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.

The 'very basic errors' chimed for me:

DM in hospital post surgery for a fractured hip, has suddenly become very upset/angry/belligerent refusing food, insisting that she should go home 'right now'.

Nurse flapping around, doesn't know what's wrong. So I suggest DM has a UTI.

Nurse suddenly goes 'oh, yes'. Like the thought had never occurred. Why? With a ward full of slightly dehydrated people, many with catheters, UTI should be the first thought.

The flip side of UTIs is when it's the go to for every change of behaviour when there might be other causes and medics develop tunnel vision.

The sorry saga of my SM and DF went as follows:

SM has diagnosed and documented aneurysms that, with her long history of controlled paranoid schizo affective disorder, remained untreated because her focus was on her hair remaining untouched. She refused to believe the treatment wasn't the butchery of old and would be keyhole type intervention. Fair enough, no-one can be compelled to have treatment and she was judged to have capacity.

She also has a history of "freezing seizures" witnessed by my DF, paramedics and once her hairdresser. The first time it happened they took her into hospital and had her under observation for ten days. No conclusions ever drawn, no reported treatment, but then, due to her paranoia, she tends to not allow anyone to know what's actually going on with her, which is a bit awkward for those trying to care for her.

So January 2024 she had one of these seizures on New Years Eve. Wouldn't allow Dad to call the emergency services, but he was allowed to call her consultant the next working day. Consultant saw her, seemed remarkably unconcerned and told Dad to take her home to rest.

SM slept for 12 hours, then for the next two weeks presented as completely manic Awake for 60 hours at a stretch, ransacking the house, behaving in a most peculiar way. My Dad did his best to manage but had to be on high alert for her safety. As it got worse, he called her CMHT. Then he called me. MH nurse came round and suggested UTI despite the sequence of events described and no other symptoms of UTI. Dad couldn't wrangle a sample out of her after two days of trying. I went round and spent two hours trying to reason one out of her, but couldn't even though she "appeared" to understand she needed to give one. I rang the GP for advice, and we ended up in A&E by ambulance.

After 2 hours outside in an ambulance, 6 hours in a corridor, we got into A&E and tests were done. Apparently she had "faint markers" in her urine. According to a friend who works with the elderly, most of them do. So eventually SM gets onto the Elderly Assessment Unit. Bear in mind I have clearly explained the sequence of events and her medical history to about a dozen various HCPs and doctors at this point. I'm with her (she's been my SM for 40 years so am intimate with her history). My Dad is brewing pneumonia by this point as well hence me taking over, but this wouldn't become apparent for another week, he was just exhausted.

She spends one night on the ward. We are relieved - at last, they will be able to look at her brain and see what's going on. Nope. At lunchtime the next day, Dad and I go to visit and as we're early, we stop for a cuppa in the cafe. Dad suddenly gets a call - she's ready for discharge, come and get her. We go onto the ward, we explain to the discharge nurse why this isn't safe for SM or Dad. All HCPs insist on discussing everything in front of SM who becomes enraged, leading to the junior doctor who had been summoned to diagnose "poor family dynamics" on top of UTI.

And while she stayed in hospital and was eventually sectioned over a three month period, nothing, but nothing, was really investigated or explained. The determination to get her home to my Dad regardless of risk to them both and expecting him to care for her with no information because "capacity" and confidentiality was staggering.

So those opining that relatives don't understand and are a thorn in the side of "experts" are lucky they haven't experienced some of the clusterfucks, arrogance, dismissal and frankly callousness that some of us have. When you have explained clearly and calmly an exact sequence of events, dozens of times to dozens of doctors and it is dismissed as not relevant, without exploration because there is a preferred, easier option, I think it's quite reasonable to have a very jaded view of the system as it stands.

Signed "a bit of a nitwit"

And am absolutely prepared for the "this couldn't/ wouldn't happen brigade.

And as an aside, the Coroner is very, very interested in the whole situation from start to finish. Dad has a PM early next week. And I'm not finished yet.

Yesterday I spoke to the Housing Officer who came to get my Dad's tenancy agreement signed in his hospital bed. Halfway through the conversation she said "Oh he did look very poorly. I didn't think he was going to make it". I have a witness to this, so it definitely did happen. While it's not worth much consideration I was a bit 😳 - just another, small bit of thoughtlessness and unprofessionallism.....

