A bit of advice needed — Scope | Disability forum
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A bit of advice needed

Nashville Member Posts: 15 Listener
This is a strange one and your advice sought as to how to go about sorting it out.  I am not sure if I am in the correct category even.  My friend had a stroke in February and then Covid 19.  He is not yet retirement age but is now severely restricted by his stroke and very vague either from his stroke or covid 19.

He  is in an extra care facility owned by the council but the on-site care contract is with a private company.  He has been assessed for a care package by social services which has come up with 22 hours a week.  He is responsible for his own costs and the care company supplying the care wants the care package changed to 35 hours.  The 22 hours assessment was done after he left hospital and those fees were paid for a short time by the NHS/ social services but his new contract of care direct with him asks for 37 hours weekly at the increased hourly rate of £22 versus the NHS contracted rate of £14.20.

so, there is a bit of a disagreement going on.  What point is there to a social services assessment if it is not to be used?  My friend has not got worse.  I have suggested a compromise of 30 hours but that has been rejected.  I expected the NHS hourly contract rate to be lower than privately funded but am shocked to privately buy an hour’s care is 35% more expensive.

I think that if social services were paying he would be on 22 hours In perpetuity but because there is a chance of more money it is a try on. I have suggested a new social services assessment but pointed out that if his current 22 hours are inadequate and unsafe he shouldn’t be on that level and the assessment is wrong.  Social services don’t want to admit that of course.  Equally, at no point has the care company challenged the assessment as to it not reflecting my friends needs.  There seems to be a bit of a black hole where the care company just demands what it likes.  I am involved since I have applied for an LPA as my friend’s ability to speak clearly and retain information has gone and access to his bank and investments is needed.

In an ideal world I would have my friend log his care but he is not up to that and is happy with the care he is getting.  Ie 22 hours.  I have suggested the care company ask his carers  to log their care but have had no response. Privately, I have lobbied his carers regarding hours spent and doubling up etc and 22 hours is about right.  

I imagined that offering a compromise of 30 hours would be accepted.  A kind of win win but sadly the care company is not backing down.  Equally, I have no idea of the qualifications of the care company representative who has come up with 37 hours.

I am wondering if this whole area is a bit of a scam in that my friend’s costs are likely to be circa £60000 pa all in at 37 hours care but circa £54000 at 30 hours including his rent and food.   So his money will run out and he will be down to the £23k ish level of entitlement from whence his care costs will be paid.  Perhaps the feeling is that it is of no consequence who profits from the diminishment  of my friends funds as eventually he will reach benefits level.  A ‘sort of dig in quick’ mentality as it doesn’t really matter since the government will eventually pick up the tab.

any advice on the way forward happily received.   Equally is the above normal procedure?

many thanks in advance.



  • janer1967
    janer1967 Member Posts: 15,268 Disability Gamechanger
    Hi and welcome to the community, glad you joined us. I am really not able to answer your question as this all sounds very complex.

    I would suggest you contact CAB or welfare rights or maybe there is a stroke charity that can help. I think you need some specialist advice.

    I hope there are some other members who may have more knowledge in this area
  • steve51
    steve51 Member Posts: 7,154 Disability Gamechanger
    Hi @janer1967

    Good Afternoon & Welcome it’s great to meet you today.

    I am one of the Community Champion’s here at Scope.

    Yes I have had Stroke myself.

    Here’s some info for you on the “Stroke Association”


    Please please contact them as they have got lots of great info/advice available.

    If you have any further problems please come back to me.

  • Tori_Scope
    Tori_Scope Posts: 8,262

    Scope community team

    Hi @Nashville!

    I just wanted to check in to see whether you'd been able to get in touch with Citizens Advice or the Stroke Association, as suggested by some of our other members? 

    This sounds like a very tricky situation, but you are a really great friend for helping him out.

    Please let us know if you have any further questions :)


    Online Community Coordinator, she/her

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  • Nashville
    Nashville Member Posts: 15 Listener
    How kind of you to remember me.  Yes, I got the Stroke Association to help and finally got the PIP forms at the end of July. Took 2 months for them to be sent and then 2 lots came at once.  like buses!

    So far ESA has been denied as too few stamps paid in the relevant year and savings are above the ceiling  set.  The actual 37 page PIP form has not arrived yet but I am hopeful as we are now in the system.

    The latest problem is that my friend’s signature has changed post stroke and the bank requires proof he is who he is.  Mobility issues make this difficult but his cheques will not be honoured until his new signature is accepted.  He has also moved into an assisted care facility so his address is now being questioned too.

    I continue to be alarmed by the potential care package costs.
    At one point the care hours proposal went above 40 hours per week. Lots of talk but nothing in writing yet beyond my questioning the value of a Social services needs assessment which can be ignored.  I was pleased that the word proposal was used by the care company  and my name was spelt correctly on a potential spend of over £50,000 annually.  The previous contact was to send me a contract for signature - no discussion suggested and using a misspelt name. 

    My lasting power of attorney paperwork is going through which might be helpful going forward as his financial assets are gradually sold.  

    I have had the support of a very caring social worker who helped me liaise with the Stroke Association.  Unfortunately that social work team is now off the case and my friend is now in a pool which is proving unresponsive already.

    Interestingly I got a lot of advice from a privately owned live in care company.  As long as you only need one carer and have 2 bathrooms and a spare bedroom that seems a bit of a good deal.   The kicker on care costs is requiring two carers to ensure safe movement.  

    I have been very lucky that up to now I have not even had to think about all this. I admire you all on this site for coping with both your disabilities and the care and financial complications they present.

    thank you all again for your support.



  • Tori_Scope
    Tori_Scope Posts: 8,262

    Scope community team

    Of course, it's no problem @Nashville :)

    It sounds like you've had a proper time of it! I'm glad the Stroke Association could help. Indeed, much like buses  :D They do say good things come in threes...

    Yes, I think being in the system is an important step. 

    Ugh, they really don't make things easy do they :( I hope the signature and address situations get sorted soon. 

    Oh dear, you'd think they'd check they'd got the right name. 

    Hopefully having a lasting power of attorney will help. 

    It must be difficult losing a social worker that had been so helpful, especially when the replacements aren't being responsive. Fingers crossed that they'll pull their fingers out, and the private care agency can give you more advice if you need it. 

    Do you think he'll need two carers? I can imagine that does bump the cost up considerably. 

    I'm sorry I'm not able to offer you any advice, as I've never been in this situation, but please do post on the community any time you need to ask questions or vent. We're all here to listen and help where we can. 

    Keep us updated on the ESA and PIP situations!

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