Care cost questions after TBI accident.

poh75

My 75-year-old father, who was very fit and healthy, lives at home with his 68-year-old wife. In June 2023, he fell from a ladder, sustaining a serious brain injury. Though he was discharged after three months in the hospital and could perform basic tasks (walk, eat, dress, wash etc), he was noticeably different. His condition worsened over several weeks, and we took him back to A&E, where he underwent a shunt operation to address fluid build-up in his brain after being unable to walk, etc. Unfortunately, the procedure has not improved things.

Since December 2023, he has been hospitalised in a general medical ward, bed-bound, incontinent, and slow to process information. He seems content and is not angry or sad. While he sleeps a lot and has no short-term memory, he does remember who we are. He requires constant care and a hoist in and out of bed, with the only significant medical issue being fluctuating sodium levels caused by the brain injury and ongoing monitoring of the shunt.

He owns a house with his wife, has £27k in savings, and receives a monthly state and personal pension of £1,000.

Our long-term plan was to convert a downstairs garage into a bedroom and wet room for him, but this will take 12-16 weeks. The hospital OT has now confirmed after visiting the home that he cannot go home until the conversion is complete due to safety concerns, meaning he will need temporary care, which we were told will be means-tested by Social Services.

We didn't establish the power of attorney when he made his will, and we're considering a court of protection, though its usefulness and the time it would take are uncertain.

We intended to use some of the £27k to convert the garage for his room, but we're concerned that his means test for the temporary care may significantly reduce this amount.

When he was finally home, we were told that he would need double-handed care four times daily. However, it's unclear who will fund this care. His wife and two daughters, who live nearby and work, can also help. He was refused a neuro rehab centre due to lack of space, but I think it's due to his age.

When he was discharged the first time, we were told there would be support from the local neuro community team in a week. Turned out there was a 16-20 week waiting list so no nurse, OT or Physio support at all so we had to do everything. The local GP said too complex a case and said if we needed anything take him to A&E which we finally ended up doing.  I am concerned that when he comes home again, the same thing could happen.

I have a few questions, after reading a lot online there is a lot of conflicting information so still unclear.

1. The hospital wants to discharge him and wants the bed back and has been pretty forceful about this. 
1. They wanted to discharge him home with a bed, hoist etc but due to the building work and general lack of downstairs space this was just impossible.  They tried to put him upstairs but we were concerned about the fire risk etc as it would not be possible to get him out.  I got the impression this was "Continuing Health Care" but if he moves to a care home and then back home would that mean we lose that ?
2. So, they agreed he needs to go into temporary care, which they have called "Step down" care.  His referral to Social Services was today, and we're unsure how long this process might take due to potential backlogs.  What happens if they cannot find him a care home?  Could it be anywhere in the UK or local?
2. I understood there was also a six-week rehab NHS time before any costs.
3. Is the means test done as a couple or individual - technically as we don't have power of attorney and he is unable to communicate how do we know 100% what he has?  Could his wife be forced to pay in the short term?
4. Is there a way we can get his care NHS-funded, as we believe he has ongoing medical issues related to sodium and shunt maintenance?  What should we be asking for?
5. Given that it will take 12-16 weeks to prepare his room at home, and we don't have power of attorney, is there a risk that Social Services might refuse to let him return home once he's placed in a care home?  Even though this is not what he or we want.
6. Apart from his state pension +£130 a month private he has no other income - should we be looking at other state benefits or for his wife he will help care for him as she can no longer do a part-time job as before.
7. Longer term, could they place a hold on 50% of his house and force its sale when his wife passes away or also goes into care to pay for any care home costs or home care support?
8. Is there anything else I should be thinking/doing?  This whole care / NHS is a minefield of not knowing how the complex system works!

I appreciate any advice you can give me.

 

elsien

poh75 said:

My 75-year-old father, who was very fit and healthy, lives at home with his 68-year-old wife. In June 2023, he fell from a ladder, sustaining a serious brain injury. Though he was discharged after three months in the hospital and could perform basic tasks (walk, eat, dress, wash etc), he was noticeably different. His condition worsened over several weeks, and we took him back to A&E, where he underwent a shunt operation to address fluid build-up in his brain after being unable to walk, etc. Unfortunately, the procedure has not improved things.

