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Inaccessibility, ignorance and lack of compassion – my experience at A&E

Ami2301Ami2301 Community Co-Production Group Posts: 7,764 Disability Gamechanger
edited February 26 in Guest blogs

In this guest blog, @Ami2301 revisits a worrying trip to A&E during early pregnancy and tells us how the visit highlighted flaws in accessibility and compassion for disabled mums-to-be.


My name is Ami, I’m 26 and have a three-month old daughter. I have Sensory Ataxia, Transverse Myelitis, hearing loss, central vision loss and Mitochondrial Disease. I’m also the blogger at Undercover Superhero

Seeing our baby for the first time

We were on our way to hospital to have our first scan and I was so excited but also incredibly anxious. Many ‘what ifs’ were racing around in my head. After what my body had endured a few years ago, we believed that I couldn’t become pregnant, or that my body just couldn’t handle being pregnant. I really need to stop underestimating what my body was capable of.

As we approached the maternity department, it felt very surreal to be sitting socially distanced amongst the other pregnant women and I felt very thankful that I was one of them. Although, I was struck with guilt as my husband was with me due to my transfer and communication needs, and all the other women didn’t have their partners or loved one with them due to the pandemic. Despite it being out of my control, I felt very guilty.

As soon as the sonographer placed the scan device on my stomach, our little baby appeared and was already waving. The monitor was brought closer to me to enable me to see a bit clearer. It was truly wonderful to see and we were absolutely besotted. Ewan (my husband) relayed what the sonographer had said, and I was over the moon to be told that our baby had a strong heartbeat and that all looked well. We found out that I was exactly 13 weeks. 

Was it all too good to be true?

Two days later, Ewan helped me transfer onto the toilet, and I burst into tears as I discovered there was a lot of blood. I didn’t have to say anything, I just turned to Ewan with tears running down my face and he instantly knew. He reacted quickly, cleaning me and helping me onto our bed. Then within seconds, he phoned the helpline number explaining what we’d just found.

Ewan was told that as I was only 13 weeks, the best thing to do was to see how I was overnight and if I was still bleeding in the morning then I should try and be seen by a midwife. As devastating as it is, knowing that 13 weeks isn’t considered a viable milestone during pregnancy, I thought I surely should have been checked as soon as possible? Did they really expect us to sleep, believing we could be losing our baby?

We weren’t going to wait until morning and my mum drove us to A&E, where we arrived just before midnight. We waited an hour before we were seen and although I had no pain, the bleeding was frightening. The first nurse took my details, and her assistant checked my blood pressure and observations.  At this point everything was fine. But it was when the assistant wanted to take blood that the lack of compassion and understanding began.

I felt so embarrassed.

When the assistant was on the third vial and could clearly see I was beginning to faint, she frantically waved her hand in front of my face to distract me which made me feel dizzier. She then started clicking her fingers and pointing to the vials. I could see five vials and she was still taking more, then she began putting a cannula into my hand. 

When she went to get Ewan from the waiting room, I realised the door had been open the entire time which meant other people would have seen me slowly passing out. I felt so embarrassed. Ewan could tell by my facial expression that I wasn’t happy with how I’d been treated, but before he could say anything, he was given a bottle for me to do a urine sample in and was told to sit back in the waiting room when I’d finished.

Still feeling weak, they expected me to transfer with my walking frame having nearly fainted just minutes before. I need to use both hands to be able to transfer safely and I refused to attempt transferring with only one free hand. However, the assistant couldn’t understand why I couldn’t walk with my frame, despite being present when we explained about my disabilities.

Ewan explained five times that I couldn’t transfer with one hand before the nurse overheard and told the assistant to remove the cannula. We asked if a hoist was available and were told “no”, even without asking another member of staff. This still concerns me now - that if I were to visit A&E again and required a hoist, they wouldn’t agree to asking if one was available or even ask another department.

