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Can you claim back care home fees?

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The One Show Team | 13:05 UK time, Wednesday, 14 October 2009

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Dom Littlewood has been looking at the changes to the assessment rules for care home funding, which could mean that patients can apply for a refund on their fees. Watch Dom's report by clicking play above.

Previously, in England, each health authority used a different set of criteria to assess the funding a patient was eligible for.

Since October 2007 however, the rules for assessment changed and one system was implemented for the whole of England.

Wales follows similar rules to England, with Local Health Boards being required to follow Welsh Assembly Guidance from 2004.

Northern Ireland also follows rules that all care is paid for if the main need is a health need. A single assessment tool was launched in February and is currently being rolled out. But you cannot claim retrospectively here.

Scotland follows a completely different system, where all NHS care costs are always paid for. But individuals may have to pay for their room and board costs, on a means tested basis.

Who may be eligible for a refund?

Those with serious health needs who have been admitted to a nursing home in recent years could be eligible to claim their fees back.

How do I apply for a refund?

If you believe a relative was wrongly assessed, before October 2007 or since this date, then speak to your social worker, health practitioner or local Primary Care Trust for a continuing care review or ask for a retrospective assessment from when they first entered the nursing home.

If it's decided your relative was wrongly assessed, then you could get your money back.

You are able to claim back fees retrospectively for care even if the relative is no longer at the nursing home. How far back you can claim depends on where you live.

  • In England you can claim back fees from April 2004 onwards.
  • In Wales you can claim back fees from April 1996 onwards, but from 4th December 2009, you can only claim back fees from April 2003 onwards,
  • In Northern Ireland, you are unable to claim back fees retrospectively.
  • For info about the system in Scotland, see the link below.

Sources of advice

Alzheimer's Society

Help The Aged website - Help with nursing care costs, England, Wales, Northern Ireland (and personal care in Scotland).

Help The Aged also offer a SeniorLine on 0808 800 6565 for free advice on financial matters.

Other sources of advice:
Direct Gov website.

For more information on what funding is available in Scotland, visit the Scottish Government website.

Have you attempted to claim back care fees? Share your stories and experiences with other viewers, here.

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  • 1. At 7:15pm on 14 Oct 2009, diamondalimac wrote:

    The info you direct Scottish viewers to (ie the Scottish Executive website) gives only details of 'Free Personal Care'. This is not the same as Continuing NHS Care. Free Personal Care represents only a drop in the ocean towards the payment for care home fees. I have tried to no avail to find out about Continuing NHS Care in Scotland but have not managed to get anywhere. Is there anyone out there living in Scotland who has successfully claimed Cont.NHS Care?

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  • 2. At 7:21pm on 14 Oct 2009, sazhar wrote:

    You may not realise, but if you have a relative who has a terminal illness they can recieve Meals on Wheels through continuing care, not many social workers dont know about this but your local authority should, usually though the the food and nutrition team.

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  • 3. At 7:23pm on 14 Oct 2009, VickGus25 wrote:

    This comment was removed because the moderators found it broke the House Rules.

  • 4. At 7:28pm on 14 Oct 2009, Cazsoton wrote:

    Its not only Continuing NHS Care that should be looked into, my mother was diagnosed with Alzheimers in 2004 and is now in nursing care, my father has dementia and is in Residential care I am glad to say they are in a dual registered home so are together. The help they have received from our City Council is unacceptable with regard to the 12 week property disregard, my father has received the payment but to date (since February 2009) not a penny has been received for my mother. This is totally unacceptable as their fees are in excess of £1200 per week, and yes I have had to sell their house. Is that fair?

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  • 5. At 7:39pm on 14 Oct 2009, Pollyphony wrote:

    My mother has Alzheimers and was living with my sister in N Ireland when she had a fall and suffered a broken hip. Whilst in hospital awaiting an operation to pin the hip she was not monitored sufficiently and tried to get out of bed breaking the other hip. The hospital/Social Services would not allow her to return to my sister's care as she was now virtually bedridden and doubly incontinent in addition to her Alzheimers. She has been in a Nursing Home in N Ireland ever since and all her fees were paid from capital until it fell below £23K and the local authority now contributes. I did query this some years back but was told that the UK rulings on healthcare did not apply in N Ireland. Since her capital is now down to this level and N Ireland does not accept retrospective claims have we missed the boat? Why the difference between the countries that make up the UK? It seems very unfair.

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  • 6. At 7:44pm on 14 Oct 2009, brewsterblog wrote:

    Started the process of trying to claim back fees after reading newspaper article back in October 2008 about a solicitor (of a firm called KPS based in St Helens) who had successfully claimed for his own mother. I called them to see if they could help me and my dad.
    I filled out a KPS questionnaire to see if my dad was eligible, KPS confirmed that he was. The fee to fully investigate was £250+VAT which I paid on 6/3/09.

    I haven't heard from the solicitor for some time and have been trying to contact them for a status update.

    My dad was admitted to a nursing home 2003. He is insulin diabetic, a double amputee, almost blind, with rhumetoid arthritis & is incontinent. My dad paid his care fees using savings and investments and when these ran out he was forced to sell his home.

    I'm wondering if there is anyone based in the North West UK region (Cheshire Health Authority) that has a similar experience to share..?

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  • 7. At 7:47pm on 14 Oct 2009, glenduff67 wrote:

    I have found some info on Continuing NHS Care I'm still digesting what it all means and if I should persue a retrospective claim for care home costs for my late mother who sadly passed away in december last year, the link below may give you some help.

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  • 8. At 7:50pm on 14 Oct 2009, marineFox1234 wrote:

    My Father had a stroke in 2007 which left him paralysed down one side, doubly incontinent and slightly confused. he is effectivly bedridden. He cannot get either in or out bed unaided (using a hoist involving two nurses) or eat without his food being cut up for him.
    Despite this the local PCT has decided that his need for residential care is not one of a Primary Health Need (the stated requirement)and therefore he does not qualify for NHS CHC.
    This is patently absurd. it is purely a political con whereby the government can say the help is available but hardly anyone qualifies for it.
    You need to be almost totally helpless and at death's door to get funding. I doubt that even Steven Hawkins would qualify.

    My brother and I have taken on the local PCT and despite two failed assessments we are now at the appeals proceedure and will if necessary take our case to the Ombudsman. It seems that only those who are able and prepared to fight the system get justice under the current rules.

    Good luck to anyone else who is struggling with this inane bureaucracy.