Since December 2023, he has been hospitalised in a general medical ward, bed-bound, incontinent, and slow to process information. He seems content and is not angry or sad. While he sleeps a lot and has no short-term memory, he does remember who we are. He requires constant care and a hoist in and out of bed, with the only significant medical issue being fluctuating sodium levels caused by the brain injury and ongoing monitoring of the shunt.

He owns a house with his wife, has £27k in savings, and receives a monthly state and personal pension of £1,000.

Our long-term plan was to convert a downstairs garage into a bedroom and wet room for him, but this will take 12-16 weeks. The hospital OT has now confirmed after visiting the home that he cannot go home until the conversion is complete due to safety concerns, meaning he will need temporary care, which we were told will be means-tested by Social Services.

We didn't establish the power of attorney when he made his will, and we're considering a court of protection, though its usefulness and the time it would take are uncertain.

We intended to use some of the £27k to convert the garage for his room, but we're concerned that his means test for the temporary care may significantly reduce this amount.

When he was finally home, we were told that he would need double-handed care four times daily. However, it's unclear who will fund this care. His wife and two daughters, who live nearby and work, can also help. He was refused a neuro rehab centre due to lack of space, but I think it's due to his age.

When he was discharged the first time, we were told there would be support from the local neuro community team in a week. Turned out there was a 16-20 week waiting list so no nurse, OT or Physio support at all so we had to do everything. The local GP said too complex a case and said if we needed anything take him to A&E which we finally ended up doing.  I am concerned that when he comes home again, the same thing could happen.

I have a few questions, after reading a lot online there is a lot of conflicting information so still unclear.

1. The hospital wants to discharge him and wants the bed back and has been pretty forceful about this. 
1. They wanted to discharge him home with a bed, hoist etc but due to the building work and general lack of downstairs space this was just impossible.  They tried to put him upstairs but we were concerned about the fire risk etc as it would not be possible to get him out.  I got the impression this was "Continuing Health Care" but if he moves to a care home and then back home would that mean we lose that ? If it was continuing health care and it is fully health funded then social services wouldn’t be involved. If he’s eligible for full CHC funding, then he will get it wherever he is whether that’s a care home or at home. 
2. So, they agreed he needs to go into temporary care, which they have called "Step down" care.  His referral to Social Services was today, and we're unsure how long this process might take due to potential backlogs.  What happens if they cannot find him a care home?  Could it be anywhere in the UK or local?  Step down care is usually time limited. What happens in my area is the person goes to a care home for 4-6 weeks while a full decision is made with regards to health or local authority funding. But I do know this works differently in different areas. He won’t be going anywhere in the UK place are within county, but if he needs some nursing care home places are very limited at the moment so it may initially be further away from family than you might like. The aim would always be to get people closer, if at all possible because you are arguing, it’s in his best interest to be able to maintain those relationships and his right to family life.
2. I understood there was also a six-week rehab NHS time before any costs.  There can be, but that depends if they think he has rehab potential or not. The six weeks NHS funding is more usual for people who just need that short-term help to get back on their feet. In your circumstances, it’s probably not going to apply because of that short-term care home need while alterations are done.
3. Is the means test done as a couple or individual - technically as we don't have power of attorney and he is unable to communicate how do we know 100% what he has?  Could his wife be forced to pay in the short term?  It’s normally done as an individual, but marital assets are considered to be 50-50 I think. Not something I’m fully up to speed with though. 
4. Is there a way we can get his care NHS-funded, as we believe he has ongoing medical issues related to sodium and shunt maintenance?  What should we be asking for?  You need to be asking about a CHC checklist to be done. Health needs in CHC terms are not what the general public would consider as falling under health and it is very hard to get full CHC funding, especially as your dad is happy and content and most of his needs would appear to be around social care, such as personal care, eating et cetera. He may qualify for an element of health funding, see below, but still need local authority funding for the bulk of it. 
5. Given that it will take 12-16 weeks to prepare his room at home, and we don't have power of attorney, is there a risk that Social Services might refuse to let him return home once he's placed in a care home?  Even though this is not what he or we want. They have an obligation to act in his best interests. Part of that will be not just around the environment, but also whether the level of care at home will meet his needs. But a return home should be the starting point if that’s what your dad would’ve wanted and they would have to properly evidence if they don’t feel it is in his best interests, and that decision would be open to challenge. Part of that consideration would be who would be supporting any health needs while he is at home. You may need to tread a line between “he’s got a lot of health needs and that’s why we think he’s eligible for CHC funding” versus “yes, of course we can manage him at home, that’s not a problem.” I paraphrase, but you get the gist. The Hospital may be saying he can go home and be managed by the community health team, but if the community health team is saying it’s too complex for them, that’s when you’re going to start hitting the barriers. That might be something you want to explore in a bit more detail before you spend a lot of money on conversions. 
6. Longer term, could they place a hold on 50% of his house and force its sale when his wife passes away or also goes into care to pay for any care home costs or home care support?  Not place a hold as such, but a deferred payment agreement might be needed. The house would be safe for as long as your mum lives there.
7. Is there anything else I should be thinking/doing?  This whole care / NHS is a minefield of not knowing how the complex system works!

