The system is rotten and fails the elderly - advice please!

[Lars_1708]

I’ve just found this website and appeal to you good people for some advice.

I’m not a carer as such, but I along with my siblings look out for my elderly mother who lives on her own, who is immobile and needs a hoist to use the loo and move to and from bed. She has several care visits a day from carers who the council found for us.

My mum has had various agencies, all of which are quite frankly inadequate, all happy to take the money but send untrained carers, sometimes not turning up at all but mostly very late.

A previous agency missed several visits, or sent 1 instead of 2 carers, and the general quality of care was poor. Untrained people tried to use the hoist and some carers were good but most pretty inadequate, some with a bad attitude. All agencies seem to have borderline abusive staff who talk down to my mum or say strange things that upset her. I was once verbally abused by one of the co-ordinators on the phone when I raised an issue. Every time there was an issue, such as late or missing care visits, we emailed them and copied in the council for an audit trail & never got any reply in writing to any of our queries, even when sending follow up emails. As we pay via the council, they just seem to charge the council what they were *supposed* to provide, who then just pass on that charge, likely unchecked, to us.

We then had new agency who were just as bad. Carers turned up an hour late regularly, one turning up at different times to the other. My mum got trapped in a hoist on one visit. They lost they key to her keysafe box. They didn’t seem adequately trained, or had a bad attitude & my mum is very unhappy. They have since withdrawn their services with no notice some time back when my mum was in hospital (are they actually allowed to do this? Seems like the council are powerless to do anything or interested to sanction them for such behaviour).

I’ve raised all these issues with Council Social services. They told me that the last care agency was fed up of us sending emails all the time and complaining, the result being withdrawl of the care package without notice. I said well, if they provided the care we paid for, we wouldn’t have to! And we have a right to complain for services we are paying for. They also said if we’re “always making trouble” then it’ll be difficult for us to find care agencies. I find this whole attitude unbelievable, and the system is rotten. Agencies take your money with apparently absolutely no accountability, and the council let them get away with it. When it gets tricky they simply withdraw care and cream off profit from some easier to deal with clients.

My mums condition is deteriorating (she could walk before) and we’ve also had many issues with NHS care, such as early discharges when not in a fit condition. Rehab wasn’t adequate and the NHS seems content for my mum to get worse as long as they don’t have to deal or with or pay for it.

If anyone has any advice to get a refund of the missing visits (council say they are looking into this, but despite no evidence to prove they did, as they have no logging system, the agency will probably claim they did provide the care on those occasions we know they didn’t – that’s assuming that the council actually do anything at all - recently they seem to have forgotten it all) and get better care for my mum, and how to hold the NHS, council & care agencies accountable, I’d really appreciate it. I understand that’s a big ask! I’m not sure if withholding some of the payment for what were missing visits is an option?

I'm terrified that no agency will go to see my mum ultimately and then the council will try to force her into a home.

Really sorry for the rant. Bit ashamed when I see all the far worse issues people raise on here, sorry. I feel like I have no-one to turn to, the system has failed my mum, and if nothing else, the comfort of people in the same predicament will at least convince me I’m not going mad! The whole situation is making my whole family depressed, as you can imagine.

[bowlingbun]

I could write a book on this subject.
Does mum have a written care plan? Have you seen it? Do you agree with it?
I suspect the local office are "burying" your concerns.
So to find out what is being said about you behind your back, write to the council and make a "Subject Access Request" i.e. copies of everything they have written about you on their files. They have 40 working days within which to comply.

[jenny lucas]

The trouble is, Lars, society doesn't rate care work as important or valuable (after all, only the 'weak and vulnerable' need it!) (and society doesn't rate the weak and the vulnerable highly either!), so of course the quality of care workers is going to be low.

There are far too few people being care-workers (would you be one 'willingly'? I wouldn't, not the way the system is now!), far too high a demand and that will only increase.

Care for the elderly is TERRIFYINGLY expensive (my MIL pays a hundred pounds a DAY - effectively it pays THREE teams of care-workers, ie, for 24 hours at 8 hour shifts each).

Society simply is not facing up to the problem, and worst of all, is not doing anything like enough to stop the current 'pre-care' generation to stay health enough not to NEED such intensive elder-care in the first place. The difference is staggering - my 93 y/o MIL has advanced dementia and is helpless. My SIL's sister's MIL is also 93 and lives completely independently still except her son takes her to the supermarket as she's just a bit frail. Totally mentally sharp, totally mobile.

Yet they are the same age. So what makes one 'helpless' and the other 'independent' when my MIL was, up until four years ago, equally independent (it was the dementia turned her helpless....)

None of this is any help to you ,but I think my main point is that since we treat care-workers so 'crappily' (in low respect, low wages, etc etc etc) we can't really be 'angry' when they don't do the job that we want them to do - the job that, also to be blunt about it, allows US to have OUR lives. I go down on my knees in gratitutde to the care-workers at my MIL's care home. Without them she'd be with me, and my life would be OVER.

[Lars_1708]

I could write a book on this subject.
Does mum have a written care plan? Have you seen it? Do you agree with it?
I suspect the local office are "burying" your concerns.
So to find out what is being said about you behind your back, write to the council and make a "Subject Access Request" i.e. copies of everything they have written about you on their files. They have 40 working days within which to comply.