Following this, I very wobbly managed to get a urine sample, then we returned to the waiting room. We were called back in and a doctor saw us. I was about to get my sample out of my bag when the doctor told Ewan that it was too late to send it off for testing. Annoyed is not the word.


How long have you been in a wheelchair?

The doctor sat slouched in his chair saying that my results were fine. As someone with various disabilities, I needed to know what I was tested for and what the result indicated as opposed to just ‘fine’ or ‘normal’. Yet he just kept saying that everything was fine. He asked routine questions about pain or discomfort, how did I feel, when did the bleeding begin, etc. Then came the irrelevant questions which I strongly felt like he was wasting our time with.

“How long have you been in a wheelchair? How does your hearing/sight loss affect you? What can or can’t you do?” I sat there perplexed as Ewan relayed the questions to me. How were these questions relevant to my bleeding? The doctor told Ewan that he didn’t know what to suggest. It was us who prompted him to ask if we could have a scan or our baby’s heartbeat checked at least. Surely things couldn’t get any worse?


Ignorance and lack of compassion

After another hour in the waiting room, it was now past 4am and a porter came to take us to the maternity ward. Once we were told to go into a side room, I transferred onto a bed. Ewan made sure I was okay before heading to the toilet. While he was out, a doctor came in the room wearing personal protective equipment. I could tell he was trying to talk to me as his mask was moving. 

I said I have hearing loss and my husband will help by relaying what he had said. The doctor started reading my notes and seconds later, Ewan came back. I was told that the doctor was still trying to talk to me despite having said I have hearing loss. Ewan sat next to me and was listening to the doctor. The same routine questions were asked, and we then asked if I would be having a scan or if baby’s heartbeat would be checked. “No, there isn’t any equipment available and the first available appointment to have a scan would be in 2 weeks’ time.” Bear in mind, there was a scan machine right next to my bed. We were lost for words. 
 
Ami laid in hospital looking tired and frustrated with an ultrasound machine stood at the side of her bed

Instead, my cervix would be examined. all we got told was if my cervix was still closed then there is a high chance that baby is fine. For first time parents-to-be, we didn’t know if this was routine. Not just the examination, but how we were spoken to and the lack of information. Thankfully, the opening of my cervix was still closed. I’ll never forget how much this doctor lacked compassion and what he said next left me feeling utterly worthless.

“Your cervix is closed, so you can go home now.” With that, he left, and we never saw him again. Ewan and I looked at each other in shock, disbelief and frustration. A nurse came in and Ewan kept asking why everything wasn’t checked. The nurse just shrugged. All the while, I sat there staring at the scan machine. Was I overreacting?


Finally, an answer

It was my midwife who spoke to Ewan on the phone and reassured us, by explaining what my blood tests showed, and gave us more answers than we got from hospital. She was appalled by how we were treated and agreed with us that baby’s heartbeat should have been checked, at the least.

I went on to have a smooth pregnancy, despite pelvic girdle pain in the third trimester, and now have a happy and healthy three-month old daughter. Every hospital needs to be accessible. Full stop.

Your thoughts

We really appreciate Ami sharing such a sensitive memory with us and thank her for her continued work around raising awareness of disablement. We agree that hospitals should be accessible to all and in amplifying our community’s voices hope to draw attention to where services can be improved.

Following reading this blog, we wondered:
• Do you have anything to say to Ami?
• Does Ami’s story resonate with anything you’ve experienced during a medical emergency?
• What other barriers to accessibility have you come against during hospital visits?  

Let us know in the comments below :)

Disability Gamechanger - 2019

Replies

  • Cher_ScopeCher_Scope Posts: 4,111

    Scope community team

    A huge thank you to you @Ami2301 for sharing this sensitive story with us.  We are all overjoyed that you have gorgeous Daisy now and I'm sorry your treatment in A&E wasn't accommodating of your needs  :(  
    Online Community Co-ordinator

    Want to tell us about your experience on the online community?  Talk to our chatbot and let us know.
  • lisathomas50lisathomas50 Posts: 4,363 Disability Gamechanger
    @Ami2301 I had a terrible experience within one of my pregnancy  but it wasn't a happy ending 

    Sorry that you had to go through that its awful 😔


  • woodbinewoodbine Community Co-Production Group Posts: 4,562 Disability Gamechanger
    Same from me thanks for sharing Ami and whilst what happened was totally out of order the end result was fantastic.

