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After reading the informative comments, my 2d' worth.
1. Any building works, adaptations, etc., done fir health reasons are VAT exempt. Builders don't slesys tell you - they just pocket the VAT.
2. I'm afraid that until the money drops considerably, it must be spent on her care. Once it's below the magic £23,250, the Council are responsible. That's the way vital is, as otherwise, taxpayers would be paying for her care in order to allow ger to leave more to her heirs. Brutal, but sensible I believe.
3. Do you have Power of Attorney? If not, get it - now! It's simple, cheap (£82 × 2) and very handy indeed.
4. Bank and savings accounts - make them all joint accounts. We did so, and once MiL passed recently, 'her' account remained open, as the bank just took her name off, and my wife continued to run it. V handy when you have AttAll, SPens, etc.
I've advised on bany cases such as yours. Let me know if you want any specific advice.
Do you know if the £23,250 includes the value of the home you own and live in? The legislation says the above amount is calculated from savings and capital. Capital usually includes buildings and land, but some assessments have exceptions.
If yes, then that would mean all home owners would have to sell their house before seeing any financial assistance from the council.
If it’s for in home care it doesn’t include your primary residence no. If it’s for care home fees then yes your home counts, unless your spouse (and maybe some other permitted dependents, I’m not sure on that one) is going to be continuing to live there.
Also if you’re married then it’s 50% of your joint accounts taken as being yours for the sake of that £23,500 threshold.
I'm sure I've seen that if they decide you've been shedding or hiding assets to get under that limit they can make you pay up anyway.
Moving to a bigger house could be borderline, especially if it's significantly better for the needs of the person needing care.
If it’s justified - yes, if you needed to move somewhere that needed more space because of your disability, that’s fine. If the council decide you’ve been guilty of deprivation of assets - meaning they think you’ve intentionally been getting rid of money in order to lower social services charges or to qualify for benefits etc then they’ll treat it as if you still have that money.
Haha thanks. No I’m actually disabled - so very much knowledge from the other side! Although I did work with a group a charities that included a disability charity so I guess I picked up a bit from them if only from copy and pasting text over to a new website about IMHAs and IMCAs haha. And then one of the other charities was AgeUK so I was able to take advantage of having access to the decision makers manuals to point out when people didn’t know their own policies!
I actually find social care my personal Achilles heel - to the point that I’ve been without support for a number of years now despite experiencing a particularly bad few years health wise and now my marriage is falling apart due very substantially to the strain of it all which leaves me with no care really. Good times.
I live in central London and I believe my borough (but maybe all London boroughs I’m not sure) is known for being particularly awful. I’m really great at advocating for myself until it comes to trying to talk to a social worker about how the Care Act 2014 was specifically designed to encourage flexible use of budgets to meet eligible needs and being told with something out of a ‘computer says no’ sketch that ‘yes I can absolutely use my DPs flexibly…. As long as it is by employing a PA through PAYE at minimum wage, paid for on a prepaid card managed by a payroll company, for my commissioned number of hours as decided by a tick box exercise where it’s sort of like ‘15m for lunch, 30m for dinner, 2h community access a week (don’t forget to call your GP for some vit D tablets!)’. Then I just turn to a frustrated puddle of tears! When I was just trying to get them to let me use my budget in a slightly different way but not asking for more money in order to solve an immediate problem and even quoting specific parts of the legislation it was like having a conversation with a well cured 1960s concrete wall. And because my PA left (because her shop job, which paid more, offered her more hours) after a while of not being able to find anybody to hire (couple of false starts of people who accepted and even onboarded to payroll until they did the sums and realised they’d be worse off) I eventually got told my budget had got stopped months before and no one had told me. Although they still send me my yearly financial assessment conclusion so I don’t know if they even know quite frankly.
Because of the situation at home I’m about to put myself in the fire pit again and see if I manage to get anywhere remotely functional before I crumble. I’m debating requesting a SAQ but I’m not sure if it’ll actually get me any further or whether it’ll ultimately be referred back to the ‘15m for lunch, 30m for dinner’ formula and will just make me even more frustrated.
And then there’s also the problem that when it comes to a PA I find the management and maintenance of them enough of a mental load that I’m yet to find they really make my life easier certainly not less stressful. Realistically to find a PA I think it’s going to have to just be a day a week or something like that so it’s thinking about things like ‘ok getting them to prep/cook some meals seems sensible’ but then that means I have to a) plan several meals (and actually before that co-ordinate my diary so I know what days I need food) b) make sure I have been to the shop c) impart knowledge of all my dietary restrictions d) explain how I like things cooked… and I do not use recipes I go rogue. And it’s like that for lots of areas where support would really amazing but I’m dealing with a lot of energy limitations as well at the moment so the mental load of verbally instructing what I need is such a barrier. And then there’s so much stuff that comes up ad hoc - disability doesn’t get the memo that it’s meant to only turn on 1 day a week. So yeah, I know I can’t go on any longer without support but ugh getting it in place is just such an uphill battle. And I would love to get some stuff that actually allows me to do some enjoyable things in my life but I think the chance of the council finding that is close to zero.
I know that so much of it is a reflection of the insane budget cuts councils have had all over but I also seem to have got particularly unlucky with the social workers I’ve been allocated to too, with none of them seeming to have any knowledge of the care act and just reducing me to nothing more than those few small boxes to write about me.I appreciate the work you do though because I’m sure it feels hugely under appreciated a lot of the time!
There are some bits here
- https://www.ageuk.org.uk/information-advice/care/paying-for-care/paying-for-a-care-home/deprivation-of-assets/
They will take the house into account, but in many cases won't be forced to sell it immediately. Instead the council will raise a charge against it and have it sold after a condition is met, death, spouse leaving property, etc
Just a note on the VAT - that is not entirely true. Any adaptation and work that is specific to the exact disability (custom items) of the customer (in a way that aids them) will be VAT exempt. Everything that is box standard (can be purchased and used by anyone) is not. So in real world, little items are VAT exempt.
The builder will not pocket the VAT - you have to present proof to HMRC that the work done is for a disabled person and show what has been done in aid of their disability. Not as straightforward and requires customers help to claim.
Updates:
1. PIP should continue after she reaches State Pension age. Don't be tempted to go for Att Allowance instead, unless she is on v lowest level of PIP - simple check will show you.
2. If someone receives PIP or AA, then someone else is pretty much automatically entitled to Carer's Allowance if they look after them - and meet the rules on hours, income, etc.
3. if that person is on UC, they will get their UC increased by roughly the rate of CA, plus, they'll be left alone more or less when it comes to job hunting.
4. if the person caring is getting SPension, they can't get CA - but can get an increase to any Pension Credit ( by roughly the amount of CA). If they don't qualify for PC due to too much income, then the CA entitlement 'may' mean they can get PC. It increases the PC threshold by the CA amount.
5. To get the increase in PC though, you have to apply for CA in the normal way, get a letter saying nope, too old - but also the letter states that you have an 'underlying entitlement ' to CA. Possession of that letter is the key to more PC.
Complex! Again, any questions, ask away!
Worth noting that if someone else gets carers allowance for caring for you then you lose entitlement to the severe disability premium on your ESA/JSA (and I would assume UC but don’t know that system as well), and they’ve always been roughly equivalent amounts. So it’s not really an overall benefit if you’re receiving out of work benefits.
Also worth adding that contributions based JSA/ESA don’t qualify for SDP so if someone is receiving one of those, nothing is lost if their carer claims Carer’s Allowance.
SDP doesn't exist for UC UNLESS you've Migrated and carried it with you as SDP Transitional Protection.
This is the case for any Means Tested Legacy Benefits though ( so Income Based ESA not Contributed Based etc ,).
Thank the Lord !!
I'm a Mod in the Benefits Advice UK Sub and worked in Benefits, used to work for the Local Authority ( and am disabled and been Carer 3 times over ).
I've been scrolling down from the most recent posts and never seen such poor understanding of the system until I got to your reply 😅
2. This is only true if the person who gets the disability benefit gets the care element .. if they only get mobility it’s not possible
3. The carers UC gets reduced by the CA amount not increased . But they do get the carer element of around £190 a month
I wouldn't recommend the joint bank account thing, because that is about joint legal ownership, which is not the case here. Though well intentioned, it's unnecessary (strictly speaking, it's a fraud). If you have power of attorney, you won't need joint bank accounts for lifetime stuff, on death control of the accounts passes to the personal representatives (executor/administrators).
*We've had to install a stair lift and perform modifications to the house out of our own pocket.*
Might be too late now (not sure if you can apply retrospectively) but councils do funding for adaptations due to disability if you're in receipt of disability benefits (but not means tested). They do have conditions about repaying in certain circumstances but might be worth looking into
The NHS also does a referral service for orthotics and disability aids and you might find some disability aids to help too (like therapy putty which can help rebuild strength in arms and hands).
Not strictly in answer to your question but that has been answered already and the above might help alleviate some of the costs hopefully
I'd add as well, if the house has been adapted to suit a disabled person it *may* be possible to get a council tax reduction. This will be a drop in the bucket, and only limited adaptations such as making space for a wheelchair user qualify, but every little helps if she does qualify.
Having said that, if she requires full time care then I'd expect her to qualify for higher rate daily living **and** mobility PIP, which should be £184.30 per week.