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  • 9. At 7:52pm on 14 Oct 2009, ladystiggles wrote:

    Can any one who watched this piece on tele, could tell me the name of the solicitors that the lady used. As we are fighting care home payments even after our mother died last November. we still believe we should not have had to pay them, Our mother had Alzheimers, and was in a secure unit within a care home, she also had feeding problems from prevoiusly having throat cancer. The care home are still trying to get five thousand pounds out of us, even though i had to have her death investergated due to neglect at the home. We really do need help.

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  • 10. At 8:03pm on 14 Oct 2009, andy_rob8685 wrote:

    My nan has just recently been taken into a care home. She has been diagnosed with what is technically called heart failure, she cannot walk unaided or with atleast 3 people helping her and is incontinent and 86. Her assessment results are due within a few weeks, but the social workers and care home staff are not holding out much hope for her to receive full funding. She is in the process of selling the house also. fingers crossed she gains full funding. But after watching the programme tonight, I have told my mum and dad that they have to fight the decision until its overturned as I simply do not see how we can live in a country that says to its citizens "work hard all your life, pay into the system all your life, bring up your kids as best as you can all your life but we wont help you when you so dearly need it" I'm only 26 by the way and this whole process of getting my nan sufficient care has certainly opened up my eyes for the future.

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  • 11. At 8:07pm on 14 Oct 2009, blueangelbingo wrote:

    My Mother died In November 2003. Her home had been sold to cover over £90,000.00 in Nursing Care home fees. She was in a secure EMI unit, and needed constant care.
    I heard the law had been changed, but how disgusted was I to find that if she had died in Wales in 2003, her costs could be claimed back to then, but because she died in England the law did not apply prior to 2004. She missed the deadline by just 20 weeks ! I am ashamed to say I am English, and feel the family have been let down by our own Government.

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  • 12. At 8:32pm on 14 Oct 2009, poshgob wrote:

    Interesting stuff, have a look on the Alzheimers Society web site about the use of anti psychotic drugs on dementia patients. Have a read, then make up your mind if this is a way of the nhs saving money - shortened life expectancy even though the drugs suspect usefull = less time in care.

    Dom have a look at this one, you might save thousands of lives.

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  • 13. At 8:38pm on 14 Oct 2009, sportybecks982 wrote:

    The Government guidlines for all PCT,s (primary care trusts) in England is very clear, it is simply that the PCT,s do not follow the Government Guidlines but misapply them frequently.

    The proceedure for claiming fully funded continuing healthcare is a straightforward one and one I have undertaken for different friends and referals. It has to be demonstrated not what illness is being suffered but how the individuals present condition is affecting them in 11 (Eleven) different area,s.

    A continuing healthcare 'assessment' should be requested through the social worker or PCT and a specimen of the assessment that is used by the PCT to assess whether the individual achieves a 'positive' assessment can be downloaded from the governments own website.

    If the individual achieves 3 High level needs out of the 11 area,s of the guidlines they AUTOMATICALLY achieve a positive assessment and then this positive assessement goes forward to the PCT board for approval for the individual to be 'fully funded.'

    The process of assessment is deliberately kept secretive by the PCT,s because they are under pressure NOT TO FUND individuals.

    It took me 12 months of extremely hard discovery work in order to uncover the full information to achieve positive results for the people i have represented.

    I have now prepared a very useful factsheet of 12 different points of action that need to taken to achieve a positive assessment where justified.

    I am happy to discuss individual circumstances subject to bbc approval.

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  • 14. At 8:53pm on 14 Oct 2009, charriss wrote:


    I would like to have my deceased mothers case assesed by perhaps no win no fee solicitors...has anybody dealt with any firms with any success and without any upfront fees?

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  • 15. At 8:56pm on 14 Oct 2009, BasilofLutterworth wrote:

    My 95 year old Mother has been resident in a Nursing home for 2 years.
    I recently asked for her to be assessed for NHS Continuing Healthcare. The assessment was done last Friday and i and my Sister were present. My Mother has, amongst other things, Vascular Dementia, is unable to walk, get out of or into bed or a chair unaided, is incontinent (Urine and Faeces), is unable to wash herself and needs help to eat. She is incapable of handling her affairs and my Sister and Brother, together with myself, have Enduring Power of Attorney enabling us to do various things for her. Dispite all this, the NHS Assessment Nurse stated that she did not qualify for Continuing Healthcare as her problems were "Social" not "Health". I have queried this and at my request the matter is being referred to the PCT Panel shortly. One thing that amazed me was that a previos assessment in february gave her a "B" for Mobility but as she is now fully immobile this has REDUCED to a "C". The reason given was that as she is now less mobile she is at less risk from a fall! I agree with others, the whole thing is a sham - there is a lot of pretence by Government and the NHS that "Continuing Healthcare" is available but in reality it is almost impossible to get. I shall pursue right through to Appeal, the Ombudsman etc if necessary. My Mother pays in excess of £1000 per week and has now reached the stage where she has to sell her house!

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  • 16. At 9:10pm on 14 Oct 2009, Geddisgirl wrote:

    My mother was diagnosed with Alzheimers in 2000 and lived in residential care from 2003 until she died in June this year.I recently contacted my PCT for retrospective care assessment for my mother after reading about the changes in 2007. My mother was assessed by the PCT in 2006 and refused funding. Basically she was not "ill enough". My mothers home was sold to pay the care home fees which must have amounted to nearly £140,000. One thing that The One Show did not mention in its broadcast tonight was : "Hey, those of you who don't own your own home or have any savings that you have worked so hard for, don't panic about paying for your care, you have nothing worth taking therefore the government will pay it all for you."
    So true in this country, work hard and save - have it all taken away -why bother, I plan to spend the lot , just in case.

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  • 17. At 9:29pm on 14 Oct 2009, charriss wrote:

    Exactly, those with nothing pay...nothing, we received very upsetting letters from our health trust threatening to take her house to fund her care if we did not sell it within a certain timescale...very badly handled, I now want it looked into but I don't want to be shoved from department to department with the hope that I will get fed up and stop...this time I won't. I want to give the lot to solicitors to sort out...but not with upfront fee's surely the 'no win no fee' lot will get onto this soon enough..they have every thing else.

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  • 18. At 9:31pm on 14 Oct 2009, Rodneybirtles wrote:

    There were clearly missing items from the piece on the show. The name of the firm that Solicitor, Lisa Morgan, works for would have been useful consumer information.

    However, the news from 'sportybecks982' above is welcome and encouraging. Please, 'sportybecks982', could you tell us where we can get more information from you?


