Having your wheelchair turned off and pushed against your will is the equivalent of being forcibly restrained and carried and you have no ability to even struggle. It's all horrific. But that is...
Having your wheelchair turned off and pushed against your will is the equivalent of being forcibly restrained and carried and you have no ability to even struggle.
That is true, but in fairness to the NHS trust, for some patients who refuse to leave hospital when they are discharged (after a long debate about the discharge lasting many months and...
That is true, but in fairness to the NHS trust, for some patients who refuse to leave hospital when they are discharged (after a long debate about the discharge lasting many months and specifically in this case after a 10 month admission), they are forcibly restrained to be removed from the premises. Ultimately the hospital will need that bed to look after other patients. If she refused to leave hospital in such a situation then it seems a proportionate action to pus her wheel chair, and similar to the action that would be taken with a non wheelchair user.
I agree it is awful for her, but equally we don’t have the full facts (as is common in these news articles). I do believe it will at least partly be about money (although the hospital deny this), but that’s not unreasonable in my opinion. The cost of her care at home with 1 to 1 care is £500,000 a year. If a similar care can be provided with a nursing home at £90,000 a year, is that not reasonable question to ask in a resource constrained national health system? Is there a reason we should give her proportionally more resources than my relative disabled after a stroke? Equality here strikes both ways when other patients in need are the ones that suffer from less funding too.
Ultimately it is a question for health economics. The NHS uses quality adjusted life years (QUALY) to make that decision and values a year of high quality life at £30,000 for the sake of resource allocation. In this case the QUALY would need to be over 10 times as high to justify this difference in costs, which is clearly out of reach in this case.
To be clear, the QUALY cost is not a justification to leave someone to die from lack of care, as is the case here given the £90,000 cost of care in a care home, but it plays a role in helping to make decisions like these.
Removing someone from the premises isn't the same as taking them to a nursing home against their will. I don't feel any need to be "fair" to the NHS here. Per the article the law was not followed,...
Removing someone from the premises isn't the same as taking them to a nursing home against their will. I don't feel any need to be "fair" to the NHS here.
Per the article the law was not followed, no matter how many "sides" are presented. The NHS is explicitly saying it wasn't money and you seem to be saying it is and should be.
My partner receives home care services rather than being in a nursing home and he'd have died in a nursing home by now, so I'm probably the wrong person to argue that someone's quality of life has to be worth a particular amount of money. If that was true then he didn't deserve the last 20 years of healthcare and I'm not particularly swayed by that.
I would point out that the “unlawful” comment is from one barrister and is not a formal position of a court or official. I think the devil is likely in the details here and I’m sure the trust...
I would point out that the “unlawful” comment is from one barrister and is not a formal position of a court or official. I think the devil is likely in the details here and I’m sure the trust (hospital) will have taken legal advice before taking any action such as this. As such, I would say this is a side rather than a fact.
As you say the NHS trust say it’s not about the money, and the family say it is. The answer is likely the middle ground. Ultimately if you built a care home for one at her home her needs could be met, but at huge cost. Therefore on an abstract level it is always at the end about money and what is reasonable.
To be clear, I’m not saying that the NHS is 100% in the right here, but it’s likely more complicated than what it seems at face value.
Of course in an ideal world everyone would get absolutely everything they can for their health. However, rationing of health care has to happen at some level to balance different care needs. It’s a difficult subject with lots of research and opinions. But at the end of the day money spent on x can’t be spent on y, and with a finite budget there needs to be a way to balance those needs. Should you treat 5 severe hip fractures in the elderly, or treat one child cancer? Horrible questions for horrible situations. QUALYs are one method of doing that and to me it seems like a reasonable way of helping to guide difficult decisions in the absence of a better way.
I know this is something close to you personally and none of this is meant against you or your partner, and I’m certainly not saying your partner doesn’t deserve the healthcare they get.
If the law works as the article says it does, then they clearly didn't follow it. I'm not using the one solicitor's interpretation. I'm using the fact that they treated her as if she had no...
If the law works as the article says it does, then they clearly didn't follow it. I'm not using the one solicitor's interpretation. I'm using the fact that they treated her as if she had no capacity - they didn't apparently share plans with her, they didn't simply remove her from their premises, they placed her against her will and moved her there.
If it wasn't about the money, then it was about considering her incompetent and irrelevant as a person. If the law requires her wishes and social needs to be taken into consideration and the nursing agency could provide the care - but weren't even consulted... Yeah no. I'm not British, my partner's system works differently and frankly worse in many ways as round the clock nursing would not be an option here for adults, but the records, that he has full access to, show all of the communication between home nursing and the hospital. It's all documented.