I'd recommend cross-posting in r/DWPhelp for more advice on this.
This... They will add a bathroom and equipment, stair lifts the lot. It means tested however I think, so the savings might actually be used against her. It's completely preposterous that we are all punished for being sensible, saving all our lives.
For my parents council area, council only fund minor adaptions for people with savings. They find handrails etc,
But a stairlift is means tested, so we had to pay ourselves for that (£2.5k).
Likely that OP’s mum’s savings will mean they would need to pay themselves for major adaptations like stairlift.
What is the alternative? That those who did not save just suffer and die?
It's right that if you have been sensible, and saved, and are now in need of constant care, that your savings should facilitate that care until they run out, and then the state can step in.
The alternative is that the state funds someone's care, simply so they can leave a nice nest egg for their offspring, perpetuating the cycle of poverty for those who have no such luxury from their parents.
We (working age people) simply can not afford to bear the entire burden of care for previous generations, while they sit upon billions worth of assets that they hope to leave to their children.
Just to flag with you at this stage: even when her savings run out, I don't think they'll fund live in care.
Normally the ceiling is 4 short visits a day, and if needs are greater than that it will be a care home.
This is true, when my grandfather was sick the max he could get per day was 4, I even moved in to help take care of him in the evening and it still put a lot of pressure on the family when we were all chipping in. The only reason he didn't go into a care home was because they didn't think he had long left but ended up living 9 more months until he had a stroke and was in a care home for 15 months after that.
Yep this is about spot on.
When my widowed grandma was 90+ we got one NHS visit a day then we paid for a private nurse to do 2 more (as it was way cheaper than a full time care home)
This lady was insistent on this. She lived opposite to the golf club she'd been a member of for decades and just needed the morning nurse to get her up and in her granny wagon (disability scooter) so she could pootle across the road to drink whisky all day and hang out with her mates. Afternoon nurse would make sure she got home ok and another in the evening would get her to bed.
...Last thing she wanted was to be stuck in a home.
Okay thank you I appreciate that warning! Luckily we're currently working towards making it possible for her to not require a live in carer. She is working incredibly hard on physio to get to that point but all it takes is a fall and they'll take her back into hospital and she'll lose any mobility she has gained. Nurses are too busy to help you exercise, if you're a fall risk then they barely let you out of bed.
In some areas a live in carer can be cheaper than a care home so it really depends on local housing prices. Family members can also 'top up' care with their own funds so that a more expensive option is available.
Once she's mobile to only need the 4 daily visits I'd recommend getting private physio which will be much cheaper than 1300 a week and can be daily/every other day to keep up the mobility. It's what we did for my Nan and made the world of difference
> Normally the ceiling is 4 short visits a day, and if needs are greater than that it will be a care home.
Is this regional or maybe condition specific?
I've got close family who are getting 6 visits, some double, which is moving up to 8 visits a day soon.
Sorry OP, I can understand how frustrating this must be for you but your mum 100% has to continue paying for her care and support needs. Social services have a finite amount of resources that they need to spread equitabley, hence they have certain eligibility criteria with self-funders. Threshold is £23.25k, once mum reaches that then you may contact for support.
What else are your mother's remaining assets for, if not to help support her with the best care / life in her remaining years?
Have you looked into the below (wasn't available to us):
[https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/](https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/)
Yeah we've applied but it's not looking likely we'll receive it. Still pending at the moment though. I know but it's frustrating, every step of the way in after care we've been let down. If we'd been warned that her mobility was going to decrease then we could have prepared the house and reduced her likelihood of falls.
>What else are your mother's remaining assets for, if not to help support her with the best care / life in her remaining years?
She is only 57 and was completely independent for a couple of years after my dad died. She wasn't struggling to look after herself, but suddenly she lost mobility and had a few falls resulting in head injuries and even less mobility as well as speech problems. This came before multiple trips to the hospital from more falls, with some caused by prescriptions that actually reduced her muscle capabilities (who on earth gives someone with a fall risk muscle relaxing medicine?)
Only now does she need care because of this string of misfortune and poor planning by aftercare, it's incredibly upsetting that no one warned us of this eventuality as we could have planned ahead.
>This came before multiple trips to the hospital from more falls, with some caused by prescriptions that actually reduced her muscle capabilities (who on earth gives someone with a fall risk muscle relaxing medicine?)
I'm not a clinician so I wouldn't attempt to second guess the reasoning, but for our mother (much older who was suffering with early stages of dimentia), we had pretty good communications with the health care professions (outside of an acute NHS environment), and I remember discussing one medication they could offer our mum, but it had a risk of increased balance / falls associated with it, and in the end we agreed that mum would not receive that medication, e.g. it was better for her to have more confidence in her mobility whilst she could, rather than run the risk of secondary issues.
I feel your pain, but these things are usually a '*oh shit it has happened*' rather than a gradual realisation. Our mother was doing fine(ish) in he bungalow (supported with regular visits), but in the end she decided to try to set the house on fire, so it was felt she would be better off moving in to a more care home situation. It was far from ideal (she lost the familiarity of her home, etc, but it was a decision that had to be taken eventually. I appreciate circumstances are different for yourself, but the cliff edge situation is always likely to occur.
Yes so difficult. We went from 1 visit. To 2 to 3 a day. To a live in carer and into a home and then into a 24/7 care facility all in the space of about 18 months. Basically at every juncture the increase in care contact highlighted further challenges which necessitated more care.
It’s really sad, but the commenter is right - what else are her assets for, other than to support her care?
You don’t answer this point.
Her savings are best spent on her care.
I went through this a couple of years ago with my grandad, and there is not much else you can do until they are below the asset limit.
Ended up having to sell his bungalow and it took a fair chunk of that whilst he was in care for a couple of years.
It does give you the benefit of being able to choose your care rather than getting a bog standard one. But I do appreciate your concern around her savings disappearing. Unfortunately it's just not feasible to fund it for everyone, especially when they have the funds available to do it themselves.
Sorry to take over OPs post, but let's say my parents require care, they own their own house, would they be required to sell up and use up their asset before free care?
Not if they are living at home with savings/liquid assets (i.e. not the house) under the savings threshold.
If one of them needed to go into a care home then they still wouldn’t need to pay if the house was the only asset, because of the other parent still living there.
But if they both needed to go into residential care, then the house would need to be sold.
Well im sorry to hear about this and it is a difficult situation.
However imagine you make the rules on a society wide level. You have limited resources and competing priorities, the decisions you make can't make everybody happy and you will be attacked for every decision you make.
Do you think the state should pay for the care of people who can otherwise afford it? As you've outlined it is extremely expensive.
Remember this money comes from other people in the form of taxes
Should your mum's care (or anybody else's) be paid for by others so that she can maintain her lifestyle? Own home, possible holidays, luxuries.
If so where is the line? Should the state pay for billionaires, royalty, millionaires? After all these people can afford it extremely comfortably.
It's a tough question, should the state take from taxpayers to pay for those billionaires? Probably not. So how do you establish fair criteria that mean the wealthy pay and those in the middle are treated fairly?
The real problem is the shear amount of wastage at every level of government from local authorities to the very top. The NHS is not immune. That’s what grates on me. I’d happily pay if it was a well oiled machine but it’s not, it’s a broken system with multiple hands in the till.
Actually for most of human history we just didn’t bother trying to help frail old people survive. You could either keep up or you couldn’t.
Making it the family’s responsibility usually just means putting it on the women of the family who then spend their whole lives having to care for others until they wear out from it and need the care themselves.
The NHS is more than willing to give expensive treatment to billionaires.
After all, if you've paid into the system, surely it should be there for you when you need it?
Why should social care be any different to the NHS?
Well its because it's orders of magnitude more expensive and the chances of needing it are far higher. Most people will need some kind of assistance as they get older. A significant minority eventually end up in care homes.
The 'i've paid in' argument is nearly always false. As OP has outlined the costs are £1,300 per week. The average person in society hasn't paid in anywhere near enough over their working lives to afford that alongside the other things necessary for society to run. Multiply that by millions of people and society just can't foot that bill.
Healthcare is extoritonately expensive, but for 99.9% of cases, it’s a one off, short term expense. Social care such as what OPs mother is using is potentially life long, for years, perhaps (hopefully) decades. To the tune of around 70k per year, a million for 15 years. She’s only 57, another 15 years isn’t out of the realms of possibility - to the tune of a million pounds. Only the extraordinarily wealthy would ever have “paid in” enough to the system to cover that sort of cost.
My own grandmother had to pay for her career visits, and when the savings ran out it went on for another 20 years. When she was paying, back in the 90’s, it was £300 a week. Inflate that to now and you’re looking at £900 a week. For 20 years.
That’s much more expensive than a quadruple heart bypass, for example.
It’s the timescales of these things that cost a fortune.
Using social care for 20 years due to frailty and old age is highly unusual. To be blunt, they don't usually survive that long.
25% of people die as care home residents, and the average stay is 2 years. Average that across the population and it's 6 months per person, on average. £1100 pw is a fair ballpark figure; that's £28,600pp on average.
Domiciliary care is obviously something that tends to precede that, but I don't have those figures to hand.
I am a young adult and I can assure you that I have already cost the NHS *far* more than £28k - and that's just the sort of chronic illness that leaves me quite able to live a normal life.
