The national homes swindle: A growing scandal

WHAT CAN I DO? Read comments on the programme Read a simple guide to care Read the consultation document and expert responses Find out how Ian Perkin successfully contested a decision not to fully fund his mother Find out whether the NHS should be paying for your care Find out about continuing care in Scotland

In March 2006, Panorama investigated how sick and elderly people are compelled unlawfully to sell their homes to pay for NHS care.

The film prompted the biggest viewer response Panorama has ever had with 1,700 emails and 3,000 phone calls.

So now we have investigated the stories you brought to us.

ANITA ASTLE Anita Astle is the manager of Wren Hall Nursing Home in Nottingham and the director of the Nottinghamshire Care Home Association. She sent her email to express her own point of view after watching Panorama's first film on the website.

Out of all the emails we received we chose to feature the people who wrote these messages to Panorama and you can hear them tell their own stories in the film.

Anita's email

"This is appalling. Older people paying for the privilege to be cared for whilst they deteriorate both physically and mentally and subsequently die. Reviewers are more concerned about the cost to the NHS than addressing the health needs of frail older people."

Read Anita's account of why she contacted Panorama and what it was like to film with the team

LYNNE COWLEY Lynne Cowley's mother requires care and Lynne told Panorama that her experiences with her mother have made her question how vulnerable people are treated by the authorities. Her mother, Gladys, died while Panorama investigated her story at Lynne's request.

Lynne's email

"They have tried to bully me, harass me at work for money and the final straw was when I saw the so-called assessment they did on mum. Fortunately I have worked in medical journalism. Even more fortunate I watched your programme.

My mum deserves better than this. She worked and paid in for care, and so did my late dad" who fought a war for this country. Mum has only got me to fight for her and she only has a few months to live. I want her last days to be as good as we can make them. This country owes her."

LINDA JONES Linda Jones was writing a letter to Tony Blair about her uncle's care when she saw Panorama's first film.

Linda's email

"Please find attached below a copy of the letter I have sent to Mr Blair. I was in the process of writing this communication and then I saw your programme.

"Dear Mr Blair It is with great sadness that I write to you direct concerning my 79-year-old uncle.

"My uncle served his country during the war and paid all contributions during his working life, worked hard to pay-off his mortgage and to provide for his pension during his retirement. All the things your government encourages a good citizen to do.

"To date we have paid in excess of £45,000 in fees for uncaring services, believing we were doing our best. We have had the door slammed in our faces all the way.

"We have now sold the family home what more do you want us to do?

"What has happened to the National Insurance Contributions he paid all his life?"

PHIL SHAKESPEARE Phil Shakespeare's mother Pauline requires care and he has started a campaign with details at fightthe bureaucracy.org

Phil's email

"Dear Panorama, I'm tired of having to keep fighting and fighting. The distress this is causing my family far outweighs the illness itself. I don't know who to trust anymore and it's getting harder to keep a lid on all this frustration! If mom was eligible then and in 2004 what's changed, certainly Mom hasn't improved, her dementia is very advanced, so SOMEONE has moved the goal posts. I have always felt I'm kept in the dark and isolated."

Read an NHS consultant's views about the 'scandalous way' older people are treated

Panorama received so many emails that unfortunately we could not follow up everyone's stories and film them.

Three members of the production team who worked on the first film read every single email and letter and chose cases for the follow up which they felt could illustrate some of the main areas of concern raised in the emails.

But on the website we are able to publish your emails so here they are.

The distress, frustration and lack of confidence in the system of NHS continuing care is palpable from the following selection of messages.

The vast majority of the emails we received related the sadness and anguish that relatives experience during an already difficult time. The initial distress of moving a loved one into a care home was compounded by the realisation that the family home may have to be sold.

Catherine Walker-Martin, Essex
Then they asked us to go out and explain to our father, not only that our Mum would never get better but that he would not be allowed to go back to his own home. He didn't have a capable wife to look after him and Social Services did not think it 'workable' to look after him in his own home. 'Worse still Dad, if that is not enough for you to deal with, we, your children, that you have worked so hard to care for and loved so completely all your life, are now going to sell your home, never for you and Mum to return to, to pay for your care.'

It was the worst day of my life, I had lost a husband, I had lost three unborn babies, but nothing could have compared to how much it hurt me to deliver that news to the man who had loved me from the very moment I was born.

The start of the end of my Dad's life was not one of the days he called for the priest when he had pneumonia, but, the day myself and my two sisters had to tell him we had to sell his home to pay for his and Mum's care.

E. Jones, Essex
Both of my parents served in the forces during WWII. My father served for 4 years in Burma, my mother was in the ATS. After the war they worked hard to buy their own home. They paid National Insurance all their working lives and claimed not a penny. Sadly my father died in 1994. After a serious accident, my mother was in hospital, then went into a care home. [She] was so proud of the home she lived in for over 80 years and her dearest wish was to leave it to her family. Sadly this will not be possible as it must be sold to fund the fees. Please don't call me "greedy for my inheritance". I just want to be able to look my mother in the eye and say "The house you worked so hard for still belongs to you."

Maj Jackson-Carter, Llandrindod Wells
This is absurd and totally unjust. We all pay our taxes and national insurance throughout our lives and don't expect to face this despicable daylight robbery later in life. We are taxed on the money we earn, taxed on the money we save, taxed on what we may inherit and our own homes that we struggle to buy and maintain all our lives can then be taken away from us - just like that!

I don't know where to turn or what to do for the best regarding this abhorrent situation I am facing. I do know that my late mother would be terribly distressed if she knew of what was happening to our family home. Mum always said to me that she and Dad didn't have much, but that they took comfort in the fact that they did have their home that would be mine when they were gone. It can be very sad and cruel how life can turn out.

