Should I complain to the hospital?(13 Posts)
Apologies for the rant..
My father is in his late 60s and went into hospital last month after he had had a few hallucinations which made me suspect all wasn't well. GP had ruled out a UTI and vitamin deficiencies/ blood disorders; he lost consciousness shortly after admission and had aspiration pneumonia which almost killed him - after which, the guidelines on feeding were revised.
He has partially recovered but is incredibly disoriented and hallucinates almost constantly. Nobody really seems interested in what's wrong, or what to do with him apart from getting him out. The ward feel it's not their problem; the neurologists couldn't get a clear MRI so have just put him down as a falls risk with a possible UTI (which he doesn't have) - he apparently has brain damage but since the MRI wasn't clear they can't say what it is or if it was just a case of the MRI not being clear.
Now that Dad is conscious, the ward are not remotely interested in him. He's left to feed himself (which he can't do easily), I suspect he isn't drinking much as he can't see where the water is (and needs me to help if I'm there), and the ward have started sending me home with his laundry. When it was just his pyjamas it was OK, but last time his 'patients belongings' bag had a wet incontinence pad in it which had clearly been there for a while (and which I didn't look for before putting the pyjamas in the wash... my fault, of course, but you don't expect that to come home in a laundry bag! Any tips on getting nappy fluff out of black socks would also help..)
He has also had three falls, one of which was reported to me but the other two were neither reported nor recorded - all three out of the blue rather than him tripping over something. The neurology team say he's perfectly ok even though they also say in the same breath that he's permanently brain damaged; the psychiatrist reckons there's no way he has any sort of capacity and the ward reckon that I ought to have all the information I need to work out what the diagnosis ought to be!
I'm really worried about the care he's receiving and it seems like the hospital have no interest in him at all. I completely get that the NHS is at breaking point and everyone's doing their best, but is this the sort of thing I ought to expect or is it worth complaining?
No experience of this but didn't want to read and run. My DH is a consultant and the care your DF is receiving does not sound good so I think you have grounds to complain. Can you try to meet with your DF's consultant in the first instance? Failing that, PALS can be helpful with this sort of thing.
Its not what you should be expecting at all. Obviously, they can't diagnose something when they don't have the data, but he should be well cared for in terms of eating and drinking, falls recorded, assessed and prevented - and you should know what the plan is going forward.
I've found that the very best care for my parents has been when they were on the geratology ward as they seem better staffed and set up to care rather than the acute wards who only have time to think about the acute crisis problem.
Make the ward staff very clearly aware that your dad is having problems eating and drinking, and do they have a plan to help this
And ask for a multidisciplinary meeting to discuss what should be happening with your dad going forward - a CT scan for instance is faster and less movement dependant and would provide quite a lot of data. Get everything in writing, especially if he doesn't have capacity.
Do you have PoA? If not, guardianship proceedings need to be started to enable his affairs to be managed
I contacted the palliative care team who are arranging a best interests meeting, though they are in the process of discharging him - it seems like this is the only way I will get everyone to talk to each other and make recommendations on his future care. Depending on who I talk to, they either think he has dementia and is a fairly typical Alzheimer's presentation (the ward); he has Parkinsons but not Alzheimer's and will be fine to go home providing there's a rail on his bed (the neurologist); or that he may be in recovery from encephalitis, doesn't have any Alzheimer's symptoms but needs 1-1 nursing care for a period (the psychiatrist). The neurologist was very clear that no follow up was intended and nothing more would be done other than trialling Parkinsons' drugs 'in case'.
One of the issues is that nobody is taking the lead on his care - there's no named consultant in charge of his care at all and the ward have basically washed their hands of him now he's clear of infection. Whenever I arrive, everyone on the ward melts away (except to shove washing at me!) so I've been quite careful not to be there at mealtimes - I know last time I was instructed to feed him which was then logged as 'ate everything without assistance from nurses'!
I do have POA which is useful; it does cover his finances but not his welfare as far as I know.
If you have LPA for finance it doesn't cover health and welfare but if your DH lacks capacity then decisions should be made in his best interests by thinking about his medical and social needs and consulting people close him - his wife if he has one and you. You would be very important as someone he trusted enough to handle his finances. Your role is to represent what he would say if he could in the given situation.
It's difficult as no one seems to agree what the diagnosis is but from your post it sounded as if he already had a health problem before admission and that the palliative care team is involved suggests they feel he is unwell with limited chances of recovery.
TBH all three diagnoses end up with much the same care plan - he will need a lot of nursing support with activities of daily living like eating, drinking, walking, going to the toilet and so on.
The neurologists diagnosis of Parkinsons may be right but then he should improve with meds. The functional assessment of home with a bed rails is clearly not.
So the discharge planning meeting is good and the answer may well be he needs a nursing home or a huge care package. It's good palliative care are involved as they tend to take a more holistic and practical view and want to communicate a lot.
Exhausted, I have worked in hospitals for about 25 years and something doesnt add up here. Either he is receiving potentially neglectful care which would leave the hospital open to litigation, or you only have part of the story. I understand that different medical specialities can have somewhat different takes on things, but here they seem to be completely at odds.
In my experience where elderly persons have complex and multiple medical conditions and needs, the Geriatrics team is generally the best one to pull everything together and determine how much rehabilitation is possible. I am not sure if they have been involved here. If they haven't been and the ward has gone straight to palliative care then they may have missed an opportunity . Needless to say , failing to feed and hydrate a patient is unacceptable. Likewise handing a soiled pad to you in a pile of clothing.