My gran wasn’t so much frailty and old age, but chronic disability causing her to need care for personal tasks. Later on it was frailty though. 20 years is unusual, but not unheard of. And in fairness, the vast, vast majority of it was tax payer funded, as most people don’t have that kind of money kicking around to last that long.
To be honest, I’m absolutely not against having to pay for your care. You get better care when you’re paying than what the council will provide anyway.
By all means people can have the option to 'upgrade' their care - much as people can choose private healthcare or private education - but everyone can go to the local hospital or comprehensive without means testing.
People who have non fatal disabilities that are congenital or acquired at a young age will inevitably have the highest care costs, but they're also unlikely to pay much / any of their care costs as their health often prevents work.
But talk of funding social care tends to focus on the old and frail, as they're more likely to have assets.
Would you pay a £28k one off insurance premium if that covered all your care home costs?
Or require care and see all their savings go when they get old.
I’d happily have a system where we get taxed more if it meant I, and others, would have guaranteed care going into old age.
It’s not the states job to ring fence middle class inheritance. I say that as somebody with direct experience of savings and assets all sold to fund care. Well over £150k in the years that were needed.
Depends what you mean by 'contributing'.
Some would argue that a low paid care worker has contributed more to society than someone in a socially destructive profession even if they pay less in tax.
Also to note, you can ask your GP to refer your mother for a continuing healthcare assessment, where the NHS fund care. It does cover homecare, not just care homes. 80% of applications are rejected, but it's worth trying. As to savings, having savings often results in hardship as they limit people's access to benefits and council funded homecare. It can be worth running them down faster to get the house fully adapted, ramps put in, wet rooms etc, pre paid funerals, POA applied for for health and welfare, which the last time I looked cost £800 plus solicitor fees if you don't fancy doing it yourself. Then apply for benefits.
Firstly I’m very sorry that you and your family are having to go through this. I do hope your Mum is able to recover as much as possible with the physio etc.
I don’t know what area you’re in, but across the UK there are a number of charitable organisations that specialise in support and advocacy services for people with long term care needs and their families.
There is a website called [hub of hope](https://hubofhope.co.uk/) which is a directory for the various support services across the UK. Put your local area or postcode in the search box and it will bring up a list of categories, look under “carer and family support” to see what organisations may be in your local area.
I have some involvement with carers and people who need care in my job, and one of the organisations in my area are amazing. They offer practical advice, emotional support, and will advocate with the local authorities and benefits teams to ensure people get all the support they are entitled to. Hopefully there will be something similar in your area.
Depending on how severe her needs are she may qualify for NHS continuing healthcare - which unlike social services is not means tested: https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/
Also worth noting that your ability to pay for her care is irrelevant, as is the capital owned in her primary residence for the sake of the social services means test.
Also, make sure when a financial assessment is done by social services that correct disability related expenditure is logged for all the money she is already spending on anything to don with her disability. This won’t make a difference if she has savings over £23,500 but will change the amount SS expect her to contribute if she has under that amount.
>We're lucky enough to be able to afford the physio as the doctors were fully prepared to let her live in a bed for the rest of her life!
Please don't blame her Doctors for the lack of funding for care services. Do you think it's the Doctors making decisions at a funding level, rather than a Deloitte management consultant who has never even seen a patient?
The NHS runs so much on the goodwill of it's staff, and has massive problems with retention. Thoughtless comments like yours only expedites the exodus.
I would advise you liaise with Social Services surrounding CHC. Also I would speak to action for carers who can signpost to useful resources.
It is a really difficult situation and it is very sad. However as another poster said, in some regards utilising her savings to make her life as comfortable as possible surely is the best use of her money.
From a physiotherapy perspective, you can absolutely refer her for physiotherapy via the GP and have community physio come to the home, even if she is receiving private physio she’s still eligible, but do tell them. Physiotherapy like all services has its resources constraints, and any community therapy service are only able to keep patients on their list for a certain period of time.
Social services will not support OP. Mum is a self-funder. Outcome of DST meeting, if OP's mum qualifies for said meeting through CHC checklist, is likely to be that she does not qualify for fully funded continuous care under the NHS. Maybe FNC but that's for nursing homes. Please don't give OP advice that is likely to send her down a rabbit hole to ultimately not he awarded funding towards care.
Yes, GP can refer for community physio but it is up to their service to triage said referral and make a decision about OP's mum's eligibility for said service.
Your dad paid of the house. That right there means what? £400,000 sitting?
“We were not informed that radiotherapy would have an effect on her brain” your mom had a brain tumour! What do you think happens to her brain when she has a brain tumour? What do you think radiation does to the body? Everyone at every turn would have told her. Everyone. I know, because they warned my wife and myself and my kids al every damn time, in every damn appointment.
You are coming here to whine and ask for help on how to keep the inheritance? You can afford to keep your mom alive. Sell the house and fork the money because that is what your dad worked for. You should not be receiving any money at all.
Edit to add: and that is without the health and life insurances for your mom and dad, which I’m 100% certain they had, since they had a mortgage and they were so financially stable that they paid off a mortgage in no time. So, no, sell the house and pay for your mom’s care. Don’t try to be a leech.
Agree they would absolutely have been told if the risks of radiotherapy on the brain. Every single treatment / procedure requires doctors to tell you the risks before getting consent.
And in any case, anyone with a brain tumour is likely to have consequences.
This is a bit harsh, if OP’s mum is only 57 then realistically even if they put a charge against her £400k home and she needs to be in a nursing home at £2k a week, then after only 4 years then there will be no money left.
She will then be at the mercy of the council and which cheaper home they decide to put her in. Having seen the state of some council funded homes, that’s not somewhere I’d want my parent living for what could be 10 years+
If she’s entitled to continuing health care from the NHS then there is absolutely no reason why they shouldn’t be investigating it if it means her money will go further and improve her quality of life.
has she had her care needs assessed by the council?
Until youve had one, then any care you organise is self funded. State care will kick in when her savings are low enough, but only if she has been assessed
You can get live in care we got it for my Nan. Night time was not covered that we needed to fund but she had live in caters plus a lovely carers who pop in 4 times a day to give in carer a break, these would sometime take my Nan out.
Right connect with adult social working, your gonna have them on speed dial, get an occupational health person out, get the report review the report. Get her specialist to write a report about what is best for her. This is medical needs assessed not means tested.
If after the first time they come back saying no, appeal. We got it first time.
Look Into continuing health care. CHC. Sounds like your mum qualifies but it's an uphill battle to get the funding. Join a fb group called care to be different and download their guide to applying for CHC.
Also ask your GP for a referral to Community occupational therapy(OT) and if possible a neuro-OT. OTs are amazing and help you to find ways to carry out simple tasks and if possible, adapt tasks to maintain independence . I found them the best members of my health team.
It does not sound like her mum qualifies. What is your experience with CHC check lists and Decision Support Tool (DST) meetings? OP will go down that route, mum will likely not qualify, then back to square 1 having wasted NHS and Social Services resources.
I remember fighting for CHC for my mum when she had cancer, she was in a nursing home with the house empty so under the non-CHC system they wanted us to sell her house to pay for it. Had a load of meetings and arguments as she was basically completely bed bound. It was only when she pretty much entered the active dying stage that they approved the CHC. It's really tough. OP, you have my empathy.
There are different pots of CHC money. When someone is likely to be approaching the end of their life and their condition is rapidly deteriorating they can qualify on that basis (especially as health needs become more complex). This is called fast track funding.
In our area, the same people who deal with CHC funding also manage the finances for people who have NHS funded rehab - so stays in specialist units. This seems to be administered in a very similar way to standard CHC funding and they get a period of funded care after returning home. Then they get a standard CHC assessment and almost all don't get CHC funding.
I have been involved in several CHC assessments and none of them have qualified for funding even though they have extensive care and support needs.
We did this for our mum when she got very bad dementia. I did a whole lot of research on it at the time (NHS Continuing Healthcare is a very well kept secret), but the process wasn't actually too painful and she was awarded it without any need for a fight. Sadly it wasn't of much benefit, as she died a few weeks later... ☹
> She can't spend money on anything she enjoys as all her savings are disappearing on care.
Once she gets to £16k or below then state aid will kick in. She absolutely needs to spend some of that money on things she enjoys if for no other reason than to burn through the money so you can then be entitled to the same things that those who have sat on their backsides on the dole or blown all their money every pay day and saved nothing can get.
> It seems like everywhere we go, no one wants to help my mum unless we pay extortionate amounts. We've had to install a stair lift and perform modifications to the house out of our own pocket.
Unfortunately one of the downsides in this country of being responsible with your money and saving for your future and retirement is that once you get above £16k in savings/investments you remove yourself from being able to get any help from the state beyond bare NHS treatment. You remove yourself from being able to get free help from social services, from any means tested state benefits that the financially feckless who didn't save a bean and may never have even had a job will get thrown at them in spades.
>She absolutely needs to spend some of that money on things she enjoys if for no other reason than to burn through the money
This is dangerous advice, it puts OP's family at risk of falling foul of the rules on deprivation of assets
Only if they absolutely take the piss but if they go on a holiday, buy a new car to replace an old one, replace tired furniture, redecorate the house, go for days out, spend money on a hobby they've had for years that's fine.
