Hospital lied! Wwyd?

[ReallyBadEyeDeer]

Hi I don't know if there's even any point making a fuss about this but am so hurt and angry. Elderly parent has been in hospital a long while following fall and confusion. Much better now but still comes out with very odd things and routinely believes they are somebody else, are in a different place, that things have happened which haven't or people are different to who they actually are.

Hospital is now preparing to discharge as nothing physically wrong, asked me if I still had any concerns and I said yes as they still seem intermittently delusional, occasionally very angry (quite verbally agressive) towards me, and various staff members at the hospital have mentioned suspected dementia to me but apparently they're not allowed to make a dementia diagnosis whilst in hospital- I stated that concerns me as I will not be able to provide care when they come out and elderly parent lives alone.

Discharge notes have come through saying I - not they- had reported elderly parent showing signs of severe dementia since going to hospital. Plus a range of other misquoted things taken completely out of context. They say very little about their own observations other than that a cognitive test was done and give the score which is exactly on threshold for dementia (again, not stated in the report). It's all things I've said. Plus a recommendation fir further assessment once discharged.

Of course my parent is now incredibly cross with me because it looks like I'm saying they've got dementia and am the one that's kept them in hospital all that time. I feel like I've been totally stitched up and am now left not only having to deal with someone undiagnosed but possibly with dementia, certainly delusional, when they come out but also now who doesn't trust me and with a fractured relationship. This has also gone to their GP which isn't going to help my relationship with them if ever needed.

Is there even any point putting in a complaint? What should I do? Its been an awful time anyway and this just feels like a kick in the teeth.

I wouldn't worry about what the GP will think. They know that hospital letters often contain mistakes. They will also know that adult children are often the ones to spot dementia though and they might be able to support your DM through a diagnosis.

I don't think it's worth complaining unless you will benefit yourself from writing a letter to feel as though you've done something about it. I'm not belittling what has happened; I'm just aware that only the most serious of complaints are likely to be dealt with satisfactorily so I don't think you would get a useful response and it'll just drag things out.

That's what I suspected re: not being worthwhile. I'm just so cross at the damage they've now done to my relationship, which already was not good and they've made it even harder just so that they could get elderly parent discharged and still cover their conscience that they'd flagged the issue without needing to make a "diagnosis" themselves. They've kicked the can down the road to me instead.

Unfortunately I already don't have a great history with the GP - elderly parent has complex mental needs and I tried to flag issues a while back before they ended up in hospital but GP said they wouldn't get involved in family matters. So I don't think they will be thrilled to see my name on those notes again. I don't even want to be involved! I'd love to wash my hands altogether but they have nobody else so I have some ethical / moral obligation

No point putting in a complaint.

You may be best advised to act as if your parent already has a dementia diagnosis since in my experience very little support is offered following one anyway.

Are they likely to remember the letter?

Many people with dementia are able to be relatively safe and look after themselves in their own home which is a familiar environment with familiar routines and activities.

Do you have specific concerns?

In my experience, trying to get a dementia diagnosis is extremely difficult. It’s not in the hospital’s or indeed the GP’s interest to make a diagnosis. The cognitive tests are nonsense too. It makes me so angry, surely a relative noticing something isn’t right should be taken seriously? But it is easier for doctors to minimise and deny these concerns.
Rant over. It’s shit OP but you won’t be the only one who has been here

I have lost count of the number of hospital discharge letters I have seen for my parents.

They always contain errors. Unless it is something dangerous like a medication related thing, then we don’t say anything.

We have actually wondered if some letters are written the way they are to justify whatever it is the hospital wants to happen next.

in one case, they said I live with my mother - which I don’t, I was living two hours away at the time - but it would’ve been considered a risky discharge otherwise. But when we told them, they didn’t care.

(It didn’t matter because at that point I was arranging to put her in a private care home for respite).

But in general, all the myriad of people involved in my parents treatment have been aware that a hospital discharge letter is just completely wrong.

I don’t know how many layers of bureaucracy it satisfies, but it certainly indicates how many things need to be chopped out of the NHS.

Sorry that’s not relevant to you.

I hope everything goes well for you both.

Agree with this. GP refused to do memory tests or refer MIL to clinic because MIL had not asked for the test. Well duh!

But those test results may/ would have implied further action needed so they chose to ignore .

Sorry you are going through this. I found the hospital social care team much more helpful.

Are you sure they don’t have a UTI, this happened to my grandad

Thanks all, yes I get that discharge letters frequently contain errors etc. The problem with this one is it has been very much worded like I'm saying I believe elderly parent has dementia, but the hospital don't (despite the cognitive test score) - hence the discharge with no further support. The issue with that is elderly parent IS still v much capable of understanding letters and for some reason has also been told in meetings that i think this....so is now v v cross with me, sending lots of aggressive messages etc.

Which now makes my situation of trying to keep them half safe even harder as they are cross and distrustful of me.

I'm amazed the hospital wrote there are no issues with Paranoia etc because they firmly believe everyone is out to get them - and now I'm public enemy number 1.

Initially had pneumonia but even after the initial delirium wore off, there still seems to be confusion months later.. it wasn't me who ever suggested dementia - it was the hospital staff! They've just said it was me in the discharge notes and to elderly parent!

But do you disagree with anything the hospital has written? If they are stating that you said something you never said and do not believe to be true, by all means complain. But if you would just prefer it to come from them and felt that they agreed with what you were saying, I would leave it and move forward from where you are.