We received numerous emails from those who no longer trust the NHS and believe that today it does not remain faithful to its founding principles.

Chris, Manchester
We identified completely with all the issues raised by the programme and feel we have lost faith with the NHS and the Government. We are facing the decision of selling my Mother's house, but after watching [The National Homes Swindle] we will be thinking through this awful scenario some more.

My mother and father worked hard all their lives, paid their taxes and heralded the NHS when it was introduced, because it was for the people, all the people regardless of class, money or position. How things have changed. My mother is classed as self-funding because she bought her council house a few years ago and now the fees for the nursing home [are] over £600 per week. The whole nursing home fees, means testing, criteria etc is a scandal and needs to be addressed, and hopefully your programme helps to make a start in the right direction.

Tom Powell, Torquay
I have lost all faith not only in the Health Service, but in our Government to react to such criticism, and court rulings, in a way that has the patient's best interests at heart. But they will have to take the keys from my dead body before they can take my family home. Not happening, NO WAY.

Cecily Sumner, Surrey
About a year ago my mother suffered a stroke. She was taken into hospital, and later taken to a nursing home on a temporary basis until it was decided whether to return her to her bungalow. My mother needs 24 hours care, but we must sell her bungalow to pay for this care.

I feel this is unfair. My mother would have paid tax and national insurance on the understanding that she will be given care when she needed it. If we have to sell her bungalow she would be paying twice for care. The NHS has broken the contract.

Many emails directly criticised the Labour Government for the current problems relating to NHS continuing care.

Maritza, Slough
I do not really have any faith that the situation whereby elderly people sell their home to pay for care will change. In my opinion the criteria for assessing needs is set and interpreted in whatever way is politically expedient at that time, irrespective of Government promises that can be readily verified (as witnessed on last night's Panorama programme). The Government seems to need money for other, more important, things and that's that.

Gill Meager, Plymouth
[Dad's] house was supposed to be an inheritance and it is disgusting that it could be used to pay for [his] care when he and Mum worked so hard and sacrificed much to be able to own their own property and have always worked to be able to receive 'free' National Health when others who did not make the same provision can have care as of right. It is indicative of this Government to persecute those who have worked hard for what they have and reward those who haven't.

Adam Holmes, Leicestershire
I don't blame anyone for [my father's] stroke but having paid vast amounts of Tax and National Insurance contributions all his working life, never having major hospital treatment before, we now find he is being neglected and refused long term medical residential care on the NHS.

The NHS is destroying our family. Why should [my mother] spend her last savings on long term health care and live in fear of losing her home to fund a service that should be free. I consider this to be a medical condition [that] should be free on the NHS. [My father] has a medical illness, its not just social care. Why should we pay twice for the same thing? This Government and the NHS have no sympathy or respect for the elderly.

Another theme running through the correspondence received by Panorama was the unfairness of a system that forces people with savings to subsidise those without.

Deborah Bowers, Huddersfield
Currently my mother-in-law is in a Nursing/EMI home on a self-funding basis as she owns her own home which will have to be sold. To add insult to injury if you are self-funding it would appear that you are subsidising your local health authority, as for the same care they will only pay the home a set amount which varies from local authority to local authority but which is less than what you as a self-funder have to pay. Call this fair? We don't think so.

Jennifer Schilcher, Hastings
We feel aggrieved that the fees that we are required to pay, as self-funders, are being levied by Nursing Homes at such a rate to subsidise other patients who are fully funded by the NHS. The NHS/Social Services set a cap on the total fees that they will pay and the shortfall is being recouped from self-funders. This whole issue flies in the face of this Government's policy of trying to encourage people to make provision for themselves and save for retirement and old age.

Sharyn Williams, Lowestoft
If my poor mother knew about any of this it would kill her. To know that all the years she worked and went without (holidays etc.) she was going to lose everything.

I think families could cope if you they knew that they were in a better home than others. But to be sitting next to a person who pays nothing and has paid nothing to help National Insurance is an insult to them [it] makes you lose faith in the society we are now living in. The issue of 'third-party top-up fees' was raised by a number of viewers, again pointing to the perceived injustice of a system that requires relatives to supplement a Social Services funded place in a care-home.

Julie Moss, Dunstable
All councils have a limit to what they will pay. For example, if [the care home fees are] £650 per week and the council limit is £500 then the family is expected to top up the missing £150 a week. Also, they cannot use their parents pension or the nursing allowance to top up as that is taken off the council limit of £500 first. If they do not agree to pay the top up then their parent will be moved to a cheaper nursing home of the Council's choice and that will not always be in the same area. Let these people who think that it is right to pay for care be so smug when it is them having to fork out their own money every week.

Roy McGurn, Welshpool
Another scandal surrounds third party top ups. Some Local Authorities are more than bending the rules to extort money from relatives when the responsibility is firmly on them.

Veronica Russell, Upminster
As I and my siblings are just in the position of finding and funding care for both our parents (88 and 90 years old) it is obvious that the root of the problem lies with the 'cross-over' of budgets between the PCT and the Social Services. We are aware that 'Health Funding' is available but have been forewarned that it is a difficult and expensive course of action. In the meantime we have to balance the differing needs of each parent in finding a suitable care home for them, fill in the forms, find the funding and the home, continually monitor Care Services provided in the home and still pay for top up. It is very clear that a cohesive, transparent, and seamless methodology of care provision for vulnerable, elderly people without recourse to financial situations is long overdue. I should point out that three members of my family are in the caring profession and therefore we are more aware of the realities than most. God help those who haven't.

Panorama: The National Homes Swindle: A Growing Scandal was on BBC One on July 23 2006.