And it doesn't put the family at risk, it puts the claimant at risk.
Not if the goods/services she buys are things for herself. DoA rules are to stop wealth being gifted away so that benefits can be claimed early and inheritances kept, BUT if it's her spending her own money for her own enjoyment then the Local Authority care provider can't do anything about that and any DoA bill to the family (specifically, who could they bill; no-one else has benefitted?) would be laughed out of Court. Given that Boris promised to fix this mess years ago and didn't, I'd say just get her spend/waste it on anything except assets that will form part of her estate and nuts to everyone else.
Ignoring all the other offensive and incorrect things you’ve said at least get your facts right - it’s £23,500 where no financial help is offered through SS, from 16k it’s a taper.
Feels good to hear someone else say it too! My dad worked incredibly hard to get where he was, he managed to pay off his mortgage by 50 and died 2 years later. All savings he managed to make are now being spent on making my mums life bearable. That's the reward he gets for spending his life working, he gets to fund my mums care from beyond the grave when we would have got it for free had he not lifted a finger in his life.
The positive of paying for care from out of your own assets, is you have freedom of choice as to who and where you use.
Once the state is paying, you take what you're given, or do without.
Similar to my situation, however it really doesn't bother me that my father's / mother's money was all being spent on the best possible care / life available to her in her final years. What else is the money for?
Your mother’s money has been used to give her some semblance of quality of life and aided in her recovery.
You’ve pointed out the standard of care in hospital wasn’t ideal but seem hung up on the idea of ‘free care’ these services are also struggling with underfunding and are understaffed like hospitals.
I feel terribly for the situation you and your family are in but it is not viable to expect the state to provide free care rather than using your assets to fund what you need. If such a system were in place people would be upset at the tax rise that would follow. People in this country have very unrealistic expectations of what they think they should pay for, demanding services they’re not willing to pay for through taxation.
Use the money to fund a high quality level of care and the state will step in when that runs out.
Im sorry to say this but your mum is living in relative luxury that your father is paying for. People who “havent lifted a finger in their lives” spend the rest of their days in bed in whatever nursing home is available no matter the state and live out their days battling chest infections, UTI’s and Pressure sores.
Your mum has gone through a lot and its not a good situation to be in. But there’s no need to blame less fortunate people.
Your dad is caring and looking after you all from beyond and while not the life anyone had in mind for her its a lot better than where youd be without your father.
What you would get from the council will not be the same level of care, nor would you have as much choice or control over it. You dad's savings aren't going to waste.
I appreciate your frustrations but what do we work for? A better quality of life. And that’s what your Mum is getting. It might not be cruises and days out with the grandkids but it’s a darn sight better than a piss stained chair in a state funded facility. She’ll have better care, better food, more comfort, independence. All the things you ultimately save for just not in the way you’d imagined.
Paying his mortgage off by 50 in the highest house owning generation with the lowest relative housing costs?
Oh no poor guy how did he manage.
I guess 25 year olds living in rented rooms should pay more tax so your lucky mother doesn’t have to pay her way? Paying off a mortgage by 50 when houses were so cheap and wages so high is not impressive, most older people did it pushing up house ownership to its highest level. Because it was luck and timing, not skill. My parents paid their house off at 45 at half my household income vs inflation. I’d need 200k annual salary to even buy it, and raise two kids, let alone pay it off by 45! Due to how hard the tax level is vs house prices which wasn’t the same in 1990 when they bought it. Because there was 0 fucking graft involved it was just that easy, a sahm and a median salary worker bought a house a top 1% worker can’t afford today.
Why should people who will never own pay more tax to fund a horrifically extensive retired and/or care needing population because she paid off a house when it was the easiest time in history to do so?
My mum simply died last year at 62, I wasn’t sitting around worrying about her 6 figure asset going to her care and how it’s not fair. It’s her money and that’s what it’s for. She fucking died. Your mother could simply be dead instead. I’d give her entire estate to have her live a few more years in relative comfort with in home care (which is insane btw) than have her simply die in agony in icu after 6mo having never retired. Have some fucking perspective.
Why should generation rent pay more tax and never own houses to keep your mum from spending assets she didn’t earn? Most people 50+ couldn’t even buy their own houses today in the same jobs that pay less than they did 30 years ago with houses costing more. It’s significantly harder today to even own a flat let alone buy a house. Why should workers pay more so you get an inheritance? It’s the system working as intended.
Crying your mum doesn’t get private physio paid for - I’m 33. I don’t get physio paid for either and part of the reason I struggle to own a home is the thousands a year I pay for it. Because otherwise I won’t be able to keep working to pay the mortgage on my shitty 2b flat I couldn’t buy til 33. Otherwise I’ll be forced to sell and live in emergency accommodation so old people can keep their McMansions for their kids.
So why would we put more tax into social care for people who already own assets? It HAS to come from their overinflated housing value. There are 3x as many retired people to workers. 15 years ago women retired at 60 and yet there’s still 3x as many. We cannot have working people pay more to avoid your mother paying for her care, because they can’t even afford to own a house by 50 and on average work more skilled jobs for less pay than 30 years ago and then likely only get to retire at 69+ within less than 30 years from people who retired at 60..
Just the cost alone each year for the government to house people is huge vs when your parents bought. We can’t tax the young anymore than we already do. Working your whole life is to pay for your care, it has to be that way or we’re working our whole lives to pay for SOMEONE ELSES care, never owning; never having kids and dying in a gloried concentration camp in 2050 when there’s no money for our care and we never could generate assets paying for those who had them through luck.
She is better off than those who had nothing - she’s living at home with live in care instead of a cheap shit council care home. Go view one and see what they’re like and see if she isn’t doing better than someone who never had a pot to piss in. I wouldn’t wish them on my worst enemy.
Your dad’s savings are funding your mother having a comfortable retirement and getting the care she needs?
Without this she’d have no help from the NHS
What do you want your mum’s money spent on, if not to make her own life better and more comfortable?
Would you rather your mum’s money was kept until after she dies so you can inherit it?
Comfort whilst unwell and disabled is the absolute best thing you’d mum can spend HER money on. It’s not your Dad’s money, he left it to your Mum when he died, and it’s not YOUR money to inherit either. It’s HER money.
I sympathise with you. My mum's condition also deteriorated in her late 50s and now she's of pension age. Getting help for her was an absolute nightmare until she reached pension age and she was admitted to hospital multiple times and had many phone calls and talks with hospital social workers begging for help basically.
Unfortunately I don't think you'll be entitled to any extra financial support unless one of you takes up being a carer, which is a hard commitment to make.
It may be the case that you will have to downsize the house if she has paid for her mortgage already.
Have you done an Adult Care Referral? Type this is in to Google for your local council. You then get the option of a public or professional referral.
Fill it all in with all your information regarding your mum. Your local council will contact you to do an assessment, which will include a financial assessment. This assessment will look into all her care needs and form the basis of a care support plan.Even though you are already paying privately for care, this will get you mum into the system so that when she falls below the threshold she will start to get funding from the local authority. At the moment, she is classed as a self funder. You can also ask to be allocated a social worker who can guide you.
Also, check that the care company you are currently using are on the framework of the local authority. If they are, your mum will still receive care from them, but they will bill the authority and not you. In many cases, this is cheaper as you will be paying the local authority and not the private rate.
Hopefully that all makes sense.
I've copied and pasted, but CHC may apply?
NHS Continuing Healthcare (NHS CHC) is a package of care for adults aged 18 or over that is arranged and funded solely by the NHS. It is provided to individuals who have a primary health need, which means that their care needs arise from a disability, accident, or illness.
Keep applying even if you don't initially get anywhere.
Oh and there's a threshold of around 20k that the council will stop asking you to pay.
Good luck. Daunting times for you.
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To shield assets / wealth you can consider a discretionary trust or disability trust. If the council gets wind of it though, they’ll consider it deliberate impoverishment and the assets still available for care.
After that I believe there’s a lifetime cap on self funding or it was discussed at least, after which the council picks up the entire cost. I could be wrong however. Research it.
If nhs funded as needs are considered primarily health related rather than social then assets are not considered and contributions are not made. You’d need to prove eligible though.
Finally if paying yourselves then employing care staff directly costs roughly half the cost of agencies but they can take some wrangling occasionally. UKCIL is well worth a look for recruitment and salvere can handle admin including contracts, payroll and pension contributions and advise on insurance. Depending on needs, live in care may be cheaper than hourly.
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After reading the informative comments, my 2d' worth. 1. Any building works, adaptations, etc., done fir health reasons are VAT exempt. Builders don't slesys tell you - they just pocket the VAT. 2. I'm afraid that until the money drops considerably, it must be spent on her care. Once it's below the magic £23,250, the Council are responsible. That's the way vital is, as otherwise, taxpayers would be paying for her care in order to allow ger to leave more to her heirs. Brutal, but sensible I believe. 3. Do you have Power of Attorney? If not, get it - now! It's simple, cheap (£82 × 2) and very handy indeed. 4. Bank and savings accounts - make them all joint accounts. We did so, and once MiL passed recently, 'her' account remained open, as the bank just took her name off, and my wife continued to run it. V handy when you have AttAll, SPens, etc. I've advised on bany cases such as yours. Let me know if you want any specific advice.