The NHS shouldn't be underfunded. You're talking about 50k people in the whole country receiving this level of care. There will always be people whose care costs more than others. That just has to be accepted or you're going to run straight into letting disabled people die because their lives are worth less.
Regardless, turning off someone's wheelchair is like turning off your legs. Like taking away your glasses and demanding you be helped around and helped to read. It's a clear signal of her mistreatment to me.
It's very sensible to say that if there's only so much money to go around, everyone should get an equal share of it. But the question of how much money is allocated to health care out of the total...
It's very sensible to say that if there's only so much money to go around, everyone should get an equal share of it. But the question of how much money is allocated to health care out of the total is often less asked. And beyond that, what the total budget is for the nation, and why it is what it is. The UK's NHS has been wildly underfunded for decades now. This has been an intentional choice to cut care back over and over again. At which point telling people that it's only fair for them to accept drastic cuts to their quality of life because there isn't enough to go around anymore is inherently ignoring most of how we got here.
I would absolutely agree the NHS needs more funding, we can definitely agree on that. But I wouldn’t know how to know how much to allocate either, other than compared to other countries. You can...
I would absolutely agree the NHS needs more funding, we can definitely agree on that. But I wouldn’t know how to know how much to allocate either, other than compared to other countries. You can sink unlimited amounts in healthcare and you will get some gain. Life is hard to allocate a cost to, and hard to compare to other aspects of life and government expenditure. I don’t think there is an easy right answer for how much we should spend on healthcare.
If we’re talking about efficiency, I’d start by asking how the 1:1 “24/7 nurse‑led home package” the article mentions can be costing more than twelve median full time nursing salaries?! I’m often...
The cost of her care at home with 1 to 1 care is £500,000 a year. If a similar care can be provided with a nursing home at £90,000 a year, is that not reasonable question to ask in a resource constrained national health system?
If we’re talking about efficiency, I’d start by asking how the 1:1 “24/7 nurse‑led home package” the article mentions can be costing more than twelve median full time nursing salaries?!
I’m often the one defending the NHS on overall cost efficiency - their outcomes per unit cost are impressive compared to a lot of other healthcare systems, and a significant chunk of the problems we see are a function of just hitting the absolute limit when it comes to lack of resources - but the £9,000-12,000/week number on this one doesn’t seem to add up at all.
I agree it does seem high. Perhaps it’s partly health specific needs such as tracheostomy related (more nurse training) and equipment , and perhaps the location/nature of the house. It’s probably...
I agree it does seem high. Perhaps it’s partly health specific needs such as tracheostomy related (more nurse training) and equipment , and perhaps the location/nature of the house. It’s probably provided by a private company offering it in the community with a profit margin too.
Interestingly that the bbc have issued a correction at the bottom of the article. They originally quoted £8-16,000 rather than 9-12,000 so presumably the new figure has been fact checked.
Yeah, I can quite believe it’s accurate to what they’re paying, and I expect it is contracted out to a private company. That’s very much the problem, as I see it. You’re not wrong to say that...
Yeah, I can quite believe it’s accurate to what they’re paying, and I expect it is contracted out to a private company. That’s very much the problem, as I see it.
You’re not wrong to say that sometimes in a world of finite resources we need to make tough decisions about how they’re allocated - but the NHS’s whole reason for existence is to provide those resources at cost, to avoid being beholden to the maximum profit the market will bear.
If we’re looking for an outcome that preserves the maximum of dignity and wellbeing for the maximum number of patients, I think we have to start at “is there a way to provide that at a more reasonable cost?” rather than taking the current figure at face value and jumping to “hard tradeoffs have to be made”.
That’s a reasonable option for system level change, and I would agree with you. I guess I was more thinking of how to address it in the current system.
That’s a reasonable option for system level change, and I would agree with you. I guess I was more thinking of how to address it in the current system.
This is my job and so commenting using full sentences and structure feels too much like work, so I've just scratched out some key points: a news story like this will always be missing information...
This is my job and so commenting using full sentences and structure feels too much like work, so I've just scratched out some key points:
a news story like this will always be missing information from the health care org's side. Even though the NHS is speaking about the patient in this article, the language is very vague because they cannot share personal information about the patient. Sometimes a decision makes sense once you learn the details, but in this case, we (the public) will never know those details.
that being said, health care administrators can and do make some truly insane patient care decisions. And they are almost never thinking about some grand theoretical "What is fair in a resource constrained system?" (It is more like the way @Greg described it: "is there a way to provide that at a more reasonable cost?”)
