is this a proper diagnosis
- Thread starter pebbles
- Start date
Hi everyone - been back 24 hours and desparately need more advice and feedback.
Arrived at hospital Sat 26 May to a v. distressed mum (she thought I'd forgotten about her), she wouldn't let go of me and cried and begged me to take her with me. She is also mortified that they have put her in nappies and feels so degraded. It was tough. Sunday, mum's room stinks - commode not emptied and she's obviously got another urine infectionThey bring her food in and I have to point out the commode and the stench - I was gagging, how could they expect her to eat in conditions like this I took her for a short drive - no sooner had we set off than she wanted to go back. On Monday she seemed so fragile and frail and was no longer capable of doing anything for herself. She had great difficulty in staying awake. Tuesday, mum was unconcious. Staff putting everything down to medication.
Wednesday, mum still out of it but came round once to say that it wasn't anything they (hospital staff) were doing to her, that it was her time and to get the priest. I'm afraid I lost it then and kicked up a god almighty fuss about getting my mother moved to a medical ward, as they couldn;t even get fluids down her. Suddenly things did happen, 2 doctors appeared and nurses rushed to contact the priest. These doctors stood in front of me discussing my mother and taliking about internal bleeding but at no time spoke to me.
Within minutes a transfer to a medical ward was happening and I was told not to go anywhere as this was it, the end had come. I'm afraid I was hysterical and crying. Once on the ward, mum was given Vancomycin for the c diff, I was asked if I wanted her resussitated (shock, horror - how do you make a decision for someone else's life just like that) and then told that basically they were just going to keep her comfortable.
The priest came and went, I went for a walk and came back to hear my mother calling to dad. I asked her if he was there and she said yes, and then I jokingly said and I bet he's telling you to go back because it's not your time yet. She smiled and fell asleep. I made the decision to go home and try and get some rest. Managed a couple of hours - no call from hospital - so made my way back. Only to be faced with what everyone on the ward was calling a 'miracle' - mum up and about. She was kept on this ward until she passed 3 clear days and transferred back to the psychiatric (?) ward.
Monday 4 June mum is so frail and suffering, don't know what to do with all the emotions I'm feeling, just want to wave a magic wand and make it all better for her. Less than 24 hours and mum has c diff again. Once again she is shut off from everyone and feeling lonely and depressed. No obvious signs of barrier nursing that I'm aware. Another patient had an accident in the corridor outside mum's room and I prayed they would come with a mop and bucket and clean it up - instead they just wiped it up with a bit of tissue. Wednesday mum had a fall - wet floor. Thursday mum's room full of flithy tissues covered in god knows what everywhere, commode stinking, faeces all over and around top and sides of commode. Gag and walk out, call a nurse who agrees how bad it is!
Must go home for a rest today - not coping with all the emotional highs and lows. Can't even tell her (leave it to the staff) cowardly but so mentally exhausted can't tease her out of the tearfulness and fear she will exhibit when I mention it.
Friday - call from hospital, mum has had another fall, bruised cheekbone. They dont have any details of how it happened.
Today phoned to see how she is and am told mum has fallen again because she needed commode and didn't wait for them to get to her when they called out to her.
Please God what do I do. So far I;ve done an informal complaint through PALS, am I over reacting if i start a formal complaint to the Trust. Please advise, I no longer feel I can judge or feel. I want to stop the suffering. Please give me your opinions.
Love ellie
Arrived at hospital Sat 26 May to a v. distressed mum (she thought I'd forgotten about her), she wouldn't let go of me and cried and begged me to take her with me. She is also mortified that they have put her in nappies and feels so degraded. It was tough. Sunday, mum's room stinks - commode not emptied and she's obviously got another urine infectionThey bring her food in and I have to point out the commode and the stench - I was gagging, how could they expect her to eat in conditions like this I took her for a short drive - no sooner had we set off than she wanted to go back. On Monday she seemed so fragile and frail and was no longer capable of doing anything for herself. She had great difficulty in staying awake. Tuesday, mum was unconcious. Staff putting everything down to medication.