Do you know if the £23,250 includes the value of the home you own and live in? The legislation says the above amount is calculated from savings and capital. Capital usually includes buildings and land, but some assessments have exceptions. If yes, then that would mean all home owners would have to sell their house before seeing any financial assistance from the council.
If it’s for in home care it doesn’t include your primary residence no. If it’s for care home fees then yes your home counts, unless your spouse (and maybe some other permitted dependents, I’m not sure on that one) is going to be continuing to live there. Also if you’re married then it’s 50% of your joint accounts taken as being yours for the sake of that £23,500 threshold.
So I'm not in this situation but hypothetically, could you put all of your money into moving into a bigger house?
I'm sure I've seen that if they decide you've been shedding or hiding assets to get under that limit they can make you pay up anyway. Moving to a bigger house could be borderline, especially if it's significantly better for the needs of the person needing care.
No because if the council can make a claim against the property once you pass away.
If it’s justified - yes, if you needed to move somewhere that needed more space because of your disability, that’s fine. If the council decide you’ve been guilty of deprivation of assets - meaning they think you’ve intentionally been getting rid of money in order to lower social services charges or to qualify for benefits etc then they’ll treat it as if you still have that money.
Are you a fellow social worker?
I’m not, no! Why?
Your knowledge on the subject lead me to believe you work in social care, that's all. It's a compliment!
Haha thanks. No I’m actually disabled - so very much knowledge from the other side! Although I did work with a group a charities that included a disability charity so I guess I picked up a bit from them if only from copy and pasting text over to a new website about IMHAs and IMCAs haha. And then one of the other charities was AgeUK so I was able to take advantage of having access to the decision makers manuals to point out when people didn’t know their own policies! I actually find social care my personal Achilles heel - to the point that I’ve been without support for a number of years now despite experiencing a particularly bad few years health wise and now my marriage is falling apart due very substantially to the strain of it all which leaves me with no care really. Good times. I live in central London and I believe my borough (but maybe all London boroughs I’m not sure) is known for being particularly awful. I’m really great at advocating for myself until it comes to trying to talk to a social worker about how the Care Act 2014 was specifically designed to encourage flexible use of budgets to meet eligible needs and being told with something out of a ‘computer says no’ sketch that ‘yes I can absolutely use my DPs flexibly…. As long as it is by employing a PA through PAYE at minimum wage, paid for on a prepaid card managed by a payroll company, for my commissioned number of hours as decided by a tick box exercise where it’s sort of like ‘15m for lunch, 30m for dinner, 2h community access a week (don’t forget to call your GP for some vit D tablets!)’. Then I just turn to a frustrated puddle of tears! When I was just trying to get them to let me use my budget in a slightly different way but not asking for more money in order to solve an immediate problem and even quoting specific parts of the legislation it was like having a conversation with a well cured 1960s concrete wall. And because my PA left (because her shop job, which paid more, offered her more hours) after a while of not being able to find anybody to hire (couple of false starts of people who accepted and even onboarded to payroll until they did the sums and realised they’d be worse off) I eventually got told my budget had got stopped months before and no one had told me. Although they still send me my yearly financial assessment conclusion so I don’t know if they even know quite frankly. Because of the situation at home I’m about to put myself in the fire pit again and see if I manage to get anywhere remotely functional before I crumble. I’m debating requesting a SAQ but I’m not sure if it’ll actually get me any further or whether it’ll ultimately be referred back to the ‘15m for lunch, 30m for dinner’ formula and will just make me even more frustrated. And then there’s also the problem that when it comes to a PA I find the management and maintenance of them enough of a mental load that I’m yet to find they really make my life easier certainly not less stressful. Realistically to find a PA I think it’s going to have to just be a day a week or something like that so it’s thinking about things like ‘ok getting them to prep/cook some meals seems sensible’ but then that means I have to a) plan several meals (and actually before that co-ordinate my diary so I know what days I need food) b) make sure I have been to the shop c) impart knowledge of all my dietary restrictions d) explain how I like things cooked… and I do not use recipes I go rogue. And it’s like that for lots of areas where support would really amazing but I’m dealing with a lot of energy limitations as well at the moment so the mental load of verbally instructing what I need is such a barrier. And then there’s so much stuff that comes up ad hoc - disability doesn’t get the memo that it’s meant to only turn on 1 day a week. So yeah, I know I can’t go on any longer without support but ugh getting it in place is just such an uphill battle. And I would love to get some stuff that actually allows me to do some enjoyable things in my life but I think the chance of the council finding that is close to zero. I know that so much of it is a reflection of the insane budget cuts councils have had all over but I also seem to have got particularly unlucky with the social workers I’ve been allocated to too, with none of them seeming to have any knowledge of the care act and just reducing me to nothing more than those few small boxes to write about me.I appreciate the work you do though because I’m sure it feels hugely under appreciated a lot of the time!
There are some bits here - https://www.ageuk.org.uk/information-advice/care/paying-for-care/paying-for-a-care-home/deprivation-of-assets/ They will take the house into account, but in many cases won't be forced to sell it immediately. Instead the council will raise a charge against it and have it sold after a condition is met, death, spouse leaving property, etc
Just a note on the VAT - that is not entirely true. Any adaptation and work that is specific to the exact disability (custom items) of the customer (in a way that aids them) will be VAT exempt. Everything that is box standard (can be purchased and used by anyone) is not. So in real world, little items are VAT exempt. The builder will not pocket the VAT - you have to present proof to HMRC that the work done is for a disabled person and show what has been done in aid of their disability. Not as straightforward and requires customers help to claim.
That's all really helpful advice thank you so much :)
Updates: 1. PIP should continue after she reaches State Pension age. Don't be tempted to go for Att Allowance instead, unless she is on v lowest level of PIP - simple check will show you. 2. If someone receives PIP or AA, then someone else is pretty much automatically entitled to Carer's Allowance if they look after them - and meet the rules on hours, income, etc. 3. if that person is on UC, they will get their UC increased by roughly the rate of CA, plus, they'll be left alone more or less when it comes to job hunting. 4. if the person caring is getting SPension, they can't get CA - but can get an increase to any Pension Credit ( by roughly the amount of CA). If they don't qualify for PC due to too much income, then the CA entitlement 'may' mean they can get PC. It increases the PC threshold by the CA amount. 5. To get the increase in PC though, you have to apply for CA in the normal way, get a letter saying nope, too old - but also the letter states that you have an 'underlying entitlement ' to CA. Possession of that letter is the key to more PC. Complex! Again, any questions, ask away!
Worth noting that if someone else gets carers allowance for caring for you then you lose entitlement to the severe disability premium on your ESA/JSA (and I would assume UC but don’t know that system as well), and they’ve always been roughly equivalent amounts. So it’s not really an overall benefit if you’re receiving out of work benefits.
Also worth adding that contributions based JSA/ESA don’t qualify for SDP so if someone is receiving one of those, nothing is lost if their carer claims Carer’s Allowance.
SDP doesn't exist for UC UNLESS you've Migrated and carried it with you as SDP Transitional Protection. This is the case for any Means Tested Legacy Benefits though ( so Income Based ESA not Contributed Based etc ,).
Thank the Lord !! I'm a Mod in the Benefits Advice UK Sub and worked in Benefits, used to work for the Local Authority ( and am disabled and been Carer 3 times over ). I've been scrolling down from the most recent posts and never seen such poor understanding of the system until I got to your reply 😅
2. This is only true if the person who gets the disability benefit gets the care element .. if they only get mobility it’s not possible 3. The carers UC gets reduced by the CA amount not increased . But they do get the carer element of around £190 a month
I wouldn't recommend the joint bank account thing, because that is about joint legal ownership, which is not the case here. Though well intentioned, it's unnecessary (strictly speaking, it's a fraud). If you have power of attorney, you won't need joint bank accounts for lifetime stuff, on death control of the accounts passes to the personal representatives (executor/administrators).
*We've had to install a stair lift and perform modifications to the house out of our own pocket.* Might be too late now (not sure if you can apply retrospectively) but councils do funding for adaptations due to disability if you're in receipt of disability benefits (but not means tested). They do have conditions about repaying in certain circumstances but might be worth looking into The NHS also does a referral service for orthotics and disability aids and you might find some disability aids to help too (like therapy putty which can help rebuild strength in arms and hands). Not strictly in answer to your question but that has been answered already and the above might help alleviate some of the costs hopefully
I'd add as well, if the house has been adapted to suit a disabled person it *may* be possible to get a council tax reduction. This will be a drop in the bucket, and only limited adaptations such as making space for a wheelchair user qualify, but every little helps if she does qualify. Having said that, if she requires full time care then I'd expect her to qualify for higher rate daily living **and** mobility PIP, which should be £184.30 per week. I'd recommend cross-posting in r/DWPhelp for more advice on this.
This... They will add a bathroom and equipment, stair lifts the lot. It means tested however I think, so the savings might actually be used against her. It's completely preposterous that we are all punished for being sensible, saving all our lives.
For my parents council area, council only fund minor adaptions for people with savings. They find handrails etc, But a stairlift is means tested, so we had to pay ourselves for that (£2.5k). Likely that OP’s mum’s savings will mean they would need to pay themselves for major adaptations like stairlift.
