Shaking with rage, can't sleep, NHS treatment of elderly

[Krupkrups]

My Grandma (89) has finally come out of hospital tonight finally after nearly nearly 5 weeks.

There's been nothing wrong she had a fall nothing broken, nothing but they wouldn't let her go home my uncle has lived with her for past 8 months since his divorce and she had a career who comes on a lunchtime. They said because she didn't have anyone at home which is bullshit, then social services got involved who were a shower of shite, then the hospital 'forgot' to discharge her twice despite my parents, uncle and care team being at home twice waiting.

Before going into hospital she could;

Get herself and dressed nicely

Get Downstairs / upstairs

Get herself to toilet and wipe herself - no incontinence pants

Make herself food and drinks (hot drinks, kettle on etc.)

Do crosswords

Move around the house with, slowly and with the help of a stick and frame but she did

Her memory was clearly going and she has slowed down cognitively in conversations but she knew we all were still enjoyed face times from my children, still read the paper.

She's come out and frankly it's like she's come out of a Victorian asylum, I am heartbroken, she looks deranged when she's awake sunken eyes strange rolling eyes, has lost an absolute load of weight - she was always very slender possibly too slender before now she looks like a famine survivor.

She is incoherent most of the time when awake.

Can't get out of bed / apparently is imobile - well yes she is now

Can't feed herself isn't eating when being fed

Is wearing adult nappies which have to be changed and the carers are changing and wiping her mess

Is covered in bed sores

I am weeping and raging I feel like driving to the hospital and punching the nurses in that ward in the face!!!! What have they done to her.

My Mum isn't much younger than your Gran.

I took her out for the day on friday, and she was in good spirits and very much her normal self. She had a mild fall on Saturday morning, and has deteriorated in the last 5 days massively for no specific reason. No injuries, but we presume that something caused the fall which is now affecting her. But no one else seems all that worried to be honest because it isn't unusual to have a fast deterioration after a fall as there is often a reason for the fall.

The NHS is a mess. I have first hand experience of this both in my own care whilst giving birth and in the care of my elderly mother both after a stroke and during her cancer care.
In my experience anyone over the age of 75 is treated as if they have dementia and cant possibly know what is going on. Anyone younger, particularly if they are female are treated as if they are idiots.
When my mother had a stroke she said her eyesight was fading. The doctor in A&E totally refused to accept she was having a stroke, insisting she just had a urine infection. They ignored me and my husband too. 2 days later they finally did a scan and 'Whoopsie' she had had a massive bleed on the brain. A woman who did a daily cryptic crossword reduced to a blind confused mess in less than a week. What about the supposed protocols of stroke medications in the first hour?
I witnessed the neglect from the supposed 'caring ' ward staff in the next few days. Food, drink and medication just dumped in front of her on her bed table. Goodness knows how long it was left there.
Attempts made to discharge her without a care plan in place. On one occasion , she wasnt on the ward. She had been taken for a scan but they had in fact lost her for 3 hours. She had been parked in a wheelchair in a side room by a porter with no access to toilet or water and no way of communicating her distress.
From that point I became the staffs worst nightmare. A solicitor friend said take meticulous records.I photographed all the pills that had just been left for mum to take and were stacked up on her table.
I went up to the nurses on duty each time, told them about the drugs left . I listened to their pathetic excuses, made a big show of writing them in a notebook and squinted in an exaggerated way at their name badges and wrote their names down too.
They were unconcerned that I might make a complaint because they assumed I would go through PALS. They became much more focussed and mum got much better care when I said I would my complaint with their names on it to CQC.
I heard one nurse call me 'a nightmare' to which I responded 'you dont know the half of it'
When mum was discherged to an excellent private care home I did send in a formal complaint to CQC including all my evidence.
I was pleasantly surprised that they did investigate thoroughly and as a result 2 staff were given official warning, 3 were sent for retraining and a 'matron' type person was brought in from another city to retrain the staff and ensure all correct NHS procedure was being followed.
I hope things have improved on that ward as a result of this. You shouldnt have to be such a bastard to get people to do their jobs properly.