I appreciate any advice you can give me.

 

Answers as above. 

I think you are going to have to go for deputyship for finances because you have no legal method of accessing his savings or bank accounts without it if there is no power of attorney in place.

Some CHC information here, but you will need to look into it in a lot more depth. A family member should be involved in the assessment and again there are appeal mechanisms which sometimes it’s worth getting proper advice from someone familiar with the system.
https://www.ageuk.org.uk/information-advice/health-wellbeing/health-services/nhs-continuing-healthcare/

They won’t be sending your dad to the other end of the country, but if he needs some nursing care because of the shunt then nursing places can be limited and it may be initially further away within your county than you might like.  Again, you can look at places closer to home as these become available available, because it is in his best interest to be close to family. 

You also need to appreciate that someone can have some nursing needs but still not qualify for full health funding. In those circumstances they would be awarded something called funded nursing care where health pay the health top up, but the local authority (or your dad if he was a self funder) would pay the bill of the fees. It’s only applies in care homes because it’s to pay for that nursing element. Where is if he was at home, then the district nurse/health service would be dealing with that. 

Age UK have some more detailed fact sheets and also a helpline if you need to find out more.

elsien

Although your dad doesn’t have dementia, this is quite a a good guide to CHC funding, and you need to pay particular attention to the complexity  and predictability factors because those who don’t have complex needs are far more likely to be turned down
https://www.dementiauk.org/wp-content/uploads/dementia-uk-chc-carers-leaflet.pdf

how to appeal if needed. There is also a more detailed link embedded in here about the health domains, and how they are assessed.
https://beaconchc.co.uk/should-you-appeal-a-continuing-healthcare-decision-our-expert-guide/

if there is a realistic possibility of your dad going home, then your mum as primary carer might want to think about requesting her own needs assessment as a carer because it can put a huge strain on people if they’re doing it day and day out and her needs also need to be
recognised. 

teddysmum

I read, a few years ago, before the disability gremlin got me, that if you are a home owner, the house is not counted in home care help assessment, but it is counted if you are the only occupant or any other occupant is not entitled to consideration.

If one goes into care and leaves a spouse, person of certain old age or dependant, the house is not counted and the person left in residence will not have to pay after the death of the person in care. However, if they move house, during the patient's lifetime, some part of any profit goes towards the care.

There was a caution , though , concerning money in joint accounts. Money in such an account is considered to be owned 50/50 by the holders, but things are not that simple.

eg Assume a couple , among other assets , have a joint account with £20000 in it . Someone may think that £10000 is owned by each, (simples) but once the account is down to £10000, the sharers each own half (£5000), so the person not needing care loses £5000 and this splitting 50/50 can go on until half the account's contents are not enough to put the estate of the person in care into the no need to pay range.

