My husband has been in hospital since 20/1/18 following a ruptured aneurysm and subsequent haemorrhage. He has been making good progress but the hospital have since decided that he no longer needs special care and have transferred him to (what they say) is our local hospital and onto a standard ward until a bed at the rehab centre becomes available. This ward is totally wrong for him, when I arrived yesterday they had left his tray of food in front of him which was then cold (they had no idea he could not feed himself) and he was wandering around the ward which is just so dangerous. They are not capable of looking after him and ring me whenever he becomes agitated as they just cant cope with his behaviour.
I have tried to contact the original hospital but they say he no longer needs specialist care and that we just have to wait for a place at rehabilitation.
I feel so let down and just feel that he has been palmed off and dont really know where to turn. He desperately needs to get started with rehabilitation as he can not carry out any daily tasks himself.
It is really just one nightmare after another and noone is really listening to me.
Any advice would be much appreciated.
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treetate
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I spent 6 weeks on the TBI intensive care ward before being transferred to my local general and my experience was very bad, I found the nurses had no idea about a TBI and possible symptoms.
After 3 weeks on the general ward I was discharged with no follow up at all but it was a God send to get out of there!
I recommend you seek help and support from the PALS service, info here:
Sealiphones advice is sound. I had to be kept on a genersl ward during a he whole of my hospital stay as there were no beds available on neuro ward and they kept me there until i could be transferred to the rehab unit.
My care was adequate but there were times when i had to wait for my food until someone could feed me or a visitor arrived for me! I could not walk so i could be kept track of at all times!!!!
There are very limited numbers of rehab beds and you have to wait and hope you reach the top of the list before someone else with more pressing needs turns up. Where I eventually went there were only 18 beds and the average stay was 12-15 weeks. Unfortunately this means that some patients even have to return home for a while before entering rehab.
I cant advise you Im afraid except to say that this is not personal it is just how it is in the nhs, they really do do the best they can with their resources but it is a postcode lottery.
behaviour wise is something youre going to have to learn to live with.
your doctor will offer your husband anti depressants, because according to their book all people who ve had an abi or tbi are depressed thats rubbish. my gp offered me epilim or carbamazapine, i chose the former and whacked on 9 stone, im currently being weened off it and onto carbamazapine..........it works, i do blow now and again though.
a few of my other problems while we re talking about them, noise intollerance, dislike of strangers, inappropriate behaviour, epilepsy and adult adhd.
keep your friends and family close and away from your husband or youll soon find yourself on your own, they wont understand his behaviour and will prefer to keep away from the pair of you.
i think its more than likely your husband will be dicharged, having said that, have a word with the hospital social worker, so that if he is discharged there is a care package in place when he comes out.
Hi Steve, I really don’t think he is ready to come home. He is very confused still and doesn’t know who we really are and I think he’s still in the PTA stage! That’s why I can’t believe they have moved him so soon. I know that beds are an issue and I know that his behaviour will be different but he really does still need care. Having said that if they felt he would do better at home then I will definitely have to cope! Thanks for yuyr response. Teresa x
teresa take pictures of your wedding day and holidays and other happy things youve done together, i forgot to mention my short term memory is bad, so this might help him to remember your name, his favourite aftershave, anything that gets him remembering.
oh i forgot to welcome you to our family and say anytime you want to shout rage grrrrrrrrrrrr, just come here, because we ve know what our supporters put up with.
Hi Steve, I have made a photo book of all of his favourite things - dogs, holidays, wedding pics, family and friends etc. I go through it every day but he can’t put names to anyone yet and gets frustrated!!! X
Could you ask the new hospital to request a transfer back to the original one? Even though you've already made the request, they may be more likely to listen if it comes from someone "professionally involved". Patients and their families are at the absolute bottom of the NHS food chain.
Hiya, they are not interested one bit. Even the new hospital have tried but there are no beds! We are just hoping that a rehab bed comes up soon as he badly needs it now x
Hello, how hard for you both. Talk with the staff looking after him that he needs help with food and fluids. They should put him on their red tray list, that will indicate he needs help. As regards rehabilitation I am guessing that while you are waiting noone is talking to you about who is available or what the plan is. You could ask to speak with the ward manager about your frustrations, or the staff looking after him. Added to this talk with PALS who should have an office in your hospital or have a phone number
One of the problems of rehabilitation is that there is a waiting list. You can ask if the referral is complete is is he on a waiting list for neuro rehab. I wonder if where he is going have outreach nurses/staff who could see your husband. This is worthy of an ask too. And see if a social worker has been requested. I hope he is having OT and physio. OT can been a good source of all this if he has a good OT. Your local Headway can help too with all this. See how you go xxx
Sorry you are going through this Treetate. But unfortunately I don't think this is an unusual scenario with our cash-strapped NHS of today. Last time I needed an operation for my BI (2007) I noticed a significant drop in standards from my previous operations. For a start I had to be admitted to my local hospital before a bed became available at a neurological hospital. It was just awful and I couldn't wait for a bed to become free to get out of there. Nobody seemed to understand what I was going through or treat me at all except with painkillers. I might as well have been at home.
You must ho to PALS. have you spoken to his consultant about lack of rigjt cate and understanding. ring the rehab place and find out the situation. Can they not at least get him physio at the hospital. Make a nuisance if yourself. I rang my local MP when my husband was on the heart ward (high dependancy ) and they put someone in the room next to him as isolation for potentially having the sick bug - needless to say they soon moved him!
Unfortunally this is not a one off occurrence. After my BI I was put on a ward with elderly who were all confused and not aware of things needing constant care so I was pretty much alone. Luckily for me tho I only needed help with walking so knew it was only matter of time before I got discharged and got back to normal. You should try to get a doctor or someone who has dealt with your husband to recommend him being moved to somewhere he can get the care he needs.
I suffered a Brain Haemoraghe 16 years ago & have recently had a Aneurysm Clipped. After my bleed I was offered some basic help THREE YEARS after the bleed. I was so very lucky to have had a really good supportive family as I've no idea of how I would have made any progress whatsoever without them. I spent 6 weeks in hospital & was discharged with a bag full of drugs & my family were to,d any problems just ring the brain ward!! As you will already know the staff on those wards just don't have time to give out proper detailed help they are rushed off their feet with just the general day to day things going on. I do think PALS & Headway are your best options & one Omega 3 capsule may help a hell of a lot. They help the electricity flow around the brain to be much more free flowing. I came on leaps & bounds once I started taking them with the big memory issues I was left with. They sure as hell worked better for me with Memory than all the Meds on Prescription. They are only mainly Fish Oil so they shouldn't have any effect on any other Meds. The frustration is the reason I got a little angry from time to time. In my own case it was MASSIVE!!
Just an update on my situation. Things have got much worse and the hospital have put a 1:1 guard on him 24 hours a day. He feels intimidated by him/then and has started to get quite aggressive!! He has bruises on his arms where they try to restrain him (he is skin and bone and bruises easily) but is this really necessary?? Why can’t he just have a nurse who is caring not some brute like a prison officer demanding him to get in/out of bed!! The ward also doesn’t seem to understand that although he can feed himself, he doesn’t understand the concept of eating yet and the issue is he doesn’t eat!! I am at my wits end and I’ve got his family on at me all the time as if it’s all my fault - not coping well with all this
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being discharged from rehabilitation after TBI
Food in hospital
