hi all, I haven’t been writing on here for some time. On 6/7/23 I fell out of my disability stair lift from the top of our steep stairs at home! I flipped over, landed on my back and fell down the stairs and landed on the hallway floor on my head. I knocked myself out, fractured my skull, had a brain bleed, damaged my kidneys, ribs and bowel! My husband came in response to it and felt for a pulse but couldn’t find one. Because I am on Prednisolone and have been for over 3 years my neck and face have thickened and he just couldn’t find the pulse. He rang 999 and told them there was no pulse. They took 2 hours to arrive. My husband dragged me into the dining room getting ready to do cpr but my eyes flickered so he knew I was alive, although I went unconscious again. I don’t remember anything about that day even before the fall. I had amnesia afterwards and it took 20 days for me to have any meaningful conversation and about 30 days before I ate anything. I spent 6 weeks in hospital where my treatment on occassions by some of the the staff was disgraceful to say the least. I could not walk and nobody would believe to what extent. I was in for 6 weeks. Apparently the doctors told my husband that the Lupus had affected all the injuries. I was told I could come home if I accepted physio attendance to the house to help me walk, I agreed. I came home barely able to walk and using a zimmer. I came out mid August and I still have not had any physio from the NHS. I have slowly taught myself to walk but have had many falls. No contact from the hospital since. Because of some particularly bad experience I felt I had to contact the PALS section to complain - no word since! One thing I found out was that when you are older you lose all your rights and dignity. I was put in a ward with the elderly. I am 67 and the nearest in age to me was 15 years older. These other ladies were very compliant with the nurses. I wasn’t. I don’t see why I can’t be given a bedpan because I can’t walk to the toilet or get on a commode just because the nurse doesn’t like it. I’m struggling with trying to reduce the Prednisolone again but am getting there. The one thing I have learnt is that I never ever want to go into hospital again! Sorry to be so down but I’m just updating the people who remember me. One plus side - I lost a stone in weight! Lol!
Nasty fall and Lupus: hi all, I haven’t been... - LUPUS UK
Nasty fall and Lupus
Bless you. I remember you telling me about your fall. It was horrific for you and the care you received was not good enough. Who did you make the complain’t to? The Hospital or the Health Board? I made a comp,ain’t to my Health Board after 12 1/2 hours in A&E where there were Peopke crying, vomiting, bleeding, flies everywhere dive bombing us, nit enough seats, so hot and airless you felt as though you were inhaling vomit and stench. 169 of us and two toilets. Once seen the medical staff were exemplary but I came out and cried for those poor people I left still waiting in pain. I told them it is not good enough on any level. They rang me yesterday and said they agreed with me, plans and recommendations are being made. We will see but I felt relieved that I had gone forward with it.
Your case is so horrendous if you do not get any response contact your MP and get them to take the matter up. Or you could make a comp,ain’t to the Public Services Ombudsman.
Well done for continuing to reduce the steroids. It is not easy I know from experience.
Please take care of yourself and maybe get an Occupational Therapist to assess how best you can ensure your safety on that stair lift, Lots of love xxx
I reported it to the Patient liaison team for consideration before I make a formal complaint. My rheumatologist says I suffered ptsd after one encounter. I came home unable to sleep properly and when I did I had nightmares and woke up crying. I still hate going to bed and don’t sleep well. It’s awful and I don’t think I’ll ever get over it.
Hi Bowenlady I’m so sorry to read about your awful fall , disgusting that the ambulance came 2 hrs later but thank goodness you survived , sorry to hear about your time in hospital , as my mum says “ the NHS has gone to s**t
You will get over it although it will take some time - I had a burglar brake into my house , I was on my own with my 3 small boys, it was at night when we were in bed , I called police who stayed on the line with me , I heard the man come up my stairs and opened my sons bedroom , the police then came luckily but anyway I couldn’t sleep for about a year and like you had horrible dreams but I did get over it and so will you.
Sending big gentle hugs to you 🤗💕
Hello Bowenlady, it was heartbreaking reading what you have been through, sending lots of positive thoughts for your recovery. 💜💜 🥰
Oh goodness. I was thinking I need a bungalow soon but people say what about a stair lift. You have proved they have their issues and not the magic answer. I am glad you're on the mend but why is it we often have such awful experiences in hospital. Too few hospitals with too few staff. I hope you continue to improve but it's going to take time I guess. Xx
what a dreadful few months you’ve had! Anyone would have ptsd after the trauma you’ve been through, I would say get some counselling but even that takes a month of Sundays to get. I’m glad you are trying to get yourself walking again, do be careful though.
My experience of physio (self referral) first appointment lasts an hr. Go through your history, give you exercises to do at home, 4 weeks later a phone call to see how you’re getting on. Still a few problem? Self refer again…..rheumatologist referred me for hand therapy same thing happened, except she made a sling when calling to see how I was getting on, I said it wasn’t really helping she got stroppy and said the only thing she could do was send me to musculoskeletal for steroid injection.
I hope you continue to get better and that you get the help that you should be already getting! Take care, best wishes 🙂
I’m so sorry to read about your experiences but sadly I’m not surprised. I had my eyes opened about care of the ‘elderly’ ( anyone over 50!) more than twenty years ago when my mother in law needed hospital treatment. Her ‘fault’ was she was deaf and no one in the nhs from doctors down had any idea how to communicate with her! It’s very sad to read that rather than getting better things are now much worse. Your accident was traumatic enough without the following ‘care’. I’m glad to hear you took things into your own hands regarding physio and rehabilitation - it seems to be the only way. Treatment by Google. My husband had a knee replacement in February and is still awaiting the physio’s call. You have made enormous strides and you will get better. We’re all rooting for you!
Thank you! The worse bit now is that if I ring up for some advice nobody will listen to the story of what has happened to me so they just listen to sound bites and go off in the wrong direction. When I was in hospital they raised my prednisolone from 8mg to 20 the after 10 days down to 15mg. I warned the doctor and nurses that I am resistant to reducing the dose and my feet and legs swell up. “No they won’t!” Was the reply. 5 days after the reduction my feet and legs were badly swollen! I showed two nurses and a doctor and they all said they were not swollen! I’m not very good at attaching photos but let’s see what you think. One pic will be my normal feet
It looks very swollen to me. I agree no one listens to us. I’ve just had a protracted argument with two surgeons who didn’t believe a word I said as they claimed the reaction I was telling them about was very rare! Eventually one of them grudgingly accepted I might have a point. I think the problem is one specialist doesn’t speak to another department. And if you’re female and over 70 you don’t stand a chance. I’m sorry you’re going through all this. Have you got a lupus nurse at your main hospital? The one in Edinburgh is great.
Yes we do but you have to phone up and leave a message and they say they will get back to you in 48 hours. Then sometimes the message says they are only able to respond to people on “flare up”. I’ve waited weeks before now for a reply to an urgent enquiry. They are also often quite dismissive of your concerns. At one time I had to phone the consultants secretary to get me a prescription out as the nurses hadn’t sent it after 3 weeks and I only had 1 or 2 tablets left. Winds me up! X
That sounds a dreadful experience . I hope that little by little you begin to feel things are easier for you both in body and spirit. x
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