Fabulous, just the advice I needed - thanks bowlingbun! I shall look into that. We've seen the careplan, it's actually OK, just that the agencies don't seem able to follow it. I am sure they are saying allsorts, once they said something about family delaying hospital discharge - bet that's in there!

[Lars_1708]

None of this is any help to you ,but I think my main point is that since we treat care-workers so 'crappily' (in low respect, low wages, etc etc etc) we can't really be 'angry' when they don't do the job that we want them to do - the job that, also to be blunt about it, allows US to have OUR lives. I go down on my knees in gratitutde to the care-workers at my MIL's care home. Without them she'd be with me, and my life would be OVER.

Point taken, and I agree, in a world where rip-off bankers and fund managers are paid millions, such an important job is undervalued, and a low wage won't attract the best staff. Having said that, I know some agencies don't make much, but I'm sure someone, somewhere is making a nice fat profit from this. It's wrong that care is provided at the whim of profiteers who will just take what work suits them. They should be held responsible, not so much the individual carers, who I'm sure are mostly trying their best in difficult circumstances (although some I've met ...)

I'm certainly going to think about my own care provisions a lot, that's for sure.

[MrsAverage]

Hi Lars,
With Mum deteriorating ( and no one recovers from old age, sadly) maybe it is time to consider residential care and start looking at Homes?
I often think that when mobility goes then being effectively imprisoned in ones own home, often in just one room, must be terribly boring whereas a Home has people to socialise with, and, importantly, has staff who are regular and turn over less than agency staff.
Just a thought
Kr
MrsA

[Lars_1708]

Hi Lars,
With Mum deteriorating ( and no one recovers from old age, sadly) maybe it is time to consider residential care and start looking at Homes?
I often think that when mobility goes then being effectively imprisoned in ones own home, often in just one room, must be terribly boring whereas a Home has people to socialise with, and, importantly, has staff who are regular and turn over less than agency staff.
Just a thought
Kr
MrsA

Yes you've definitely got a point there, we have been thinking about this, as mum is as you correctly surmise bored and lonely. Mum went into one as a respite but had a bad experience. and as she's fully mentally capable, has been very clear that she doesn't want this at all, so it's hard to look into this. Plus we fear a home would be even worse for her, especially in the area she lives, and she's going to run out of money soon so we'll be at the mercy of the council and will only be able to afford what they offer.

[MrsAverage]

It needn't be a Home near where she lives. My father in law was funded by Sussex for a Home in Gloucester. If you find a place social services are pleased because it saves them the trouble. If mum is already in one room, does it matter where that one room is? Close to family who can pop in regularly is best.
However just search the forum for "top ups" and start learning about finance issues. The red tabs on the carers UK website are very good, as is age uk website

[Lars_1708]

It needn't be a Home near where she lives. My father in law was funded by Sussex for a Home in Gloucester. If you find a place social services are pleased because it saves them the trouble. If mum is already in one room, does it matter where that one room is? Close to family who can pop in regularly is best.
However just search the forum for "top ups" and start learning about finance issues. The red tabs on the carers UK website are very good, as is age uk website

I think the problem with that is we'd all like to be close to her (at the moment, we are all within a hour or so of travel), and she'd be really upset by being far away. Don't want to go into too much detail about location, I'm sure you understand I don't want to be identified, but I think you get the gist of the situation. Good point about the 1 room. I think she feels more in control in her own flat. In a home, she's seen that she's even more at the mercy of others. Not even being able to pick TV channels in the common room, while watching the attending nurse ignoring resident's requests and completely suiting herself, for example.

I will have a look at that forum. Many thanks for your thoughts MrsAverage

[christina 17]

Hi Lars,
When my mum was having care workers come in from a care agency, including council when discharged from hospital- they had to write in a communication book in mum's house and also in my house when she came to live with me.
The care workers had to write time of arrival and time finished. The caring job that they did and any concerns and what they did about it.
On a few occasions the first agency in mum's home did miss some jobs and when I phoned about it, it was denied.
Then I would go to mum's house and leave my car elsewhere in the street, go and see mum, then tell mum I was doing jobs upstairs for a short time and then I would come downstairs to keep her company again after the careworkers left.
Mum never told the the careworkers I was upstairs, she had speech difficulties anyway and spent a lot of her time sleeping.
On some occasions I would find the care plan was not followed. I would phone the agency, who would deny it after speaking to the care workers and then I said I was actually in the house and knew the job had not been done. (Such as toilet not checked and cleaned, incontinence pads bin not emptied, cup of coffee not made and given to mum etc) and the half hour stay not always adhered to, as it was agreed in the care plan, that if all jobs were done, then the remaining spare time was to chat to mum.
The agency did then apologise and things did improve but would lapse occasionally.
I was lucky or you could say mum, that these occasions did not happy too often but I made sure to say to the company that I thought that that the company as a whole and the care workers were doing a wonderful job and I am sure that it was just a rare slip up as I wanted to recommend the agency to friends. This may have helped to let them know that I valued their help to look after mum.
Mum and I probably were lucky tho in that any problems didn't persist.
But I knew I couldn't totally relax and had to be around on occasions to keep an eye on mum's care.

Wishing you all the best.
Christina.