Wednesday, mum still out of it but came round once to say that it wasn't anything they (hospital staff) were doing to her, that it was her time and to get the priest. I'm afraid I lost it then and kicked up a god almighty fuss about getting my mother moved to a medical ward, as they couldn;t even get fluids down her. Suddenly things did happen, 2 doctors appeared and nurses rushed to contact the priest. These doctors stood in front of me discussing my mother and taliking about internal bleeding but at no time spoke to me.
Within minutes a transfer to a medical ward was happening and I was told not to go anywhere as this was it, the end had come. I'm afraid I was hysterical and crying. Once on the ward, mum was given Vancomycin for the c diff, I was asked if I wanted her resussitated (shock, horror - how do you make a decision for someone else's life just like that) and then told that basically they were just going to keep her comfortable.
The priest came and went, I went for a walk and came back to hear my mother calling to dad. I asked her if he was there and she said yes, and then I jokingly said and I bet he's telling you to go back because it's not your time yet. She smiled and fell asleep. I made the decision to go home and try and get some rest. Managed a couple of hours - no call from hospital - so made my way back. Only to be faced with what everyone on the ward was calling a 'miracle' - mum up and about. She was kept on this ward until she passed 3 clear days and transferred back to the psychiatric (?) ward.
Monday 4 June mum is so frail and suffering, don't know what to do with all the emotions I'm feeling, just want to wave a magic wand and make it all better for her. Less than 24 hours and mum has c diff again. Once again she is shut off from everyone and feeling lonely and depressed. No obvious signs of barrier nursing that I'm aware. Another patient had an accident in the corridor outside mum's room and I prayed they would come with a mop and bucket and clean it up - instead they just wiped it up with a bit of tissue. Wednesday mum had a fall - wet floor. Thursday mum's room full of flithy tissues covered in god knows what everywhere, commode stinking, faeces all over and around top and sides of commode. Gag and walk out, call a nurse who agrees how bad it is!
Must go home for a rest today - not coping with all the emotional highs and lows. Can't even tell her (leave it to the staff) cowardly but so mentally exhausted can't tease her out of the tearfulness and fear she will exhibit when I mention it.
Friday - call from hospital, mum has had another fall, bruised cheekbone. They dont have any details of how it happened.
Today phoned to see how she is and am told mum has fallen again because she needed commode and didn't wait for them to get to her when they called out to her.
Please God what do I do. So far I;ve done an informal complaint through PALS, am I over reacting if i start a formal complaint to the Trust. Please advise, I no longer feel I can judge or feel. I want to stop the suffering. Please give me your opinions.
Love ellie
Dear Ellie
Firts of all, a big hug. You sound as if you need it.
I can't believe your mum is being kept in such filthy conditions, when ther has been so much publicity and so many guidelines about infection control.
In your shoes I wouldn't hesitate to make a formal complaint. Sonething needs to be done about that ward.
On the positive side, your mum has fought off c.diff -- she must be one feisty lady. Let's hope she can beat it again. But it's unbelievable that having recovered from it once, she should be allowed to be re-infected.
I'm not surprised you're at the end of your tether. I hope that PALS are acting on your behalf while you're away? I would ring them on Monday just to check.
Good luck,
Love,
Firts of all, a big hug. You sound as if you need it.
I can't believe your mum is being kept in such filthy conditions, when ther has been so much publicity and so many guidelines about infection control.
In your shoes I wouldn't hesitate to make a formal complaint. Sonething needs to be done about that ward.
On the positive side, your mum has fought off c.diff -- she must be one feisty lady. Let's hope she can beat it again. But it's unbelievable that having recovered from it once, she should be allowed to be re-infected.
I'm not surprised you're at the end of your tether. I hope that PALS are acting on your behalf while you're away? I would ring them on Monday just to check.
Good luck,
Love,
Oh Ellie, dear me, this is dreadful.
I would definitely make a formal complaint, and if there is any possibility, I would try to get your mother moved elsewhere.
I realize this might be difficult because of the infection, but I would try.
This sounds like something out of the dark ages and shouldn`t happen to anyone.
Make sure you keep a log of times, dates and situations, for written evidence.
I only hope you have the strength to see this through, because it will have had such a devastating effect on you and you sound worn down yourself.
As well as a formal complaint to the Hospital Trust, your MP and the Secretary of State for health needs to know about this too.
I really feel for you.
Love xx
I would definitely make a formal complaint, and if there is any possibility, I would try to get your mother moved elsewhere.