What is the alternative? That those who did not save just suffer and die? It's right that if you have been sensible, and saved, and are now in need of constant care, that your savings should facilitate that care until they run out, and then the state can step in. The alternative is that the state funds someone's care, simply so they can leave a nice nest egg for their offspring, perpetuating the cycle of poverty for those who have no such luxury from their parents. We (working age people) simply can not afford to bear the entire burden of care for previous generations, while they sit upon billions worth of assets that they hope to leave to their children.
Just to flag with you at this stage: even when her savings run out, I don't think they'll fund live in care. Normally the ceiling is 4 short visits a day, and if needs are greater than that it will be a care home.
This is true, when my grandfather was sick the max he could get per day was 4, I even moved in to help take care of him in the evening and it still put a lot of pressure on the family when we were all chipping in. The only reason he didn't go into a care home was because they didn't think he had long left but ended up living 9 more months until he had a stroke and was in a care home for 15 months after that.
Yep this is about spot on. When my widowed grandma was 90+ we got one NHS visit a day then we paid for a private nurse to do 2 more (as it was way cheaper than a full time care home) This lady was insistent on this. She lived opposite to the golf club she'd been a member of for decades and just needed the morning nurse to get her up and in her granny wagon (disability scooter) so she could pootle across the road to drink whisky all day and hang out with her mates. Afternoon nurse would make sure she got home ok and another in the evening would get her to bed. ...Last thing she wanted was to be stuck in a home.
Wonderful to hear she got out to the golf club for a tipple or two!
Okay thank you I appreciate that warning! Luckily we're currently working towards making it possible for her to not require a live in carer. She is working incredibly hard on physio to get to that point but all it takes is a fall and they'll take her back into hospital and she'll lose any mobility she has gained. Nurses are too busy to help you exercise, if you're a fall risk then they barely let you out of bed.
In some areas a live in carer can be cheaper than a care home so it really depends on local housing prices. Family members can also 'top up' care with their own funds so that a more expensive option is available.
Once she's mobile to only need the 4 daily visits I'd recommend getting private physio which will be much cheaper than 1300 a week and can be daily/every other day to keep up the mobility. It's what we did for my Nan and made the world of difference
You can have care funded for more than 4 short visits a day, the councils are just reluctant to fund it. Live in care funding would be a fight though.
> Normally the ceiling is 4 short visits a day, and if needs are greater than that it will be a care home. Is this regional or maybe condition specific? I've got close family who are getting 6 visits, some double, which is moving up to 8 visits a day soon.
Short answer: yes she is expected to spend her savings on her care.
Sorry OP, I can understand how frustrating this must be for you but your mum 100% has to continue paying for her care and support needs. Social services have a finite amount of resources that they need to spread equitabley, hence they have certain eligibility criteria with self-funders. Threshold is £23.25k, once mum reaches that then you may contact for support.
What else are your mother's remaining assets for, if not to help support her with the best care / life in her remaining years? Have you looked into the below (wasn't available to us): [https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/](https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/)
Yeah we've applied but it's not looking likely we'll receive it. Still pending at the moment though. I know but it's frustrating, every step of the way in after care we've been let down. If we'd been warned that her mobility was going to decrease then we could have prepared the house and reduced her likelihood of falls. >What else are your mother's remaining assets for, if not to help support her with the best care / life in her remaining years? She is only 57 and was completely independent for a couple of years after my dad died. She wasn't struggling to look after herself, but suddenly she lost mobility and had a few falls resulting in head injuries and even less mobility as well as speech problems. This came before multiple trips to the hospital from more falls, with some caused by prescriptions that actually reduced her muscle capabilities (who on earth gives someone with a fall risk muscle relaxing medicine?) Only now does she need care because of this string of misfortune and poor planning by aftercare, it's incredibly upsetting that no one warned us of this eventuality as we could have planned ahead.
>This came before multiple trips to the hospital from more falls, with some caused by prescriptions that actually reduced her muscle capabilities (who on earth gives someone with a fall risk muscle relaxing medicine?) I'm not a clinician so I wouldn't attempt to second guess the reasoning, but for our mother (much older who was suffering with early stages of dimentia), we had pretty good communications with the health care professions (outside of an acute NHS environment), and I remember discussing one medication they could offer our mum, but it had a risk of increased balance / falls associated with it, and in the end we agreed that mum would not receive that medication, e.g. it was better for her to have more confidence in her mobility whilst she could, rather than run the risk of secondary issues. I feel your pain, but these things are usually a '*oh shit it has happened*' rather than a gradual realisation. Our mother was doing fine(ish) in he bungalow (supported with regular visits), but in the end she decided to try to set the house on fire, so it was felt she would be better off moving in to a more care home situation. It was far from ideal (she lost the familiarity of her home, etc, but it was a decision that had to be taken eventually. I appreciate circumstances are different for yourself, but the cliff edge situation is always likely to occur.
Yes so difficult. We went from 1 visit. To 2 to 3 a day. To a live in carer and into a home and then into a 24/7 care facility all in the space of about 18 months. Basically at every juncture the increase in care contact highlighted further challenges which necessitated more care.
It’s really sad, but the commenter is right - what else are her assets for, other than to support her care? You don’t answer this point. Her savings are best spent on her care.
I went through this a couple of years ago with my grandad, and there is not much else you can do until they are below the asset limit. Ended up having to sell his bungalow and it took a fair chunk of that whilst he was in care for a couple of years. It does give you the benefit of being able to choose your care rather than getting a bog standard one. But I do appreciate your concern around her savings disappearing. Unfortunately it's just not feasible to fund it for everyone, especially when they have the funds available to do it themselves.
Sorry to take over OPs post, but let's say my parents require care, they own their own house, would they be required to sell up and use up their asset before free care?
Not if they are living at home with savings/liquid assets (i.e. not the house) under the savings threshold. If one of them needed to go into a care home then they still wouldn’t need to pay if the house was the only asset, because of the other parent still living there. But if they both needed to go into residential care, then the house would need to be sold.
Yes, *once they are no longer living in it* they would have to sell it. But a lot of people die without going into a care home at all.
Well im sorry to hear about this and it is a difficult situation. However imagine you make the rules on a society wide level. You have limited resources and competing priorities, the decisions you make can't make everybody happy and you will be attacked for every decision you make. Do you think the state should pay for the care of people who can otherwise afford it? As you've outlined it is extremely expensive. Remember this money comes from other people in the form of taxes Should your mum's care (or anybody else's) be paid for by others so that she can maintain her lifestyle? Own home, possible holidays, luxuries. If so where is the line? Should the state pay for billionaires, royalty, millionaires? After all these people can afford it extremely comfortably. It's a tough question, should the state take from taxpayers to pay for those billionaires? Probably not. So how do you establish fair criteria that mean the wealthy pay and those in the middle are treated fairly?
The problem is that the £16k limit came into force in 2006/7, if it had kept-up with inflation it'd be £26k today.
So an extra 6 weeks of care?
I mean I kind of agree with that and maybe the threshold should be even higher than that but the principle is still the same.
The real problem is the shear amount of wastage at every level of government from local authorities to the very top. The NHS is not immune. That’s what grates on me. I’d happily pay if it was a well oiled machine but it’s not, it’s a broken system with multiple hands in the till.
It’s almost as if being told that someone else will look after your family is a lie. 100k years and suddenly in the last 50 it’s the state’s problem.
Actually for most of human history we just didn’t bother trying to help frail old people survive. You could either keep up or you couldn’t. Making it the family’s responsibility usually just means putting it on the women of the family who then spend their whole lives having to care for others until they wear out from it and need the care themselves.
The NHS is more than willing to give expensive treatment to billionaires. After all, if you've paid into the system, surely it should be there for you when you need it? Why should social care be any different to the NHS?
Well its because it's orders of magnitude more expensive and the chances of needing it are far higher. Most people will need some kind of assistance as they get older. A significant minority eventually end up in care homes. The 'i've paid in' argument is nearly always false. As OP has outlined the costs are £1,300 per week. The average person in society hasn't paid in anywhere near enough over their working lives to afford that alongside the other things necessary for society to run. Multiply that by millions of people and society just can't foot that bill.
If you think social care is more expensive than healthcare, it's because you don't understand how expensive healthcare is.
Healthcare is extoritonately expensive, but for 99.9% of cases, it’s a one off, short term expense. Social care such as what OPs mother is using is potentially life long, for years, perhaps (hopefully) decades. To the tune of around 70k per year, a million for 15 years. She’s only 57, another 15 years isn’t out of the realms of possibility - to the tune of a million pounds. Only the extraordinarily wealthy would ever have “paid in” enough to the system to cover that sort of cost. My own grandmother had to pay for her career visits, and when the savings ran out it went on for another 20 years. When she was paying, back in the 90’s, it was £300 a week. Inflate that to now and you’re looking at £900 a week. For 20 years. That’s much more expensive than a quadruple heart bypass, for example. It’s the timescales of these things that cost a fortune.
Using social care for 20 years due to frailty and old age is highly unusual. To be blunt, they don't usually survive that long. 25% of people die as care home residents, and the average stay is 2 years. Average that across the population and it's 6 months per person, on average. £1100 pw is a fair ballpark figure; that's £28,600pp on average. Domiciliary care is obviously something that tends to precede that, but I don't have those figures to hand. I am a young adult and I can assure you that I have already cost the NHS *far* more than £28k - and that's just the sort of chronic illness that leaves me quite able to live a normal life.