@MistressoftheDarkSide yes absolutely that. There have been occasions when I have explained a symptom or an issue, explained what is in place already and recommended by an specialist or occasions where I have just clearly explained something. My experience is that many people (doctors and nurses) in the NHS don't listen and don't or won't consider the patient's or carer's perspective. Notably in relation to me an F2 decided I hadn't wedged a vertebrae because she didn't think I was in enough pain (I am quite stoic and I was tanked up with morphine because my arm was so badly broken it needed surgery). I got a back XRay only after I politely asked her to note in my records that the patient had requested a back XRay and the Dr had refused. She then told me there was no evidence of a new break (whole other story). The T12 had wedged severely. I can think of four or five similar examples.

No doubt another poster would claim my request for a note in my records to be defensive and to put people's backs up. I define it as assertive and articulate. I think it's a great shame that the NHS doesn't like assertive, articulate and well informed patients. It speaks volumes.

@MistressoftheDarkSide condolences

So when you fly do you also question the pilots expertise?

Not a direct comparison but if a Consultant tells me X, as a lay person, on what basis do i question this? Dr Google says?

My earlier post showed the issues they face, two in the immediate family thought they knew best, i did not & was proven correct, which my siblings now totally support.

tbh i think questioning a consultant is rather arrogant, the stroke specialist, said mum couldn't recover & it was obvious to me that she would not... so interventions would prolong and increase suffering.

Of course not all Dr's are equal but based on my contact with them, i doubt its 50% that are useless.

So what you re saying @RosesAndHellebores is that the NHS should do what the patient wants.... when dosed up on Morphine....

Quite how you would know the specifics of your back pain without an x-ray is beyond me.

Based on my contact with doctors over my 56 years I have been incredibly unlucky in that case, as it's significantly more than 50%. And trust me, it ain't my attitude as I learned to play the fawning game very early on.

That's why I was requesting an XRay, to confirm the specifics, but was dismissed. I knew the likelihood because four years previously I wedged the adjacent vertebrae. The pain was exactly the same. It was important to diagnose properly and swiftly due to established osteoporosis and ensuring optimal therapy for that moving forward.

It was two hours from accident to the administration of morphine by the way.

Its easy to blame the doctors or nurses. .

There is something very very wrong with the way the NHS is managed.

There seems to be a total move away from merit towards EDI. F1/F2 posts are no longer allocated on merit, which means that demanding posts which in the past might go to those most qualified can go to anyone. High flyers are being allocated to what were traditionally more sheltered posts.

It matters. For example some overseas medical schools, perhaps because of language issues, offer very little patient contact. This needs to be sorted out during F1/F2. Not easy in an overstretched department.

It gets worse after that. Boris effectively opened up all doctor and other nurse, midwife and other HCP jobs to worldwide competition. This year over 50% of specialist training opportunities went to graduates of overseas medical schools. My F2 daughter only knows one of her peers across her whole deanery (several NHS Trusts) who has got a training post - to train as a GP. House/F3 posts will attract several hundred applicants and with blind recruitment and the fact that UK based F2s can have heavy schedules (DD is on the old 2005 contract with less support and no time for personal development.) I understand from other posters, who seem close to NHS policy making, that this is because the NHS want to recruit the best and that overseas doctors are seen as better qualified, with wider CVs (research, publications, competitions etc) and are usually more experienced.

DD and most of her peers will have no choice but to leave the profession or to look for jobs in Australia or South Africa. (Major irony here. We recruit doctors from Africa, they recruit from the UK.) And once in Australia UK trained doctors are rightly at the back of the queue for both job opportunities and training, and , unless policy is changed, there is no easy way back. Whilst the evidence is that those who have been allocated training places are picky about where they go. DDs last rotation was desperate. Eight out of 16 training places within the Deanery were vacant. Consultants were on call one night in four. The wait time for an urgent referral was 2 years and eight years for a non urgent referral. Two of DDs consultants wrote her personal notes saying what a good clinician she is becoming. No doubt they would love to keep her, but they can't appoint her based on performance. Instead if they were able to convert a training post vacancy to a staff job it will be international recruitment, sifted by set criteria. Agencies overseas will give support their applicants, but no such support will be available to UK residents. Performance reviews and the fact they can work effectively within the NHS will count for nothing.