They're usually following some policy but policies leave a lot of room for interpretation, and wherever there is room for discretion, there is room for a human to completely miss the substantive aim of the policy.
Whatever policies they are going by are often outdated or (more often) don't account for the particular circumstances of the patient in question. This results in patient care decisions that follow policy, but together amount to very bad patient care outcomes.
And finally, diffusion of responsibility is a constant issue for people like this patient who might be an n of 1, and who might not fit into the neat categories of types of patients and the types of care those patients need, or the amount of care hours needed. With complex care patients (which this patient appears to be), there seems to be a constant struggle where administrators enforce policies (with little regard for the disruption it causes the patient) while at the same time claiming they are not the originators of the policy, and so cannot do anything to change it. Essentially, different parts of the health care system point at each other and say "It's their policy, we're just brutally enforcing it."
and one more thing I haven't seen mentioned by anyone else yet is that this patient is only 33, and nursing homes are designed and run with the elderly in mind, not younger disabled people. The activities, the food, the amenities will cater to elderly people. It is also an institutional setting, so it is run according to the schedules and needs of the staff, giving very little agency to its residents. I could not imagine living in one as a 33 year old. I wish I could give some examples of how disabled people have their autonomy stripped away in these settings, but I'd have to anonymize them and I'm too tired to do that right now. It's like kindergarten.
I'm not arguing with you @therebegold, I'm just pointing out a phenomenon in many of our societies. I agree with your description and how we "all" agree with it. My point is that this is bonkers!...
I'm not arguing with you @therebegold, I'm just pointing out a phenomenon in many of our societies. I agree with your description and how we "all" agree with it. My point is that this is bonkers!
and one more thing I haven't seen mentioned by anyone else yet is that this patient is only 33, and nursing homes are designed and run with the elderly in mind, not younger disabled people. The activities, the food, the amenities will cater to elderly people. It is also an institutional setting, so it is run according to the schedules and needs of the staff, giving very little agency to its residents. I could not imagine living in one as a 33 year old. [...] It's like kindergarten.
It's baffling to me how this is seen as reasonable living conditions for young and old people while outrageously undignified for non-senior-adults.
We need a radical change... Children are people! Elders are people!
Having your wheelchair turned off and pushed against your will is the equivalent of being forcibly restrained and carried and you have no ability to even struggle.
It's all horrific. But that is visceral
That is true, but in fairness to the NHS trust, for some patients who refuse to leave hospital when they are discharged (after a long debate about the discharge lasting many months and specifically in this case after a 10 month admission), they are forcibly restrained to be removed from the premises. Ultimately the hospital will need that bed to look after other patients. If she refused to leave hospital in such a situation then it seems a proportionate action to pus her wheel chair, and similar to the action that would be taken with a non wheelchair user.
I agree it is awful for her, but equally we don’t have the full facts (as is common in these news articles). I do believe it will at least partly be about money (although the hospital deny this), but that’s not unreasonable in my opinion. The cost of her care at home with 1 to 1 care is £500,000 a year. If a similar care can be provided with a nursing home at £90,000 a year, is that not reasonable question to ask in a resource constrained national health system? Is there a reason we should give her proportionally more resources than my relative disabled after a stroke? Equality here strikes both ways when other patients in need are the ones that suffer from less funding too.
Ultimately it is a question for health economics. The NHS uses quality adjusted life years (QUALY) to make that decision and values a year of high quality life at £30,000 for the sake of resource allocation. In this case the QUALY would need to be over 10 times as high to justify this difference in costs, which is clearly out of reach in this case.
To be clear, the QUALY cost is not a justification to leave someone to die from lack of care, as is the case here given the £90,000 cost of care in a care home, but it plays a role in helping to make decisions like these.
Removing someone from the premises isn't the same as taking them to a nursing home against their will. I don't feel any need to be "fair" to the NHS here.
Per the article the law was not followed, no matter how many "sides" are presented. The NHS is explicitly saying it wasn't money and you seem to be saying it is and should be.
My partner receives home care services rather than being in a nursing home and he'd have died in a nursing home by now, so I'm probably the wrong person to argue that someone's quality of life has to be worth a particular amount of money. If that was true then he didn't deserve the last 20 years of healthcare and I'm not particularly swayed by that.
I would point out that the “unlawful” comment is from one barrister and is not a formal position of a court or official. I think the devil is likely in the details here and I’m sure the trust (hospital) will have taken legal advice before taking any action such as this. As such, I would say this is a side rather than a fact.
As you say the NHS trust say it’s not about the money, and the family say it is. The answer is likely the middle ground. Ultimately if you built a care home for one at her home her needs could be met, but at huge cost. Therefore on an abstract level it is always at the end about money and what is reasonable.
