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Direct Payment dilemma

LeoAces Member Posts: 4 Listener
edited October 13 in Benefits and financial support
Hello:) I'm looking for some advice. 

Currently I receive Direct Payment to pay for my care. I have been deemed unable to contribute to my care costs. 

I have 24 hour care, I require somebody with me at all times. I'm having real trouble at the moment hiring a live in carer with the budget. Private live in carers expect more than £108 per day. I'm trying to get my social care package reassessed, as I can't recruit anybody. 
I'm unsure if my Direct Payment is particularly low or whether I would qualify for Continuing Health Care Payment? When I see the amount others can pay their carers, it's more than double what I can afford! 
Has anybody else had this problem? Am I missing something? 

Many thanks, 


  • woodbine
    woodbine Community Co-Production Group Posts: 5,668 Disability Gamechanger
    @LeoAces good morning and a warm welcome to scope, I'm afraid your problem isn't something I have any experience with but i'm sure someone who has will be along during the day so keep checking back.
    I am a person with epilepsy not an epileptic, my illness doesn't define me.
  • Ross_Scope
    Ross_Scope Posts: 5,464

    Scope community team

    Hello @LeoAces and welcome to the community, how are you today? 

    How is the re-assessment process for your social care going? Has a start been made on that yet? 

    I don't have any personal experience of direct payments but I'm sue that others will be along, you might also find this page from Carers UK helpful.
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  • LeoAces
    LeoAces Member Posts: 4 Listener
    Thanks @Ross_Scope 😊
    I've had one meeting with a social worker and OT so far. They went away with a very detailed care plan that I wrote describing my needs. 
    The social worker allowed me to read a copy of my last assessment in 2020. I'm concerned as my care needs are not perticularly different to my last assessment, making me think an increase in my Direct Payments is unlikely. Hence why I'm wondering whether I shall be entitled to a Continuing Health Care Assessment. 
    SOUFIEGAL Member Posts: 12 Listener
    To get NHS funding for your care you would need to prove that there was at least part of your care needs that resulted from a need for medical as opposed to social care.
    I suggest that you speak with your council and their social work team and ask for that sort of referral.
    I would also suggest that you seek assistance from an advocacy group. You can ask your social worker to refer you or self refer.getting NHS funding is often a long winded process and it can be draining for an individual which is why I suggest an advocacy service to support you and assist you in making your case.

    I hope the above is helpful. If I had to stop work I worked in social care doing assessments for care packages.

    kind regards 

  • LeoAces
    LeoAces Member Posts: 4 Listener
    Thanks @SOUFIEGAL
    Yes, it sounds like it's the NHS funding that I am missing. The social worker has said they they will refer my case to the Continuing Health care department. I'm just surprised that I've never had this before as I have Cerebral Palsy all my life and always required 24 hour care! 

    SOUFIEGAL Member Posts: 12 Listener
    From my experience it appears that you have to ask to get it it’s not automatically given to an individual.

    Also I do suggest you try getting help from an advocacy organisation locally even if it’s just for you to be able to put your case together

    I found that the NHS procedure was stressful for my service users and having the extra support made the whole process easier
  • MarkM88
    MarkM88 Member Posts: 2,019 Pioneering
    Please see this site below:

    it will be a multidisciplinary team that carry out the assessment and it’s based on needs not any particular condition or health issue. 

    There is a checklist on that link you can download. 
  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Hi, I have been getting Direct Payments (DPs) since 2011.
    In my last assessment (2019), the Social Worker said she wanted to try for Continuing Health Care (CHC) contributions towards my care.
    Then my assessment allowed me 27 hours, plus to waking nights a week.

    I did qualify for CHC, so the council, CHC pay half each. I pay £40 a week myself toward this. I was very surprised to get CHC payments.

    I now use PAs direct myself and they are paid £9.21p per hour. This amount is covered by the social services.(SS)

    I used to use an agency and they charged £20 an hour. The SS agreed to pay £17.78 and I had to pay the
    difference myself, as a top up.

    The agency didn't give an efficient service, so I went back to just having PAs. It was hard to find anyone to do weekend work.

    A living carer will be expensive...especially an agency one.

    I don't believe having CHC will mean you have to pay any less. I wonder if it is just a way to save the council money.

    It seems when I was on DLA, it wasn't taken into account for means testing, yet PIP is included....???

    I hope you find someone  to help you.

    Take care.xx
  • LeoAces
    LeoAces Member Posts: 4 Listener
    Thanks @MarkN88 for the link 😊

    Thanks @pollyanna1052 for sharing your experiences. I also find it difficult to find live in weekend assistants. 

    At the moment, I'm despretlyi looking for two people to live in for two weeks at a time. I have a weekday assistant who works 10 hours per day, giving the live in carer time off. I can only afford to pay a live in carer £630 per week. Even with the 50 hours off per week, nobody is interested☹️
  • lisathomas50
    lisathomas50 Member Posts: 4,715 Disability Gamechanger
    Carers are in short supply  at the moment some company's have even been phoneing round staff that have left because they are so short staffed  live in carers are hard to come by 


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