The same applies to nurses and others. Entry level jobs which would allow UK graduates to gain experience are very very hard for those without experience to get. Which means that, particularly areas where recruitment is traditionally problematic, are even more stressed. Locals who see the area as home are much much more likely to stay. In contrast the experience is that overseas hires stay a couple of years and then move on to England's urban centres. And the merry-go-round starts again.

So that tired grumpy patronising doctor may under huge pressure. They may be the sticking plaster that is holding the NHS together. They can only do what they can do. And if they are junior they will be feeling absolutely unappreciated and facing a very uncertain future.

I ve had accidents injuries and illness since my teens, over 50 odd years of NHS experience.

I can honestly say i have had nothing but fantastic treatment from the NHS, where i have had poor treatment/advice is from the private sector, usually wanting to do surgery when the NHS was "no it will heal on its own..." the NHS advice was correct.

My Mums end of life care, imho couldn't have been better, as was my Aunties, my cousin is getting great care with her on going cancer care.

My line manager even had good treatment with his cancer diagnosis during Covid, yes there were frustrating delays but, considering the situation, understandable.

The first failing here is communication. It almost always is when things have gone badly, or when they are perceived to have gone badly.

I'm sure its now an unwritten policy to run wards with 1 or 2 fewer nurses than are supposed to be on shift, and to burden them with endless paperwork.

Similarly with doctors, in 2005 there used to be 3 of us on a ward of 28, now theres often 1 between 2 or 3 wards. Ooh a resident may cover several specialties, which only leaves time for dealing with the absolute emergencies, and also means when relatives ask for an update at the weekend, more than likely its for a patient theyve never met, or even under the care of a specialty they have little experience of.

Well, I'm so pleased for you.

Do you accept that a very significant number of people have not had the same experience?

I've, or rather my mum has, just gone through something very similar. My mum has lost a lot of mobility and the dementia seems to have become worse. I'm not going to blame the NHS because they did treat what has now been diagnosed as a heart condition and without the accident, we wouldn't have known

Thats a really nasty comment.... "Well i'm so pleased for you..."

I haven't belittled nor dismissed your experiences.

Do people get good care all the time? no of course not and i've never said otherwise.

But i do think some people have unrealistic expectations of what the NHS can and cannot do and as i illustrated with my situation, what some consider poor care, others consider good care... my sibling thought our mum would live forever, their experience of death was very limited.

It is also true that in the last decade or so, NHS care has got worse but thats the fault of Govt, not the NHS itself.

I do agree communication is vital.

I am pleased for you.

I wouldn't wish the experiences I and my loved ones have had on my worst enemy.

My point is that those who approve of and participate in what amounts to institutional gas-lighting should be held to account.

Honest and clear communication is hardly an unrealistic expectation.

As a family, we have had far more bad experiences with the NHS than good. In fact, if my mum’s GP told me that grass was green, I’d go outside to check for myself.

I’m glad that people have had good experiences and are happy with their treatment and outcomes, but there are an awful lot of us who have had the opposite.

No I don't question the pilot's expertise because the aviation industry has very transparent protocols, very swift dismissal processes, catastrophic events are infinitesimal and the equivalent of "never events" are subject to significant and overwhelming scrutiny, mechanisms for prevention and reflection. The same approach does not prevail in the NHS.

My family know personally one of the families involved in the QEQM maternity disaster. The baby died. Getting clarity and justice was an uphill struggle, even for a family who were articulate, professionally qualified and able to advocate their way through the co.plaints system, despite the attempts to fob them off. Some of what the NHS does in toxic and dysfunctional environments is reprehensible. It is also not new.

DS1 may not have survived his birth had my DH, a former QC, not called the lack of action and cognizance and demanded that whoever was in charge arrived immediately. When they did the emergency button was hit, the room filled and I shall never forget the silence as DS1 was resuscitated. He spent the next twelve hours in SCBU and the Director of children's and Women's Services visited me the following morning. Christmas Day, and had a chat to confirm I was happy with the outcome. Only with hindsight did I realise the seriousness of what may have happened but by then I had already confirmed all was well. At that point I didn't realise my bladder had prolapsed due to the effort and swiftness of the birth once the strangling cord was cut prior to the birth of the baby. He was too far out to be pushed back for a section and his dropping heartbeat had been dismissed three times by the twonk of a midwife before my DH intervened.

