Hospital social worker and NHS continuing care

[Eeviec]

Hi, my mum is 81 and has Parkinson's plus dementia, previous stroke , incontinence and is cared for by my brother who lives with her and myself. Two weeks ago admitted to hospital for the first time in her life because of a suspected frozen shoulder meaning we couldn't lift her out of bed and in and out of chairs because of the pain she was in. She has had an injection in her shoulder and is moving it a bit better and hospital looking to discharge her soon. Hospital social worker suggests 2 carers come into her bungalow 4 times a day to get her up in the morning with some kind of hoist then twice during the day then to get her into bed in the evening. Mum has passed the checklist for chc but social worker reluctant to give me a copy however she said I can look at it and will apparently be contacted when the full application for chc goes ahead. At the end of the meeting with her she asked about finances and if my mum had over £23k. I said we would be self funding but did not go into any details. I realise now she should not have asked about finances. She says if I pay £260 per annum then she can source the care for me, then mum will pay £30 per hour care. This equates to around £630 per week starting from her discharge and that if mum gets chc we can claim the money back.
Social worker said mum had been catheterised since going into hospital which will make things easier at home, however after the meeting she came to the bedside and said that was a mistake and she is not catheterised. She is raising the issue with the doctors. My concern with all of this is when questioned about bowel movements I was told she would have to just use her incontinence pad. My brother has been told he cannot use the hoist as it requires 2 people, so she could be sitting in excretment for hours. We feel that morning and night carers would be enough as the rest of her care could be managed apart from bowel movements.
Should the payments start right away or not until the chc assessment has been done? . No mention of intermediate care. Social worker said situation will be reviewed after I week but i have no faith in her and don't want mum discharged to find ourselves in a pickle if I can sort it out before she leaves hospital. It seems a lot of money for 3 hours care a day, surely it wouldn't be that much more in a care home where at least she would have 24 hour care and could be lifted onto a commode or toilet if necessary.
Sorry for the long post but we really don't know what to do for the best. Social worker came to bedside today with the paperwork for me to sign and I said I would like to talk things through with my brother over the weekend before I sign and asked about intermediate/ reablement care....social worker said we should try 2 carers 4 times a day first and that we could change things in the future. Any suggestions would be much appreciated thanks

 

[AlsoConfused]

I think you're right to be suspicious. Please read the thread on Continuing Health Care started by stanleypj - it'll give you lots of warnings about the things you need to be aware of. Don't agree to anything until you've had time to consult an independent expert (you can or used to be able to get 90 minutes free specialist advice from B****N - think "signalling fire" - H**lthcare).

What I found useful was to get hold of photocopies of the hospital Ward Assessments done on my Mum. When the hospital said my Mum was unpredictable, unaware of danger, such a high falls risk that even in hospital (with the staff trying to ensure she never moved without staff support) she'd had 2 falls in a fortnight they made a great case for my Mum to get CHC!! Which incidentally she hasn't yet got because of their delays in progressing the CHC.

You do need to do what's possible to get the NHS to progress CHC quickly. I went to a CCG Governing Body meeting this week and discovered our CCG is aiming to produce a 40% cut in CHC funding as part of the government cuts. Even the CCCG acknowledge patients' needs for CHC funding is increasing. There are very many groups (eg patient groups and save the NHS type groups) all round the country challenging these proposals but it's going to be an extremely hard battle.

 

[Eeviec]

I think you're right to be suspicious. Please read the thread on Continuing Health Care started by stanleypj - it'll give you lots of warnings about the things you need to be aware of. Don't agree to anything until you've had time to consult an independent expert (you can or used to be able to get 90 minutes free specialist advice from B****N - think "signalling fire" - H**lthcare).

What I found useful was to get hold of photocopies of the hospital Ward Assessments done on my Mum. When the hospital said my Mum was unpredictable, unaware of danger, such a high falls risk that even in hospital (with the staff trying to ensure she never moved without staff support) she'd had 2 falls in a fortnight they made a great case for my Mum to get CHC!! Which incidentally she hasn't yet got because of their delays in progressing the CHC.