So sorry to hear this. I hope she picks up. 💐

Well done you, I'd have done exactly the same. Although, as you say, it shouldn't have to come to this. There are too many hospital staff out there (alongside the very many caring and committed ones who are struggling against the odds these days, to be fair) who think they can browbeat relatives by snapping something like 'trust us to know what we're doing' and expect us to meekly sit down and shut up. Unfortunately the scenario seems to have become far more complex and sometimes it turns out they really don't know. Others do know but are too overwhelmed or uncaring to do anything about it.

The fact that a ward sister caring for my dad once actually urged me, with tears in her eyes, to put in a complaint about my dad's care because it might help those up top to realise she had too few staff and resources to deliver the care her patients needed (he was a big man and she didn't have anyone to help her get him on to a commode, leading to his having to soil himself on an incontinence pad after an enema), set alarm bells ringing for me six years ago, and that was before Covid.

A piece from the Times' Janice Turner addresses this issue.

Unfortunately the last time I looked she'd blocked me on Twitter - probably because a while back I pointed out that the treatment her mother got in a care home (she would sporadically write about it) might be different to the rest of us, because it was a running piece in her column, and that many in her mother's position get killed off via the means outlined in this thread.

There is an omertà on the issue of passive euthanasia in this country. Journalists sometimes do touch it with a barge pole, but prefer not to.

BTW be very careful when asserting yourself not to shout or be tempted into using bad language to emphasise your point - 'abuse and intimidation' is a trump card they can use to throw you off the ward.
Also, the CQC is pretty rubbish when it comes to care homes, it may be different with hospitals.

My heart goes out to you all.
it was bad enough years ago when Dh and I had elderly parents, it’s even worse now by the sounds of it
I am actually dreading getting older.
The NHS isn’t fit for purpose with elderly people.

Not at all but sometimes for example if a patient is confused you cant appropriately explain it to them and a lot of the time family also dont listen and dont understand medical decisions because they simply cant.

Elderly care is much more complex than most other areas as there is often polypharmacy, extremes of weights, poorer organ function and recovery as well as many social issues to take into consideration.

Medical decisions should be made by trained professionals and arent made on a whim or because theres some conspiracy to kill elderly people. It's made in the patients best interests and sometimes neither the patient nor their family do that.

I've known families to have meltdowns when drs bring up DNR for extremely frail patients who would never survive it anyways, they want a doctor to essentially jump up and down on the chest of a 6st woman who can no longer speak for herself just because they cant accept letting go. Doctors can explain all this and still people dont listen or understand usually because they have no training or experience of this. I've no idea of your specific experience obviously just my own but I've always found medical staff to thoroughly explain everything and still people not be happy or not understanding. For any procedure done or medication given full consent must be given so I dont believe that doctors are just doing things without informing the patient/family. Yes discussions may be had about the best course of action between professionals before informing the patient/family.

It's not about power or hiding things or covering things up its about providing information that is appropriate to the situation and to the patient. People who arent trained cannot understand the experience and training of people who have been doing the job their whole lives. This thread alone proves how emotional people get (understandably) and how they overreact.

A lot of the time the patient has also asked for their family to be kept in the dark and therefore doctors cannot pass on further information.

I agree. The sheer slowness and lack of urgency does a lot of harm. My MIL spent 48 hours on a trolley in A&E before they started administering IV anti biotics for her double pneumonia. She just got worse and worse, with confusion, delirium, etc., not helped with lack of drinks and food. The doctors decided on IV fluids and IV AB's but it was glacially slow to actually happen. By the time they'd finally got her to a ward and the drips put in, she was completely oblivious and delirious. This was after a few weeks of the GPs ignoring her as she got worse and worse. The only part of the NHS who took her seriously and gave urgent attention were the paramedics who blue lighted her to A&E - before and after, there was definitely a couldn't care less and we'll "do it later" attitude. Truly appalling.

My poor mum who is in her eighties had a medical procedure a few weeks ago. When I picked her up afterwards, she was quite distressed and apparently during the procedure, the medical team did something she wasn’t expecting and certainly wasn’t prepared for. It really upset her.

When I took her last week for a follow up appointment, apart from saying hello and taking a few details, the medical team barely spoke to her. They were huddled around a monitor with my poor mum partially undressed chatting away to each other. Not a single person in the room explained what they were doing and why.

We will be raising a complaint via PALS, not because we want anyone disciplined but because it’s important for medical staff to realise that whilst this might be routine for them, it isn’t for the patient. An explanation goes a long way to making people feel comfortable in what is an alien environment for them.

