Page last updated at 18:18 GMT, Monday, 12 May 2008 19:18 UK

'They paid taxes all their lives'

Pensioner and carer holding hands
The social care system - which Gordon Brown has promised to reform in England - is complicated and varied.

In Scotland, personal and nursing care is funded by the government, although care home accommodation fees still have to be paid, based on a means test. Northern Ireland and Wales share the fully means-tested system England uses.

Three families from England, Scotland and Wales talk about their experiences on the ground and why they think the system is unfair.

SUSAN HIBBENS, ENGLAND

Susan Hibbens, 53, and her sister have been through a "steep learning curve" in sorting out long term care for their mother, who is 84 and increasingly frail.

Susan Hibbins
Susan Hibbins says protecting their inheritance is not an issue

She is now in a residential home, which she is funding almost completely with proceeds from the sale of her house in Duffield, Derbyshire.

After having several falls at home and spending some time in respite care nearer to Susan's house in Market Deeping, Cambridgeshire, she took the decision that she would be better off moving into care.

"We tried so hard to keep her in her own home but it became unsafe for her. Going into care has to be - where possible - a decision the elderly person is involved in because the ramifications are absolutely huge."

There was "no option" but to sell the house to fund the cost of the home, which they are very happy with but is costly at 700 a week, says Susan.

"After a while it dawned on Mum that this was for good. She became very low when the house was actually gone."

People might say she is lucky to live in such a nice home, but the house that is paying for that is not just luck

The family paid the capital from the house sale into a high interest account. The interest is in turn paid into a current account, into which their mother's state pension and late father's small occupational pension are also paid.

The combined income covers some of the fees, but about 1,000 a month is also taken from the capital from the house.

"I am not aggrieved about any inheritance I might have lost; I think that is a very selfish point of view.

"The house was always her security and it was always her money," she added.

"What really annoys me is that she is taxed on the interest she gets from the house sale, as well as my dad's pension being taxed.

"She gets not a penny from the government and yet she is paying them, even though she is funding herself. How much would it cost for them to waive that for people in this situation?"

She says she does not expect the government to pay for everything but thinks it should meet people half way, or at the very least look at the tax issues.

"People might say she is lucky to be able to live in such a nice home, but the house that is paying for that is not just luck. My dad fought in the war; when he was demobbed he dug sugar beets for money because there was no other work."

He later went to night school and then worked his way up in the world of patents and trademark licences but was never a wealthy man, she adds.

With the capital dwindling each month Susan, who works in publishing, wonders if the money will last her mother's lifetime.

"I try not to worry, it's a horrible thing to have to think about, how many years is someone going to live for?"

ALLAN MEES, SCOTLAND

Reading reports about Scotland's "free" social care could give one the impression no individuals were paying for the services, according to Allan Mees.

He is keen to point out that while the funding of personal and nursing care is better than in the rest of the UK, care home accommodation still has to be paid for by elderly people and their families.

And for this family the bill comes to 1,600 a month.

Allan Mees
Allan Mees and his family pay 1,600 a month on care for their mother

When he and his siblings took the difficult decision to move their mother - who is 88 and is increasingly unable to care for herself - into a residential home, they found that state funding only covered one third of the fees.

Widowed in 1957, their mother brought up three children single-handedly in Rosyth, Fife, and worked until retirement age looking after mentally handicapped children.

Until she moved into a home in West Lothian five months ago she did benefit from free personal care at home, which involved four visits per day from carers organising meals and dressing.

But as a previously active woman, she often wandered confused into the street, and it became too unsafe for her to stay at home.

Now, Fife Council pays 210 per week directly to the home to cover her personal care, while the family have organised payment for the accommodation fees.

Allan says too few people are aware of the options for funding long term care for their families.

"Most people think they should just sell the house, and they gradually eat into the assets. Through some luck and a bit of judgement we stumbled across a company that specialised in long term care solutions."

Allan, 58, says that although he works in the financial services industry he was not aware such arrangements existed.

My mum thinks she is getting this all for free - she would be devastated to know how much it was costing

The family were able to avoid selling their mother's house and instead used her savings and some investment income to buy an 'impaired life annuity' which pays out almost enough each month to cover the home's fees.

The rest is covered by her state pension and small occupational pension.

"These issues must be such a worry for some people. My issue is: 'Why is this not totally state-funded?'"

He says people should be made more aware of how the system works, including information about the system of giving Power of Attorney to someone who can manage your financial and welfare needs if you become incapacitated.

"We don't begrudge the home a penny, but this has all been a massive learning curve for the family. The local Social Work department was very good but they are unable to offer financial advice; they can only tell you how much it will cost and what support they can provide.

"There is such frustration that people pay all this tax and National Insurance all their life but then the state leaves them with this financial headache."

Their mother's dementia means she is unable to manage her own financial affairs, and she is unaware of the situation.

"My mum thinks she is getting this all for free. She would be devastated to know how much it was costing, that all her hard-earned assets for going to pay for this.

"If she knew she would probably get her hat and coat on and go out the door, if she could. Her expectation is that she lives in a country where health care is free."

JOANNE CONVERY, WALES

Joanne Convery's grandmother Nancy Gemmell and her late husband worked hard and saved during their married life, says the 26-year-old student.

Now widowed and suffering from osteo-arthritis and blood pressure problems Nancy, 84, relies on family and the social care system to help her maintain as much independence and social interaction as possible.

Joanne Convery
Joanne Convery believes the cost of social care is "extortionate"

A local day centre in Wrexham, north Wales, has been her main lifeline in recent years, says Joanne, but she has found the means-testing system and regularly rising charges upsetting.

"She doesn't like the fact she has to be means-tested. She is uncomfortable with people knowing about what she has in the bank. Her and my grandfather worked hard and saved, which means she is not eligible for anything."

Nancy pays just over 20 for each day at the centre, and is also charged 1 a mile for every time she is collected, dropped off or taken on a day trip by staff.

"It soon adds up. She can afford it but it upsets her because they keep putting the prices up and it is getting above and beyond what you would expect to pay."

Nancy also pays for an emergency call button at home, which she can use if she has a black-out caused by her blood pressure problems. Family members provide other support such as food shopping and gardening.

Living in a council house means any future care needs would have to come from her savings, if they exceeded the mean-test threshold of 22,250.

Social care services are "extortionate" and unfairly organised, adds Joanne.

"I feel sick at people who have not worked at all but get more out of the system. Some people legitimately cannot work but others choose not to and get more for it.

"If you put something in you should expect to get more out."




SEE ALSO
Q&A: Social care
12 May 08 |  Health
The social care conundrum
01 Feb 08 |  Health
Minister backs costly care policy
01 Feb 08 |  Scotland

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