The Dementia Tax

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Do you agree with Mrs Mays so called "dementia tax"?

Poll ended at 28 May 2017, 10:03am

Yes
7
32%
No
15
68%
 
Total votes: 22

Cyril Haearn
Posts: 15215
Joined: 30 Nov 2013, 11:26am

Re: The Dementia Tax

Post by Cyril Haearn »

Plus One for thread resuscitation
I thought that was my speciality :wink:

Maybe the politrickians thought they could sneak it through when no-one was looking
Entertainer, juvenile, curmudgeon, PoB, 30120
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djnotts
Posts: 3037
Joined: 26 May 2008, 12:51pm
Location: Nottingham

Re: The Dementia Tax

Post by djnotts »

I think all can agree it is a very difficult subject. There is certainly a huge disconnect between health and social care, both financially and in expectations. The latter relies on professionals and massive expenditure, the latter on amateurs and the paid but low skilled and peanuts. A month ago herself was discharged with untreatable cancer to home and my care. The hospital discharge was on assumption - almost on condition - of 3 Soc Care visits per day as starting point and an immediate Community Nurse visit. Post code lottery rules dictated otherwise - 4 days for a nurse, 3 weeks for any Soc Care (for which I had expected to pay and had offered so to do, but because "emergency" and terminal counts as continuing health care is apparently free). The cynical might say that 7 hours a week at notional cost of c. £15 per hour is cheaper than critical care bed at approx. £1000 per week - had I not been here (or indeed simply refused) then she could not have come home.
I suppose however hard we try to be objective and rational our views are clouded by experience and subjective. I don't mind paying, but at a certain stage there is no where for which to pay - very short of hospices locally and most Care Homes don't do the necessary nursing aspects. My impression is that end-of-life care is largely either state funded or "free" by family. Armed with the required paper work and reasonably good with forms, I applied for fast track enhanced Attendance Allowance of £80 a week - no response. We do not need the cash and I only applied because low take up makes scrapping it easier and TBH having never received "benefits" per se I saw no reason why we shouldn't. For some in our position the money would I am sure be very helpful at what is a very expensive time. It is no wonder that so many end up back in hospital - not where most would choose to die - at a much greater cost to the state, but free to patient and family. Place of death stats are quite revealing.

This disconnect needs addressing even if it means budget lines need merging. Soc and medical care distinctions are often blurred if not false - and will come increasingly so if the "aging population" trends continue. The next big financial burden will be COPD - NHS funding of relevant research shows that they are well aware of this - unlike e.g. asthma with drug companies funding research because it is treatable.

I am not expecting any political party to grasp this thorny problem in the near future....
Cyril Haearn
Posts: 15215
Joined: 30 Nov 2013, 11:26am

Re: The Dementia Tax

Post by Cyril Haearn »

Could have been solved in Russia
The male retirement age is to be raised to 65
Average male life expectancy is 65 :(
Entertainer, juvenile, curmudgeon, PoB, 30120
Cycling-of course, but it is far better on a Gillott
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djnotts
Posts: 3037
Joined: 26 May 2008, 12:51pm
Location: Nottingham

Re: The Dementia Tax

Post by djnotts »

Cyril Haearn wrote:Could have been solved in Russia
The male retirement age is to be raised to 65
Average male life expectancy is 65 :(


Actually won't/wouldn't solve. If expectancy 65 then many will be at best unable to work beyond say 60 - there will still be a "gap" between independence and death. Although increased longevity here will of course make that gap greater for a larger number of people.
thirdcrank
Posts: 36776
Joined: 9 Jan 2007, 2:44pm

Re: The Dementia Tax

Post by thirdcrank »

djnotts wrote:... A month ago herself was discharged with untreatable cancer to home and my care. ...


Best wishes here. I'd wish you good luck, but I doubt there's much around.
... terminal counts as continuing health care is apparently free. ...


That's all part of a big lottery. It's now just over three years since my sister-in-law was diagnosed with terminal cancer. Had she not been single, she'd have been discharged home, but she was transferred to a nursing home and awarded continuing care immediately. At one point she was back in hospital when the home couldn't cope and somebody said that she didn't qualify for a hospice bed. This reality was that there was no hospice bed available so qualifying didn't come into it.

That overlapped with my mother's final months. Admitted to hospital when the residential home couldn't cope, she was eventually transferred to a nursing home offering emi nursing. (EMI = elderly mentally infirm or loony in plain language.) She was awarded a fortnight's continuing care posthumously. I'd take some convincing that there isn't discrimination against people with dementia.
djnotts
Posts: 3037
Joined: 26 May 2008, 12:51pm
Location: Nottingham

Re: The Dementia Tax

Post by djnotts »

thirdcrank wrote:
djnotts wrote:... A month ago herself was discharged with untreatable cancer to home and my care. ...


Best wishes here. I'd wish you good luck, but I doubt there's much around.
... terminal counts as continuing health care is apparently free. ...


That's all part of a big lottery...….she didn't qualify for a hospice bed. This reality was that there was no hospice bed available so qualifying didn't come into it.

……. I'd take some convincing that there isn't discrimination against people with dementia.


