Direct payments and evidencing needs funded for 15+ years?

Hi everyone,

Just wanted to see if anyone is in the same boat here as my brother currently is. He has advanced multiple sclerosis and a number of other health conditions that make daily life a real battle for him.

He’s had the bulk of his care paid for by the councils through the direct payments scheme for almost fifteen years, although the family top it up on a daily basis too. His needs are significant but haven’t increased at all over the last few years (thankfully).

He was due an annual direct payment review in March, which usually go by without any issues and everything just carries on as established. Oddly they didn’t bother to make contact with him, until two weeks ago and have now been out to see him/us and have basically said they suddenly intend to cut his care package.

After a few very angry phone calls, we’ve pretty much been told that if he wants to prevent cuts he needs to have his carers document absolutely every mortal thing they do for him and how long it takes them to do each task and present it to the social worker at some point in the future to “validate” and “evidence” the needs to justify the ongoing funding.

On one hand I can see where they’re coming from, as it’s public money that needs to be spent right, but on the other hand it feels so ridiculous. After fifteen years they’ve never once asked for anything more than a verbal explanation of what support he needs/receives and they’ve gone away with that and secured funding for another year without a problem. Now suddenly they decide they want documentation to break down his every need by the minute?

I can’t help feeling this is all a ploy to try and find some way of justifying cutting his care costs, by saying “we won’t pay for this/that’s not a valid need” etc. His PA’s don’t mind compiling a list of what they do in a day, as every penny he’s given for care is used for support that’s vital to his wellbeing. However, I just feel it’s so petty to make a man who’s got a condition that is only going to decline over the years he has left, sit and worry that he’s going to lose his care and support, if someone random social worker who doesn’t understand his situation properly decides his needs don’t match up with his funding rate any more.

I have no doubt the council will find some way to dismiss his needs to one degree or another, especially as they haven’t seemed to document them in such detail before. It all seems fishy and “nitpicky” and like they are on a crusade to take vital support away.

He didn’t ask for a reassessment, his medical professionals didn’t and neither did his PA’s or any of his family, so why on earth are the council now completely re-evaluating his care after so many years? His GP can’t understand it and says he thinks it’s “cruel” to do this to him. I don’t understand it and I’m extremely frustrated and upset to see him and his PA’s worrying about their futures and living in some kind of limbo.

I guess I just want to know if the council really get away with making someone who has a long term established need, with funding set at a certain level for fifteen years, suddenly have to bare all to prove they’re still worthy of what they’ve been getting?

Hoping someone else here can perhaps give me some ideas on how to navigate around a situation like this so I can help him and the people who care for him keep things as they have been for fifteen years. Our family is aging now and it’s unlikely any of us would be able to provide him the day to day care he’d need if his funding is cut.

Thanks for taking the time to read.

Someone else here needed to compile a list of activities their caree needed assistance with. It was a recent post. I haven’t been able to find it but perhaps another person will be able to recall where it is?

Yep … that posting is elusive … tried several without any success.

Plenty of external links describing the role of a family / kinship carer … but NONE do us justice !!!

Does CHC / NHS Continuing Healthcare enter the frame here … given the caree’s condition ?

Main thread … colour coded as an attempt to keep it reasonably accessible :

As for the " Cutback " in LA support , another victim joining the several million already out there ???

One VERY interest article on this aspect from Professor Luke Clements :
Challenging demands to repay direct payments – Luke Clements

Well worth reading in the context of this thread.
( Now a separate thread : )

Your family shouldn’t have to subsidise him.
His care package should only be cut if needs have reduced, which with MS clearly they won’t. Does the person hassling the family understand the nature of MS?! In Hampshire, they are replacing qualified staff with unqualified staff to save money, the ignorance of some beggars belief. One parent of a child with Down’s Syndrome was asked “When did he catch Down’s?”!!!
Are you aware of NHS Continuing Healthcare - all care needed free from the NHS. It is a postcode lottery I’m afraid, but worth investigating.