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  • 19. At 9:36pm on 14 Oct 2009, VickGus25 wrote:

    I strongly agree with Geddisgirl above. My father provided for us four children and looked after our mother who was wheelchair bound, having had thrombosis of the brain and he never claimed a penny. He worked hard as a self employed plumber/builder and this is what killed him - he was exposed to asbestos and died of Mesothelioma. He could not claim against anybody as he was self employed. My mother's full time care when he died cost £2,800 per month in her own home, where she was abused on many occasions by carers not only physically and mentally - but her money and items were stolen and a number of the foreign carers made attempts to defraud documents copying her signature for benefits and bank accounts. Because of this, we had to take our mother out of her own home for her own safety and put her in a care home. She is only 70 years old and has her wits about her but because of her brain injury which she's had now for approx 44 yrs, she is unable to stand, or balance even sitting and she is unable to coordinate her hands to do things. The council are now bullying her into selling her home which my father built and adapted for her. We are in a catch 22 situation. She apparently doesn't qualify for continuing care either, yet people can come over to the UK today with old shrapnel wounds from 20 years ago and get disability benefits when they've paid absolutely naff all into the pot.

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  • 20. At 9:39pm on 14 Oct 2009, Geddisgirl wrote:

    I would also like more information please 'sportybecks982'. I am determined to beat this unfair system.


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  • 21. At 9:39pm on 14 Oct 2009, marinemidnight wrote:

    My mother went straight into a nursing home from hospital four and a half years ago. She has received fully funded continuing health care, with regular reveiws every 3 to 6 months, as she has a progressive illness for which there is no cure. Her needs are greater now than when she first went in as she has deteriorated, but our PCT suddenly terminated the fully funded continuing healthcare without allowing me to appeal. However I challenged this decision and it is now going to a panel after another reassessment.
    Even if you are successful in obtaining this,you may find that it is suddenly stopped as in my case.I would be interested to hear if there are other people who have had their care withdrawn after such a long period,especially if they suffer from a progessive illness.

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  • 22. At 9:39pm on 14 Oct 2009, VickGus25 wrote:

    ....I need to add that my mother's money actually ran out in February of this year as she had been paying he £2,800 per month since 2005. This is why she doesn't have the money to pay for her continuing care herself.

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  • 23. At 9:46pm on 14 Oct 2009, Geddisgirl wrote:

    Exactly VickGus25, it is the generation who are in this dreadful predicament now, who upheld the NHS from the very begining with their hard working ethos, and now they are the ones who have to support all those who have never paid a penny towards the NHS in their lives.

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  • 24. At 9:49pm on 14 Oct 2009, shellBellaB wrote:

    The solicitor on the programme is Lisa Morgan. She works for Hugh James solicitors. They are based in Cardiff but it looks like they act for families all over the country. Her profile is on the web.

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  • 25. At 10:07pm on 14 Oct 2009, Rodneybirtles wrote:

    Thanks 'shellBellaB' - that's really useful information.

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  • 26. At 10:19pm on 14 Oct 2009, shellBellaB wrote:

    Thanks Rodneybirtles. It looks like she's been on the BBC before.

    There's also a link on this page to her firms website. Like you said it's a pitty the BBC didn't include it.

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  • 27. At 11:38pm on 14 Oct 2009, ireneross wrote:

    My husband had a stroke when he was 45 which left him totally paralysed down the left side. The stroke left him unable to walk and he can only use his right hand. He is now doubly incontinent and cannot do anything for himself except wash his face or clean his teeth if he is lucky. He is also an insulin dependent diabetic, and his brain does not function properly as a result of the stroke. He went into a nursing home in 2005 after being cared for by myself at home for 5 years. I could no longer continue with this as I was totally and thoroughly exhausted. My children and I had no life. We have pay over £1000/month for his care out of his benefits. I have two children and have to work full time in order to support them. I feel it is totally unfair that we have to pay for his care through his benefits as, after all, a stroke is a brain injury caused by haemorrage or blood clot. Where do do I go from here. I am totally exhausted with all the financial worry it has caused my husband and I. Where do we go from here??????

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  • 28. At 11:43pm on 14 Oct 2009, ireneross wrote:

    In addition to my comment above (Number 27) - My husband and myself have worked all our lives and paid into the system.

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  • 29. At 11:47pm on 14 Oct 2009, reflections9 wrote:

    The following will answer many of the questions asked above
    1 Google search Pamela Coughlan versus NHS Care
    2 www.NHSCare.info Your right to 100% NHS funded Continuing Care
    under UK laws & the Coughlan case
    3 I am Enduring Power of Attorney for my Uncle and has been in a Care Home since January 2002. The West Kent PCTs have agreed to reimburse the total amount of fees paid including interest
    4 Lisa Morgan is our solicitor at Hugh James, Tel No 02920 224871
    5 Hugh James do a No win, No fee agreemant. Excellent value for money

    Good Luck and don't forget the Couglan case set a legal president

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  • 30. At 05:02am on 15 Oct 2009, lotteryblog wrote:

    It is the Government's responsibility to pay for nursing care as the people involved have supported the country for the whole of their lives.
    If the Government needs extra cash then it should start with the hand outs it gives each day to all and sundry.

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  • 31. At 08:23am on 15 Oct 2009, Geddisgirl wrote:

    I think the BBC needs to check the facts regarding this story. They state that "only people admitted to a Nursing Homes and not a Residential care home " can make the claim for funding. This is incorrect and will put a lot of people off applying for funding. The majority of people with Alzheimers live in residential care homes which provide nursing care aswell.

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  • 32. At 09:40am on 15 Oct 2009, Nursingcaregirl wrote:

    This is an interesting and well researched piece of documentary.

    Lisa Morgan is clearly well informed.

    Her solicitors firm - the largest independent law firm in Wales - is clearly very experienced in handling so many cases across England and Wales.

    In undertaking so much work in this area she and her team have clearly developed a depth of understanding of the peculiarities of each local health board and how they mismanage the funding needs of patients.

    I hope that she continues to assist many more needy families in recovering this money.

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  • 33. At 09:47am on 15 Oct 2009, pgrowland wrote:

    My mother is 88, suffering from dementia, TIA, heart attacks, diabetes, incontinence, double fractured hip and mobility problems since 2006. She was in a private nursing home in Cheshire NHS PCT area, costing £815 per week (to date it has cost over £140,000) and her savings rapidly went below the threshold, her flat is now part of a deferred payment scheme and she has a debt to the Local Authority of £24,800. I applied for CHC funding on her behalf as Power of Attorney - it was declined by Cheshire NHS, saying she didn't meet the criteria. Her condition worsened so I appealed and they then insisted that before the panel could consider her , she would have to be moved to an EMI nursing home. I arranged this and in a few days she became withdrawn and anxious in that environment so I had no choice but to find a more suitable EMI nursing home. She then had a TIA and was hospitalised - followed by two further admissions for heart attack. Cheshire NHS then stated we would have to have a new assessment six weeks after her move to see if she triggered 'consideration' - this despite her previous submission and their insistance that she moves to the 'most appropriate environment'. The latest assesment actually moved her lower on the 'needs' checklist since the TIA and heart attack had made her more sleepy, docile and her behaviour was being managed without the need for sedative medication. I still await the panel's decision, it seems they are simply postponing in the hope people either give up or simply die. The only glimmer of hope is I have engaged solicitors (called Hugh James of Cardiff) to claim against Cheshire NHS and perhaps they will succeed.