To be clear, I’m not saying that the NHS is 100% in the right here, but it’s likely more complicated than what it seems at face value.
Of course in an ideal world everyone would get absolutely everything they can for their health. However, rationing of health care has to happen at some level to balance different care needs. It’s a difficult subject with lots of research and opinions. But at the end of the day money spent on x can’t be spent on y, and with a finite budget there needs to be a way to balance those needs. Should you treat 5 severe hip fractures in the elderly, or treat one child cancer? Horrible questions for horrible situations. QUALYs are one method of doing that and to me it seems like a reasonable way of helping to guide difficult decisions in the absence of a better way.
I know this is something close to you personally and none of this is meant against you or your partner, and I’m certainly not saying your partner doesn’t deserve the healthcare they get.
If the law works as the article says it does, then they clearly didn't follow it. I'm not using the one solicitor's interpretation. I'm using the fact that they treated her as if she had no capacity - they didn't apparently share plans with her, they didn't simply remove her from their premises, they placed her against her will and moved her there.
If it wasn't about the money, then it was about considering her incompetent and irrelevant as a person. If the law requires her wishes and social needs to be taken into consideration and the nursing agency could provide the care - but weren't even consulted... Yeah no. I'm not British, my partner's system works differently and frankly worse in many ways as round the clock nursing would not be an option here for adults, but the records, that he has full access to, show all of the communication between home nursing and the hospital. It's all documented.
The NHS shouldn't be underfunded. You're talking about 50k people in the whole country receiving this level of care. There will always be people whose care costs more than others. That just has to be accepted or you're going to run straight into letting disabled people die because their lives are worth less.
Regardless, turning off someone's wheelchair is like turning off your legs. Like taking away your glasses and demanding you be helped around and helped to read. It's a clear signal of her mistreatment to me.
It's very sensible to say that if there's only so much money to go around, everyone should get an equal share of it. But the question of how much money is allocated to health care out of the total is often less asked. And beyond that, what the total budget is for the nation, and why it is what it is. The UK's NHS has been wildly underfunded for decades now. This has been an intentional choice to cut care back over and over again. At which point telling people that it's only fair for them to accept drastic cuts to their quality of life because there isn't enough to go around anymore is inherently ignoring most of how we got here.
I would absolutely agree the NHS needs more funding, we can definitely agree on that. But I wouldn’t know how to know how much to allocate either, other than compared to other countries. You can sink unlimited amounts in healthcare and you will get some gain. Life is hard to allocate a cost to, and hard to compare to other aspects of life and government expenditure. I don’t think there is an easy right answer for how much we should spend on healthcare.
If we’re talking about efficiency, I’d start by asking how the 1:1 “24/7 nurse‑led home package” the article mentions can be costing more than twelve median full time nursing salaries?!
I’m often the one defending the NHS on overall cost efficiency - their outcomes per unit cost are impressive compared to a lot of other healthcare systems, and a significant chunk of the problems we see are a function of just hitting the absolute limit when it comes to lack of resources - but the £9,000-12,000/week number on this one doesn’t seem to add up at all.
I agree it does seem high. Perhaps it’s partly health specific needs such as tracheostomy related (more nurse training) and equipment , and perhaps the location/nature of the house. It’s probably provided by a private company offering it in the community with a profit margin too.
Interestingly that the bbc have issued a correction at the bottom of the article. They originally quoted £8-16,000 rather than 9-12,000 so presumably the new figure has been fact checked.
Yeah, I can quite believe it’s accurate to what they’re paying, and I expect it is contracted out to a private company. That’s very much the problem, as I see it.
You’re not wrong to say that sometimes in a world of finite resources we need to make tough decisions about how they’re allocated - but the NHS’s whole reason for existence is to provide those resources at cost, to avoid being beholden to the maximum profit the market will bear.
If we’re looking for an outcome that preserves the maximum of dignity and wellbeing for the maximum number of patients, I think we have to start at “is there a way to provide that at a more reasonable cost?” rather than taking the current figure at face value and jumping to “hard tradeoffs have to be made”.
That’s a reasonable option for system level change, and I would agree with you. I guess I was more thinking of how to address it in the current system.
This is my job and so commenting using full sentences and structure feels too much like work, so I've just scratched out some key points:
I'm not arguing with you @therebegold, I'm just pointing out a phenomenon in many of our societies. I agree with your description and how we "all" agree with it. My point is that this is bonkers!
It's baffling to me how this is seen as reasonable living conditions for young and old people while outrageously undignified for non-senior-adults.
We need a radical change... Children are people! Elders are people!