Disabled people
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Treated badly yet again....

TopkittenTopkitten Member Posts: 1,263 Pioneering
Yesterday I was trying to sort out a kitchen cupboard above a worktop. I managed to dislodge something which, all things being equal, should have fallen harmlessly onto the worktop. But no, nothing simple in my life. Instead if fell onto the edge of a mug containing sugar and instant coffee sending it all over the kitchen floor (lucky I hadn't added boiling water I suppose). The mug was spinning wildly and heading for the edge of the worktop when my reactions kicked in. First I pushed hard with one foot to avoid the mug landing on my bad foot. However it was the bad foot I pushed with, wrenching the ankle and sending shooting pains up into the knee and hip. These pains have persisted for almost 2 days now. Ofc I didn't stop there, I also tried to stop the mug crashing to the floor. First I spun my head back towards the worktop (having started spinning away) and then even further to locate the mug and ofc I wrenched my neck. Then I twisted my upper body to let one hand catch the mug and, you guessed it, wrenched my upper back. Both of these caused pain in both sides of my neck and both shoulders instead of just the one side I've recently had trouble with and again has persisted for 2 days. However, I made the existing neck/shoulder/arm problem worse requiring the use of a sling to prevent using the bad arm enough to limit the pain at least a little.

Then I got to last night and I made things much worse. I woke from sleep in my bed around 2am and turned onto my left side and tried sitting up to reach and drink a cold drink (it being hot and muggy last night). Before I realized what was happening I fell over the bottom of the bed backwards, slamming my head onto the floor which is concrete with a thin carpet over it. There was a terrible bang and the back of my head hurt but the next thing I remember is waking with my shoulders flat on the floor, with my neck at a bad angle and my body upside-down propped up against the bed with my feet in the air. Next thing I remember is being on the bed lying face down with no memory of moving.

I rang 111 and they were going to get a doctor to call but there was a delay so a young lady called me to see how I was doing. By now I was tipping over to the left every time I tried to sit on the edge of the bed but if I laid down I kept waking with a start with a memory of doing something with my hands but not actually holding anything. She thought I must have passed out and maybe was concussed so she called an ambulance. So I got carted off to hospital with new pain down the spine around the neck area with my head in that setup which immobilizes a persons head.

In hospital I was treated very badly. First I had to wait for a CT scan but with the impact point on the back of my head carrying the weight of my head plus the immobilizing stuff which is quite heavy. The pain was abysmal but they made me weight 45 minutes before giving me some medication to help. Despite Orthopedics recent refusal to even investigate my recent arm/neck issues the scan showed not only the damage at C4-C5 and the fusion at C5-C6 but also a new problem with C6-C7. Orthopedics not only re-iterated their refusal via proxy but they also refused to even speak to me about the new issue. A chest x-ray was also done as I have been waking with a tight chest and coughing until I brought up whatever was causing the problem. This has been going on since October when I had a chest infection diagnosed. Over the next couple of months and using 4 prescriptions the infection was cleared up but I was still coughing something up as much as ever. Rather than getting a doctor to speak to me with the result I got a couple of physio's insisting I exercise more. When I explained that an Occupational Therapist agreed with me that exercise was the worst thing I could do they then argued with me basically calling me and the OT guy idiot liars.

I then asked to speak to the Pain Team (they refused) and the OT (again refused) at which point the physio's told me the doctor's had said I was clear to go home. I had to actually argue with a nurse and another doctor to get the x-ray results. The doctor then told me the x-ray was completely clear which is rubbish as I have had shadows on chest x-ray's consistently for 20 years. I asked for an explanation of the coughing and he glibly just blamed it on smoking, the sort of rubbish I was given when I had blood pooling infections due to poor circulation in my lower legs (that was supposed to be smoking as well).

At this point the physio's returned with a chair for me to sit in as they kicked me out of the bed in A&E. I told them that in 5-10 minutes I would have to lay on the floor to lower the pain caused by sitting and they just smiled at me. 8 minutes after being parked in the waiting area I laid on the floor and this caused consternation with 4 nurses and a doctor all arguing that transport would only be a few minutes and to get back into the chair. I refused especially as it was only a few minutes after all. Ofc that was all lies and the next idea was to move me, via the chair to a different waiting area for transport patients and I was assured by 2 people that I could lay down on something once there. Ofc that was more lies as there was nowhere to lie down and so, 5 minutes later, I was once again lying on the floor.... just in a different area. But now 2 different nurses started going spare at me for being on the floor and one even called security to forcibly move me off the floor and back into the chair. I stubbornly refused to move as I had gotten the pain down somewhat. Then 3 security guys manhandled me onto one of those hard, pull-apart stretchers to get me off the floor and they were about to physically lift me manually back into the chair. By this time I was in agony and tears but fortunately just at that point 2 very nice ladies handling transport arrived and I got out in only very desperate pain and got home.

Believe it or not but when arguing with me to get off the floor one nurse asked me how I managed at home (I can't use a wheelchair at home) if I was supposedly in so much pain. I looked at her and said "I don't manage, I simply skip getting food and drink 4 or 5 days a week because I can't get any help". She shut up quickly but obviously didn't believe me.