There’s a post by Jenne_1907, July 23, 2019, Daily Care/Support Duties… What do you do?

I seem to remember the post including a whole long list of activities of daily living, so there may be another post with that in it…

This one , Rosemary ?

Further to my earlier post, it’s easy to find out if someone is a qualified social worker.
Just go to the HCPC website, and there’s a search facility, you just use a drop down menu to search for a social worker, then you type in the surname.

That’s the one Chris, thanks.

To compile the list I suggest you look up Activities of Daily Living (ADL). One link is given below.

Many ADL articles relate to the American system but the concepts are applicable here too. Don’t minimize that the carers check for safety, hygiene,sanitary state of person and home, even if its not explicitly stated in the records.

Carers provide some social interactions too for those who don’t go out often or at all.

More akin to paid care workers than family / kinship carers ?

No mention of the doctoring / nursing skills many of us do automatically … nor the whole zoo of emotional issues which we tackle
without consulting the various textbooks on offer out there.

In addition , ALL carer / caree relationships are unique … one cannot define a " One size fits all " blueprint as the postings on this
forum clearly reveal.

One of my carees is in the same boat as you say , has a high direct payments budget as he literally cannot do anything, very severely disabled.
Everything was fine he was happy living in the community, an excellent care team which he had for years in a nice flat.
Suddenly the council come along trying to shave a few hours off his care plan, you don’t need this, you don’t need that.
Same as you his carers filled out years of activity logs, sent off to the council, as per the direct payments rules, 20 years of no problems.
he has a live in carer over night in case of issues e.g needing to go to to the toilet or even worse a fire or something.
Suddenly the council are wanting to put in a night call system, he presses a button by his bed, they phone his carers, who have to get out of bed jump in the car etc, instead of going down the corridor.
Would save the night care costs.
Or would he like to go into care, theres a nice care home just down the road, his reply was unprintable on this forum.
Instead of helping and supporting independent living in the community, the council are trying their best to take his independence anyway, shove him in a care home.
And how about his team of carers dedicated carers who go the extra mile, would all be sacked basically.

This has caused a considerable amount of upset, it was the council who set this up in the first place to live independently in the community. He had been in care/institution for almost 30 years.

They give you a good life on a plate then try their best to take it off you when it costs too much.

all I can say is Care Act Advocacy, local legal rights-Citizens Advice, its really unfair but the councils are cutting costs, they just can’t afford high care packages anymore.

Mae … it seems it’s happening everywhere sadly. my daughter’s PB has been cut right down and I am so sick of it all and supporting my 95 year old Mum too that I can’t even think straight. I just want someone to say “this is how it works. This is what your daughter is entitled to and they are not allowed to cut back like this.” i know that’s never going to happen though. I am brain dead most of the time and don’t have the strength to argue with SW’s any more.

I wish I could help you more but there are much more knowledgeable people on here who will. Not much help am I? Xx

Thank you all so much for your insightful replies and useful links. It will all come in handy, I’m sure.

I totally agree. He’s never going to get better, he’ll only get worse from now until his last day. All this stress is already having a massive impact on his condition, and his mental health. I just can’t believe they can get away with doing this to people.

The social worker was a grade A+ asshat, absolutely no idea about how MS can vary dramatically from one day to the next, and couldn’t take a minute to understand my brother’s needs at all. Literally couldn’t care less, the words “value for money” and “reducing costs” were mentioned a dozen times, but no time taken to understand why the care package is so big. I was really disgusted with the SW. I think they came with the “new broom sweeps clean” attitude and wanted to perhaps make a name for themselves by saving the council a massive amount of money. The proposed cuts would barely leave my brother enough support to have a shower and a cooked meal every day, which is just unacceptable and I cannot understand their logic at all.