I realize this might be difficult because of the infection, but I would try.
This sounds like something out of the dark ages and shouldn`t happen to anyone.
Make sure you keep a log of times, dates and situations, for written evidence.
I only hope you have the strength to see this through, because it will have had such a devastating effect on you and you sound worn down yourself.
As well as a formal complaint to the Hospital Trust, your MP and the Secretary of State for health needs to know about this too.
I really feel for you.
Love xx
Icas
Dear Ellie, I've only just caught up with this thread, and wanted to say how shocked I am to hear what has been ahppening in the hospital. I would agree with Sylvia and Hazel that you should go ahead with a formal complaint. If the PALS people are not around or fast enough, there is an independent service to help people through NHS complaints procedures called ICAS (Independent Complaints Advocacy Service) or failing either or both, just write a letter straight away to the Chief Executive of the Trust running the hospital, keeping a copy for yourself.
To find an ICAS near you, follow this link.
http://www.dh.gov.uk/en/Policyandgu...aintspolicy/NHScomplaintsprocedure/DH_4087428
Your mum MAY pull through all this, so don't despair. My elderly mum has also been through a few unpleasant infections and setbacks, but does keep going, bless her. Keep strong, if you can. Thinking of you, and sending kind regards, Deborah
Dear Ellie, I've only just caught up with this thread, and wanted to say how shocked I am to hear what has been ahppening in the hospital. I would agree with Sylvia and Hazel that you should go ahead with a formal complaint. If the PALS people are not around or fast enough, there is an independent service to help people through NHS complaints procedures called ICAS (Independent Complaints Advocacy Service) or failing either or both, just write a letter straight away to the Chief Executive of the Trust running the hospital, keeping a copy for yourself.
To find an ICAS near you, follow this link.
http://www.dh.gov.uk/en/Policyandgu...aintspolicy/NHScomplaintsprocedure/DH_4087428
Your mum MAY pull through all this, so don't despair. My elderly mum has also been through a few unpleasant infections and setbacks, but does keep going, bless her. Keep strong, if you can. Thinking of you, and sending kind regards, Deborah
Thanks for your replies.
I just feel so helpless because I'm so far away. I shouldn't have left her. Last week I wondered if I wasn't there woulld they have just let her go - not give her anything for the c diff. Now I feel guilty. I wish I'd not come home.
Tonight over the phone I've demanded that either they move her nearer the nurse's station so that they can keep a better eye on her or they make sure they go down the corridor at regular intervals, she hasn't even got a buzzer or anything to call for help.
There's so much bureaucracy and I don't think it will make much difference. I've been complaining regulalrly for 2/3 weeiks so far and nothing has changed. I asked if I couold bring her home to die, at least she'd have the comfort and security but they say she's too ill to be discharged. that's ironic when they're doing quite well to kill her off themselves.
I;ve just found out that she's got a black eye from one fall and a swollen hand from tonighgt's fall. The only thing she's done wrong is get old. Do you think I can demand they allow her home?
ellie x
I just feel so helpless because I'm so far away. I shouldn't have left her. Last week I wondered if I wasn't there woulld they have just let her go - not give her anything for the c diff. Now I feel guilty. I wish I'd not come home.
Tonight over the phone I've demanded that either they move her nearer the nurse's station so that they can keep a better eye on her or they make sure they go down the corridor at regular intervals, she hasn't even got a buzzer or anything to call for help.
There's so much bureaucracy and I don't think it will make much difference. I've been complaining regulalrly for 2/3 weeiks so far and nothing has changed. I asked if I couold bring her home to die, at least she'd have the comfort and security but they say she's too ill to be discharged. that's ironic when they're doing quite well to kill her off themselves.
I;ve just found out that she's got a black eye from one fall and a swollen hand from tonighgt's fall. The only thing she's done wrong is get old. Do you think I can demand they allow her home?
ellie x
Hi Ellie
to say this is not acceptable is the understatement of all time.
Well handled by you so far, but in your situation, I'd be escalating it.
Firstly to local MP
Next both to departing PM and incoming one.
Then I'd be printing out what you have written and posting it to the Daily Mail. The paper does have its uses. Perhaps write to all papers.
I'd do all three of those things simultaneously, possibly copying the letter to the Daily Mail with the politician's letters as well.
to say this is not acceptable is the understatement of all time.