    It did remind me of many years ago, in 1983 we were expecting our first but after 7 weeks Julie had a miscarriage, she was kept in hospital while she had a D and C the awful thing was that they put her on a maternity ward with new mums with their new babies, insensative wasn't the word. it was the worst few days of our lives, and we have never forgotten the baby we didn't have, luckily we went on to have two successful pregnancies and they are both in their 30's now.
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • Sandy_123Sandy_123 Member Posts: 1,543 Pioneering
    @Ami2301 thanks for sharing your story, I'm really pleased to see that the end result was a good one, a beautiful baby girl. 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,764 Disability Gamechanger
    Thanks everyone, and thank you for sharing your experiences also, i'm sorry you both have been through something similar. 
    Disability Gamechanger - 2019
  • Leigh_SLeigh_S Member Posts: 8 Listener
    I went for an MRI at the end of last year and I took a hospital passport with me that I downloaded from the national autistic society website. In the passport I had repeatedly put that when in pain I’m unable to communicate it. After an IV went wrong in one hand I had it removed and put into the other hand instead. Both of these were painful and , after cold air blowing on both hands during the MRI, I was in a lot of pain with my hands afterwards. I wasn’t asked at any point if I was in pain, I was left alone to struggle to get dressed (my partner was in the waiting room and could have helped if someone had gotten him) and I wasn’t told about how the first IV would affect my hand.
    I spent 2 weeks with half my hand bruised and unable to use it properly (including over Christmas, which ruined it for me as I ended up having 3 meltdowns on Christmas Day) and had to do my own online research to get any answers.
    It was a shame that this negative memory took away from the positive things the team did that day to accommodate me, including talking through what was going to happen, distracting me from the IV insertions and letting me know how much longer I was going to be in the MRI at different times.
  • DocDoc Member Posts: 6 Connected
    Thankyou for sharing what must be a painful experience.
    I've found hospital staff are, for the most part, totally inconsiderate of both physical and psychological difficulties. 
    I have CPTSD and mobility issues, I use a wheelchair. I needed surgery, despite repeatedly explaining, for months, that I needed pants on and a female present (any) when coming round from anaesthetic, and why, I awoke to 2 men looming over me, no pants, no female in sight. Cue panic attack! I managed to calm to a state of high anxiety. It was 5 hours before I received diazepam because they forgot to tell the ward when they transferred me, too little too late. My partner took me outside to calm down, but I couldn't go back in, state of utter panic when we tried. The on call doctor was kind enough to see me outside. When I eventually got home and felt safe I had a nervous breakdown. 10 years later I still have panic attacks just seeing that hospital, even photos. I hadto move to another city for continuing treatment.
    Another problem is if I need to go to hospital in emergencies. Ambulances won't take my folding wheelchair. This means I'm effectively trapped and reliant on strangers pushing me. I'm anxious enough in hospital, without having a stranger behind me and being totally powerless. 


  • briancharles5612briancharles5612 Member Posts: 41 Connected
    It’s horrible to hear your story, but not surprising also. My son was taken to hospital with a viral rash last year.

    Firstly due to Covid his temperature meant he had to go in a covid test ward with adults. He was in with a 60 year old woman separated by a curtain only. They had no children’s ward apparently for it.

    When I said this was inappropriate and I may move him. I was told if I did that they would class it as a safe guarding issue and potentially get the social.

    As he has autism and doesn’t understand the tests frightened him and he hated even the toe plaster monitor. I was assured though the children’s ward were coming and they were the experts.

