if nobody mentions things then nothing will change y'know? I've had better experiences (though A&E will be chaos no matter what) and I was just going to make suggestions based on that. I was also going to mention how lovely the staff actually we're but I was just let down by the waiting time and the sensory overload was unnecessary stress; honestly, I have nothing but compliments re other NHS services (despite my frustrations with CMHT lack of funding) and this would be emphasised too.

I also think that 13 hours is a ridiculous time to wait regardless of the issue that your at A&E for. If they'll automatically investigate then there's probably no point in reporting it?
RIP Clyde - November 25th 2018
RIP Bonnie - November 24th 2018
RIP Columbus - August 22nd 2018
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Online Lorien

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Re: Should I complain about A&E? *Trig SH*
« Reply #8 on: August 28, 2019, 12:11:17 AM »
Headphones 🎧 - I have Sony WH-H900 h.ear they have a lot of different settings. The main thing I really rely on is the feature that allows 1tap pause on the right ear up and hanloding your hand over it reduces the input volume for you to hear what else is happening. It also has 3 settings noise cancelling, ambient sound and off. Mostly I use ambient sound because I can hear what it happening, but it is dulled. I hear more of what is happening than with my noise cancelling ear buds, but it isn't loud and I can hear whatever I want chosse to hear. It is also possible to have a few notes to give to the staff to tell them to approach you because of your headphones. I can switch to ambient sound with no other music or audio book and be able to have a conversation.

I think my experience has been that mostly if I know what the difficulty is it is possible to find a way around it for most things. I also think it's been really beneficial to me to try to balance things when I think about them and meet people in the middle. As much as possible I am prepared for anything I might need to do that is hard, and before it was needed. I made sure that the basics of what I need from people written down, but it's probably not helpful to expect adjustments. I've found in lots of things low/no expectations makes a positive response more  appreciated and a negative one less frustrating.

NAS also do an https://www.autism.org.uk/products/free-resources/autism-alert-cards.aspx

I know this might sound weird but have you done anything to help you get to know your Autism?
“Dark times lie ahead of us and there will be a time when we must choose between what is easy and what is right.”

“It is our choices...that show what we truly are, far more than our abilities.”

“Happiness can be found in the darkest of times, if one only remembers to turn on the light.”