Well handled by you so far, but in your situation, I'd be escalating it.
Firstly to local MP
Next both to departing PM and incoming one.
Then I'd be printing out what you have written and posting it to the Daily Mail. The paper does have its uses. Perhaps write to all papers.
I'd do all three of those things simultaneously, possibly copying the letter to the Daily Mail with the politician's letters as well.
Go Ellie!!!!
Don't feel guilty, channel that frustration into getting something done. Lots of good ideas here. Do it for your mum and for all the other mums who stand to suffer in a similar way if something is not done.
You're doing great, just keep it up.
Love,
Don't feel guilty, channel that frustration into getting something done. Lots of good ideas here. Do it for your mum and for all the other mums who stand to suffer in a similar way if something is not done.
You're doing great, just keep it up.
Love,
Firstly, thank you all for your continued support.
PALS are prepared to start formal complaint procedures for me - in fact the only reason I haven't done it yet is because I was coming home and not comfortable with leaving mum alone with the fear of retaliation on her from staff. Know it's extreme but I just didn't want to take that risk and after discussing it with PALS person, decided we would commence it next week on my return.
Yesterday, after expressing forthright views over the telephone to the ward staff, I was informed that the ward manager would call me today to discuss situ. I waited all day. Finally this evening I plucked up the courage to call the ward. Believe me my stomach was in my mouth in case something else had happened to mum. Fortunately no new incidents and a comment was made that they had been spending a lot of time with her today. So at least something got through. I then asked why the ward manager had not called me and was informed he had phoned and left a message on my answerphone. Well, I've been in all day and no-one's left a message.
I've asked for him to call me tomorrow.
Bruce - I'm going to start with the local MP, this is the last thing I need with the emotional rollercoaster of life at the moment. I'll keep you all updated with how I get on but to be honest, unless you've got contacts (which I haven't up north) I don't really hold out much hope. What I really want to do is stand atop Big Ben and scream it out at the top of my voice. Things have to change, surely.
ellie x
PALS are prepared to start formal complaint procedures for me - in fact the only reason I haven't done it yet is because I was coming home and not comfortable with leaving mum alone with the fear of retaliation on her from staff. Know it's extreme but I just didn't want to take that risk and after discussing it with PALS person, decided we would commence it next week on my return.
Yesterday, after expressing forthright views over the telephone to the ward staff, I was informed that the ward manager would call me today to discuss situ. I waited all day. Finally this evening I plucked up the courage to call the ward. Believe me my stomach was in my mouth in case something else had happened to mum. Fortunately no new incidents and a comment was made that they had been spending a lot of time with her today. So at least something got through. I then asked why the ward manager had not called me and was informed he had phoned and left a message on my answerphone. Well, I've been in all day and no-one's left a message.
I've asked for him to call me tomorrow.
Bruce - I'm going to start with the local MP, this is the last thing I need with the emotional rollercoaster of life at the moment. I'll keep you all updated with how I get on but to be honest, unless you've got contacts (which I haven't up north) I don't really hold out much hope. What I really want to do is stand atop Big Ben and scream it out at the top of my voice. Things have to change, surely.
ellie x
Well done Ellie, it sounds as if you are making a start. At least people are becoming aware of your presence. Don`t be intimidated by anyone, your mother has been treated disgracefully. I wish we could all form a body of virtual support and accompany you.
Love xx
Love xx
Ellie I'm absolutely appalled by your saga. The only thing I have to add to all the good advice you've had is: take a camera next time, on the basis that a picture's worth a thousand words.
Take care
Jennifer
Take care
Jennifer
publicity
What a terrible time you and your mum are having. It is shocking to read what has been happening. Take as many pictures as you can and log everything (write down from the beginning what has been happening) This will not only give you a written record but also help to clarify your thoughts about what you have witnessed and suffered.
Get in touch wth the newsdesk of your regional ITV company and your regional BBC televsion. I am quite sure they will feature your case on their local news. My son is a TV journalist for the ITV Boarders region and I'm sure would pick up a case like this. What about letting your local newspaper have details of what has been going on.
Tell the ward sister you are going to the press about the conditions which you have witnessed your mum suffering. SHOUT about this, and SHOUT LOUDLY. Demand to see a senior hospital manager.