I am not claiming that all this is true, now, as things are always changing.

urchin

provided there is only one property owned, the home value is disregarded if a person receives home care via council social care. all other income received and capital owned by the person is considered as part of the financial assessment calculation. Any capital or income in joint names is considered at a 50% share per person.

If the person goes into a residential care home the value of the property is considered, however if the spouse remains in the house, the value is disregarded.

Savvy_Sue

elsien said:

if there is a realistic possibility of your dad going home, then your mum as primary carer might want to think about requesting her own needs assessment as a carer because it can put a huge strain on people if they’re doing it day and day out and her needs also need to be
recognised. 

I would definitely agree with this: when there's family willing to step up and give some care, it's easier for Social Services to rely on family doing more than what's agreed, reasonable or possible. 

poh75

Thank you for all your advice. It has been very helpful, and I'm still working through it. 

I found Age Concern to be excellent and they advice sheets were great. The only issue is what's being written down and what is happening in reality seem very different.

Here's a quick update: Not much has changed, except that a lot of the information given by the NHS seems to be incorrect during our family meeting.

The case has been passed to the London council of social services, which claims to have taken over from the NHS. The council states there's no funding available, and we need to cover all costs, starting with filling out a financial assessment. They've suggested a deferred payment plan using the house, despite his wife currently living there. 

They're also pushing for us to use the downstairs living room, which is shared by four other people, into his living space. We were told to dispose of the sofa, dining table, etc. Given his double incontinence, I'm unsure how practical this solution will be.

The proposed area is also intended to be part of the construction space for the extension, which will become the new room we're trying to build. 

We're applying for a court of protection, but I'm uncertain about how we can provide financial assessment information without it.  The council is saying they will do nothing else unless this is signed.  So what happens then?  

Until we have the court of protection's approval, how can we ask the finance company about his financial status or share the information under GDPR rules?

They also confirmed there would be no OT / Physio support for 16+ weeks due to waiting list if he left the hospital - which in my way of thinking would increase the risk of him recoving further.

At the end of the day - if we refuse for him to come home, and the local council put their foot down - what happens? Can someone be evicted from a hospital? Especially if he does not have mental capacity? 

We want him to come home - but only when its safe for him to do so.  I dont know if we are being diffucult or we should just be fighting for his care as he cannot.

I found this link today as well.

Hospital discharge and community support guidance - GOV.UK (www.gov.uk)

Albermarle

The case has been passed to the London council of social services, which claims to have taken over from the NHS. The council states there's no funding available, and we need to cover all costs, starting with filling out a financial assessment. They've suggested a deferred payment plan using the house, despite his wife currently living there.

London Council of social services has not taken over from the NHS. They seem to be a coordinator between London boroughs social care depts and the NHS.

How can they know that you have to pay if 

1) you have not filled in the financial assessment yet?

2) There has not been a decision about NHS continuing health care ?

3) If he is cared for at home then then the house value should not be involved ?

poh75

I 100% agree, but this is what we have been told/bullied into being told, and they get very defensive when you question it. 

Sorry - this is a local London council - not naming which one.  

HillStreetBlues

It sounds like your father need to go into a care home for temporary care. The LA can't refuse funding if he's entitled to it.
It would seem you will need to make a complaint.
The capital your parents have is below the lower limit to be a factor at £14,250  as savings should 50% to him and his wife so £13,500 each.
They can not touch the house while his wife still lives there, it is completely disregarded.

elsien

So given they are talking about using the downstairs room, are they now arguing that he doesn’t need 24 hour residential care and that’s why they won’t pay for it? Which is where you need to stand your ground if it means losing the only living space in the house. 

People can be evicted from hospital but it takes a very long time even where they have capacity. 

Seems to me that the complaints procedure is the route open to you at the moment, however the law is very clear that the needs assessment is done before finances are considered so has that been fully completed yet? Your mother would have a right to a written copy on his behalf if that has not yet been received. 

Is there a law centre near you that you could get advice from?