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  • 34. At 09:51am on 15 Oct 2009, Nelson955 wrote:

    The information given that continuing care can only be given if the person is in a nursing home is incorrect. Continuing care can be provided regardless of the setting. Do a Google search on Barbara Pointon and you will find her story of how she cared for her husband who had early onset Alzheimer's at the age of 51. She eventually won her battle for fully funded continuing care, even though she was caring for her husband at home.

    The other thing is that all that needs to be demonstrated is a primary health need. But PCT's and social services fudge the issue and do not follow the proper criteria.You will have to fight hard, which we shouldn't have to do, but the NHS is determined to avoid it's legal responsibilities to fund people with primary health needs. Shame on them!

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  • 35. At 10:30am on 15 Oct 2009, Jamie wrote:

    May I offer one correction to the information given. You say "Those with serious health needs who have been admitted to a nursing home in recent years could be eligible to claim their fees back. However, this is only available to those admitted to a nursing home, and not a residential care home because the primary need for care must be health related."

    NHS Continuing Care can be granted to anyone living in a residential care home too, rather than a nursing home. So you can also claim back those residential care home fees, once you have gone through the process of appealing, of course.

    And, also fully funded NHS Continuing Care can be granted to a person in any setting at all - including living in their own home. It does not depend on the location. It is purely that if a "health need" exists, then that care should be funded by the NHS.

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  • 36. At 10:35am on 15 Oct 2009, dataflorence wrote:

    Interesting comments from sportybeck982, My husbands grandmother was put into a private nursing home following a fall at home and breaking her hip at the age of 98, my mother in law was told at the time she needs to go into a nursing home, we were 'told' what nursing home she was to go to, (feel Dr's had investment in the home).

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  • 37. At 10:41am on 15 Oct 2009, dataflorence wrote:

    .......ctd from last comment. regarding assessment, she did have continued health assessments and qualified for full funding, shortly after her 100'th birthday we were told that she needs to sell her bubgalow to pay for her home, we refused as we felt grandma had been though enough,they advised they could have a charge put onto her bungalow and when she passes away they would force the sale of the property to get there money back. We went along with this as we did not know any differnent and was all very stressful at the time. I am now wondering if she had funding why were we forced to sell her bungalow, we paid back £48,000 payable to the nursing home?? It crosses my mind the home had funding from goverment and a fat cheque from us??? Does ayone know who we can challenge about this???

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  • 38. At 11:03am on 15 Oct 2009, Nelson955 wrote:


    You would need to start off by contacting the local Primary Care Trust and get them to start the retrospective assessment process. It will be the NHS that you have to claim off should you be able to prove that your grandma had primary health needs. Take a look at this newsgroup where you can get good advice:-


    There are many contributors there who have gone through the same process and have been effectively hoodwinked by the NHS and local authorities social services. They don't want us to know the truth about their legal responsibilities.

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  • 39. At 12:50pm on 15 Oct 2009, Jamie wrote:

    Thanks for amending part of your article, but you still refer to "nursing home" where you say:
    "Who may be eligible for a refund?

    Those with serious health needs who have been admitted to a nursing home in recent years could be eligible to claim their fees back."

    The word 'nursing home' needs to be changed to "care home", because it is misleading. For example, many people with dementia live in residential care homes (which may or may not have a nursing floor/wing/unit) and can still be in receipt of NHS Continuing Care. It is nothing to do with nursing.

    You also say:
    "How do I apply for a refund?

    If you believe a relative was wrongly assessed, before October 2007 or since this date, then speak to your social worker, health practitioner or local Primary Care Trust for a continuing care review or ask for a retrospective assessment from when they first entered the nursing home."

    Please change the word 'nursing home' to 'care home'.

    The confusion about this is precisely what has caused major problems for many people. According to the Care Quality Commission, there is no such thing as a nursing home. There are "residential care homes with nursing" and there are "residential care homes without nursing". There are also "residential care homes" with awful nursing, but that's another story. Another story that The One Show perhaps also would care to look at.

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  • 40. At 1:14pm on 15 Oct 2009, NHSCANDAL wrote:

    The programme highlighted the MASSIVE rip off going on in this country right now.

    The NHS and Social Services actions are getting worse not better despite landmark court cases,
    (national assessments, criteria NOT LAWFUL), ombudsman investigation and found maladministration.

    Some of the information given out in the programme and on the summary and blog is wrong, anyone can ask for a review right back to 1996,
    the NHS cannot refuse, some useful sites set up specifically by people who have or are in this debacle and want to help and support others to get back their money & linked below.

    The simple explanation is that the authorities have reclassified HEALTHCARE NEEDS as SOCIAL NEEDS,
    in order to means test, this is illegal/unlawful see 1946 National Assistance Act and the 'Coughlan' case.

    They want your money to save paying out OF the 'Insurance' that all working people paid in for

    It is not to be claimed, it is not a benefit and it is not means tested, it is actually more than a right, it is their lawful duty,
    if they do not carry out the SO CALLED 'assessment' at discharge particularly or whenever it appears that Health Needs present,
    then they are acting negligently and maladministration HAS/will occur.

    I am not a solicitor, I am a plain and simple member of the public who has been subjected to this deceit since 2002
    and still continuing today, now in appeal, if they feel they can get away with it.

    So far we have ACHIEVED, two periods where eligibility for continuing Healthcare should have been the case.

    Charges were put on the property in our case, all found to be maladministrated, when someone is ill and infirm, especially with Dementia and Altzheimers and is so bad they are @PUT' into a home, Res or Nursing, the NHS PAY, even in Residential, the AS site forum has many examples, their helpline is run by Mike Pearce, ex policement who achieved justice for his mohter Ruby is 2007, ggogle will give anyone the details.

    They are attempting to deny the 'middle' period, which is the latest tactic in the armoury of denial, for all 'new' victims.this
    is the perverse incentives the 'new framework' has imposed, as with all 'rules' fettering of them will occur if they can,
    so instead of their silly 'interpretations' of denial they re now using the 'checklist' to downgrade needs,
    so that they do not have to progress to full 'assessment'.

