And I'm guessing that some people here may have experience with relatives/friends.
This is going to be difficult to read, let alone write. It is quite a harrowing series of events.
My 36yr old daughter (K) has had 2 acute strokes. K is hypothyroid + Type 1 diabetic + Bi-lateral Frozen Shoulders, and currently Covid positive (which she picked up on the stroke unit). I am also hypothyroid and currently Covid positive........ 1st time Covid for both of us.
!st visit to A&E
Some time around the end of May this year K blacked out and woke up just as her forehead hit a hard part of a sofa. Just before this happened she was complaining of feeling dizzy/very unwell, but couldn't put her finger on it. During the previous weeks she'd suffered from migraines more than usual, had thrown up a couple of times (which was unusual, but she'd put it down to migraine) and more weakness in her left arm (this shoulder has been bad for several years due to frozen shoulder, and is more badly affected than the right). K also gets painful muscle spasms mainly in her left shoulder and radiating from there to her neck and shoulder blade. Off we went to A&E to get checked out. Some time during this visit K was checked by the Stroke Nurse, who was sure that K hadn't had a stroke. After many hours discharged home.
2nd Visit to A&E
Early June. More migraine/dizzyness & unstable on her feet. The Dr thought K might have a haematoma in her neck, so taped head-blocks on, and sent for CT & MRI of her neck only. After many hours...discharged home.
3rd Visit to A&E
Mid July. This bit is really hard to say. K's behaviour had become difficult, and I was exhausted. K was still unsteady on her feet, her left arm was limp, and I sent her in an ambulance to A&E on her own. K spent the night on a trolley in the hallway. At one point she got up to go to the toilet and fell into another trolley.........they just picked her up and put her back on her trolley without checking her over (she is black and blue). She then asked for help to go to the toilet, and the male nurse, without asking if she could do it herself or for permission, just reached down and grabbed her knickers and yanked them up. She also threw up all over herself. I picked her up in the morning. They'd sent her home with a zimmer frame, which was useless because A) She couldn't use her left arm/hand. B) Not space enough everywhere to get round.......apparently they are supposed to assess this first.
4th visit to A&E (2 days after 3rd Visit)
K was really struggling to walk, and I called 111 and insisted on a GP visit. Surprisingly, the GP arrived pretty quick, and did what A&E hadn't..........said he was pretty sure she'd had a stroke, and called an ambulance. K still spent the required time on a trolley in the corridor. Every time I asked the corridor nurse in charge "How long?" I was told that "K is next in line to see the Dr". One of the nurses came over to do BP etc., and commented "Oh, I see you are better now that Mum is with you" I wanted to shout at her. "How would you behave if you were screaming for help, and nobody was listening?" but I just looked her in the eye and said sternly "We won't say any more about that" and she put her head down sheepishly. Eventually moved to a cubicle in A&E. I asked the bay nurse "How long?" the response "K is 5th in line to see the Dr". I explained that a GP had seen K and thought stroke, and the nurse moved off. Soon after, still no Dr, but the porter arrived to take K for a head CT scan. A short time later we saw a Dr sitting down at a monitor, we couldn't see the monitor, but saw him put his head in his hands before he came over to say "K had had 2 acute strokes". Straight to Resus. As we headed through the corridor to Resus, ALL the nurses there were open mouthed as we passed.........like "Oh, **** open mouthed"
Resus
The usual auto monitors were attached. Fortunately, we weren't there long before being moved to the stroke unit. While we were there the stroke nurse came in and said something mundane, then was at the resus desk on the phone shouting at someone. I didn't hear what about because I was too busy trying to console K who was balling her eyes out. We didn't really get to speak to anyone in resus because they were all busy with a guy in the next cubicle who was being violently sick and sounded like he was dying. The next day K overheard a conversation between 2 nurses the gist of which was "It was horrible in resus last night, we had a patient in one cubicle balling her eyes out and who we wanted to help, but at the same time we had to deal with a guy with a medical kink (ie he'd swallowed all sorts of objects that were spewing out everywhere).
The Stroke Unit
Excellent staff - can't fault them at all, apart from the Consultant who discharged K and told her that although K's temperature had been spiking she was certain that she did not have an infection. The stroke unit has 7 bays..........3 of which are being used for Covid patients. The three bays are kind of round the corner from the rest, but.........The day before K was discharged 2 patients from her bay were moved to the Covid bays.
The Discharge Lounge Weds (which used to be only for patients requiring transport).
K was discharged from the ward at 10:30am. We were told that K would receive her discharge summary and meds in the discharge lounge. There was a hold up, and we eventually got there at about 2:30pm. Discharge Summary & Meds arrived at 7pm. Most of the meds had not been provided, and the pharmacy closed at 7pm. We didn't have any of K's usual meds at home because I'd been asked to take them in when she was admitted. So, back to the stroke unit where they seriously considered re-admitting K . In the end they provided K with what they still had on the ward, and we got home at about 10:30pm. They wanted to take the discharge summary from me, and got a resounding "No"
Back in A&E Saturday
On the Friday I did a grocery shop, and on the way home I was more tired than I should have been. The same afternoon K slept for a few hours......not just resting, but fully asleep, and I thought Mmmn, I don't like this. So I nipped out to Tesco and bought a pack of ten Covid tests. We tested negative. Saturday morning we both woke up with banging headaches (which cleared pretty quick with paracetamol). Mid morning and K threw up violently.......and then again. Extremely dizzy and so weak that she couldn't walk at all. I called 111 and asked for an ambulance. Not long after, she couldn't even keep sips of water down, so I rang them back. An ambulance arrived pretty quick (so quick that they had no idea why they were here). I scrubbed the carpet as best and quickly as I could, and took off the sofa covers which had got a bit of splashback, then headed to A&E.
I got to A&E and found K.........yes, in the corridor. By now I'm familiar with exactly where to find the person in charge. The senior sister sits at a computer screen directing traffic/answering nurses who approach for advice. So, off I went and stood in line. I gave a quick summary, and he advised that K would be moved to a cubicle asap. I didn't really believe him, but she was moved to a cubicle much quicker than I expected. CT scan followed............Phew, not another stroke. Shortly after I approached one of the nurses to ask "What next". The nurse looked concerned as she told me "There is a plan for discharge". I was so stunned I had to ask her to repeat it. K was still unable to hold down water, and couldn't walk at all. I told the nurse that the anti-sickness meds they'd given clearly hadn't worked, K needed IV fluids, and that she couldn't go anywhere. She was admitted to the Emergency Assessment Unit (EAU) for the night. I stayed too. K tested Covid +++ on Sunday.
They wanted to move K to a general medical ward, which K refused point blank, because as anybody in the diabetes team from Consultant to Diabetes Nurse will tell you they are crap at Type 1, Eventually, just as I was about to find a wheelchair to get Kay to the car, a Registrar arrived and agreed that Kay would be better off at home.
We were told outright lies eg "The Covid beds on the stroke unit have been closed" They haven't.
Gaslighting to the point of ridiculous eg Kay was insistent that she keep her insulin with her. The Dr refused. His concession was that K could keep the insulin, but not the needles......even the charge nurse put his head in his hands at that. The Dr was insisting that K was going to hypo because she couldn't keep any food down, K insisted that her blood sugars would do the opposite......guess who was right. 25yrs of experience.
Help
I called the surgery today to ask about any help I can get to assist in K's personal hygeine. Things like something disposable to put underneath her when helping her wash.........so that I don't have to keep cleaning the floor etc. The nurse didn't know, but will get back to me. If anybody has been through something similar and has any pointers, I will be pleased to hear.
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