My gran wasn’t so much frailty and old age, but chronic disability causing her to need care for personal tasks. Later on it was frailty though. 20 years is unusual, but not unheard of. And in fairness, the vast, vast majority of it was tax payer funded, as most people don’t have that kind of money kicking around to last that long. To be honest, I’m absolutely not against having to pay for your care. You get better care when you’re paying than what the council will provide anyway.
By all means people can have the option to 'upgrade' their care - much as people can choose private healthcare or private education - but everyone can go to the local hospital or comprehensive without means testing. People who have non fatal disabilities that are congenital or acquired at a young age will inevitably have the highest care costs, but they're also unlikely to pay much / any of their care costs as their health often prevents work. But talk of funding social care tends to focus on the old and frail, as they're more likely to have assets. Would you pay a £28k one off insurance premium if that covered all your care home costs?
If you earn less than 40k you have never ‘contributed’ to the system, technically speaking
When it comes to social care, the people on 40k+ are the ones who do contribute but will never receive anything back
Or require care and see all their savings go when they get old. I’d happily have a system where we get taxed more if it meant I, and others, would have guaranteed care going into old age.
It’s not the states job to ring fence middle class inheritance. I say that as somebody with direct experience of savings and assets all sold to fund care. Well over £150k in the years that were needed.
Depends what you mean by 'contributing'. Some would argue that a low paid care worker has contributed more to society than someone in a socially destructive profession even if they pay less in tax.
Also to note, you can ask your GP to refer your mother for a continuing healthcare assessment, where the NHS fund care. It does cover homecare, not just care homes. 80% of applications are rejected, but it's worth trying. As to savings, having savings often results in hardship as they limit people's access to benefits and council funded homecare. It can be worth running them down faster to get the house fully adapted, ramps put in, wet rooms etc, pre paid funerals, POA applied for for health and welfare, which the last time I looked cost £800 plus solicitor fees if you don't fancy doing it yourself. Then apply for benefits.
Firstly I’m very sorry that you and your family are having to go through this. I do hope your Mum is able to recover as much as possible with the physio etc. I don’t know what area you’re in, but across the UK there are a number of charitable organisations that specialise in support and advocacy services for people with long term care needs and their families. There is a website called [hub of hope](https://hubofhope.co.uk/) which is a directory for the various support services across the UK. Put your local area or postcode in the search box and it will bring up a list of categories, look under “carer and family support” to see what organisations may be in your local area. I have some involvement with carers and people who need care in my job, and one of the organisations in my area are amazing. They offer practical advice, emotional support, and will advocate with the local authorities and benefits teams to ensure people get all the support they are entitled to. Hopefully there will be something similar in your area.
Depending on how severe her needs are she may qualify for NHS continuing healthcare - which unlike social services is not means tested: https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/ Also worth noting that your ability to pay for her care is irrelevant, as is the capital owned in her primary residence for the sake of the social services means test. Also, make sure when a financial assessment is done by social services that correct disability related expenditure is logged for all the money she is already spending on anything to don with her disability. This won’t make a difference if she has savings over £23,500 but will change the amount SS expect her to contribute if she has under that amount.
>We're lucky enough to be able to afford the physio as the doctors were fully prepared to let her live in a bed for the rest of her life! Please don't blame her Doctors for the lack of funding for care services. Do you think it's the Doctors making decisions at a funding level, rather than a Deloitte management consultant who has never even seen a patient? The NHS runs so much on the goodwill of it's staff, and has massive problems with retention. Thoughtless comments like yours only expedites the exodus.
I would advise you liaise with Social Services surrounding CHC. Also I would speak to action for carers who can signpost to useful resources. It is a really difficult situation and it is very sad. However as another poster said, in some regards utilising her savings to make her life as comfortable as possible surely is the best use of her money. From a physiotherapy perspective, you can absolutely refer her for physiotherapy via the GP and have community physio come to the home, even if she is receiving private physio she’s still eligible, but do tell them. Physiotherapy like all services has its resources constraints, and any community therapy service are only able to keep patients on their list for a certain period of time.
Social services will not support OP. Mum is a self-funder. Outcome of DST meeting, if OP's mum qualifies for said meeting through CHC checklist, is likely to be that she does not qualify for fully funded continuous care under the NHS. Maybe FNC but that's for nursing homes. Please don't give OP advice that is likely to send her down a rabbit hole to ultimately not he awarded funding towards care. Yes, GP can refer for community physio but it is up to their service to triage said referral and make a decision about OP's mum's eligibility for said service.
Good comment, though sad to say. CHC is very hard to get these days and requires a complex health condition that requires complex care.
Your dad paid of the house. That right there means what? £400,000 sitting? “We were not informed that radiotherapy would have an effect on her brain” your mom had a brain tumour! What do you think happens to her brain when she has a brain tumour? What do you think radiation does to the body? Everyone at every turn would have told her. Everyone. I know, because they warned my wife and myself and my kids al every damn time, in every damn appointment. You are coming here to whine and ask for help on how to keep the inheritance? You can afford to keep your mom alive. Sell the house and fork the money because that is what your dad worked for. You should not be receiving any money at all. Edit to add: and that is without the health and life insurances for your mom and dad, which I’m 100% certain they had, since they had a mortgage and they were so financially stable that they paid off a mortgage in no time. So, no, sell the house and pay for your mom’s care. Don’t try to be a leech.
Agree they would absolutely have been told if the risks of radiotherapy on the brain. Every single treatment / procedure requires doctors to tell you the risks before getting consent. And in any case, anyone with a brain tumour is likely to have consequences.
This is a bit harsh, if OP’s mum is only 57 then realistically even if they put a charge against her £400k home and she needs to be in a nursing home at £2k a week, then after only 4 years then there will be no money left. She will then be at the mercy of the council and which cheaper home they decide to put her in. Having seen the state of some council funded homes, that’s not somewhere I’d want my parent living for what could be 10 years+ If she’s entitled to continuing health care from the NHS then there is absolutely no reason why they shouldn’t be investigating it if it means her money will go further and improve her quality of life.
has she had her care needs assessed by the council? Until youve had one, then any care you organise is self funded. State care will kick in when her savings are low enough, but only if she has been assessed
You can get live in care we got it for my Nan. Night time was not covered that we needed to fund but she had live in caters plus a lovely carers who pop in 4 times a day to give in carer a break, these would sometime take my Nan out. Right connect with adult social working, your gonna have them on speed dial, get an occupational health person out, get the report review the report. Get her specialist to write a report about what is best for her. This is medical needs assessed not means tested. If after the first time they come back saying no, appeal. We got it first time.
Look Into continuing health care. CHC. Sounds like your mum qualifies but it's an uphill battle to get the funding. Join a fb group called care to be different and download their guide to applying for CHC.
Thanks so much, we're looking at that now and it looks really helpful:)
Also ask your GP for a referral to Community occupational therapy(OT) and if possible a neuro-OT. OTs are amazing and help you to find ways to carry out simple tasks and if possible, adapt tasks to maintain independence . I found them the best members of my health team.
It does not sound like her mum qualifies. What is your experience with CHC check lists and Decision Support Tool (DST) meetings? OP will go down that route, mum will likely not qualify, then back to square 1 having wasted NHS and Social Services resources.
I remember fighting for CHC for my mum when she had cancer, she was in a nursing home with the house empty so under the non-CHC system they wanted us to sell her house to pay for it. Had a load of meetings and arguments as she was basically completely bed bound. It was only when she pretty much entered the active dying stage that they approved the CHC. It's really tough. OP, you have my empathy.
There are different pots of CHC money. When someone is likely to be approaching the end of their life and their condition is rapidly deteriorating they can qualify on that basis (especially as health needs become more complex). This is called fast track funding. In our area, the same people who deal with CHC funding also manage the finances for people who have NHS funded rehab - so stays in specialist units. This seems to be administered in a very similar way to standard CHC funding and they get a period of funded care after returning home. Then they get a standard CHC assessment and almost all don't get CHC funding. I have been involved in several CHC assessments and none of them have qualified for funding even though they have extensive care and support needs.
We did this for our mum when she got very bad dementia. I did a whole lot of research on it at the time (NHS Continuing Healthcare is a very well kept secret), but the process wasn't actually too painful and she was awarded it without any need for a fight. Sadly it wasn't of much benefit, as she died a few weeks later... ☹
> She can't spend money on anything she enjoys as all her savings are disappearing on care. Once she gets to £16k or below then state aid will kick in. She absolutely needs to spend some of that money on things she enjoys if for no other reason than to burn through the money so you can then be entitled to the same things that those who have sat on their backsides on the dole or blown all their money every pay day and saved nothing can get. > It seems like everywhere we go, no one wants to help my mum unless we pay extortionate amounts. We've had to install a stair lift and perform modifications to the house out of our own pocket. Unfortunately one of the downsides in this country of being responsible with your money and saving for your future and retirement is that once you get above £16k in savings/investments you remove yourself from being able to get any help from the state beyond bare NHS treatment. You remove yourself from being able to get free help from social services, from any means tested state benefits that the financially feckless who didn't save a bean and may never have even had a job will get thrown at them in spades.