    They fared no better to the point paracetamol was given by suppository. He was also discharged.

    i found in the night, as he had a bad night and they said he will be fine at home. 111 said to take him back in.

    They should’ve done bloods etc on him, but didn’t know how to handle him and monitored his temperature for two days. Again I said would he better at a specialist hospital. This time no threats but I was assured he would be fine there.

    it took him two to three months to get over the impact of his visit.

    we are hoping his autism diagnosis protects him a bit more, and hoping he’s not back in there for a long while, but we don’t have much hope.

  • MarkmywordsMarkmywords Member Posts: 421 Pioneering
    Hello @Ami2301

    I've never actually had a good experience with A&E in my life !
    • I once went in at about 2AM with intense pain back when I had cancer. As they were unwilling to deal with such a patient, I was parked-up for the dayshift !
      I walked out after 3-4 hours unseen. A nurse phoned me the following morning panicking but only about the cannula that hadn't been removed.
    • I went in another time with something in my foot that I'd trodden on and was too disabled to even see it. After 4 hours sat in a wheelchair, I was in so much pain from that that I hobbled out with the object bleeding. It eventually worked its own way out a week or two later.
    • I once collapsed at work (it turned out to be a lung infection) and the ambulance crew kept telling me to "get up onto the stretcher, you're not injured" and arguing with me about what my post-cancer conditions actually meant !
      Once at the hospital, I had bypassed the "guards" and the doctor listened to my briefing on my being immunocompromised and acted perfectly.
    • I once had an infection (it turned out to be pnuemonia) and the ambulance refused to come out to me. Eventually I stopped responding to my family phoning me and they called my GP who called 999 and demanded that they come out. The police had to break my door down to let them in !!!!
    I've walked out of hospitals more times than I can count due to their unwillingness or inability to treat me. I've been parked-up so many times while people who came in after me were seen.

    So no, I don't rate ambulance or A&E out of hours. They are understaffed and underskilled. The lower a medic's rank, the more they seem to already know what is wrong with me !
  • veritercveriterc Member Posts: 204 Pioneering
    Ami, I was appalled to read your story, and horrified at the way you were treated.  I am not as disabled as you, but I have now developed 'crocodile tears syndrome'.  One day, when faced with callous indifference on the part of a doctor, I burst into tears.  The effect was magical.  I felt a fraud that I had used this feminine trick to get better care - but suddenly a senior doctor appeared, took in the situation at a glance, and suddenly my care improved 100%.
    Not the best thing to do, but as far as I was concerned I needed to get proper attention, and it worked.

  • Ami2301Ami2301 Community Co-Production Group Posts: 7,764 Disability Gamechanger
    Leigh_S said:
    I went for an MRI at the end of last year and I took a hospital passport with me that I downloaded from the national autistic society website. In the passport I had repeatedly put that when in pain I’m unable to communicate it. After an IV went wrong in one hand I had it removed and put into the other hand instead. Both of these were painful and , after cold air blowing on both hands during the MRI, I was in a lot of pain with my hands afterwards. I wasn’t asked at any point if I was in pain, I was left alone to struggle to get dressed (my partner was in the waiting room and could have helped if someone had gotten him) and I wasn’t told about how the first IV would affect my hand.
    I spent 2 weeks with half my hand bruised and unable to use it properly (including over Christmas, which ruined it for me as I ended up having 3 meltdowns on Christmas Day) and had to do my own online research to get any answers.
    It was a shame that this negative memory took away from the positive things the team did that day to accommodate me, including talking through what was going to happen, distracting me from the IV insertions and letting me know how much longer I was going to be in the MRI at different times.
    Thank you for sharing this @Leigh_S and i'm so sorry for how you were treated. I hope that any appointments you have in the future, that they treat you with respect, ensure you what is happening/any side effects/etc, but most importantly, listen to your needs.
    Disability Gamechanger - 2019
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,764 Disability Gamechanger
    Doc said:
    Thankyou for sharing what must be a painful experience.
    I've found hospital staff are, for the most part, totally inconsiderate of both physical and psychological difficulties. 
    I have CPTSD and mobility issues, I use a wheelchair. I needed surgery, despite repeatedly explaining, for months, that I needed pants on and a female present (any) when coming round from anaesthetic, and why, I awoke to 2 men looming over me, no pants, no female in sight. Cue panic attack! I managed to calm to a state of high anxiety. It was 5 hours before I received diazepam because they forgot to tell the ward when they transferred me, too little too late. My partner took me outside to calm down, but I couldn't go back in, state of utter panic when we tried. The on call doctor was kind enough to see me outside. When I eventually got home and felt safe I had a nervous breakdown. 10 years later I still have panic attacks just seeing that hospital, even photos. I hadto move to another city for continuing treatment.
    Another problem is if I need to go to hospital in emergencies. Ambulances won't take my folding wheelchair. This means I'm effectively trapped and reliant on strangers pushing me. I'm anxious enough in hospital, without having a stranger behind me and being totally powerless. 