No amount of publicity can take away what a horrendous time you have been through but at least you are doing your best to try to stop this ever happening again.
My heart goes out to you. Please do keep us updated aboutg your poor mother.
xxTinaT
What a terrible time you and your mum are having. It is shocking to read what has been happening. Take as many pictures as you can and log everything (write down from the beginning what has been happening) This will not only give you a written record but also help to clarify your thoughts about what you have witnessed and suffered.
Get in touch wth the newsdesk of your regional ITV company and your regional BBC televsion. I am quite sure they will feature your case on their local news. My son is a TV journalist for the ITV Boarders region and I'm sure would pick up a case like this. What about letting your local newspaper have details of what has been going on.
Tell the ward sister you are going to the press about the conditions which you have witnessed your mum suffering. SHOUT about this, and SHOUT LOUDLY. Demand to see a senior hospital manager.
No amount of publicity can take away what a horrendous time you have been through but at least you are doing your best to try to stop this ever happening again.
My heart goes out to you. Please do keep us updated aboutg your poor mother.
xxTinaT
Hi everyone
Just returned from a few days with mum and things have definitely changed. She's been moved to a much better room directly adjacent to nurse's station (however they still seem able to ignore her most of the time). Everyone is v. wary of me now and the first day they made a big thing about me having to gown and glove up for hygiene sake!! I managed not to laugh in their faces, and was happy to oblige as this is what they should have been doing from the beginning. Still do not see anyone wash their hands as they pass from one patient to the next.
Although mum was sitting up and eating well, she really wasn't herself - nothing I could put my finger on. Today I discovered what it was - mum has c-diff again (4th time).
Hospital has taken the decision that as they cannot break the cycle of urine infection and c-diff, all life saving medication has been stopped and I am bringing mum home to die. She will not be moved to a medical ward, get no more fluids and only the c-diff anti-biotic will remain. Whilst the arrangements are being made, the ward staff now have to provide a high level of care for mum and I couoldn't keep my mouth shut. I just had to express my concerns that they were not up to it and told the consultant everything that had been going on by way of explanation. She was not aware of most of it and insisted she would ensure they would be up to it. She also told me to go ahead and make the complaint formal, as she felt going through the modern matron informally (via PALS) would be insufficient to make much difference. Apparently they've never had a case like mum's before and have never had to provide palliative care.
I really do want to do everything I can re bringing attention to the situ but I'm in a bit of a state of shock and it really hasn't sunk in yet that mum could go real soon because of her heart condition and now they've removed all heart medication, I think heart faiolure willl probably be the undoing of her.
I know it's probably for the best and I certainly do not want her to suffer needlessly but selfishly if someone said they could keep her alive in the hope of a few more months with her, I know I'd jump at it. It's all so ....I don't know how to put it in to words, my heads just a mess. Sorry everyone, know you've all got your own problems.
love ellie
Just returned from a few days with mum and things have definitely changed. She's been moved to a much better room directly adjacent to nurse's station (however they still seem able to ignore her most of the time). Everyone is v. wary of me now and the first day they made a big thing about me having to gown and glove up for hygiene sake!! I managed not to laugh in their faces, and was happy to oblige as this is what they should have been doing from the beginning. Still do not see anyone wash their hands as they pass from one patient to the next.
Although mum was sitting up and eating well, she really wasn't herself - nothing I could put my finger on. Today I discovered what it was - mum has c-diff again (4th time).
Hospital has taken the decision that as they cannot break the cycle of urine infection and c-diff, all life saving medication has been stopped and I am bringing mum home to die. She will not be moved to a medical ward, get no more fluids and only the c-diff anti-biotic will remain. Whilst the arrangements are being made, the ward staff now have to provide a high level of care for mum and I couoldn't keep my mouth shut. I just had to express my concerns that they were not up to it and told the consultant everything that had been going on by way of explanation. She was not aware of most of it and insisted she would ensure they would be up to it. She also told me to go ahead and make the complaint formal, as she felt going through the modern matron informally (via PALS) would be insufficient to make much difference. Apparently they've never had a case like mum's before and have never had to provide palliative care.
I really do want to do everything I can re bringing attention to the situ but I'm in a bit of a state of shock and it really hasn't sunk in yet that mum could go real soon because of her heart condition and now they've removed all heart medication, I think heart faiolure willl probably be the undoing of her.