    We have also achieved reimbursement of the fees, with interest, which the NHS again tried to deceive us over, and only pay RPI rate
    when the Ombudsman found maladministration in this are too by the DoH and all redress is subject to 8% county court rate, compounded,
    NO benefits have to be repaid, agreement with the DWP by the Ombudsman and the NHS have to pay expenses, costs, putting the person
    back into the position they were in before the maladministration occurred, including compensation if the house has been sold for loss of value etc.

    We have received this and know of several others who have too.

    To challenge! it needs tenacity, determination, lots of research, gathering of all info right back to the beginning, there are lots of cases reported by the BBC of 'wins' in this area, some as recent as August this year, a solicitor is not always necessary, but maybe.

    Sites to help:


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  • 41. At 1:30pm on 15 Oct 2009, reflections9 wrote:

    Hello everybody
    Having now read 38 postings on this subject, it is in my opinion that it is a waste of time going to your social worker, health practitioner, local PCT and/or your local MP, because none of them will want to give reimbursements. Go to Lisa Morgan at Hugh James, who will do all the work for you if you have a good case.
    I would like to print our success story to show everybody that there is a correct procedure for persuing your claim, but I can't until the cheque is in the bank, then watch this space

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  • 42. At 1:34pm on 15 Oct 2009, dadswish wrote:

    Just wanted to say that we have just won all of the fees paid for our mother using Lisa Morgan from Hugh James back to 2002. Was interested to see that in England you can only go back to 2004 but Dom said that in extreme cases they will go back further! So we feel very grateful that ours was allowed back so far. We started this after our mother passed away in 2007, so would like to pass this info on. It isn't easy and takes time but with the help of a good solicitor you can do it. In our case we were told that we had a very good chance of winning which made us feel more comfortable, but not just the solicitor but by the nurse they employ. So glad we won not just because our parents wanted to pass on an inheritance, but because of the system that forces you to sell houses to pay for it when they know full well that you should not have to pay for it. Our mother was only given weeks to live when she was forced out of hospital into a care home, and till she passed away 5 years later needed medical care! There should be hospitals for this type of care as from our point of view homes can't cope, and with different staff all the time the patients suffer. At the end of your life is it too much to ask to be treated with dignity and not to be ripped off making you pay for care that they full well know that you should not have to pay for.

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  • 43. At 1:37pm on 15 Oct 2009, janneedsinfo wrote:

    I was my mums full time carer for a year then unfortunately I had to put into a nrsing home as an emergency last sep. She was diagnosed with vascular dementia. Her fees were around £2,500 a month. Her flat has been up for sale since dec 2008 with no takers. She was under the hosp. for tests for symtoms for what we did not know at the time. In october 2008 she was finally diagnosed as having colon cancer.

    She stayed in her nursing home until feb this year when she was found on the floor of her room and taken to hosp. She had broken her pelvis in the fall out of bed. She stayed at the hosp. until she sadly passed away on 7th march. Because she could not walk she had nowhere to go. The nursing home would not take her back.

    As she was diagnosed with cancer should she not have been sernt to a Care home or a hospice. I did not want her to die in hosp. but she did. Can I still claim for a refund now that she is no longer with us.?
    If they had put into a hospice, she would not have had to pay. The nursing home even charged us for when she was in hosp. I would like to add that I have no conceerns over the treeatment she got at the nursing home, I just think she should have been in a cre nursing home, where she may not have had a fall.

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  • 44. At 1:37pm on 15 Oct 2009, janneedsinfo wrote:

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  • 45. At 1:38pm on 15 Oct 2009, imperialdaughter wrote:

    Sportybecks, I would also like to have the info you have offered people.

    My mother is in a nursing home and we are going through the appeal procedure after she was refused funding. However, once the appeal has gone to the SHA we will be forced to pay if we lose at that stage and that will mean selling her home. We are disgusted with the PCT's attitude.

    Could you please email me this info on diamondsparkles@hotmail.com

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  • 46. At 1:42pm on 15 Oct 2009, diamondalimac wrote:

    Thanks glenduff67 for the website. This is much more helpful than the bbc link.
    The number of comments here give only some idea of the scale of this injustice. I have read down the list nodding in agreement with each one. A group of people are clearly being very badly let down by our country. This problem only comes to light at a time when we are already seriously stressed by the deterioration in our relative's condition. Our vulnerability makes us easy to be taken advantage of and palmed off by a bureacracy that is complex and difficult to understand at the best of times. It is easier to do nothing - BUT DON'T - maybe if we all fight then we could succeed in changing the 'rules'.

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  • 47. At 1:45pm on 15 Oct 2009, reflections9 wrote:

    Please everybody look at http://www.nhscare.info
    You will get all the information you require to move forward with your case

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  • 48. At 1:58pm on 15 Oct 2009, dadswish wrote:

    Just wanted to add that Hugh James does a no win no fee under some circumstances but because we won we paid for it. Cost about £4500 and they never asked for a penny untill we got paid. If we had lost and they thought they could carry on and win then it would have reverted to a no win no fee agreement. When we had our assessment they split our mothers care into 3 time groups and gave us the last portion, and then we had to go to a tribunal which gave us the other parts. You have to keep going because you will win if you meet or exceed the Coughlin case. Also keep any notes from day 1 and in diary form as they will take these as evidence at your assessment.

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  • 49. At 2:02pm on 15 Oct 2009, reflections9 wrote:

    The BBC, The ONE show, The Presenters and Dom Littlewood
    Please look at http://www.nhscare.info and you will see that what went out on the live show last night was not particularly sound advice and did not give all the correct information. The website stated here is FACT

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  • 50. At 2:12pm on 15 Oct 2009, MrsHalfbee wrote:

    Having researched the subject of continuing care extensively for an academic assignment, one of the best sources of information I've found is www.cheselden.co.uk. Looks like they have a 'no win no fee' arrangement too, although they're not lawyers. Definitely worth a look.

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  • 51. At 2:23pm on 15 Oct 2009, Alison37 wrote:

    There is a really good article on this subject on the BBC's own website. If you go to news then click business and then your money and it is by Susan Midha at Adams & Remers solicitors. You may have to search the site for it by her name or the firms as it was posted up there last week. It is a good step by step guide on where to start.

