So, as regular readers may know, my father has been in hospital for nine (ten?) weeks now having been admitted with pneumonia. Having survived that and two subsequent chest infections, he has now been stable and germ free for three weeks (apart from a UTI because of the catheter). He is going to be fitted with a PEG on Friday – I know there is divided opinion on here about that but we are beyond grateful for whatever further time it gives us, and, realistically, it was the only option as there is a GMC ruling that if death is not foreseeable in hours or days then there is a duty to provide nourishment. He can’t stay on an NG tube in hospital and can’t be released with one, and the alternative would have been to send him home to ‘feed at risk’ and if he couldn’t swallow enough to keep himself alive, then he would have just starved to death in front of us, never mind that every spoonful I gave him could have been aspirated and become pneumonia again and how many more times would they treat that before they said enough was enough, and I would always carry the guilt of having killed him so we are so, so relieved and grateful for the PEG, and for him never to have to go through the terrible, terrible distress I saw him in yesterday as they tried to get another NG tube into him. He was almost crying with the stress – they want me to stay outside the curtain because it upsets me so much but I *know* that it is better for him when I’m there and when I told him to swallow, he did, and down it went so I’ll manage to control my emotions as I always do in front on him, and put up with the blinding headache afterwards if I can be of some (any) comfort to him.
The reason for the PEG was that Daddy had an MRI which showed a small bleed. This was seven weeks after admission – shouldn’t it have been done earlier? – and I think it was ONLY done to ensure they had ticked every box and there would be no comeback on them for not being seen to do everything. Anyway, suddenly – and they had no shame about it at all – everything changed. The we-can’t-do-anything-to-help suddenly became ‘all things are possible, and we can consider him for a PEG’. So let me get this straight:- he has dementia, something in his head that he can’t help and hasn’t contributed towards and they won’t do anything for him, not even an expectorant let alone physiotherapy, and now he has a small bleed in his brain, something in his head that he can’t help and hasn’t contributed towards but that changes everything. I *KNEW* it was a two tier system for dementia patients, knew it!
So, to the title issue – in the heat of the moment, and really, really stupidly, I said I was going to be making a formal complaint about my father’s initial treatment which has had such terrible consequences that I doubt he will walk again from being perfectly mobile before his admission. His ‘doctor’s eyes only’ medical notes showed that someone, who obviously knew nothing at all about dementia, had written "end stage dementia" on his notes - he is early stage six which has a span of approx. two and a half years, followed by stage seven which can be five to seven years so he is not end stage by any means, and underneath his consultant had written 'patient's daughter reports he was walking and talking before fall that led to admission - this will need to be verified'! He was a heart specialist so he knew nothing about dementia either and being that older breed of arrogant doctor, didn't ask anyone, let alone me, whether that assessment was right or, as it turned out, very wrong indeed. If I had been asked or known this had been written earlier, I could have brought in the carers daily reports or something from a back assessment I'd had done on the day he fell where he needed the loo when the assessor was there so I showed her how I move Daddy and he walked the 82 feet to the loo and back and she'd talked to him, but I didn't see it until the neglectful damage to him had been done, hence the need for the complaint – to ensure that Daddy now gets all the help he needs and that this doesn’t happen to other people but it has set off a very unpleasant procedure where there is now a campaign to blacken me by the hospital, with staff actually lying about me, and to Social Services of all people – how on earth do I fight this?
One seemingly innocuous thing; I made a friend at the hospital - father in the same ward as Daddy, she more rabid about her father's care than me (never met one of those!), even turning up for doctors’ rounds at 8.00 a.m., and I would pop in and see him, get his fizzy water from the fridge for him, encourage him to wiggle his toes, text her to say how he was and what he'd eaten (he is diabetic so it's even more important than usual) when she was working or ill etc. Anyway, he is now on a different ward and visiting is restricted to family only so I just get text updates which is fine but then a couple of days went by without an answer from her and I assumed the worst, as you do – I certainly have enough e-mails in the same vein from friends if I haven’t answered in a couple of days. Not wanting to ask her again if things were not going well, I went to the ward and asked the nurse looking after him how he was. I didn't go near him, I was at the nurses’ station, and she asked me who I was and I told her my name and that I was a friend of the daughter's, and then I was told he was fine and that was that. Later in the afternoon, I had to see Matron later and told off like some naughty schoolchild for visiting him. I explained that I hadn't been to visit him; I'd just asked how he was and explained why. The next text from the daughter was that I had passed myself off as a relative to get the information. I was so upset - I really don't need **** like that going on and I hadn't done it in the first place. If I had said I was a relative then the nurse would have said I could go in to the bay and visit, and wouldn't it be entirely illogical for a relative to go all the way to a hospital to ask about someone and then not visit them - we have phones after all - so none of it was logical, and none of it was anything the daughter could possibly think I would do but she did. I was just so upset. The road to hell ...
