Strange thing - MIL refused private cancer operation due to dementia?

[jojo2018]

Hello all,

I hope you've had a good week, despite the challenges I know many of you face.

Something strange happened with my MILs care this week and I wondered if anyone could help shed some light on it.

She has bone cancer (6 years of successful ongoing treatment underway), vascular dementia (early stages but worsening over the months), and recently a lump which turned out to be breast cancer. Sadly we found out she does not have the right hormone receptors for treatment in the form of pills for the breast cancer, so was put on the NHS waiting list for an operation.

In really bad timing, despite OH and I having extended our trip here for 3.5 months now, the operation was scheduled for the actual day of our flight back. With desperate need to get back to our business, we asked to pay to bring it forward even by just 2 days - and by going privately we were able to do that. A pre-op and private operation were scheduled, we booked flights for some distant but lovely relatives to fly in and be there for her after we left, and all was well...

... until we got a message to say that after calling my MIL and realising that she had no idea about the operation and her dementia was worse than they thought, they no longer advised doing it, and said the NHS would be better for us. They have put us back on the NHS waiting list (3-4 more weeks) and have booked a meeting with us for that time.

My OH has POA, and he had explained about her dementia from the start, and they met her and agreed everything - even booking it in and sending us reminders - so I am really confused about why this one phone call with her changed everything?? Also why would the NHS be better for us? Why would they effectively refuse a private cancer operation for someone with dementia??

If anyone can shed some light on this I'd greatly appreciate it.

Thanks,
J x

 

[Helly68]

There may be something about the NHS having better backup, in terms of emergency services and possibly elderly care, than some private providers. In my experience, some private provider concentrate on "standard" procedures in low-risk patients and it may be that they have decided (belatedly and without proper communications) that your MIL doesn't fit this category.

 

[jojo2018]

There may be something about the NHS having better backup, in terms of emergency services and possibly elderly care, than some private providers. In my experience, some private provider concentrate on "standard" procedures in low-risk patients and it may be that they have decided (belatedly and without proper communications) that your MIL doesn't fit this category.

Thanks for responding - so it might have been a risk issue? I guess she isn't low risk in terms of what can happen afterwards if they give advice and she forgets... Frustrating that they didn't consider that when OH explained about her dementia though!

 

[canary]

You are right that there could be a problem with aftercare. Is she on her own? If so, she will need a care package for when she goes home (even if the op goes smoothly and there are no problems) which will also need organising, Most NHS hospitals employ a Social Worker who can assess them for care before discharge and should arrange it before they go home, but I shouldnt think a private hospital does.

Also, someone with dementia can respond badly to an anesthetic and can develop delirium. If this happens she could be in hospital for a lot longer than planned. This could be a problem if she is in a private hospital.

 

[jugglingmum]

Private hospitals aren't set up to deal with anything going wrong, so don't do high risk cases, they don't have high dependency or intensive care on site. Similarly the rooms are often set up hotel style, so there wouldn't be the close supervision which exists in the NHS of putting someone by the nursing station. Better to have the op in an NHS hospital than an ambulance trip to an NHS hospital when they can't cope.

Personally I would only choose private for myself if it was a low risk routine procedure.

 

[Kevinl]

I'm surprised they even agreed to do the operation in the first place, this place is full of stories of people having a sharp decline after a general anaesthetic which may or may not last.
As has been said private hospitals don't have access to all the things the NHS does, most NHS hospitals have social workers on site, the NHS has much easier access to mental health care if someone does decline and need extra care after an operation because they're part of the NHS.
Even the NHS can struggle with someone with dementia after an operation when they become a "bed blocker" how can the private sector deal with that other than to charge you the daily rate and ask you to involve social services. The NHS don't like taking on the private sectors problems and why should they?
I suspect that as the operation approached someone had a reality check and asked what would happen if they hit post op dementia problems which as I say are all too common.
Maybe the anaesthetist had a first look at the file and asked if it was a good idea or just someone who knows that big operations on people with AZ can often end up in tears had their say.
The public sector don't seem to like engaging with the private sector and if you have the money to pay to go private or you're a very large private healthcare provider then you can sort out your own problems seems to be the attitude, you're the ones with the money the NHS is strapped for cash right now.
As I say I'm really surprised they took the case on in the first place and it may be for the best that they've finally come to their senses and said no, with all its huge resources the NHS struggles to deal with people who have AZ in a hospital situation, the private sector, I believe, is too risky as either you'll have to pay for all the extra care which could be a fortune or you'll have to try and integrate back into the NHS who won't really want to know.
K

 

[jojo2018]

You are right that there could be a problem with aftercare. Is she on her own? If so, she will need a care package for when she goes home (even if the op goes smoothly and there are no problems) which will also need organising, Most NHS hospitals employ a Social Worker who can assess them for care before discharge and should arrange it before they go home, but I shouldnt think a private hospital does.

Also, someone with dementia can respond badly to an anesthetic and can develop delirium. If this happens she could be in hospital for a lot longer than planned. This could be a problem if she is in a private hospital.

Thanks for responding, yes she's alone and we stay with her only when needed. That all makes more sense now x

 

[jojo2018]

Private hospitals aren't set up to deal with anything going wrong, so don't do high risk cases, they don't have high dependency or intensive care on site. Similarly the rooms are often set up hotel style, so there wouldn't be the close supervision which exists in the NHS of putting someone by the nursing station. Better to have the op in an NHS hospital than an ambulance trip to an NHS hospital when they can't cope.

Personally I would only choose private for myself if it was a low risk routine procedure.

Thanks for responding, we just assumed private would be better (as well as more flexible in timing) but that's really important to know. X

 

[jojo2018]

I'm surprised they even agreed to do the operation in the first place, this place is full of stories of people having a sharp decline after a general anaesthetic which may or may not last.
As has been said private hospitals don't have access to all the things the NHS does, most NHS hospitals have social workers on site, the NHS has much easier access to mental health care if someone does decline and need extra care after an operation because they're part of the NHS.
Even the NHS can struggle with someone with dementia after an operation when they become a "bed blocker" how can the private sector deal with that other than to charge you the daily rate and ask you to involve social services. The NHS don't like taking on the private sectors problems and why should they?
I suspect that as the operation approached someone had a reality check and asked what would happen if they hit post op dementia problems which as I say are all too common.
Maybe the anaesthetist had a first look at the file and asked if it was a good idea or just someone who knows that big operations on people with AZ can often end up in tears had their say.
The public sector don't seem to like engaging with the private sector and if you have the money to pay to go private or you're a very large private healthcare provider then you can sort out your own problems seems to be the attitude, you're the ones with the money the NHS is strapped for cash right now.
As I say I'm really surprised they took the case on in the first place and it may be for the best that they've finally come to their senses and said no, with all its huge resources the NHS struggles to deal with people who have AZ in a hospital situation, the private sector, I believe, is too risky as either you'll have to pay for all the extra care which could be a fortune or you'll have to try and integrate back into the NHS who won't really want to know.
K

Thanks for all this info I realise there is a lot we don't know and hadn't even considered. They said the op was straight forward but for someone with all her complications mentally and physically I think we were naive to not question that. We are actually looking at a specialist dementia care home because we're all struggling and my MIL has started getting to that point where living alone is more of a risk than a benefit to her. Thanks again for your response x