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  • 52. At 3:17pm on 15 Oct 2009, megaSapper wrote:

    Dom hopefully not given false hope to anyone trying to claim NHS Continuing Care. I Know. I have been endeavouring to achieve this for nearly four years now for my 95 year old aunt.In June 2006 my wife and I applied on her behalf and since then we have been through numerous assessments,appeals and also an Independent Review Panel Appeal in late 2008. We thougth we had been successful when the review panel concluded that my aunt and I quote' had been eligible for NHS Continuig Care from 30 May 2006 as her primary need had been healthcare as of that date.They recommended that West Kent PCT and Surrey PCT agree funding between them for the period 14 June 2006 until the present day. However the PCT's claim that the present day referred to in the appeal report is not the date it was issued i.e.9 November 2008 but adate in February 2007.Needless to say I continue to battle with the various NHS Bodies involved but will no doubt finish up seeking the help of the Parliamentary and Health Service Ombudsman or having to go to the lawyers.

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  • 53. At 3:21pm on 15 Oct 2009, nhsfrustration wrote:

    It is with great interest that I viewed this article,so much that I have also telephoned the show to request further investigation!
    As many of you reading this will by now know and have experienced the absolute sense of impossibility and hopelessness in trying to persue continuing health care funding!
    I applaude Dominic and his team in bringing this to the attention of the viewing public. However it unfortunately did not go into enough detail on the ridiculously absurd criteria required to qualify.
    As you will have viewed in the article the patient in question had sadly eventually died. I have been researching cases for claims and have found that in virtually all the successful claims (of which there are very few) the settlement has come about only when the patient has deceased. It would appear that once it is known that no further cost would be incurred then the decision is taken to cut and run rather than fight on in the courts.
    It was also brought to our attention that it is still different in England from Scotland,Wales etc although once again not actually going into the details! And yet we do not have seperate systems of National Insurance thus all pay in using the same criteria but do not derive equal benefits!
    My Mother suffered a stroke similar to the case of another placed on this website. She too is now completely parylised down one side. Cannot support herself. Bedridden, Doubly incontinent. Has difficulty speaking and often confused. Insulin dependent diabetic. Also requires her food to be cut up of which she is then left to try to feed herself needless to say ending up constantly in a mess. Requires two carers and a hoist to left her from the bed. And yet as so many others have found and are finding, does not qualify for Continuing care funding.
    I will post more on this in due course!

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  • 54. At 5:27pm on 15 Oct 2009, taraville wrote:

    Why don't we all just admit it - we HATE this cheating country, the government and their policies. All the decision makers are accused presently of fraud from claiming expenses/money they weren't entitled to! Yet we are still tiptoeing around when worrying whether we should claim back carehome fees! We should all revolt and refuse to pay another penny. What could they do? Put our relatives out on the street? My mother was talken into care 2years ago with vascular dementia and altzheimers. I tole social services in no uncertain terms that her house would NOT be sold and that THEY would fund their care. I received a letter confirming that social services would pay the bulk and she would only have to contribute her pension. This proves to me that they go for the "easy targets". Fight for what you feel is right. Its time we ALL stood up in this country. I for one am now emigrating as I cannot stand the red tape and hipocrisy here

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  • 55. At 5:38pm on 15 Oct 2009, taraville wrote:

    Hasn't everyone realised yet that we are living in a country crawling with corruption and fraud by our own government?

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  • 56. At 8:37pm on 15 Oct 2009, Samaldo123 wrote:

    Hi Ive read alot of your comments and info and was wondering if someone could send me the link to how to start the process of asking the PCT to retrospectively review the funding. I want to ty to claim back the money they claimed from mine and my mums home which we had to sell to pay her fees in 2004 and I had to move in with my grandparents.
    Can anyone give any information on who can claim and how long there is to claim as my mum sadly passed away July 2008.

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  • 57. At 8:45pm on 15 Oct 2009, Nursingcaregirl wrote:

    I have looked at many websites in my quest for information to assist me in recovering wrongly paid nursing care fees.

    The most informative company and website by far is that if Hugh James which I believe is the firm of solicitors that Lisa Morgan works at.


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  • 58. At 9:41pm on 15 Oct 2009, Delliewoo wrote:

    This comment was removed because the moderators found it broke the House Rules.

  • 59. At 10:20pm on 15 Oct 2009, shellBellaB wrote:

    I am really pleased that the BBC have highlighted this important issue. Well done. It is good to see from the comments that some people have had success and challenging decisions is worth it. I think we are a society that sometimes accept what people tell us and don't question it.

    I have been considering instructing a solicitor. I just don't have the time to fight. I have looked at all websites, the chelsdon one mentioned above don't have any success stories on their website and no information about how much money they have recovered for people.

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  • 60. At 09:43am on 16 Oct 2009, NHSCANDAL wrote:


    Re your message re sites to help point you in the right direction, see below

    Samaldo123 Hi Ive read alot of your comments and info and was wondering if someone could send me the link to how to start the process of asking the PCT to retrospectively review the funding. I want to ty to claim back the money they claimed from mine and my mums home which we had to sell to pay her fees in 2004 and I had to move in with my grandparents.
    Can anyone give any information on who can claim and how long there is to claim as my mum sadly passed away July 2008



    These sites are specifically run for continuing health care support, information and help by epopel who are in the system now or have achieved successful recovery.

    Recovery of fees paid IS NOT RESTRICTED TO >2004, THEY WOULD LIKE ANYONE TO BELIEVE THAT, it is possible to go back to 1996.

    Several people have mentioned cheselden, although the site has good comprehensive concise information, it is a filtering service ONLY to pass/'sell' details onto solicitors and/or to insurance companies supposedly specialising in this area.

    Apparently they charge a very high % when they sign anyone up. The solicitor/s they eventually pass the contract to, may have to bid for it,people might as well just go to the solicitors in the first place, cutting out the middle man who does nothing.

    Luke Clements, very well known to the BBC, and a seasoned campaigner in this area, has set up a similar service recently, careandrecovery.co.uk, which again, it seems, is a filtering service.

    It seems this 'market' or 'area' is a lucrative income generator, where vulnerable people are again possibly 'held to ransome' amounting to possible daylight robbery from all corners, authorities/professional bodies!when they are their relatives are in impossibly stressful vulnerable situations.

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  • 61. At 10:54am on 16 Oct 2009, connor1969 wrote:

    sportybecks982, i would be very interested to discuss your fact sheet and any other information you have.

    Please contact me on martin@grraids.net


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  • 62. At 11:13am on 16 Oct 2009, shellBellaB wrote:

    The BBC is correct in that the PCT's will not review cases where the majority of care is before April 2004. There was a Department of Health letter in July 2007 setting out that all cases where most care was provided before April 2004, should be registered with the PCT before the end of November 2007. Unfortunately, this was not well advertised.