You do need to do what's possible to get the NHS to progress CHC quickly. I went to a CCG Governing Body meeting this week and discovered our CCG is aiming to produce a 40% cut in CHC funding as part of the government cuts. Even the CCCG acknowledge patients' needs for CHC funding is increasing. There are very many groups (eg patient groups and save the NHS type groups) all round the country challenging these proposals but it's going to be an extremely hard battle.

Thank you so much for that, I will read stanleypjs thread and ask for copies of the ward assessments to start with and get in touch with the "fire signal " organisation . I had absolutely no idea of the minefield we were entering as we have been managing mum for 4 years without any help and have been blindly agreeing to everyone's suggestions thinking and presuming they had her best interests at heart.
Does anyone know if we are responsible for paying for her care at home or in a care home whilst the assessment is ongoing as I have heard conflicting evidence . Have I made a mistake by telling the hospital social worker that we would be self funding ? Is it appropriate that I ask if she could get intermediate care for a short time while her shoulder hopefully improves. Social worker already told me mum is desperate to get home and she needs to respect her wishes, however I think mum would understand if I explained about her toilet needs. She had very little mobility before but has not taken one step in hospital , just sat in a chair all day every day. I am totally shocked at some of the stories on here....it is truly heartbreaking.

 

[Pete R]

Hi Eeviec,

Don't get your hopes up over CHC. Most people with a basic Nursing need pass the checklist but then fail to get full funding when the DST is completed as the barrier is set very high. Your Mum would however be likely to be entitled to FNC which is £155.05/week but is only payable if she went into a Nursing Home.

If your Mum was to go into a Care or Nursing Home or goes back home she would have to pay till a decision is made on CHC and if successful it is then claimed back.

The SW should not have asked you about money but they would have found out at some stage that your Mum would be self funding so do not worry about that.

Intermediate care is a possibility but with you and your Brother helping at home you would have to persuade them that there is some benefit to be gained in mobility. Are Physio actually doing anything whilst she is in hospital?

When you say your Mum will be self funding does that mean she has money in savings or is it just property?

Sorry I cannot be more positive.

 

[Eeviec]

Hi Eeviec,

Don't get your hopes up over CHC. Most people with a basic Nursing need pass the checklist but then fail to get full funding when the DST is completed as the barrier is set very high. Your Mum would however be likely to be entitled to FNC which is £155.05/week but is only payable if she went into a Nursing Home.

If your Mum was to go into a Care or Nursing Home or goes back home she would have to pay till a decision is made on CHC and if successful it is then claimed back.

The SW should not have asked you about money but they would have found out at some stage that your Mum would be self funding so do not worry about that.

Intermediate care is a possibility but with you and your Brother helping at home you would have to persuade them that there is some benefit to be gained in mobility. Are Physio actually doing anything whilst she is in hospital?

When you say your Mum will be self funding does that mean she has money in savings or is it just property?

Sorry I cannot be more positive.

Thanks Pete, that's re assuring. Her little house has sold and she is in housing association bungalow so money is savings. Not a huge amount , would probably be swallowed up in a couple of years. Is it possible to get local authority care home rates if arranged through them or hospital social worker as I have heard that self finders pay a lot more ? Physio working with mum whilst in a chair but no walking because of shoulder. Would trying for reablement care affect the chc process ?
I understand only too well having come to this forum there are difficult times ahead, however in a funny way a cloud has lifted as I realise there are thousands of families in the same situation .

 

[Shedrech]

hello Eeviec
welcome to TP
I'm glad you're already finding it helpful to be here - I agree that TP makes such a difference; just knowing that there are folk here who have similar experiences and will offer suggestions to help is reassuring and breaks through the isolation carers can feel

I don't understand why the SW is asking for an annual fee to organise care - I'd want more details in written form about that

it used to be that a free 6 week re-ablement package was put in place by the Local Authority Adult Services for those being discharged with ongoing care needs, to make sure the person did not end up back in hospital as a 'failed discharge' - after that, care was paid for by the person - maybe ask specifically about this (I fear such packages are being cut back, or provided only for those who will make a 'full recovery' for want of a better term) - this kind of home care was brokered through the LA for my dad, so he was charged at the LA rate for care at home; I doubt there is any such way of having care home fees kept at the LA level - any care package put in place doesn't affect a CHC application

also, it may be possible for this kind of care to be provided in a care home - so worth asking whether this is possible for your mum, as she does sound to be in need of 24 hour care at the moment - if your mum is self-funding and either agrees herself to move into a care home (either for recovery or permanently), you can go ahead and organise that for her - you're right that self-funders pay more in fees, sadly that's just how it is: the LA will only part fund when your mum's savings fall below £23250, she will then have to use her state pension, half (I believe) of any personal pension and lose her Attendance Allowance