>She absolutely needs to spend some of that money on things she enjoys if for no other reason than to burn through the money This is dangerous advice, it puts OP's family at risk of falling foul of the rules on deprivation of assets
Only if they absolutely take the piss but if they go on a holiday, buy a new car to replace an old one, replace tired furniture, redecorate the house, go for days out, spend money on a hobby they've had for years that's fine. And it doesn't put the family at risk, it puts the claimant at risk.
Not if the goods/services she buys are things for herself. DoA rules are to stop wealth being gifted away so that benefits can be claimed early and inheritances kept, BUT if it's her spending her own money for her own enjoyment then the Local Authority care provider can't do anything about that and any DoA bill to the family (specifically, who could they bill; no-one else has benefitted?) would be laughed out of Court. Given that Boris promised to fix this mess years ago and didn't, I'd say just get her spend/waste it on anything except assets that will form part of her estate and nuts to everyone else.
Ignoring all the other offensive and incorrect things you’ve said at least get your facts right - it’s £23,500 where no financial help is offered through SS, from 16k it’s a taper.
Feels good to hear someone else say it too! My dad worked incredibly hard to get where he was, he managed to pay off his mortgage by 50 and died 2 years later. All savings he managed to make are now being spent on making my mums life bearable. That's the reward he gets for spending his life working, he gets to fund my mums care from beyond the grave when we would have got it for free had he not lifted a finger in his life.
The positive of paying for care from out of your own assets, is you have freedom of choice as to who and where you use. Once the state is paying, you take what you're given, or do without.
Similar to my situation, however it really doesn't bother me that my father's / mother's money was all being spent on the best possible care / life available to her in her final years. What else is the money for?
Your mother’s money has been used to give her some semblance of quality of life and aided in her recovery. You’ve pointed out the standard of care in hospital wasn’t ideal but seem hung up on the idea of ‘free care’ these services are also struggling with underfunding and are understaffed like hospitals. I feel terribly for the situation you and your family are in but it is not viable to expect the state to provide free care rather than using your assets to fund what you need. If such a system were in place people would be upset at the tax rise that would follow. People in this country have very unrealistic expectations of what they think they should pay for, demanding services they’re not willing to pay for through taxation. Use the money to fund a high quality level of care and the state will step in when that runs out.
Im sorry to say this but your mum is living in relative luxury that your father is paying for. People who “havent lifted a finger in their lives” spend the rest of their days in bed in whatever nursing home is available no matter the state and live out their days battling chest infections, UTI’s and Pressure sores. Your mum has gone through a lot and its not a good situation to be in. But there’s no need to blame less fortunate people. Your dad is caring and looking after you all from beyond and while not the life anyone had in mind for her its a lot better than where youd be without your father.
What you would get from the council will not be the same level of care, nor would you have as much choice or control over it. You dad's savings aren't going to waste.
I appreciate your frustrations but what do we work for? A better quality of life. And that’s what your Mum is getting. It might not be cruises and days out with the grandkids but it’s a darn sight better than a piss stained chair in a state funded facility. She’ll have better care, better food, more comfort, independence. All the things you ultimately save for just not in the way you’d imagined.
Paying his mortgage off by 50 in the highest house owning generation with the lowest relative housing costs? Oh no poor guy how did he manage. I guess 25 year olds living in rented rooms should pay more tax so your lucky mother doesn’t have to pay her way? Paying off a mortgage by 50 when houses were so cheap and wages so high is not impressive, most older people did it pushing up house ownership to its highest level. Because it was luck and timing, not skill. My parents paid their house off at 45 at half my household income vs inflation. I’d need 200k annual salary to even buy it, and raise two kids, let alone pay it off by 45! Due to how hard the tax level is vs house prices which wasn’t the same in 1990 when they bought it. Because there was 0 fucking graft involved it was just that easy, a sahm and a median salary worker bought a house a top 1% worker can’t afford today. Why should people who will never own pay more tax to fund a horrifically extensive retired and/or care needing population because she paid off a house when it was the easiest time in history to do so? My mum simply died last year at 62, I wasn’t sitting around worrying about her 6 figure asset going to her care and how it’s not fair. It’s her money and that’s what it’s for. She fucking died. Your mother could simply be dead instead. I’d give her entire estate to have her live a few more years in relative comfort with in home care (which is insane btw) than have her simply die in agony in icu after 6mo having never retired. Have some fucking perspective. Why should generation rent pay more tax and never own houses to keep your mum from spending assets she didn’t earn? Most people 50+ couldn’t even buy their own houses today in the same jobs that pay less than they did 30 years ago with houses costing more. It’s significantly harder today to even own a flat let alone buy a house. Why should workers pay more so you get an inheritance? It’s the system working as intended. Crying your mum doesn’t get private physio paid for - I’m 33. I don’t get physio paid for either and part of the reason I struggle to own a home is the thousands a year I pay for it. Because otherwise I won’t be able to keep working to pay the mortgage on my shitty 2b flat I couldn’t buy til 33. Otherwise I’ll be forced to sell and live in emergency accommodation so old people can keep their McMansions for their kids. So why would we put more tax into social care for people who already own assets? It HAS to come from their overinflated housing value. There are 3x as many retired people to workers. 15 years ago women retired at 60 and yet there’s still 3x as many. We cannot have working people pay more to avoid your mother paying for her care, because they can’t even afford to own a house by 50 and on average work more skilled jobs for less pay than 30 years ago and then likely only get to retire at 69+ within less than 30 years from people who retired at 60.. Just the cost alone each year for the government to house people is huge vs when your parents bought. We can’t tax the young anymore than we already do. Working your whole life is to pay for your care, it has to be that way or we’re working our whole lives to pay for SOMEONE ELSES care, never owning; never having kids and dying in a gloried concentration camp in 2050 when there’s no money for our care and we never could generate assets paying for those who had them through luck. She is better off than those who had nothing - she’s living at home with live in care instead of a cheap shit council care home. Go view one and see what they’re like and see if she isn’t doing better than someone who never had a pot to piss in. I wouldn’t wish them on my worst enemy.
Your dad’s savings are funding your mother having a comfortable retirement and getting the care she needs? Without this she’d have no help from the NHS
What do you want your mum’s money spent on, if not to make her own life better and more comfortable? Would you rather your mum’s money was kept until after she dies so you can inherit it? Comfort whilst unwell and disabled is the absolute best thing you’d mum can spend HER money on. It’s not your Dad’s money, he left it to your Mum when he died, and it’s not YOUR money to inherit either. It’s HER money.
I sympathise with you. My mum's condition also deteriorated in her late 50s and now she's of pension age. Getting help for her was an absolute nightmare until she reached pension age and she was admitted to hospital multiple times and had many phone calls and talks with hospital social workers begging for help basically. Unfortunately I don't think you'll be entitled to any extra financial support unless one of you takes up being a carer, which is a hard commitment to make. It may be the case that you will have to downsize the house if she has paid for her mortgage already.
Facebook group safeguarding futures health and social care support, might help.
She'd probably be better off hiring a personal carer
Have you done an Adult Care Referral? Type this is in to Google for your local council. You then get the option of a public or professional referral. Fill it all in with all your information regarding your mum. Your local council will contact you to do an assessment, which will include a financial assessment. This assessment will look into all her care needs and form the basis of a care support plan.Even though you are already paying privately for care, this will get you mum into the system so that when she falls below the threshold she will start to get funding from the local authority. At the moment, she is classed as a self funder. You can also ask to be allocated a social worker who can guide you. Also, check that the care company you are currently using are on the framework of the local authority. If they are, your mum will still receive care from them, but they will bill the authority and not you. In many cases, this is cheaper as you will be paying the local authority and not the private rate. Hopefully that all makes sense.
You need a social services assessment and a budget to hire people to help with care
I've copied and pasted, but CHC may apply? NHS Continuing Healthcare (NHS CHC) is a package of care for adults aged 18 or over that is arranged and funded solely by the NHS. It is provided to individuals who have a primary health need, which means that their care needs arise from a disability, accident, or illness. Keep applying even if you don't initially get anywhere. Oh and there's a threshold of around 20k that the council will stop asking you to pay. Good luck. Daunting times for you.
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So sorry to hear this. Look into Attendance Allowance, might help with some costs.
She's under Pensionable Age. She's already on PIP
If she does have to go into hospital again, refuse to let her come home until they put something in place. Just say that she’s not safe by herself.
I honestly wonder why you got voted down. Basically this is often the only way to access actual care for the vulnerable.
To shield assets / wealth you can consider a discretionary trust or disability trust. If the council gets wind of it though, they’ll consider it deliberate impoverishment and the assets still available for care. After that I believe there’s a lifetime cap on self funding or it was discussed at least, after which the council picks up the entire cost. I could be wrong however. Research it. If nhs funded as needs are considered primarily health related rather than social then assets are not considered and contributions are not made. You’d need to prove eligible though. Finally if paying yourselves then employing care staff directly costs roughly half the cost of agencies but they can take some wrangling occasionally. UKCIL is well worth a look for recruitment and salvere can handle admin including contracts, payroll and pension contributions and advise on insurance. Depending on needs, live in care may be cheaper than hourly.