    In Wales you can still go back to April 1996 at the moment. But there is a DEADLINE - which again has not been well advertised. All cases where the person was paying for care from April 1996 to April 2003, must be lodged with the Health Authority before 4 December 2004. Again this has not been well advertised by the Government or Health Authorities. Peter Black AM has even criticised this.

    I found this article in the welsh press:

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  • 63. At 11:35am on 16 Oct 2009, tinysamsung123 wrote:

    '''Several people have mentioned cheselden, although the site has good comprehensive concise information, it is a filtering service ONLY to pass/'sell' details onto solicitors and/or to insurance companies supposedly specialising in this area.

    Apparently they charge a very high % when they sign anyone up. The solicitor/s they eventually pass the contract to, may have to bid for it,people might as well just go to the solicitors in the first place, cutting out the middle man who does nothing.'''

    I'm concerned! Why are people talking about going to Solicitors?? Why be charged 'a very high % when they sign anyone up'?? why 'go to the Solicitors in the first place'??
    You should know that the PCT's actually look into this from start to finish FOR FREE!! It is NOT a legal process so why are Solicitors being involved?? Why are people being charged for the service of a Solicitor? They are not needed at all. My sister and I were nearly stung by a solicitor firm for looking into the care home fees our mum paid, that was until I contacted the PCT about it, and was advised that I didnt need to use a Solicitor at all, all it needed was a simple telephone call or letter to them asking them to re-look at how our mum was assessed, which we did, and they did everything for us. They are obliged to. Needless to say, we got the care home fees reimbursed because our mum was clearly eligible for continuing care funding at that time, not all cases will be. We didnt feel we'd lost out further by paying a solicitor to do it all for us. If you want a PCT to look at your case, contact them directly, theres no need to involve any third party. All you would be doing is lining their pockets.

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  • 64. At 1:16pm on 16 Oct 2009, imperialdaughter wrote:

    You don't need to use any third party such as some of those mentioned above, just go straight to a solicitor. BTW, be VERY careful of taking advice from internet website forums. I know of one where help is offered but the person running it asks for a £500 fee to take on a case which is disgusting. Help should be given free by people in these forums unless they are solicitors. Beware of barrack room lawyers offering legal advice without any insurance. BTW has anyone had any reply from sportybecks who is offering advice?

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  • 65. At 1:47pm on 16 Oct 2009, tinysamsung123 wrote:

    nobody needs to go straight to a solicitor at all, it is not a legal process, the PCT's are obliged to do a re-review and hold all the necessary meetings etc, there is no need for solicitor/legal input whatsoever

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  • 66. At 2:18pm on 16 Oct 2009, voiceofcare wrote:

    Having read many of the comments about claiming back care home fees, is it just me or does everybody seem to be trying to sort this out in isolation? If this level of confusion and inacuracy was happening within say our schools, then parents would talk about it together and maybe as a result of the parent teachers association, try and sort the problem out - as a group, not a single voice.

    Because of the nature of care homes, relatives tend not to meet each other and the resulting separation from others experiencing similar problems means nobody joins forces.

    What about setting up online relative carer associations (like parent teacher associations), within each care home, that enable relatives to talk about their problems and concerns and then as a group discuss these with the relevant people?

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  • 67. At 3:16pm on 16 Oct 2009, reflections9 wrote:

    from reflections9
    tinysamsung123. I totally disagree with your advice that a solicitor is not required. My Uncle is in a care home since December 2002, he has not been out of bed for 4 years, he cannot speak and if his food was not liquidised and fed to him he would not be alive, (probably survive is a better word) so he requires 24 hour a day care
    On a number of occasions I enquired if he was regularly assessed as to his needs
    I then filled in a questionaire for solicitors Hugh James and they came back to me and said, we think you have a good case, would you like us to investigate on a NO win No fee basis
    After 1 year of investigation, letters, phone calls etc we have won our case and every penny plus interest is being paid back.
    Hugh James took the risk of working on the case for 1 year and not getting paid so the fact that they have achieved a satisfactory result, they are more than welcome to their fee
    I would not have had the time or knowledge to do what they have done

    voiceofcare As for a relative carer association. I think in theory it is a good idea but in practice I don't think it would work, mainly because of the knowledge required. If you saw the 5 page document and it's contents I received from the PCT via the solicitor you would understand why I don't think your idea would work

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  • 68. At 2:20pm on 19 Oct 2009, kornowa wrote:

    Would like to talk to Sportybecks but new to this blogging lark! Help!

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  • 69. At 10:25pm on 19 Oct 2009, smjheath wrote:

    To Sportybecks982: I'm new to this blogging lark but is there any way you can send me your 12 action points. My address is steve.heath2@btinternet.com

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  • 70. At 10:27pm on 19 Oct 2009, smjheath wrote:

    To Sportybecks982: I had just posted a message with my email id asking you to send your 12 action points but I've now seen the house rules which say I can't post an email address. I'm new to blogging so how can you send me that info ?

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  • 71. At 10:44am on 20 Oct 2009, kornowa wrote:

    Hi, I really would like to make contact with Sportybecks, but as it appears we cannot leave personal information i.e. e-mail addresses - how can this happen - I also would like the 12 action points. Can ANYONE advise me - PLEASE. Thanks.

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  • 72. At 9:04pm on 20 Oct 2009, cybermoonraker wrote:

    My Father died suddenly in 2004, my mother was suffering from dementia, and she had an aortic aneurysm. Shortly afterwards she had a heart attack, after she came out of hospital we cared for her in her own home. Care packages were self-funded right from the beginning, costing more and more, as more and more hours were needed. Finally it was impossible to continue at home and Mum went into a private care home, self-funded again as she was a 'home-owner'. We had to sell her home, her sole asset, to pay the £4,000+ per month fees. Two years passed by and we paid with no question and watched her as her condition worsened. I felt it necessary to invest the house money in a cautious investment profile through a care asset organisation in order to make the money go further than the 2 1/2 years it would otherwise last, but lo and behold a credit crunch wiped away half its value overnight last year. In desperation I asked for CHC funding for my now very poorly Mum. She could not walk, talk, feed herself, she was incontinent, etc. etc., with no quality of life at all. The first assessment in December 2008 was refused. An appeal in May was successful and upheld retrospectively to the previous December, but in July of this year she passed away almost on the same day that the 5 months costs were repaid. The care she received in the home was without doubt the very best and I do not in principle begrudge the money spent in looking after her in such a warm and dignified way, what I do object to is the way this country takes poor care of its elderly, survivors and veterans of a world war. How can we say that Dementia is not an illness? How can victims of Alzheimers be described as not needing nursing care. Is this another example of mental illnes sufferers being penalised simply because their condition not understood or successfully treatable?, or that there are just too many of them, with the liklihood of their being many many more in the future. The government just cannot face up to its responsibilities, and will definitely not have the money to take care of its country's senior citizens in view of its recent ill advised spending.

