What do you all think?



I really need some help and input from other members about whether or not I should challenge the local authority which has now decided to charge my mother (via me as I have an EPA) for the full cost of her care package. This is likely to be a long explanatory post, and you know most of it already, but please bear with it......
My mother is 85, lives alone and was formally diagnosed with mixed, AD and vascular, dementia in 2003. We've noticed her increasing confusion for the last 10 years, she had reported memory problems to her GP from 2000 but didn't keep any of the follow-up appointments to the memory clinic. In 2002 I called in Social Services to support her as she seemed very confused, yet was determined to have her 90-year-old boyfriend, who was being discharged from hospital, to live with her.
Social Services put in a care package but were unable to do a financial assessment as she couldn't provide them with any details of her income. She didn't know. All her finances were managed by her boyfriend. He died a year ago.
Following this, she 'adopted' her gardener, and over the course of the next 5 months 'gave' him £17k, in cheques and cash. On discovering the financial abuse, I moved from my home in the Midlands to be close to her and sort out the court case and the chaos. She hates me, and always has done.
I've finally discovered her income and investments, begun to manage her money, and have liaised with Social Services, the GP, the clinic and others to arrange a package of care which will mean that for the moment, at least, she can remain in her own home. She's extremely difficult, has no short-term memory, has few skills remaining, is abusive, and isn't really safe to live alone, but refuses to go into residential care. I have applied for, and got, AA, at the higher level.
Social Services have now done a financial assessment on her, or rather I filled in the forms for them using the information I'd painstakingly garnered, and they've decided she should pay the full cost of her care package based on her pensions income. This is at a 'capped' rate of £5.67 per hour, although SS have employed an agency to provide her care, at a cost to them of £9.95 per hour. She has 21 hours of care per week. Direct Payments tell me that if I go with them, they will give me £8 per hour if I manage her care package totally, including timesheets for the staff etc. They point out that this way I'll get more care for the money - but actually they'll be better off if I go on Direct Payments, won't they? And I'll be tying myself into more administrative duties and more hassle for as long as it takes.
I wonder if I should challenge the Local Authority, and write a formal letter asking why they're charging her anything at all? I don't believe this is legal.
She has a recognised illness, and a lifetime history of untreated mental disorder. She has been financially abused while in their 'care', even though I drew their attention to the inappropriateness of her relationship with the man to whom she gifted money. Finally, the care provided has been so inadequate that I've had to give up my home, career and income to sort all this out.
I believe, very strongly, that the NHS should bear the cost of her care, and am willing to fight on this issue.
What are your views?


Registered User
May 20, 2004
I don't think anyone here is likely to disagree with you on moral grounds but it's all down to whether you have the energy to fight the battle. If it will help you to continue to deal with the situation then go for it but if you lose how will it affect you mentally?

Can you get legal advice as to what your chances of success are before you committ yourself to possibly more financial distress as well as the emotional turmoil?

Blood sucking parasites is my view but I don't suppose that would mean much in a court!

Good luck


Kriss said:
Can you get legal advice as to what your chances of success are before you committ yourself to possibly more financial distress as well as the emotional turmoil?

Hi Kriss,
I found a website www.************, and on there was the case of Stephen Squires who appealed against payment, and was backed by the Ombudsman, following the Coughlan case.
Here's an extract from what he says

" This fact is recognised in the Dept. of Health directive HSC 2001/17: LAC (2001)26. issued on 25th. September 2001. (page 31) "Where an individual's primary need is health care then the whole package of care must be paid for by the NHS."

Anybody with a 'health need' or 'disability' is thus entitled by law to have all their care costs met by the NHS. (Which includes all so-called 'social care' ) It therefore follows that the HA (or social services) do not have the legal power to apply 'eligibility criteria' or carry out 'means testing'. Both are totally unlawful because nobody can deny anyone those rights already accorded them by the law of the land. .

Furthermore, it is not even necessary for the primary reason for being in a nursing home to be a health need. ( as stated in HSC2001/17, page 31) Patients need only have a 'health need' or a 'disability' to qualify for NHS-funding of all their care needs. Consequently it is totally unlawful to 'Means Test' and charge patients for so-called 'social care'. All such patients - and their families - have a legal right to refuse to pay care fees and to reject the validity of 'eligibility criteria or to co-operate with any form of 'means testing' by Social Services Departments. It should be noted that the NHS acts provide for free care at the point of delivery: This can be in a hospital, hospice, nursing or residential home, the patients own home or that of a relative or carer - or a tent in a field for that matter! "

I am totally opposed, on principle, to Carers being expected to provide free caring to bolster a failing system, and I'm completely against ANY charge being made to anyone who has a mental or physical illness, whether they're cared for in the community or not. After all, that patient's family is ALREADY paying in terms of time, effort, emotional input and understanding, and these payments should fall within the remit of the NHS to which my mother, and other dementia patients, have made contributions for most of their lives.
I support, wholeheartedly, the AS campaign to make all dementia-care free at the point of delivery, and to place it on an equal footing with other illnesses. The NHS shouldn't be able to cherry-pick what it wants to treat, and what it doesn't.
So I thought that my best contribution to the campaign would be to set up a (publicised) test case against the Local Authority which handles my mother's care. I don't know whether there's anyone else on this board who has been means-tested, but I think that if we are, we should follow the advice on the nhscare website, and write to the PCT and Social Services, initially, telling them that charging for this care has been deemed illegal, and seeing what result we get.
It's worth a shot. It's also worth taking it to the Ombudsman if I fail with the local authority.
My mother and her estate have already lost £17k because of the symptomology of her illness. And then there're the costs I'm incurring.
I don't think I'm willing to put up with this any longer.
Anyway, writing letters comes fairly easily to me, and makes me feel better. I'm a health writer/journalist :)
Last edited by a moderator:


Registered User
May 20, 2004
Then I think you should go for it BJ.

Putting it in writing will probably start to rattle their blasted cages quite violently.

Keep us posted.

(a closet rebel at heart!)


Registered User
Aug 10, 2004
hi bj, Ithink you should start those letters rolling.I think it is terrible what they do to us they want us to care for our relatives and pay us peanuts in return but not content with that lets also get people to pay for thier own care.Do they forget what the NHS is supposed to be about. storm


Registered User
Oct 9, 2003
Birmingham Hades
Hi bj
I think you should go for it,but not alone.
Many organisations provide advocacy services I would suggest that you start with the Citizens advice bureau ,they could point you in the right direction.
It's sad that the people who make the most noise get what they want,but it;s a fact of life that it is true.
All the luck in the world to you ,if we can help shout out


Registered User
Oct 23, 2003
West Sussex
Hi BJ, Iwas told I could get Mum's care cheaper if I went straight through the agency. Thing was, if I had, I wouldn't have had SS back up in any emergency or problem situation and we had an absolutely fantastic SW. When I got Mum home from hospital the last time before she died, because she was considered to be terminal, we got full nursing funding. To this day, I still am not sure whether it was because she had End Stage Dementia, or because of the broken hip, necrotic heel etc. that was all caused by bad nursing in hospital. I am going to send the details on to Samantha, because it all ties in, the care should be there for all of the illness. Love She. XX


Registered User
Dec 11, 2003
Tully, Qld, Australia
Dear BJ,

I totally agree with every word! I think that we are all sick and tired of being unpaid welfare workers.

I suspect one of the reasons that the Govt is dragging the chain on this issue is because dementia suffers can no longer vote and are therefore deemed to be of no importance - despite having paid taxes and NHS contributions all of their lives.

Good luck with the quest. If you need any help, just yell...!


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