£630 a week is reasonable for the level of care being considered, so you are right to think that a stay in a care home may well be worth considering - it would give you a chance to weigh up the situation, and see how your mum is when living with 24 support around her - it would mean that the strain of her physical care is taken from you, so you and your brother can visit and your time together is purely social

best wishes

 

[AlsoConfused]

I feel it's a good idea to avoid telling NHS or SS people that someone may be self-funding until it's unavoidable.

I'm guided by the cynical thought that if the hospital SW feels she may have to battle out "who pays for this client" with an equally clued-up council SW, the chances are that the discussion will be more honest, there'll be less gamesmanship between the two of them and more attention will be paid to whether the client meets the criteria for CHC.

Most relatives aren't at all clued-up about CHC. The hospital initially did a CHC assessment on my Mum without even explaining to my wholly naïve 91 year old Dad (the only person told something was happening) that CHC was an option or that other family members should have been involved. He was easy meat for them.

 

[Eeviec]

I feel it's a good idea to avoid telling NHS or SS people that someone may be self-funding until it's unavoidable.

I'm guided by the cynical thought that if the hospital SW feels she may have to battle out "who pays for this client" with an equally clued-up council SW, the chances are that the discussion will be more honest, there'll be less gamesmanship between the two of them and more attention will be paid to whether the client meets the criteria for CHC.

Most relatives aren't at all clued-up about CHC. The hospital initially did a CHC assessment on my Mum without even explaining to my wholly naïve 91 year old Dad (the only person told something was happening) that CHC was an option or that other family members should have been involved. He was easy meat for them.

Thanks Shedrech
I feel a little more enlightened about the whole situation. Will try and research as much as possible and arrange a meeting with hospital social worker to discuss my ever growing list of questions . As far as I understood the £260 per annum was for her to source the care for us as opposed to doing it ourselves. When she said the package would be reviewed after a week I said " so you will come out and see how she is doing" she said only if it was absolutely necessary, or I will pass you over to social worker in your area. Any ideas if either hospital or la social worker would be of benefit to us as we would be self funding initially or would we be better off having no involvement with either of them and going it alone. She just seems so blasé about spending mums money i.e 45 mins to an hour for two people to get her out of bed in the morning, washed and into a nightie and dressing gown and same again to put her to bed in evening. What if they say it takes them longer, the price will just escalate. My neighbour has told me horror stories about her mums carers, stretching their visits out , hiding in the bathroom on their mobile phones, having a sit down and cup of tea with mum, never being on time etc, which I appreciate is sometimes unavoidable. It's bad enough forking out £630 a week for 2 carers @ 4x45min visits per day which is 3 hours per day care, or £840 per week for 2carers @ 4x 60 min visits which is 4 hours per day care when we still have the bowel movement problem. At least in a home she would get 24 hour care along with all the social aspects of being around other people, activities or her privacy as required. I suspect I have a few more days to get my head around it all as they have not decided on which hoist yet ( the first one they were using required 3 people to get her up ) and still awaiting a special chair for mum. Wish me luck lol

 

[Eeviec]

The £260 sounds like the 'administration fee' that the LA wanted to charge us for arranging carers for my aunt. Instead we found an agency ourselves and the service was excellent.
If your PWD will be self funding for at least a couple of years you can probably go ahead and find a care home yourselves.
You can read my other posts to find out how we used an independent social worker who was a great help and support to us.

Thanks for that tip Normaleila, I have a meeting Tuesday with the social worker and will decide whether to go it alone after speaking with her
Also a big thank you to everyone for their input....very informative !

 

[AlsoConfused]

Good luck for your meeting tomorrow.