He had the CHC list completed by the specialist nurse, the social worker in question (who is my brother’s allocated social worker) didn’t even show up to the meeting. Sent someone to cover for him and report back, a junior SW by the look of it, who didn’t even know my brother had direct payments. The whole thing is a disaster. He’s one B shy of qualifying for the assessment, so not much hope for CHC unfortunately.

I’m in half a mind to call in/email and ask for a real explanation of why they’re asking for all this evidence now, after fifteen years and when they know his needs haven’t/won’t change. Every time I’ve asked the SW’s they don’t give a straight answer. I guess because I’ve heard they’re not allowed to seize care funding based on cost cutting alone, so they have to deflect away from admitting that’s what this is all about.

This is exactly my brother’s situation. I am amazed (but saddened) to find someone else is in the very same boat.

He has night time care too, which is part of what they want to remove and replace with the call system. I don’t agree with that, as it’s not suitable for his needs, but I can kind of understand how they might want to know exactly what happens overnight to justify the costs of on site care over calling out for it, but to quibble over his vital daily support too is just ridiculous.

I believe this whole call system imitative has come in as a direct result of that court case about having to pay carers better for working through the night. That in itself is shocking that they’ve basically found a loophole to get away with paying (already underpaid) people what they deserve for supporting folks during the time they should really be sleeping. It seems scandalous to me that because the powers that be said “pay your staff more”, the councils have put their heads together to find away to avoid doing it.

Care homes have also been mentioned to my brother, as a cheaper alternative, and he hit the roof! No reason for him to be in one, and I’m certain he would deteriorate rapidly if he did, but the threat is looming and it’s worrying him to death.

My brother’s carers are wonderful and have gone above and beyond for him, sometimes staying with him beyond their paid hours until one of us can get to him and take over. We don’t want to lose them, as they have been with him now for going on ten years and we’d be hard pressed to find better support. They are the perfect balance of professional but friendly and dedicated, but if these cuts come in, there is no way they’d be able to continue working for him because their income would be a fraction of what it currently is and they’d need to find alternative employment. So the flexibility my brother needs for his condition wouldn’t be met and I know we’d struggle to find anyone who can adapt to his needs fluctuating so freely as the people he currently has on staff.

I know belts need to be tightened, but in our council especially, there are plenty of other places to shave off some fat that won’t take advantage of the county’s most vulnerable and those who are literally relying on the funding to stay alive and well. The whole situation needs exposing to the press or some watchdog or another, but I just don’t know where to turn to make a real stink over it.

I will look into the advocacy , and see if they can help. It’s at the point where I’m considering consulting with a lawyer as I just don’t know how they can get away with doing this to people. They know most people don’t have the ability to fight back and question changes, but the more people don’t, the more they get away with it. It’s sickening!

Please let me know if there are any developments with your careers case, I hope they can avoid having the cuts thrust upon them.

I can’t imagine how hard that must be. This is what they count on - people being too tired to fight. People not being able to afford to drag things through the courts, if it comes to that. They get away with treating carers like crap because they know most are so burned out from trying to survive they just can’t fight back. They shouldn’t be allowed to take care/support away or even question it unless there’s been some significant kind of change in need or circumstances. I’ve really come to dislike social workers in recent years, as I haven’t met one in a while who wants to do anything but cut costs for the council. There seems to be so little care and consideration from them these days.

Oddly, it helps to know someone else understands what it’s like. I have a sister who battles for my brother all the time, but we sometimes feel like we’re in a bubble and that no one else gets the difficulties there are with having a disabled relative. I hate that we’re all in a sinking boat when it comes to keeping our loved ones afloat with the help they desperately need and should be able to rely upon without scrutiny.

There was an article in one of the papers that literally hundreds of people with illness’s like MS etc are forced to live in care homes as the council can’t or won’t provide the care.
This isn’t elderly people, disabled in their thirty’s / forty’s.