I hope the meeting with palliative care yields some answers, do not be afraid to ask for answers to all your questions and be very clear about the home circumstances and how much you can and cant do. Finally, hospitals have a legal obligation to arrange SAFE discharges so they cannot simply push him out the door without ensuring there is care in place. Check whether the ward has a discharge nurse.
Sounds a similar story to my Dad's experience in hospital after a fall and seizures.
We were messed around quite consideratly and they were forcing a discharge when I got involved.
He suddenly had a carotic duplex scan to see if his symptoms were stokes caused by a blockage (these were going to he done "at some point " as an out patient) and thanks to that not being the case he was referred to Queens Square where he was diagnosed with a malignant tumor.
Please do not let them discharge him. There is something wrong and it needs to be resolved.
Why can't they do a repeat scan?
The palliative team have now discharged him from their care as he's "so much better!" - yes in the sense of recovering consciousness, but he doesn't seem to be improving in terms of cognition, orientation or independence. He is now under the care of the discharge nurse who arranged an OT assessment and will contact Social Services to arrange a best interests meeting - I did have a discussion with her but she was clear that any medical information would be pulled together at the best interests meeting but not necessarily before that. The impact of that is that I can't determine what care he needs unless someone tells me - so I can't start looking at nursing homes until I have a full picture.
Everyone seems to be rejoicing at his miraculous recovery but ignoring the fact that a) he's in a far worse state than when he was first admitted; and b) nobody has worked out what the original problem was; never mind a prognosis (even a probable one), a diagnosis, or plan for follow up. If a diagnosis is 'impossible' as the ward seem to think, it doesn't really add up that he's being discharged from palliative care as presumably they also think they can't cure it?
The day to day care seems to be improving a bit in that the OT has noted that 1-1 supervision is needed whenever he eats or drinks anything - he definitely had someone feeding him during the 72 hour assessment.
Based on my latest conversations and the repetition from everyone of 'you're very anxious' (no, I just want information) I think I'm firmly in the bracket of pain-in-the-ass relative these days.
Be a pain-in-the-arse relative. It is exhausting and dispiriting work but it doesn't sound like they are being very joined up about him (that's the polite version). Make dates and timed notes of all your dealings with them (phone/in person) . And please make some down time for yourself.
At this point I think I would be going to PALS.
He can't be 'in the care of the discharge planning nurse', he's under the care of a consultant who should be able to tell you what the diagnosis was (or why they can't be more precise about it), how much better he will likely get or not. Prognosis may be harder to do but an honest conversation would work wonders.
If the ward can't set you up a meeting with his consultant to discuss this, I'd go to PALS and ask them to do it.
Saw the ward consultant (I think) today who is roundly pissed off with me!
He was most annoyed that I keep asking the same questions - which I do because I don't get any answers..
His feeling is (apart from the fact he's thoroughly sick of the sight of me and of Dad) that Dad's current state is 'the new baseline - probably'; the damage would be consistent with a liver condition, but the ultrasound scan of his liver was cancelled and there's no point in scheduling another one because 'there is no clinical reason to do so'.
His vitamin levels are fine and "there is nothing clinically wrong with him".
Well, except for the fact he's in a markedly worse state than when he arrived, and nobody either knows or wants to know why!
I don't think I'm going to get anything out of this guy and will approach the palliative team again to see what their recommendations are/ reasons were for discharging him. I may also have to go back to Dad's GP to ask for the liver ultrasound to be done as an outpatient (his outpatient one was cancelled because it was being done while he was an inpatient - except it wasn't!)..
PALS have been OK but tend to just refer me back to the ward, which leads me round in circles somewhat.
Thanks for listening to my rants!
I had that with my Dad. They wanted to discharge him and do a scan as an outpatient which would have taken ages.
I got cross then and said that if there was any further deterioration in his condition between now and when the scan took place as an out pt, then I would hope her personally responsible..
He was scanned the next day and it was found not to be as they suspected and so his treatment took a different direction.
What if his liver is satisfactory on scan? That would mean it isn't that that is making him poorly and so would require further investigation.
Do not let him be discharged home. Once he is discharged nothing will be done. I know that from personal experience
Every situation is different. If they are saying he is better, that may be an opportunity for you to wrangle PoA in Health and Welfare, and on this point I really would not hesitate, esp in view of the backchat you are getting from the hospital consultant (and they have a rep for being arrogant anyway).
It's true they want your dad to be 'cured' so they can stop him bedblocking. In March 2014 Epsom and St Helier were angling to get my mother discharged back to a care home in Banstead, Surrey, that had put in in there with severe kidney injury due to dehydration, a grade-two pressure sore about which we had not been told. Aspiration pneumonia too, about which we also had not been told. That night she nearly died! She spent the next month and half in hospital recovering, and was put on Continuing Care.
Pals may or may not be alright. I made a big complaint to them a year or so later and heard nothing back, I came up against the NHS wall of silence which they always do when they know they have done wrong.
So don't believe what they tell you. They want to wash their hands of your father. Oh, and yes, your instincts are spot on; hospitals do appear to be trying to kill patients in your dad's condition; this is done through a policy of dehydration, and most care homes will be authorised to do the same. So either be prepared to pay daily visits or pay someone else to do so, or it won't happen.
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