Off Topic....Stroke, but I can't find a UK stro... - Thyroid UK

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Off Topic....Stroke, but I can't find a UK stroke forum

nellie237 profile image
29 Replies

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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nellie237 profile image
nellie237
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29 Replies
Anthea55 profile image
Anthea55

Try the Stroke Association

stroke.org.uk/

nellie237 profile image
nellie237 in reply toAnthea55

Thank you Anthea. ❤️

SeasideSusie profile image
SeasideSusieRemembering

I have linked to a community below which is for young stroke survivors. I hope it helps:

healthunlocked.com/differen...

I have removed the expletive from your post as it will be offensive to some people.

nellie237 profile image
nellie237 in reply toSeasideSusie

Thank you Anthea. ❤️. Apologies for my foul mouth.

helvella profile image
helvellaAdministrator

I'm afraid your post sounds pretty awful. But it also makes me realise how ignorant I am about diabetes and stroke.

In an attempt to help you find somewhere there are people who do understand, I had a look round this site.

There is a stroke forum here on HealthUnlocked - healthunlocked.com/differen...

However, it doesn't seem to be very busy.

And the British Heart Foundation forum does expressly mention stroke in its own description healthunlocked.com/bhf/about

nellie237 profile image
nellie237 in reply tohelvella

Thank you helvella, and you're right it doesn't have much traffic at all. ❤️ BHF might be useful though.

humanbean profile image
humanbean

I can't offer anything sensible but I just wanted to say that your experiences and those of your daughter are horrendous and you both have my sympathies.

I hope you both get over your Covid very soon. I would guess that getting Covid on top of two recent strokes must be 10 times more worrying than Covid alone.

Don't forget that paracetamol and ibuprofen can be taken together as long as you stick to the daily limits mentioned on the packaging on how many of each can be taken per 24 hours. I've used ibuprofen and paracetamol together if I'm desperate, and have found them more effective than either one alone.

My best wishes to you both.

nellie237 profile image
nellie237 in reply tohumanbean

Thank you HB ❤️ Neither of us can take ibuprofen anymore. Heart attack/stroke it's a no,no. I'm actually better from the Covid today.......all it really did to me was give me a bit of a temperature, and turn my nose into a tap for 5 days (which is my usual response to a cold).

Fruitandnutcase profile image
Fruitandnutcase

Your story is heartbreaking and awful to read, I don’t know what to say to you other than I’m sending both you and K my very best wishes and the strength to keep going. Could the GP who came to the house help you?

nellie237 profile image
nellie237 in reply toFruitandnutcase

Thank you for the kind thoughts❤️. It was an out of hours 111 GP. I'd really like to be able to thank him, but I don't think it's possible.

Marymary7 profile image
Marymary7

Just heartbreaking. Shocking. I hope you can keep strong to support both of your needs. Wishing you both all the support possible.

nellie237 profile image
nellie237 in reply toMarymary7

Thank you Mary❤️

Shellian profile image
Shellian

What a truly horrendous experience for you both. I am so sorry to hear what you have both gone through. I have no advice for you , other than please remember to take care of yourself too. I'm hoping you have a strong support network at home but would also suggest contacting your local Carer's Association. They can offer support even if it's just someone to talk to. Sending you love and strength.

nellie237 profile image
nellie237 in reply toShellian

Thank you Shellian. I'm trying ❤️

1dolly profile image
1dolly

Poor K and poor you, what a catalogue of horrors. I would be putting several complaints in as the treatment or lack of is horrendous. Hope you are both feeling better soon.

nellie237 profile image
nellie237 in reply to1dolly

Thank you dolly.❤️ I should have added (in my OP). K was admitted on 22/07/23. She received an apology letter dated 25/07/23. A copy & paste job that only mentioned waiting time before treatment. Just made me angry.......and K doesn't want to read it.

Brightness14 profile image
Brightness14

Just to say what a nightmare for both you and your daughter. I hope that you get the help that you both require.

nellie237 profile image
nellie237 in reply toBrightness14

Thank you Brightness ❤️. Me too

Pebble23 profile image
Pebble23

HiSo sorry for your experience.

all discharges from hospital should be deemed 'safe' and equipment or support to facilitate this put in place prior to or on discharge.

If you feel this did not occur I would get straight on to the hospital PALS team.

As regards the pads you refer to they would likely be provided by District Nurses linked to your GP surgery.They will likely have strict criteria for dispensing.

If your daughter has residual issues with her mobility she will possibly require rehab from either hospital or community physio and/ or occupational therapy teams or short term input from a Reablement Team.

This could be following referral by hospital,GP or self (dependent on area).

Hoping you get the support you need.

nellie237 profile image
nellie237 in reply toPebble23

Thank you Pebble❤️. K will have physio at home.........I think it will start in a couple of weeks.

They did offer help in the form of a carer coming in mornings to help her wash herself, but I refused as I felt this was too intrusive, and so did K. A couple of years ago I was keeping an eye on a neighbour with Alzeimer's. I contacted Adult Services, and got him some care........it was a different person every day.........it wasn't nice.

Batty1 profile image
Batty1

I have no answers for you but wow you and your daughter have been through hell and back …. I hope she has a speedy recovery.

nellie237 profile image
nellie237 in reply toBatty1

Thank you Batty ❤️

Starmen profile image
Starmen

Hello NellieI am sorry to read of your problem accessing the correct support for your daughter.

The advice given on here should be helpful.. Also you can contact your local social services department for support and an assessment of your daughters needs and for you as a carer .

They can also advice with regard to adaptations you might need in the home and there are grants available for this. (I think it is the Disability Facilities Grant ?) There are also aids to help with everyday management . ( Adapted cutlery , cups , aids to help with washing and dressing)

nellie237 profile image
nellie237 in reply toStarmen

Thank you Starmen, I have contacted Adult Services for an assessment. I'm not going to hold my breath though.

A couple of years ago I was looking out for a neighbour with Alzeimer's. I didn't want to get involved in his finances, so I asked the Social Worker to apply for whatever disability benefit it is that you can get. The Social Worker & a Community Council Worker (can't remember her title) both replied quite categorically that he wouldn't get it. Neither of them turned up for the home assessment...but I did, and yes, he got the award.

Kowbie profile image
Kowbie

I’m so sorry for the both of you , what a nightmare, especially when your not feeling well that’s bad enough on it’s own , hope things improve for you both , I just don’t know whats happening with nhs . Anyway good luck to the both of you, and a big hug from me to you both

nellie237 profile image
nellie237 in reply toKowbie

Thank you Kowbie. ❤️

Kowbie profile image
Kowbie in reply tonellie237

Your welcome

SilverSavvy profile image
SilverSavvy

I have no words....literally too shocked to think. I wish you and K very speedy and complete recoveries and I'm sending you a big virtual hug. You have been magnificent.

nellie237 profile image
nellie237 in reply toSilverSavvy

Thank you SilverSavvy. ❤️

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