But then it seemed too much like the other ‘issue’ Matron wanted to tell me off about. Daddy has had a note above his bed saying NBM (Nil By Mouth) for ages, it also has on it ‘Pt’s daughter to feed. PD, Grade II TF (puree diet, grade II thickened fluids’ – okay so somewhat misleading to have both but at the big multi-disciplinary meeting about Daddy a couple of weeks ago (12 of ‘them’ and me, my Mum and the PALS lady so no attempt to intimidate us there then!), it was agreed that he could be fed by me, when the time was right i.e. at the end of the rest period, before being fed through his NG tube, and if he wasn’t sleepy, which I was doing but only every other day to see if anything went wrong, and only fourteen teaspoons max. which proves he does still have a bit of a swallow but not enough, and not safe either and too scary to really leave to being his only way of eating so … Matron informed me that there has been a safeguarding complaint made against me to Social Services about my feeding him when he was NBM. He has only been totally NBM since Wednesday when he had a bit of a temperature and they were worried another infection was starting – he was constipated – but before that he was allowed to eat if he could but everyone medical is privy to this information so it’s been done for spite, as the knowledge is there, or I could have been asked but no, straight to Social Services who only have to take that seriously and he could be taken away from us. Who would be so despicable, and of course, they won’t tell me, it’s all done in secret; Social Services haven’t even contacted me to ask me anything.
So then you can see how I think this is all part of a much bigger picture, and then paranoia sets in such as, there is often medicine left by his bed and little room so I am always tidying so I returned some pills that were left by his bedside and should have been locked up, so my fingerprints will be on the box. What if they say that some are missing and that I must have given them to him? And from there, that I’m a danger to him and he shouldn’t come home to us?
Okay, so I am beyond tired but I am now really scared too. His notes now have a huge sheet stuck on the front saying that they are not to be left unattended and have to be locked in the ward pharmacy or the doctors’ office – why? – what do they have to hide? And the same Matron who wrote that note also warned me off making a complaint, again, why do that unless they have something to hide?
I’m going to send a modified version of this to PALS and say that I won’t pursue a complaint against the hospital and the initial consultant if they leave me alone. It’s not true but if it stops them pursuing me until after the operation and we have got Daddy back home, that will be okay.
Oh and re. the UTI - I reported the smelly wee on Thursday at 6.00 p.m. - he finally got antibiotics yesterday, three whole days when you are actually in hospital - you couldn't make it up. How does anyone, who hasn't got family fighting for them, get out of there alive?
The reason for the PEG was that Daddy had an MRI which showed a small bleed. This was seven weeks after admission – shouldn’t it have been done earlier? – and I think it was ONLY done to ensure they had ticked every box and there would be no comeback on them for not being seen to do everything. Anyway, suddenly – and they had no shame about it at all – everything changed. The we-can’t-do-anything-to-help suddenly became ‘all things are possible, and we can consider him for a PEG’. So let me get this straight:- he has dementia, something in his head that he can’t help and hasn’t contributed towards and they won’t do anything for him, not even an expectorant let alone physiotherapy, and now he has a small bleed in his brain, something in his head that he can’t help and hasn’t contributed towards but that changes everything. I *KNEW* it was a two tier system for dementia patients, knew it!
So, to the title issue – in the heat of the moment, and really, really stupidly, I said I was going to be making a formal complaint about my father’s initial treatment which has had such terrible consequences that I doubt he will walk again from being perfectly mobile before his admission. His ‘doctor’s eyes only’ medical notes showed that someone, who obviously knew nothing at all about dementia, had written "end stage dementia" on his notes - he is early stage six which has a span of approx. two and a half years, followed by stage seven which can be five to seven years so he is not end stage by any means, and underneath his consultant had written 'patient's daughter reports he was walking and talking before fall that led to admission - this will need to be verified'! He was a heart specialist so he knew nothing about dementia either and being that older breed of arrogant doctor, didn't ask anyone, let alone me, whether that assessment was right or, as it turned out, very wrong indeed. If I had been asked or known this had been written earlier, I could have brought in the carers daily reports or something from a back assessment I'd had done on the day he fell where he needed the loo when the assessor was there so I showed her how I move Daddy and he walked the 82 feet to the loo and back and she'd talked to him, but I didn't see it until the neglectful damage to him had been done, hence the need for the complaint – to ensure that Daddy now gets all the help he needs and that this doesn’t happen to other people but it has set off a very unpleasant procedure where there is now a campaign to blacken me by the hospital, with staff actually lying about me, and to Social Services of all people – how on earth do I fight this?