This afternoon I got a call from a care company about providing care stating they had been contacted by Social Care. She wanted to assess my situation over the phone. I explained that I didn't have a Social Worker and hadn't been assessed since the troubles I had with them 3 years ago. Nor had they reacted to the 25 referrals for assessment that had been done over the last 18 months to 2 years. So, this woman later confirmed she had verbal confirmation to provide 3 visits a day as of tomorrow and the Reablement cover would stop. She didn't know what time I needed help (not standard 3 times a day type, she just assumed) or what I needed help with or what my place was like or anything at all about me really and only backed off when I said that the procedure was for the Social Worker to assess me, write it up, have me sign it, agree what I had to pay for myself (if anything) and then arrange care (none of which had been done). She didn't seem to care about any of this until I pointed out that without something in writing Social Care was under no obligation to pay for their services. Now she will wait until tomorrow and will contact them again to try to clarify.

Her assumptions about what I needed are way off what I need and I would certainly refuse entry and therefore payment if the help wasn't applicable. She assumed an early morning visit, wash and/or shower, breakfast, dress and tidy the bed but, as I rarely get to sleep before sunrise due to pain this visit would be superfluous. My morning usually starts at lunchtime and her idea of lunch and coffee was silly. I don't eat breakfast (haven't for years) and I shower only twice per week in late afternoon when the wet room has warmed up (coldest room in the house). I don't need help to dress, don't wash due to pain but do need sandwiches to eat at my lunchtime (3pm to 5pm ish). My tea-time visit in her idea is for evening meal but, as the rules state 4pm to 7pm and I never eat before 8pm the only use for this visit is to remove the strapping on my bad leg, wait while I shower then put the strapping back on (I cannot walk at all without it) and, as I cannot take it off and have it back on too often or the pain is bad, so I only shower once or twice a week depending on how much pain I am suffering on any given day. Ofc she wasn't thinking of a late visit at all and without one I would never eat a hot meal. She did say that only freezer meals were possible at any time and, having had to live on them for 2 years back in the past, this is unacceptable as is the fact that none of her carers wear uniforms and there is no way, with my Anxiety, Panic Attack and Paranoia issues, that no uniforms would be remotely acceptable, I'd simply keep going into panic and wanting them gone without doing anything as quickly as possible.

In addition to this a lady working for Reablement was supposed to come back again and go through any help she had arranged (none) and what charges / payments I would be liable for and what the monetary limits for getting help are. Ofc I never saw her again so have no information (another reason for getting the assessment process done right) and with Reablement pulling out tonight I doubt I will hear from her again or get the answers I need.

So now I am worrying about tomorrow and not really caring if I get any help or not. In fact, considering how I am completely stuck on ALL ways forward and neither she nor my GP are interested in helping with them, I really don't care any more about whether I live or die in the near future. All I know is that the most likely outcome is no appropriate help going forward, no way to resolve the brick walls deliberately put in my way and no future. All this on top of having trouble with my broken recliner chair which broke a week after lockdown started and they have refused to come out and fix until Thursday and assuming they don't have to take it away for weeks to repair. Hence using the bed recently after years of not doing so and trying to figure out where I can spend the 23 hours a day I used to spend in the chair elsewhere instead.

My life, if you could call it that, is dissolving back into subsisting on 1 hot meal, 1 or 2 sandwiches and coffee to get through a week and trying to find some reason, any reason, why I should bother to try and keep going;

TK
"I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.

Replies

  • AwesomelorenzoAwesomelorenzo Member Posts: 108 Connected
    Wow. That is terrible
    First, I would complain to every department.
    Secondly, please don't give up. Do you have neighbours? Do you have meals on wheels(Farm foods?) I'm thinking of company and someone who can get you some food.
  • Sophie BuckleySophie Buckley Member Posts: 12 Connected
    keep going.... I don't know what to say, it all seems wrong!

    so have you heard from a social worker at all? if you can, get a Direct Payment so you can set up your own care. I always argue that council care (as well as some agencies) are worse than care homes. and yes I live in a care home and I choose when to get up, eat and dress within reason.

    you could contact social services yourself and if you endanger put in a safeguarding concern 

    good luck :)
  • newbornnewborn Member Posts: 699 Pioneering
    Good grief TK, that's going some even by your standards.   Some of us don't  seem to get the hang of doing things by halves.   (e.g. why get hit by a car, when a train is available? True story.  Others have been astonishingly treated, too, e.g. with xrays showing broken legs, ordered to wait on trolley for admission, op, etc, then nurses literally pushing onto floor angrily ordering to go home. True story.)

    Others have posted, of course it's  right.  Silly b....r, of course people care if you live or die, haven't you noticed, we are here in your corner.   You are an important  member of the family.

     Have you seen the Baroness C report's conclusion?  She says that like systematic racism in the Lawrence police report, mistreatment and arrogance is endemic in the n.h.s, which like most public services anywhere is run for employees.  Of course individuals, many of them, most even, have fine qualities and do all they can, but arrogance and power abuse rule, and whistleblowers are frightened.   She specifically advises that nobody, ever, should meet a health professional without a suitable witness preferably also recording the transaction.

    Which is o.k. if you have a handy....what.....medical lawyer? living with you, or available to come running at a moment's notice.  Not all of us are Baronesses.
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