    Thank you for sharing your experience @Doc and i'm deeply sorry with how much this affected you. I strongly feel that anybody who works in the medical and care field, need some understanding of trauma awareness. I suffer with PTSD (due to being in ICU 3 years ago) and i've found that only half of the staff i have seen/interacted with actually listen, the other half just brush it off.

    I never knew ambulances can decline to take a patient's wheelchair with them, i'm curious as to why they would refuse so i will have a look on Google to see if i can find out why. I agree this is unacceptable, a wheelchair or mobility aid is a source of independence, and therefore, they are taking that away from you. I really do hope this changes and patients are  allowed to take their wheelchair in emergencies.
    Disability Gamechanger - 2019
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,764 Disability Gamechanger
    It’s horrible to hear your story, but not surprising also. My son was taken to hospital with a viral rash last year.

    Firstly due to Covid his temperature meant he had to go in a covid test ward with adults. He was in with a 60 year old woman separated by a curtain only. They had no children’s ward apparently for it.

    When I said this was inappropriate and I may move him. I was told if I did that they would class it as a safe guarding issue and potentially get the social.

    As he has autism and doesn’t understand the tests frightened him and he hated even the toe plaster monitor. I was assured though the children’s ward were coming and they were the experts.

    They fared no better to the point paracetamol was given by suppository. He was also discharged.

    i found in the night, as he had a bad night and they said he will be fine at home. 111 said to take him back in.

    They should’ve done bloods etc on him, but didn’t know how to handle him and monitored his temperature for two days. Again I said would he better at a specialist hospital. This time no threats but I was assured he would be fine there.

    it took him two to three months to get over the impact of his visit.

    we are hoping his autism diagnosis protects him a bit more, and hoping he’s not back in there for a long while, but we don’t have much hope.

    Thank you for sharing this @briancharles5612 and i'm so sorry this happened. I completely understand how you felt, and rightly so that adults and children need to be in seperate areas. I'm unsure how this situation or something similar could be resolved quickly in the peak of a pandemic and staff trying to be efficient and respond quickly to patients.  However, this should not be a reason for your son to not receive the treatment that he needed.
    Disability Gamechanger - 2019
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,764 Disability Gamechanger
    Hello @Ami2301