The council just can’t or won’t provide the care or no suitable housing, so care home is the only option.

my carees package is with the night care over 100 hours a week, I would guess £10 an hour, that’s about £1000 a week, over £50,000 a year, he was I think very lucky to get this package.
But he still needs additional help from friends etc unpaid carers like me.

As I have said before on this forum my council NYCC are building big new extra care housing, 50 flats, you get your own front door, 24 hour care on site, restaurant, communal lounge etc etc.

Instead of 50 people living in their own homes, living in one location, with a couple of carers at night instead of 50 individual night carers.

The council have to reduce costs, get better value for the pound, that’s what they are saying same as yours, they just can’t and won’t fund night care now, any one who needs night care is encouraged to move into the facilitys above.
These places are lovely brand new no worrys about draughty old flats, roof leaking etc, but means people having to leave their community and friends and move away.
Honestly I would be tempted to move into one literally everything is on site.

I don’t think you can force someone to leave their home, an englishmans home is his castle etc but by not providing extra help making it impossible for one to carry on living at home.
Real bad situation, I think in the end my caree may have to move to one of these facilitys, really don’t know.


I saw one of those articles in the Daily Mail about how some poor woman had an MS relapse and as a result was forced to move into a care home miles away from her family, because they couldn’t/wouldn’t adapt her flat, and now she’s left to rot in one room day in, day out with no support to get out to see other people. If I recall, she was only in her late thirties. It’s disgraceful.

The care package sounds pretty similar to my brother’s although his only totals around £35k a year, I guess due to the cost of care varying in area or the fact the council will only allow him to pay his PA’s minimum wage. Family still have to top up too, regularly, but every time we’ve asked for more support in the past we’ve been told “sorry, it’s already too expensive, you’ll have to manage”. Fair enough, we’ve not asked for anything extra, which is why I’m so confused and annoyed about them wanting to fine toothcomb what he’s been getting, when they’ve never bothered before. It’s so obviously just to cut their costs.

My brother owns his own flat which thankfully was adaptable, as prior to his MS taking a nasty turn he worked very hard to buy it and he does not want to give it up without a fight and he enjoys being as independent and free as he can be. I personally think the council are seeing the flat as a way to absolve them of paying for his care for a few years. But if he goes into a care home now, the value of the flat won’t buy him many years there, so they’re going to have to start picking up the tab eventually.

I think in some cases, these facilities can be wonderful and just what’s needed, but it’s not suitable for everyone and people shouldn’t be forced into sheltered housing/care homes purely because the council refuses to fund the care they need to safely live at home. If should be an option, not a necessity.

I have worked in care homes/sheltered housing in the past, running social groups for the residents, and I’ve been told some grim stories about life in those places, so I think it all depends on the person, their circumstances and the placement on offer. Unfortunately care isn’t a one size fits all solution, but the councils seem to be coming dangerously close to assuming this lately.

I believe local councils are on a crusade about changing the night time care purely because of all the court case business over backpay and improved pay for night carers. I would not be surprised if some legal eagle on the government’s payroll have told local councils to rush alternatives to individual night support into place before the supreme court ruling Feb 2020.

Chances are, there will be rules put into place as a result of that which force councils/care providers to pay night carers minimum wage AND an unsociable hours bonus on top, making it completely affordable. So it’s better if force in a shared night care scheme now, to avoid any potential fallout that would come if they do it as a result of the court ruling.

We are in a similar situation, about to go to panel and expecting a huge reduction in my 16 year old sons DP package as a ‘reflection of his changing needs’ which actually havent improved. He is bigger older and more challenging but apparently it’s not ‘age appropriate’ for him to stay at a family members home when the family member is a PA, and we need to use the payments to pay an agency worker instead. Why would I do that when the family member has adapted their home and loves my son? Apparently reducing his package will enable him to gain independence?
I’m not sure how sitting at home again with exhausted parents will support him to achieve greater independence? So so worried… :dry: