Care homes make me think people never die

What sort of regulation would you deem appropriate?

It wasn't regulated under the Tories because the whole care home racket was very similar to landlords who charge extortionate service charges to tenants, and the Tories are the party of the landlords.

It ought to be regulated under Labour but frankly it's like they don't have the balls to do it, or if they attempt it the State/British press goes after them and pretends it's because of immigration of pub closures. It's very hard to turn it around once it's all established a certain way.

That’s awful. I’m incredibly fit and active so if I wasn’t able to do my usual activities I’d be really depressed and expecting me to accept my new normal would not work. I think Doctors rarely disclose lasting side effects so people aren’t making an informed choice about their treatment.

Someone I know had their heart damaged with radiation for exactly the same stage as you. It’s completely affected her lifestyle.😕

They'll introduce assisted dying and no active treatment for dementia patients.

What will happen if or when house prices reduce to normal levels, ie when fewer people have overinflated assets which can be liquidated?

It reminds me of when happened in veterinary practice - big companies moved in, the focus switched from pet care to profit, and a Govt investigation led to guidelines which are probably not being followed around increased transparency etc. Care homes should be required to itemise their bills, at least approximately, but they won’t.

Radio 4 ‘you and yours’ looked at care homes Mon/tues this week, it’ll be on BBC sounds. Apparently 25% of care homes (in England I think) are now owned by private equity, so the focus is on generating the 19% returns for their shareholders.
I think that’s obscene - siphoning off peoples’ life savings. The sooner it’s properly regulated, the better; no wonder so many people have an uneasy feeling that the decisions being made to prolong life, aren’t necessarily in the clients best interests.

Thankyou x

Their relatives are living with it too, for what seems like forever.

I don’t think it’s a gentle death but there’s generally a timeline. A person can live with Alzheimer’s for a decade or two especially if they develop symptoms in their 60s and have no other health issues. Personally I’m not afraid of dying and I’d rather not have years of living with a poor quality of life and having to deal with benevolent ageism.

Also, and more grimly, dying of totally untreated cancer can be pretty awful. Its not something we really see in the west so I think people can have unrealistic ideas about how gentle a death it might be.

Fil was early 70s and refused any treatment for prostate cancer. It was the aggressive type and he died of it about 18 months later. His father had died from it, but there was no treatment back in those days. Fil was quite philosophical about his impending demise and just got on with it.

How many people with cancer who say this do you know? Because it strikes me that is a very easy statement to make when it's all theoretical. I don't know a single person whose been diagnosed with cancer that haven't wanted at least some treatment, even if there comes a point when they say enough is enough.

You have to phone them and speak to a human though and I really don't want to be treated as though I'm a child and do I know how important screening is etc. It gets my back up if I'm patronised like that. Why can't they enable opt out via the NHS app? Until they do that, stuff just gets binned.

I just used to bin the letters/test kits.

I refused any treatment for DCIs breast pre cancer last year. It would have made me a sick person for 5 years with the radiation ect. There is early dementia in my family, my mum got sick at around 40, and I believe I am a carrier as I see signs in my daughter. I sincerely hope something else takes me as I have seen that type of dementia in my childhood, bvftd.

That is not what is being said. Every life is precious and being elderly doesnt mean there is no quality of life. What is being talked about is when someone becomes unwell..sometimes terminally so and / or they are facing a sharp decline in health / quality of life.

In circumstances where people are unwell / debilitated from terminal illness or cognitive decline owing to alzheimers / dementia, in those circumstances there needs to be a conversation about what that person wants in terms of their care and wishes around dying.

There absolutely needs to be a recognition that sometimes what is in the best interests of the patient isnt necessarily to continue futile medical interventions to sustain life at any cost. We need to have a better way of supporting healthcare staff to deliver effective palliative care and any medication which is needed to keep someone as comfortable as possible.

@smallglassbottle You can opt out of all the screening tests but it’s a different form for each one. It’s worth doing because it stops the letters and kits you didn’t ask for being sent in the post.
I particularly hated and resented the ‘an appointment has been made for you’ breast screening letters. They almost imply people have to attend. If I want an appointment for anything I’m perfectly capable of making it myself.

It feels as if all this screening, treating and medicating is a long-term experiment. The ultimate goal is to greatly extend healthy lifespan but this may not be achieved until several generations or more into the future (if at all).
Meanwhile we are the lab rats suffering the adverse consequences of all this meddling.

WOW, thanks for all that @smallglassbottle ! And I am glad you're doing well! I agree about the false positives too, and for this reason, I will never go for a breastscreening. No cancer in my family at all, and no reason to think I will get it. (I know it has to start somewhere, but I am a low risk, don't smoke, not overweight - much - and don't drink alcohol.) Very active, go for daily walks and walk 35 miles a week during them. Do lots of gardening, get lots of fresh air.

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They keep bombarding me with screening stuff. The bowel kit goes straight in the bin. The breast screening appointments they make, I didn't ask for them and don't attend. No cervical screening since I was in my 40s. The only thing I agree to is an annual blood test and I do my own BP monitoring. I'm not interested in anything else. If I get cancer I'll decide at the time whether I'll have treatment. I carry the gene for late onset alzheimers so need to make sure I don't live too long anyway.

I have upper GI, liver and pancreas problems (likely related to nd, but that's not widely recognised, so trying to explain it to them is pointless) and the BP meds gave me a duodenal ulcer which started bleeding just before Christmas. The GP was going mad because I refused to go to A&E. I told her if it perforated at least I wouldn't have to cook Christmas dinner 😂 it eventually settled down and I'm still here. I've had half a dozen scans for gallstones which they never find 🙄 I just want to be left alone now. I can treat most stuff at home and would know if I was ill. All this endless screening throws up false positives and my local hospital breast screening service is currently being investigated for causing harm to patients (wtaf?!). Yeah, definitely won't be going there.

@AgitatedGoose THAT is the kind of thing I am talking about. This weird desperation to force people over 60 into scans and tests and screenings, and to have things shoved up their arse and down their throat, and to have multiple vaccinations! Often when there is NOTHING wrong with them, no symptoms of anything and no pain or anything. It really is like they are trying to find things.

It's like at 59, you're a healthy spring chicken full of life, youth, and vitality, and as soon as you hit 60, you're a knackered old codger! 'We have to be extra vigilant when people are over 60' one doctor said... Why? 60 isn't that old. Tests and screenings and vaccinations galore, and being told off like a naughty schoolchild if you refuse.

I know some people over 60 who have refused prostate exams, bowel screening, breast-screening, cervical smears, and other 'tests' and 'screenings.....'

One woman I know has not had a cervical smear since she was 53. She is now 61 and they are still badgering her to have one, and the GP is 'annoyed' that she has refused it, and also the bowel screening test, and breast screening, AND vaccinations for shingles and flu. Why do they get so annoyed when you don't comply? 🤔

I know another woman who had blood tests as she was having runny stools and stomach cramps, and it turned out she had a gluten allergy. (Coeliac disease.) The GP said she needs to remove gluten from her diet - obvs! But they 'referred her' to a Consultant ... She travelled 40 miles to the hospital the appointment was at, and wasn't seen until an HOUR after her appointment. As soon as she sat down in front of him, he said 'right you have coeliac disease, first thing I will do is book you in for a colonoscopy (camera up the bum,) and also a camera down your throat so we can examine you inside.'

She said 'what? Why? Why do I need that doing? I have a gluten allergy, I just need to rethink how I eat and remove gluten from my diet.' He said 'yes but we need to see what's going on in there and if you need biopsies.'

tl;dr, she refused, and said she's having NOTHING shoved in her back passage or down her throat into her stomach. He said 'oh right then, well I guess this consultation is over.'

Most pointless waste of 3 and a half hours of her life (2 and a half hour round trip, and an hour in there, just to spend 3 minutes talking to this 'Consultant!') I bet he got paid £300 for that. For those 3 minutes he saw her and did fuck-all to help her.

Like you - @AgitatedGoose and many others on here, I have no wish or desire to be spending half my waking hours travelling to hospitals, and wasting multiple hours each time, when there's a 95% likelihood that there is nothing wrong with me.

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They are making money from keeping our loved alive with zero quality of life. My mother would never have wanted this