    I've never actually had a good experience with A&E in my life !
    • I once went in at about 2AM with intense pain back when I had cancer. As they were unwilling to deal with such a patient, I was parked-up for the dayshift !
      I walked out after 3-4 hours unseen. A nurse phoned me the following morning panicking but only about the cannula that hadn't been removed.
    • I went in another time with something in my foot that I'd trodden on and was too disabled to even see it. After 4 hours sat in a wheelchair, I was in so much pain from that that I hobbled out with the object bleeding. It eventually worked its own way out a week or two later.
    • I once collapsed at work (it turned out to be a lung infection) and the ambulance crew kept telling me to "get up onto the stretcher, you're not injured" and arguing with me about what my post-cancer conditions actually meant !
      Once at the hospital, I had bypassed the "guards" and the doctor listened to my briefing on my being immunocompromised and acted perfectly.
    • I once had an infection (it turned out to be pnuemonia) and the ambulance refused to come out to me. Eventually I stopped responding to my family phoning me and they called my GP who called 999 and demanded that they come out. The police had to break my door down to let them in !!!!
    I've walked out of hospitals more times than I can count due to their unwillingness or inability to treat me. I've been parked-up so many times while people who came in after me were seen.

    So no, I don't rate ambulance or A&E out of hours. They are understaffed and underskilled. The lower a medic's rank, the more they seem to already know what is wrong with me !
    Goodness me! I can't stop shaking my head while i think how to reply. All i can say is that i am terribly sorry you were treated so badly. I understand it can be daunting making a complaint, but did you consider making a complaint? This is beyond unacceptable and i'm still shaking my head. Thank you for sharing your experience though, and i hope you receive the treatment in future, if needed, that is fair and right for you.
    Disability Gamechanger - 2019
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,764 Disability Gamechanger
    veriterc said:
    Ami, I was appalled to read your story, and horrified at the way you were treated.  I am not as disabled as you, but I have now developed 'crocodile tears syndrome'.  One day, when faced with callous indifference on the part of a doctor, I burst into tears.  The effect was magical.  I felt a fraud that I had used this feminine trick to get better care - but suddenly a senior doctor appeared, took in the situation at a glance, and suddenly my care improved 100%.
    Not the best thing to do, but as far as I was concerned I needed to get proper attention, and it worked.

    Thank you for sharing this @veriterc. I completely understand your reason behind this, however it is unacceptable that we may need to resort to this in order to receive better treatment. I hope future appointments/treatment you receive better care the first time round.
    Disability Gamechanger - 2019
  • MarkmywordsMarkmywords Member Posts: 421 Pioneering
    Ami2301 said:
    Hello @Ami2301

    I've never actually had a good experience with A&E in my life !

    I've walked out of hospitals more times than I can count due to their unwillingness or inability to treat me. I've been parked-up so many times while people who came in after me were seen.

    So no, I don't rate ambulance or A&E out of hours. They are understaffed and underskilled. The lower a medic's rank, the more they seem to already know what is wrong with me !
    Goodness me! I can't stop shaking my head while i think how to reply. All i can say is that i am terribly sorry you were treated so badly. I understand it can be daunting making a complaint, but did you consider making a complaint? This is beyond unacceptable and i'm still shaking my head. Thank you for sharing your experience though, and i hope you receive the treatment in future, if needed, that is fair and right for you.

    Thanks. As for complaining, have you ever heard of, or met, someone who got any public body to admit their shortcomings and change?
    Don't even get me started on the Adult Services Dept. who phoned me 6 months after I asked for emergency post-surgery help!