I'll take ANY luck - thank you. And most certainly a lottery - the hospital on discharge is in Nottingham City and I suspect was assumed that same provision throughout the county - not so. Same for hospices. And I would not try to convince you otherwise when it comes to dementia - simply "best forgotten" seems to be the unspoken line to follow.
Mistik-ka
Posts: 505
Joined: 5 Feb 2012, 10:01pm
Location: Saskatoon, Saskatchewan, Canada

Re: The Dementia Tax

Post by Mistik-ka »

First, to djnotts, I add my best wishes to you and herself in the very tough time that lies ahead.

Mrs. M-k and I were not mature enough or properly prepared when it fell to us to care —eventually full-time— for 'our gran' in her last year when she died of cancer. When she died —at home, where she wanted to be— it took us a long time to recover … but in retrospect there was much in those increasingly demanding months for which I am now grateful (and which led to my subsequent career-change into health care.) I hope you both find unexpected rewards mixed in with the inevitable sadness and tribulation.

thirdcrank wrote:Legal permission will no longer be required to end care for patients in a long-term permanent vegetative state, the Supreme Court has ruled.
It will now be easier to withdraw food and liquid to allow such patients to die. ...

You ain't seen nothing yet.


Much, of course, depends upon the good will, patience, and wisdom of everyone involved, but when the professional health care team recognizes that it is their responsibility to care for the patient's family as well as for the patient, and when they recognize that the "health care team" includes the family, what used to be called "compassionate terminal care" and is now (if I have kept up with administrative buzz-words) deemed "end of life care" is often the kindest and most humane hospital experience many people will ever encounter.

There are still plenty of physicians around who are not well-practiced in kindness and humanity, but in my experience their numbers are diminishing. The team approach usually ameliorates the actions of the worst practitioners — there is usually a level-headed nurse to keep the offender in check. Some family decision-makers leave a lot to be desired … but again there is an effective safeguard when the decision to withdraw active treatment requires agreement by both the professional and family members of the team. No, unanimity is not always reached, but it has been by far the norm, rather than the exception, in my experience.

Adequate hospice space is a necessity. Personally I'd rather die sooner in a hospice than later in an acute-care hospital. "End of life care" may be the most important care there will be for many people, whether they die at home or in some sort of institution.

For some time Canadian doctors have been permitted to withdraw ineffective care from patients in a persistent vegetative state without resort to the courts, frankly I don't think it has resulted in a radical change. For years it was done quietly after extensive discussions with the family. If there was no family member to serve as "most responsible decision maker" then a patient might be made a ward of the state and the case put forward that continuing treatment was truly not in the patient's best interests … as far as anyone could tell (which is, of course, the best we can do). I have never known the decision to be forced or made because of a bed shortage in the hospital. Yes, patients were moved out of Intensive Care to a ward bed when the ICU could do nothing to improve the patient's condition, but care was continued on the ward until and unless there was family agreement.

I don't recall a single case from our hospital ending in a dispute in court (though such cases have made the national news from time to time). I do recall a few occasions when one of the hospital's official Ethicists was consulted … and eventually a decision was reached which was acceptable to everyone. (The phrase "the wisdom of Solomon" comes to mind.) Sometimes it took a while.

Did we always get it right? Of course not. But the bean-counters could always be kept at bay with the knowledge that the overarching purpose of state health care is to make the government of the day look good, and the government never looks good when highly charged hospital cases get into the news.
thirdcrank
Posts: 36776
Joined: 9 Jan 2007, 2:44pm

Re: The Dementia Tax

Post by thirdcrank »

When I first raised this at the start of the thread, I made the comparison with abortion, which has now been quite routine for many years. What is considered the right thing has changed. I'm suggesting that something similar will happen with end-of-life. Otherwise, we will reach a situation with an increasing number of people lingering almost indefinitely. In this country, minds are being focused by the mounting cost of providing care for people whose personality is gone.

======================================================================
PS It's arguable that the requirement to refer the final decision to the Court of Protection has been preventing the "right" decision to be reached; not because the court cannot get it right but it's expensive to go there so the decision is less likely to be taken.
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Graham
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Re: The Dementia Tax

Post by Graham »

thirdcrank wrote:In this country, minds are being focused by the mounting cost of providing care for people whose personality is gone.

Perhaps our ideals hope for infinite resources to deal with fairness and human "rights".

The practicalities may have reached a point of "peak aspiration".
djnotts
Posts: 3037
Joined: 26 May 2008, 12:51pm
Location: Nottingham

Re: The Dementia Tax

Post by djnotts »

Thank you, Mistik-ka. And for a thoughtful discourse on the wider issue.

" I made the comparison with abortion, which has now been quite routine for many years. What is considered the right thing has changed. I'm suggesting that something similar will happen with end-of-life." I agree, but it will be very gradual. Partly of course because the medical professional tend to view it as the opposite of what they were trained to do - and many I think view an inability to prolong life indefinitely as some sort of failure. There is also the feudal hangover - essentially "we" are an asset of the Crown and to allow "death on demand" is a sort of theft (suicide a crime and the use of religious penalties to deter it).
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