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Who pays for what when care is needed?

edited 30 November -1 at 1:00AM in Disability Money Matters
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Simon7685Simon7685 Forumite
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Part of the Furniture 500 Posts
edited 30 November -1 at 1:00AM in Disability Money Matters
My Mother is terminally ill and been told we are looking at months, she is end stage heart and renal failure, with other associated problems. I have been having problems with Social Services and the financial assessment in particular. At first it was nil then because she got higher rate AA from lower rate, the council took the lot from her. They refused almost every DRE we had put forward in order to maximise what they could take in my opinion.

I am on UC & PIP myself but do as much as I can, I deal with everything bills, money, prescriptions etc etc. I also do all her shopping, she eats mostly fresh things now and dairy so it needs getting usually 3 times a week. My Mother gives me £20 a week to cover all the petrol I use, without that I wouldn't be able to do the things for her as I can't afford the petrol.

So I asked for this to be allowed as a DRE, they refused and said that she had to pay that out of her money, that is what the Minimum Income Guarantee was there to cover.

As I understood it a DRE was a cost incurred as a direct result of a persons disability, therefore as she cannot go to the shops herself, the costs involved to do her shopping are surely a DRE?

If she asked for more time in her care package so the carers did it, would she have to pay for that herself? She cannot do it herself because she is housebound and can only be taken out in a wheelchair, so any costs incurred should be a DRE?

If she wanted to go into town and be taken in a wheelchair and we asked for that to be put into her care package for an hour each week, would she be expected to pay for that herself? Or would it be covered by the Council?

If she paid for her shopping to be done it would need 3 to 4 hours a week, so from what I have found out that would cost her £45 to £60 a week based on £15 an hour for a carer. Surely she cannot be expected to have to pay that out of her MIG? It would leave her £129 a week, if she then asked to be taken out once a week another £15 at least would go.

So after her shopping being done and been taken out once a week for 1 hour she would have £114 left to live off, pay her bills, buy her clothes, and eat. Surely that cannot be right in this day and age!

I am in the process of appealing against the financial assessment so any help or advice would be appreciated. Particularly around the Disability Related Expenses. Which reminds me, we got a table top dishwasher for her last year as she couldn't manage to stand or sit to do her washing up anymore. The Council have also refused to allow the cost of that as a DRE because they said the Carers can do it now! Even though at the time she did not have any Carers.

Thanks in advance


  • sheeps68sheeps68 Forumite
    658 posts
    Part of the Furniture 500 Posts Combo Breaker
    Does your Mum have a specialist nurse if so I's ask them for support or maybe a hospital social worker. They are best placed to help you. If Mum is involved in a hospice they too will help you.
    14.4K posts
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    Contact your local hospice.

    They should be able to advise you and put you in touch with organisations that can help you.

    I understand some of what you are going through.

    We have a complaint ongoing to be heard later this year. It will not help us but may help people like yourselves in the future, hopefully.
  • donnalovedonnalove Forumite
    574 posts
    I'm appealing my daughters social care charges just had a meeting today. They want £67 a week for 3 days at a group.They take all PIP into consideration.
    She's 22 and lives with us but won't allow anything for the fact our costs are higher and the fact it costs around £30 a week to take her to her group. They also said they cant allow for the fact we use some of her Pip towards the mortgage as we had extension for her( as social services refused to help years ago)as if they do they could then say that as she pays towards the mortgage she has a financial interest in the property so they could then put a charge on OUR HOUSE and assess her as owning a share in property! Money grabbers is all they are. If i don't get charges reduced i will be taking it further as it's so unfair. Plus the government have set the MIG way to low! Try disability law see if they can offer advice.
  • cantcopecantcope Forumite
    1.8K posts
    Part of the Furniture 1,000 Posts Combo Breaker Debt-free and Proud!
    Hopefully you will be able to find some better support. In the meantime, rather than spend £20 a week on petrol to do the shopping , get it delivered, it would be much much cheaper and rather than you having to spend time at the shop you can just help unpack it for her.
    Last bet : 26th Oct 2006:j Debt free 25th Feb 2008:j Living "my" dream:T
  • bellabooskibellabooski Forumite
    160 posts
    Part of the Furniture 100 Posts Combo Breaker
    Ask social services for a form for NHS Continuing Healthcare as your Mum is so very I’ll it sounds like she would be eligible to have medical care paid for by the NHS. They don’t openly promote or advertise it. I’d never even heard of it until I lost my partner 3 years ago. I was told about it by the Matron of a hospice because the hospice was overstretched and we just didn’t have hundreds of pounds per week to pay for a nursing home. We got my partner into a lovely nursing home paid for by the NHS Continuing Healthcare. Sadly she passed away after 3 weeks but was given the best care.
    It’s a truly difficult time for you without all the extra worry and stress.
    I hope you find nice place for your Mum to spend her final days. My heart goes out to you at this very sad time.
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