I know it's probably for the best and I certainly do not want her to suffer needlessly but selfishly if someone said they could keep her alive in the hope of a few more months with her, I know I'd jump at it. It's all so ....I don't know how to put it in to words, my heads just a mess. Sorry everyone, know you've all got your own problems.
love ellie
Dear Ellie, I`m so sorry it`s ending this way. Your poor mum has had to go through so much, and you`ve gone through it with her.
I`m not surprised the consultant was one of the first to pass the buck. No-one will take responsibility. How someone with that level of expertise and training can profess to be unaware of poor hygeine, I`ll never know.
I do wish things could be better for you.
Love xx
I`m not surprised the consultant was one of the first to pass the buck. No-one will take responsibility. How someone with that level of expertise and training can profess to be unaware of poor hygeine, I`ll never know.
I do wish things could be better for you.
Love xx
Dear Ellie
No wonder you're head's 'in a mess'!
I feel so sorry for you, having to watch your mum suffer all this time. I can understand your wanting to bring her home to die, but are you going to be able to cope with it? Will they set up a suitable care package for you?
I can't believe what you have gone through, you should certainly be making a formal complaint about the ward, but I expect that's the last thing you want to be thinking about just now.
My thoughts and prayers are with you and your mum, Ellie. Take care,
Love,
No wonder you're head's 'in a mess'!
I feel so sorry for you, having to watch your mum suffer all this time. I can understand your wanting to bring her home to die, but are you going to be able to cope with it? Will they set up a suitable care package for you?
I can't believe what you have gone through, you should certainly be making a formal complaint about the ward, but I expect that's the last thing you want to be thinking about just now.
My thoughts and prayers are with you and your mum, Ellie. Take care,
Love,
Thanks Hazel, Sylvia.
Yes Hazel - that's why I;ve come home to sort a few things out before she comes home and to give them a chance to sort out the care arrangements. I've already told them not to just discharge her and leave the pair of us to it because she is barely conscious and can do nothing for herself and I struggle to lift her when she's like that - it's as if she becomes a 'dead' weight. And of course, with the c-diff, she becomes totally incontinent.
But overall, it will be a happier situ than being anonymous in the hospital.
ellie x
Yes Hazel - that's why I;ve come home to sort a few things out before she comes home and to give them a chance to sort out the care arrangements. I've already told them not to just discharge her and leave the pair of us to it because she is barely conscious and can do nothing for herself and I struggle to lift her when she's like that - it's as if she becomes a 'dead' weight. And of course, with the c-diff, she becomes totally incontinent.
But overall, it will be a happier situ than being anonymous in the hospital.
ellie x
Dear Ellie,
Such a difficult time for you both, but I just wanted to say I really admire you for taking her home. It's obvious that the hospital (well this hospital) is no place for your mother, and even with the much increased care you're going to have to give, I'm certain your mother would be happier with you than in any other situation. I know if I was in your mum's place I'd much rather have even a week with my loved ones around me than several months in limbo at that hospital. Since they are removing all medication with the expectation that she will not survive, is there any in-home hospice care you could take advantage of? After all that service is for the terminally ill, and this seems to be your mother's situation.
Love
Jennifer
Such a difficult time for you both, but I just wanted to say I really admire you for taking her home. It's obvious that the hospital (well this hospital) is no place for your mother, and even with the much increased care you're going to have to give, I'm certain your mother would be happier with you than in any other situation. I know if I was in your mum's place I'd much rather have even a week with my loved ones around me than several months in limbo at that hospital. Since they are removing all medication with the expectation that she will not survive, is there any in-home hospice care you could take advantage of? After all that service is for the terminally ill, and this seems to be your mother's situation.
Love
Jennifer
Hi Ellie,
Thinking of you, my mum in law had c.diff she spent 17 weeks in isolation, we thought we were going to lose her, she had c. diff three times. it is a nightmare situation.
Thinking of you and your mum at this very unhappy time.
Love Carolx
Thinking of you, my mum in law had c.diff she spent 17 weeks in isolation, we thought we were going to lose her, she had c. diff three times. it is a nightmare situation.
Thinking of you and your mum at this very unhappy time.
Love Carolx
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