One seemingly innocuous thing; I made a friend at the hospital - father in the same ward as Daddy, she more rabid about her father's care than me (never met one of those!), even turning up for doctors’ rounds at 8.00 a.m., and I would pop in and see him, get his fizzy water from the fridge for him, encourage him to wiggle his toes, text her to say how he was and what he'd eaten (he is diabetic so it's even more important than usual) when she was working or ill etc. Anyway, he is now on a different ward and visiting is restricted to family only so I just get text updates which is fine but then a couple of days went by without an answer from her and I assumed the worst, as you do – I certainly have enough e-mails in the same vein from friends if I haven’t answered in a couple of days. Not wanting to ask her again if things were not going well, I went to the ward and asked the nurse looking after him how he was. I didn't go near him, I was at the nurses’ station, and she asked me who I was and I told her my name and that I was a friend of the daughter's, and then I was told he was fine and that was that. Later in the afternoon, I had to see Matron later and told off like some naughty schoolchild for visiting him. I explained that I hadn't been to visit him; I'd just asked how he was and explained why. The next text from the daughter was that I had passed myself off as a relative to get the information. I was so upset - I really don't need **** like that going on and I hadn't done it in the first place. If I had said I was a relative then the nurse would have said I could go in to the bay and visit, and wouldn't it be entirely illogical for a relative to go all the way to a hospital to ask about someone and then not visit them - we have phones after all - so none of it was logical, and none of it was anything the daughter could possibly think I would do but she did. I was just so upset. The road to hell ...
But then it seemed too much like the other ‘issue’ Matron wanted to tell me off about. Daddy has had a note above his bed saying NBM (Nil By Mouth) for ages, it also has on it ‘Pt’s daughter to feed. PD, Grade II TF (puree diet, grade II thickened fluids’ – okay so somewhat misleading to have both but at the big multi-disciplinary meeting about Daddy a couple of weeks ago (12 of ‘them’ and me, my Mum and the PALS lady so no attempt to intimidate us there then!), it was agreed that he could be fed by me, when the time was right i.e. at the end of the rest period, before being fed through his NG tube, and if he wasn’t sleepy, which I was doing but only every other day to see if anything went wrong, and only fourteen teaspoons max. which proves he does still have a bit of a swallow but not enough, and not safe either and too scary to really leave to being his only way of eating so … Matron informed me that there has been a safeguarding complaint made against me to Social Services about my feeding him when he was NBM. He has only been totally NBM since Wednesday when he had a bit of a temperature and they were worried another infection was starting – he was constipated – but before that he was allowed to eat if he could but everyone medical is privy to this information so it’s been done for spite, as the knowledge is there, or I could have been asked but no, straight to Social Services who only have to take that seriously and he could be taken away from us. Who would be so despicable, and of course, they won’t tell me, it’s all done in secret; Social Services haven’t even contacted me to ask me anything.
So then you can see how I think this is all part of a much bigger picture, and then paranoia sets in such as, there is often medicine left by his bed and little room so I am always tidying so I returned some pills that were left by his bedside and should have been locked up, so my fingerprints will be on the box. What if they say that some are missing and that I must have given them to him? And from there, that I’m a danger to him and he shouldn’t come home to us?
Okay, so I am beyond tired but I am now really scared too. His notes now have a huge sheet stuck on the front saying that they are not to be left unattended and have to be locked in the ward pharmacy or the doctors’ office – why? – what do they have to hide? And the same Matron who wrote that note also warned me off making a complaint, again, why do that unless they have something to hide?
I’m going to send a modified version of this to PALS and say that I won’t pursue a complaint against the hospital and the initial consultant if they leave me alone. It’s not true but if it stops them pursuing me until after the operation and we have got Daddy back home, that will be okay.
Oh and re. the UTI - I reported the smelly wee on Thursday at 6.00 p.m. - he finally got antibiotics yesterday, three whole days when you are actually in hospital - you couldn't make it up. How does anyone, who hasn't got family fighting for them, get out of there alive?
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