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  • 73. At 11:17am on 21 Oct 2009, MrsNozzy wrote:

    Sportybecks as per comments by smjheath and kornowa, I would be interested in your useful fact sheet too, but how can we get hold of you? Thanks.

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  • 74. At 12:36pm on 21 Oct 2009, MrsNozzy wrote:

    Dear MarineMidnight
    We are in a similar situation to yours, our mother does not have a progressive illness as such (but she has deteriorated). She had a massive stroke Nov 04 and after hospital she went straight into a care home. She is bed-ridden, doubly-incontinent, has a peg feed, has little speech - sometimes only screaming - so she can't communicate her needs or perform any personal cares (needless to say she cannot manage her affairs). She has had periodic assessements and after the last one, suddenly things have changed and she is no longer eligible for fully funded care!?

    The assessment documentation we've received is not fully completed and the final rationale for her ineligibility is badly written and in parts illegible. The tick boxes are inadequate to reflect needs and when they don't, there is no explanation in the space below. We are going for reassessment, so we will see?

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  • 75. At 10:34am on 22 Oct 2009, cjacwr wrote:

    I would also like more information please 'sportybecks982'. I am also determined to beat this unfair system.
    I am currently helping a friend and struggling a bit.

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  • 76. At 1:23pm on 22 Oct 2009, micromillymandy wrote:

    Sportybecks it would be really great to have your information ?? Has she sent it to any of you other bloggers ?

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  • 77. At 3:40pm on 22 Oct 2009, HeadBlog wrote:

    'sportybecks982' where are you when we want you!?
    I and several other Bloogers above are really keen to see your '...very useful factsheet of 12 different points of action that need to taken to achieve a positive assessment...'
    Any chance you could oblige???
    Best regards.

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  • 78. At 4:00pm on 22 Oct 2009, marian62 wrote:

    sportybecks982 - I think you could help me a lot as I'm trying to get funding for my mother and knew nothing about being able to claim until I saw this programme. To be honest I don't know where to start as I contacted my local PCT and they said they didn't have a clue about what I was asking or saying - so before I go back to them I want to be 'fully armed' so to speak and I especially think your factsheet would help. I'm new to this and have no idea how to contact you so if you read this could you possibly get back to me - if not - can anyone else help? Thanks

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  • 79. At 8:26pm on 22 Oct 2009, nhsfrustration wrote:

    DOM,DOM,DOM? Please,please NOW readdress this feature?
    As it can quite clearly be seen here on this blog that so many are totally frustrated,angered and distressed by the diabolical bureaucracy that surrounds any claim to have care fee's funded.

    The feature advised that if the Primary need for nursing care is health then the cost will be met by the PCT. It then went on to focus on how in the past patients were assesed differently with varying results depending on your geographical situation and how this has now been rectified with one system for the whole of England. (Also pointing out that it still differs in Scotland,Wales and N.Ireland in the studio after the feature).
    However in reality what has now really happened is that it is NOW ALMOST IMPOSSIBLE FOR ANYBODY TO RECEIVE CONTINUING CARE FUNDING. At least not without a long drawn out battle with the NHS/PCT etc.

    A programme needs to be made actually detailing the criteria required to qualify. It can then be made publically aware how ludicrous the PCT make it for the need to be classed as Primarily for Health Reasons and to qualify for full funding. I would also like to see NHS and PCT representatives quizzed to see how the hell they can even remotely defend this.

    Unfortunately time prevents me from adding more at present but will return to this blog subsequently!

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  • 80. At 7:29pm on 28 Oct 2009, Geddisgirl wrote:

    To all you folks who have emailed me regarding information from 'sportybecks982'. I still have heard nothing and don't think I will. I didn't want you to think I had forgotten you.
    Its a shame that the we all got so excited by his comments especially when we are all so unhappy and determined to fight the care system and bring justice to our loved ones!

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  • 81. At 09:36am on 02 Nov 2009, Christine Butler wrote:

    This comment was removed because the moderators found it broke the House Rules.

  • 82. At 11:36am on 05 Nov 2009, Lyn Rogers wrote:

    I was very interested in the recent article you did on the cost of care. My father was diagnosed with Alzheimer's in 2007. At the time he was living in Scotland. Following assessment I was advised Dad be moved to a Dementia Care Home (EMI). Dad did not qualify for basic residential (social) care by then. Edinburch Social Services said I would be entitled to claim for part of the cost of Dads care. This was means tested based on a financial assessment. Dad was subsequently granted £500pm toward the cost of his care. This amount has not changed since 2007 although the cost of Dads care increases on an annual basis. I wanted to move Dad to a British Legion home in North Yorkshire to be nearer to my home. Edinburgh Social Services at the time told me not to register Dad with the North Yorkshire PCT as Edinburgh Social Services would then withdraw their contribution to Dads care and the English PCT would not pay anything as Dad had not been living in North Yorkshire. I didn't question this advice at the time. Dad was moved to the British Legion Home, as a former serviceman of 40 years. The British Legion will sometimes contribute to the cost of care but they also do this on a means tested basis. Dad was subsequently not entitled to anything. Therefore Dad receives no other financial support for his care. The total cost of Dads care is currently £2686.99 per month of which £500 is still being paid by Edinburgh Social Services. If and when Dad requires nursing care as well as dementia care this cost will increase dramatically. Following your report I wonder now whether I should have registered Dad with the North Yorkshire PCT and whether Dad is in fact entitled to more financial support. I find it increasingly frustrating that dementia care is still not regarded, by the government, as an illness that often results in a long term care need. It seems to me that those who can afford decent care are the lucky ones but those that can't may not receive the standard of EMI care I think everyone should get when the time comes and it is needed. There must be a fairer and easier way to get the financial support needed without having to fight all the way. Especially as the ones with the illness are unable to do this for themselves. I would appreciate any comments anyone out there may have and whether you think I should take my particular circumstances further.

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  • 83. At 03:11am on 11 Nov 2009, greg wrote:

    This comment was removed because the moderators found it broke the House Rules.

  • 84. At 03:12am on 11 Nov 2009, greg wrote:

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  • 85. At 10:13am on 14 Nov 2009, Babs wrote:

    To Morine Fox. My mam had a really bad stroke and I am fighting the PCT.

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