    A major city's newspaper did a piece on me once about how inaccessible I'd found the hospital. It resulted in them putting out the usual "patient service is our highest priority" and nothing changed.
  • Kit_Kit_ Member Posts: 31 Connected
    I've had a couple of bad experiences at A&E. I'm autistic and go non-verbal when I'm in pain. I had appendicitis last year and 111 told me to go straight to hospital, when I got there I was waiting for hours even though I'd been told I needed to be seen immediately and that my appendix could burst at any moment. When I finally saw a dr, she treated me with suspicion, told me that I didn't seem like I was in pain and asked my why I hadn't taken over the counter painkillers (I'd been vomiting for 12 hours and couldn't even drink a sip of water so couldn't take tablets). I was really struggling to speak and my mum was supposed to be with me to help but they kept separating us and only asked me questions when I was on my own. I'm sure that if I'd been crying and screaming I would've been treated sooner but I can't scream when I'm in pain.
    They also lost all of my belongings when I went for surgery, which included my glasses and things like my phone. Luckily I can see without my glasses but I get a headache and I can't read, just generally feels a bit disorienting. I told the nurse about it but she forgot to sort it out before she left and the night shift staff didn't think it was worth their time to fetch my things for me. It was really noisy on the ward but my phone and headphones were in the bag they'd lost so I couldn't listen to music to calm myself down.
    I also have chronic pain and I have a bad shoulder injury. They kept putting my water jug too far away and on my left (injured) side. I'd just had abdominal surgery so couldn't twist and reach over with my right hand so I kept having to call them over to move the water nearer, but they did it every time they refilled the jug and took quite a while to come so I was left without access to water on several occasions. Because I'd used the call button so often they started getting annoyed with me and sometimes would come in, switch the button to say that they'd dealt with my issue and leave without speaking to me, so I'd have to press it again.
    Luckily I was only in for 2 nights, I could not have coped being in any longer.
    Unfortunately I didn't heal well and ended up needing extra care after. Personally I think they ignored me when I said that hypermobility affects everything including skin and makes me heal slower. The stitches dissolved before I had healed so I got an infection. I've had planned surgery before and didn't have any problems but they used different stitches that time. When I told anyone about my HSD they said that it didn't sound relevant and cut me off when I tried to explain what it meant, they had obviously not heard of it but decided they didn't need to know. I think the problems I had with the wound could have been avoided if they'd listened.
    I feel so traumatised by the whole experience. The staff were so cold and rude all the time. Even the 1 person who was nice and smiley didn't actually treat me well or listen to me. There were several occasions where I felt like I'd been left to die, I was wondering how long it would be before anyone would even notice if that had happened. I wonder if I'll ever get over the experience, I'm not sure what I'll do next time I need help, I'll be really reluctant to go to A&E again but obviously you don't really have a choice in that kind of situation.
  • DocDoc Member Posts: 6 Connected
    Ami2301 said:
    Doc said:
    Thankyou for sharing what must be a painful experience.
    I've found hospital staff are, for the most part, totally inconsiderate of both physical and psychological difficulties. 
    I have CPTSD and mobility issues, I use a wheelchair. I needed surgery, despite repeatedly explaining, for months, that I needed pants on and a female present (any) when coming round from anaesthetic, and why, I awoke to 2 men looming over me, no pants, no female in sight. Cue panic attack! I managed to calm to a state of high anxiety. It was 5 hours before I received diazepam because they forgot to tell the ward when they transferred me, too little too late. My partner took me outside to calm down, but I couldn't go back in, state of utter panic when we tried. The on call doctor was kind enough to see me outside. When I eventually got home and felt safe I had a nervous breakdown. 10 years later I still have panic attacks just seeing that hospital, even photos. I hadto move to another city for continuing treatment.
    Another problem is if I need to go to hospital in emergencies. Ambulances won't take my folding wheelchair. This means I'm effectively trapped and reliant on strangers pushing me. I'm anxious enough in hospital, without having a stranger behind me and being totally powerless. 


    Thank you for sharing your experience @Doc and i'm deeply sorry with how much this affected you. I strongly feel that anybody who works in the medical and care field, need some understanding of trauma awareness. I suffer with PTSD (due to being in ICU 3 years ago) and i've found that only half of the staff i have seen/interacted with actually listen, the other half just brush it off.

    I never knew ambulances can decline to take a patient's wheelchair with them, i'm curious as to why they would refuse so i will have a look on Google to see if i can find out why. I agree this is unacceptable, a wheelchair or mobility aid is a source of independence, and therefore, they are taking that away from you. I really do hope this changes and patients are  allowed to take their wheelchair in emergencies.
    The paramedic told me there isn't room in the ambulance for a wheelchair, even one that folds and fits in a car boot. 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,764 Disability Gamechanger

    Thanks. As for complaining, have you ever heard of, or met, someone who got any public body to admit their shortcomings and change?
    Don't even get me started on the Adult Services Dept. who phoned me 6 months after I asked for emergency post-surgery help!