Ah ok, if you don't feel that your mother has dementia say so loud and clear, to your mother and to her medical team, and do complain.

Part of the reason they hesitate to make a memory assessment in hospital is that elderly people can often develop delirium during hospital stays. Delirium presents very much like dementia, but can resolve over time. It may be that conditions improve in the home environment over a few weeks.

If not, then the GP does need to refer for a memory assessment by a consultant psychologist/psychiatrist. Ideally followed up with a scan to identify the type. But I understand that it can be a battle to get to that point.

My mum is in her 90s and fell, breaking her hip. She had part of it replaced under an epidural. She was doolally for weeks, frankly! Even months later when she was back at home, she was never sure which room was which, or where anything was. In hospital, she had serious delusions which made us wonder about dementia but then some research showed delusions are really common after hip operations in elderly women. It's very distressing for the patient and for the family.

That's interesting, thanks for sharing. This all initially began with a major operation too.

I don't know if they do or don't- I don't really feel placed to diagnose as I'm not a medical professional, I was relying on the hospital for that. All I know is they definitely are still intermittently delusional (to the point it could be a danger to themself and others if unsupervised). And I didn't "report severe dementia" as the discharge notes said - I just didn't disagree with what the hospital said to me as it seemed to make sense with what I was seeing. But they've turned it on me which DOES make a big difference to my parent's confidence in me - because I shouldn't be diagnosing, and they firmly don't believe there's anything wrong. Which puts me in a tricky spot when it's now "me vs the health system" instead of us all aligned. I feel very let down by the health system.

What support did she require once home @MILTOBE ?

We tried to manage with carers coming in 4 times a day (this was paid for by NHS) but they were completely useless. You couldn't rely on them coming at any particular time and they would stay for as short a time as possible. This meant we had to be there, and then they said because we were there, they didn't need to be. She went into a home a few months later.

I didn't think my mum's delusions were dementia, tbh, as they were incredibly severe at times yet she could go for hours without a problem. It was as though she was dreaming and believing the dream. Nothing was ever noticed by staff, either, which I think wouldn't be the case with dementia. Or maybe they just weren't taking any notice of anything she said.

Really my DM was tested in hospital, not dementia, just delusional

But she is convinced they had her on a dementia ward, even though the hospital doesn't have a dedicated dementia ward (just elderly people)

Going forwards, do you have PoA for Health & Welfare? They have to take you seriously then.

If you think there's dementia there, the route is usually a GP test, followed by a referral to memory clinic and a CT or MRI scan to see what's going on. I'm not sure it makes a huge difference though, apart from making it less difficult to access certain things. It's best to get PoAs in place before this though, if you haven't already.

Does your parent get Attendance Allowance? It does sound like they qualify.

Do they have a chronic UTI and/or are they dehydrated? Quite common for lots of the elderly in hospital and incorrectly presents as dementia. It’s not always picked up (hard to understand why tbh as should be standard stuff). There’s always a dramatic difference if treated properly if they have one or both of these as underlying factors.

Sounds identical. Did the delusions just stop eventually?

No I don't. And following how I've been misrepresented, I'm reluctant to ever agree to have one now

My other favourite rant: EVERYONE should get POAs in place. I mean, on behalf of relatives but also for themselves. Even if you’re not old or ill or whatever. Nobody knows what’s around the corner. And having a spouse or family is not enough as they wouldn’t be able to make decisions on your behalf if you lost capacity.

OP in my experience you will be taken more seriously if you have POA. In most cases the healthcare professionals are just glad there is someone there who is legally allowed to make decisions. If it’s not too late, I promise you it will make things immeasurably easier in future if you have POA for your relative. I dread to think how much more complicated things would be for me if I didn’t have it in place for my relative.

it would be very unusual to diagnose dementia while someone has acute medical problems that can interfere with cognition and it can take some time (weeks/months) to recover from an acute event. Post-operative cognitive dysfunction may also be relevant and can also last for months or occasionally accelerate an underlying dementia process. It does take time to work out what's going on and to what extent it's recoverable and it's quite likely that the hospital team aren't in the best position to make a diagnosis. It sounds like you have had a conversation with the team about cognitive impairment/dementia so while the wording may be clumsy, it is important that that is reflected in the discharge letter so the GP knows a bit about the concerns, who's aware of the concerns and how much of an eye they need to keep on things. (Discharge summaries are often written by someone who's not been directly involved in a patient's care so they have to piece together what's gone on from the written notes. Where mistakes creep in it isn't usually an intentional thing/misrepresentation - it's someone doing the best they can with what's available and if the patient hasn't yet actually been discharged they may well be amenable to amending the note. Apparently hospital management believe the average discharge summary should take 3-5 mins to write - if someone's been in hospital for weeks/months then it's not surprising things get muddled!).

Re. POA, the donor has to have capacity to make the decision and if they're delusional and disorientated that may preclude them making that decision at the moment (PoA is not something you get, it's something they give).

it would be very unusual to diagnose dementia while someone has acute medical problems that can interfere with cognition and it can take some time (weeks/months) to recover from an acute event. Post-operative cognitive dysfunction may also be relevant and can also last for months or occasionally accelerate an underlying dementia process. It does take time to work out what's going on and to what extent it's recoverable and it's quite likely that the hospital team aren't in the best position to make a diagnosis

Exactly all of this.