The prolapse was repaired privately because the NHS were kicking the can down the road. They don't even put right the results of their incompetence and my GPs did nothing to suppprt an NHS referral. That was in the mid to late 90s so the issues aren't new.

Jeez, that sounds so stressful, I'm sorry. And 'poor family dynamics'? I wouldn't be able to let that lie, bloody cheek.

Diagnoses of water infections do seem to be a minefield in general. A hospital A&E once tried to discharge my dad home after he'd been admitted utterly incoherent and confused (extremely abnormal, my dad was sharp as a tack with no dementia, which we said at the outset) because it was 'probably just a water infection'.

Kept him in A&E all night after I pushed back, then finally after doing more tests they agreed he needed admitting, turned out the actual cause was an AKI. Happily he recovered, but I don't like to think what would have happened if I hadn't pushed.

Tbf, this is a hospital that appears to be on its knees, desperately underresourced, and again I'm sure most of the staff were doing their best. I really feel for NHS staff in this position, I couldn't work under that sort of stress myself, and although I can be pushy I am always polite. But it scared me that a doctor was all for packing him off home on the assumption that it was 'just' a water infection, 'bring him back if he gets worse', how are relatives supposed to evaluate that? He was already pretty damn bad tbh.

No, not 'Dr Google' #tiredoldtrope. Common sense. (And tbh, re flying, I've heard things about the lifestyles of some air crew which, if true, would indeed make me doubt the pilot's expertise.)

I think it's very, very dangerous to blindly accept everything someone says just because they are an 'expert'.

And when you say 'questioning a consultant is rather arrogant' are you saying there are no circumstances in which you would do so? Because you'd better believe I questioned the consultant who caused my mum permanent physical damage during an endoscopy, which worsened her existing Barrett's oesophagus and has resulted in her no longer being able to swallow certain foods and made staying nourished an endless headache for her. Sorry, not sorry.

Consultants (in common with all medical staff) are human beings. They are not gods, they burp, fart and go to the toilet just like the rest of us. They have off days, days when they are exhausted, are in a bad mood, misunderstand and get things wrong like the rest of us. And, also like the rest of us, occasionally they plain fuck up. Who does it benefit to pretend otherwise?

If we're not careful society will end up reverting to the days when some lives were lost simply because people 'didn't like to question the doctor.' That's a no from me, and it always will be.

@ruethewhirl

Thank you x and I'm really sorry you had that experience too.

I find sometimes that doctors and other professionals are very quick to assume that family members /caregivers have ulterior motives for the observations they try and give. Or that we're mistaken, unable to see things objectively etc.

From experience which has been echoed by others in a similar boat, the day to day practicalities of caring responsibilities soon teaches you to compartmentalise, because being emotional in a crisis just doesn't help. And there are often lots of crises. Doesn't mean you aren't dying inside as you try and wrangle your LO with dementia, but you have to keep your forlorn inner child bound and gagged somewhere dark until you may get a moment to deal with emotions.

So when I've been given side eye for appearing too objective or detached, I've wondered if they'd really appreciate me having a complete meltdown under the circumstances....

Maternity and MH poor care is very well known about and the inquiries have all said that lack of staff, training equipment is the main culprit, not the only one of course.

So its funding and who has allowed these services to collapse?

Even Jeremy Hunt has said that he was wrong not to fund Maternity services correctly.
My FiL has had appalling MH treatment, but his physical care has been excellent.

Bloody glad my DD was born at home and i had excellent one on one care, others who had births at Derriford were not so lucky.

Totally, I can very much relate to the 'forlorn inner child'. Ironically I have a tendency to 'flap' about little things in life that don't actually matter much 😄 but I'm calm with the parent care stuff because it's the only way to get through it (my dad is sadly gone now, but my mum's increasingly needing support with her Alzheimer's) and I sometimes wonder if that factors in to how I come off when trying to advocate.

From the housing sector? Well whod have thunk it.

Yes, 100% agree with this. UTI's in the elderly are very concerning and can alter an elderly person mental state very rapidly.
Has she been tube fed at all or given that awful thickening stuff they put in liquids which prevents choking i think. That could definitely affect how she's eating now ?
Also agree what's been said about bedsores. That definitely needs addressing.