    A major city's newspaper did a piece on me once about how inaccessible I'd found the hospital. It resulted in them putting out the usual "patient service is our highest priority" and nothing changed.
    Absolutely unbelievable. I'm so sorry @Markmywords :(
    Disability Gamechanger - 2019
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,764 Disability Gamechanger
    Kit_ said:
    I've had a couple of bad experiences at A&E. I'm autistic and go non-verbal when I'm in pain. I had appendicitis last year and 111 told me to go straight to hospital, when I got there I was waiting for hours even though I'd been told I needed to be seen immediately and that my appendix could burst at any moment. When I finally saw a dr, she treated me with suspicion, told me that I didn't seem like I was in pain and asked my why I hadn't taken over the counter painkillers (I'd been vomiting for 12 hours and couldn't even drink a sip of water so couldn't take tablets). I was really struggling to speak and my mum was supposed to be with me to help but they kept separating us and only asked me questions when I was on my own. I'm sure that if I'd been crying and screaming I would've been treated sooner but I can't scream when I'm in pain.
    They also lost all of my belongings when I went for surgery, which included my glasses and things like my phone. Luckily I can see without my glasses but I get a headache and I can't read, just generally feels a bit disorienting. I told the nurse about it but she forgot to sort it out before she left and the night shift staff didn't think it was worth their time to fetch my things for me. It was really noisy on the ward but my phone and headphones were in the bag they'd lost so I couldn't listen to music to calm myself down.
    I also have chronic pain and I have a bad shoulder injury. They kept putting my water jug too far away and on my left (injured) side. I'd just had abdominal surgery so couldn't twist and reach over with my right hand so I kept having to call them over to move the water nearer, but they did it every time they refilled the jug and took quite a while to come so I was left without access to water on several occasions. Because I'd used the call button so often they started getting annoyed with me and sometimes would come in, switch the button to say that they'd dealt with my issue and leave without speaking to me, so I'd have to press it again.
    Luckily I was only in for 2 nights, I could not have coped being in any longer.
    Unfortunately I didn't heal well and ended up needing extra care after. Personally I think they ignored me when I said that hypermobility affects everything including skin and makes me heal slower. The stitches dissolved before I had healed so I got an infection. I've had planned surgery before and didn't have any problems but they used different stitches that time. When I told anyone about my HSD they said that it didn't sound relevant and cut me off when I tried to explain what it meant, they had obviously not heard of it but decided they didn't need to know. I think the problems I had with the wound could have been avoided if they'd listened.
    I feel so traumatised by the whole experience. The staff were so cold and rude all the time. Even the 1 person who was nice and smiley didn't actually treat me well or listen to me. There were several occasions where I felt like I'd been left to die, I was wondering how long it would be before anyone would even notice if that had happened. I wonder if I'll ever get over the experience, I'm not sure what I'll do next time I need help, I'll be really reluctant to go to A&E again but obviously you don't really have a choice in that kind of situation.
    Thank you for sharing your experience @Kit_ and i'm sorry that you were treated so poorly. I had appendicitis when i was 12 and remember how scary it was. I've found that to be very common, unfortunately, that if a patient already has a health condition or disability, we end up becoming reluctant to seek medical help or be taken to A&E because either 1) our symptoms will most likely be based on our already existing condition or 2) because of the poor care and treatment we have received in the past.
    Disability Gamechanger - 2019
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,764 Disability Gamechanger
    Doc said:
    The paramedic told me there isn't room in the ambulance for a wheelchair, even one that folds and fits in a car boot. 
    Hmm... i'm just thinking if this would be because the space needs to be completely accessible for them in case they need to find emergency medication or device or monitor/etc. But this then takes away your accessibility needs. I just really hope they can find a solution to resolve this.
    Disability Gamechanger - 2019
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