Yes, but as I have experienced, too many staff apply the assumption you have noted above "that family members won't listen or aren't able to evaluate the information to make a decision themselves" (not a verbatim quote) to everyone and assume that all of the public is semi literate and/or inarticulate.

I've experienced it in relation to the care of my children, myself and my mother. The lack of respect for patients is too often palpable and I am sick and tired of being spoken to as though I am a subordinate nitwit. It's time the bar was raised and NHS staff aimed for the highest common denominator first, rather than the lowest.

Your approach underlines the absence of respect which at all times should be mutual. However, if an HCP wishes to speak to me as though I am inconsequential, sometimes raising their voice if I am not in agreement, "now mum" my respect is lost and that is the point I wish to speak to the person in charge. Surprisingly the Consultants tend to be far more respectful than nursing staff and junior drs.

@RosesAndHellebores

The lack of respect for patients is too often palpable and I am sick and tired of being spoken to as though I am a subordinate nitwit.

Nail on the head there. OH has had cancer for 8 years and been on his current treatment regime for 3 years. Yet when the oncology dept make a cock up with timings/appointments, etc. (which they do almost every month), they talk to him like it's his first time and he's an idiot. They try to tell him he's wrong with the cycle dates, when he's actually got it all scheduled on a spreadsheet and it actually correct, and it's they who've got the dates wrong, then they go into "narky" mode rather than gracefully accepting they've made a mistake. Same with the oncology consultant - it's taken OH a few years, but the consultant has now finally accepted that OH is perfectly capable of his own research, control of the condition, etc., and they've finally started speaking as equals rather than OH being talked down to in a patronising way which seems to be the default of most healthcare professionals. I've no doubt they put up with a lot of stick and deal with a lot of thick people, but they really shouldn't assume all their patients aren't capable of understanding and not even try to explain things properly!

Tbf to medical staff they have no idea if you are a bit of a nit wit or not and they often do just explain things in simple terms deliberately to avoid overwhelming people with jargon which makes them panic. I've no idea if someone I speak to is illiterate or a medical doctor themselves so we give the info and if people want more info they are encouraged to ask. We're actually trained to try and give as much info (in an appropriate way) as possible without causing panic, sometimes we might get it wrong but tbh it seems like you go in all guns blazing looking to accuse medical staff off deliberately lying or being disrespectful.
Also you seem overly defensive which can come across quite unnecessarily aggressive when confronting staff so potentially this will put peoples backs up.

This post hits home to a situation our family found itself in.

Mum had a massive stroke, i had POA, my siblings wanted our mum kept alive at all costs... i went on the guidance of the Doctors & Nurses, which was no intervention other than pain relief, she had no quality of life at all.

It caused a huge rift between us all, they found the Dr's arrogant know it all's, at one point my sister accused them of wanting her dead to free up a bed... i however found them informative, caring and to this day, i truly believe they did the best for our mum.

My attitude is that they are the experts, so i listen to what they have to say with respect... if they subsequently prove to be incompetent, well thats another matter.
From what i ve seen over many years is that some of the public think they know more than the Doctors etc.

I wouldn't want their job.

We need a serious conversartion about the NHS in its current form which is truly disgraceful.

My view is that we need to start considering a co payment system. We should stop expecting that the good old NHS will pick up the tab regardless of what we do. This will allow us to breath.

With both elderly parents the NHS bent over backwards to treat and to not show they were ageist. I had a robust conversation with a consultant regarding DNR. He said he wished other families were like this. Often he told me they wanted everything thrown at the elderly person. I wanted Mum to have a peaceful death not have broken ribs and brain damage because I insisted they do CPR on her.

@RosesAndHellebores I was away yesterday when i got a call from the community nurse, She couldnt get in to change DMs dressings. DM is housebound, Refused key safe, carers commode stairlift. Is now confined to a chair, DNiece lives there, works in a SEN school as a TA. DB was at work. Neither DB nor i have a key. So house was locked up Nurse was telling me that someone would have to come and let her in
Me...........i dont have a key
Her so your brother or niece will have to LEAVE WORK and come here
I told her that DN has a key but cant leave a classroom of children and just walk out of work
So she then said she could report this as a crisis but crisis team could only treat it as such if they were asked to come out straight away. I had to text my DN and ask her what time she would be home from work Nurse said DN could ring crisis team when she gets in So i texted her the number
Nurse also pointed out that a GP was due to come out to see Mum today. More of that later!
Now on Easter Monday I phoned the emergency adult social care line "sorry we cant do anything till tomorrow" Why couldnt they give me the number that the nurse gave me yesterday.
I also went to DMs surgery yesterday morning at 8am They never mentioned to me that DM had a GP coming over today.

UPDATE Crisis team didnt come till this morning and have ordered a frame (which DM already has) and a commode which is coming tomorrow One is coming from Amazon tomorrow the one that DB ordered when DM changed her mind about having a commode on Wednesday night at 6.30pm. Nurse said that wasnt quick enough.
She also changed her mind on a bank holiday about having carers so i rang ASC on Easter Monday and then Tuesday "we cant do anything until we have her permission and we need to hear it from her lips" DM is deaf and wont use a hearing aid.
Nurse said to me yesterday "your mum is in crisis" I told her it was partly a crisis of DMs own making because of her constant refusals of help and reminded her of the mental capacity law. Where people are allowed to make unwise decisions even if they are to their own detriment. Quite how this is the fault of relatives and how its our fault for not being able to circumnavigate this law i have yet to fathom.

And i would be really interested to know if that community nurse would be ablet just walk out of her job with no notice when called upon to!!!

@MichaelandKirk

I'm not convinced co payment will do anymore than give us a 2 tier system and that Govts would use it as an excuse to cut public spending on the NHS even more.
We all the problems in Social Care and how to fix them... yet no one is doing whats needed.

We prioritise tax cuts over health, its been going on for decades and why we have, per capita, lower spending than our European neighbours.

It sounds like they are doing everything they can, I don't really know what you are complaining about? A DN went to visit your Mum, great, but your own mother has refused a keysafe, so what would you like the nurse to do, break in? I saw in an earlier post you complained that you had several missed calls from what you presumed was the hospital and you couldn't have your phone in your hand all day. How else would you like them to contact you? Carrier pigeon?
I'm sorry but it just sounds like you are looking for reasons to complain.

I dont want to be blamed for decisions that DM has made. Mental capacity

They were private number calls so i couldnt return them so i still have no idea who called. DM was in hospital on GOOD Friday The calls came on Wednesday. I cant see through private numbers Im not the non existent Phoebe Halliwell Nice try though.

Then what is the problem? How do you know it was about her care? Nice try at what?
You really can't moan about someone trying to get in touch with you via phone, it's not their fault it is a private number- as it is in many health care settings. Leaving voicemails is generally not allowed due to confidentiality.

Whereabouts on this thread would you say people have been 'overreacting', out of interest?

The trouble is that sometimes by the time they 'subsequently prove to be incompetent', someone's lost their life, or is on their way to doing so. Personally I'd rather risk making a bit of a nuisance of myself if I have a concern, than meekly defer just because someone's an 'expert'.

And as for people thinking they know more than the doctors etc, personally I don't think that, but the number of basic errors I've seen made in hospitals (I'm talking very basic errors here, like denying an asthmatic patient their inhalers and then standing around scratching their heads because 'his breathing seems to be worsening') suggests that blindly accepting every word that comes out of the mouth of an 'expert' is a risky strategy.

The doctor in our family says regularly that 50% of doctors are incompetent!

Oh really, can our highly trained post graduate qualified nurses not quickly assess people. Clock their accent, address, general demeanour, etc? Even if not, how about speaking to them as respectfully as you would a consultant rather than dumbing down to meet the lowest bar?

I thought research showed that people tend to take in very little at key medical appointments, especially when bad news is involved.

It is not about educational background or competence. In the middle of a crisis even the best of us can lose it. Slow, clear and simple. Better to be seen as patronising than have people not fully understand.

FWIW my mother with Alzheimers was totally convincing. During the memory clinic test she announced the names of her grandchildren, except she had completely made them up. Ditto the social worker when carrying our her assessment, asked my mother if she used glasses. "No". I caught the social worker's eye then looked at the glasses on the table. She smiled. Both the investment advisor and the solicitor confirmed to me that they had absolutely not spotted her lack of capacity during previous meetings. The confidence, dating back to her post-war Oxford education, carried her a long way.