Ivan Lewis, the Labour Minister with responsibility for social care, said it was ‘absolutely crucial’ to achieve political consensus. He encouraged the Opposition parties to engage ‘actively and positively’ in the consultation events and the processes leading up to the recently-announced Green Paper on reform of the funding system for adult care and support in England. One measure of the success of any reform would be that ‘a very wide range of people feel the system is fair’, he added.

Norman Lamb MP, Liberal Democrat Shadow Health Secretary, said consensus ‘ought to be possible’, and that for success any new system would need to be ‘simple, easy to understand’, seen to be fair, as well as empowering people to set their own priorities.

There was near unanimity among delegates on the need for a ‘radical rethink’ in the Green Paper of the funding arrangements for older people’s social care. In line with the other Caring Choices events, there was support from around three-quarters of the delegates for a shift away from the means-tested current system to a ‘co-payment’ funding model, where all dependent older people would receive some support towards their care costs regardless of their income/assets, while also making a private contribution that was affordable for them.

Ivan Lewis said it was important to be ‘very open and honest with people’ about the choices and trade-offs involved in reform. He added: ‘There are no easy choices, there are no soft answers.’

Read the full report from the London event

For the first seven years I cared for her at our home in the countryside. Our nightmare began on 1 October 2001. She’d entered the stage of losing special awareness, which results in falls. That morning she had a fall and was rushed to A&E with a broken arm and dislocated shoulder; she was also doubly incontinent. By 8 o’clock that evening she was settled in a ward. She was then transferred to a second hospital, where she was drugged up on Temazepan (without my knowledge) and then returned home to me in a wheelchair with most of her speech gone. She was then moved six times in six weeks, until she was placed in a nursing home.

The move to a nursing home was bad for both of us. Though I spent more than eight hours a day at the home helping to change her pads and feed her she became bedridden. Reduced to less than six stone, she developed very bad pressure sores and rigidity set in. Each day I visited, I felt she had given up the will to live. The long daily drives to the home and seeing her condition worsen took its toll on my health.

Placing her in the nursing home was like putting her in prison, the only difference being that in prison food and lodging are free, and one day you walk out.

The bad experiences led me to think I could do better by going it alone. I sold our house and moved to a more suitable house to care for her.

During the first six months at home she was admitted to hospital several times where she was put on a drip and oxygen mask. When I was told there was no hope I insisted on having her home to die. One evening, when she was drifting in and out of consciousness, I called her GP, who advised me not to sit holding her hand overnight as ‘they tend to pass away if you go to the toilet or for a drink’.

At Christmas in 2003, I decided to dress her and lift her into a wheelchair I’d bought; my hands were shaking with excitement as I wrapped her up and took her for a walk.

Four years after leaving the nursing home, she weighs around eight and a half stone and is healthy, though she can’t move or speak. This doesn’t stop me taking her out, by strapping her feet and body into the wheelchair then lifting her into the car I take her shopping twice a week.

My life might be compared to the life of a single parent only my baby’s a bit bigger and can’t move or make a noise. These past four years of caring for her totally alone has proved wonderfully rewarding. We’re still together and, God willing, we’ll make 24 September, to reach our 52nd wedding anniversary.

When asked by a Psychologist why I’d removed Jean from the NH my explanation was, placing her there was like putting her in prison, the only difference, in prison food and lodging was free and one day you walk out. Appalled, asked what I considered was the alternative? Answer: for loved ones to be cared for in their home where possible. Otherwise small units within their own communities, where there’s a high number of older people. She considered it to be a too expensive venture. When one considers the cost of running these homes way out in the countryside, my alternative is favourable. Presently there’s the transport of, food, services, staff plus the stressful round trips of relatives. Many workdays are lost by working relatives due stress and depression, not to mention their medication.

The cost to me having Jean in a NH was more than the present allowances paid for her care at home. Our contribution was in excess of half my service pension, her pension of almost £60 a week, only while in the home it was made up with income support. The remaining amount was paid by the taxpayer. Many people caring for loved ones, who’re less disabled than Jean receive the higher rate of mobility allowance, because she’s over 65, though diagnosed at 63yrs old. In colder weather to keep the heating on all day like in NHs, is not viable. Extra washing, ironing, TV to entertain her while I do chores and charging the hoist’s batteries add to electricity costs.
I’m happy with my lot except it would be nice to find preventive medicine was practised which would be very cost effective, such as both of us having a check-up, even once a year. The last one was in Nov. 05, just a blood pressure and urine test!

Currently, older people have to have their needs assessed separately by several health and care professionals:

• the first assessment is to establish eligibility for fully funded NHS long-term care
• if they are not eligible, then they need a second, separate assessment for the registered nursing care contribution
• that is followed by a further, third financial assessment for personal care.

At the end of this bewildering adventure, older people and their families are increasingly advised that effectively they’re on their own and responsible for funding their care. More often than not, it is the agency providing care or the care home that has to advise people and their relatives about the true cost of care.

Most people involved in this ‘industry of assessment’ know it has become a bureaucracy of madness using overlapping, largely invalid and incomparable techniques more concerned with the management of ‘scarce resources’ than benevolent response to individual need.

It is clear that there should be one comprehensive assessment of need to provide the basis for all practical choices.

Some people will choose budget care, just as they choose ‘no frills’ air travel, while others want premium services. The gap between budget and premium should be a matter of personal choice, but the journey of care should have the same safeguards and assurances irrespective of price.

The reality for individuals eligible for local authority funding is that there is frequently a gap between what the council will pay and the true cost of care. That means top-up fees are needed to secure adequate care. Currently, individuals and families are often able to meet these charges. But as dependence on top-ups continues to grow – by stealth and without clear policy – it becomes increasingly important that there is a safety net for the destitute, the frail, and the ill-prepared.

A steady stream of reports, ranging from a Royal Commission in 1999 to last year’s King’s Fund Wanless report and those from the Joseph Rowntree Foundation and many others, all say that present systems are failing. The time is right for a new approach that encourages people to plan for, access and receive care in later life. It will need clear distinctions between health needs and care needs, and a well-defined safety net. A good starting point would be a unified assessment that provides proportionate funding, forms the basis of a personal care plan, and is responsive to people’s evolving needs.

The current system is chronically under funded. Budget increases not even keeping pace with demographic change have squeezed care services, and people with moderate needs have suffered most. With little or no support, people’s chances of staying healthier for longer are reduced.

The system survives only because of the huge contribution made through informal care by families and friends. Their role is recognised in words and is likely to continue, but carers need more than the minimal help and support they get.

The funding system penalises people with moderate savings, a shock to many just when they are most vulnerable. If left in place, it will discourage hundreds of thousands from receiving support they need.

The postcode lottery is alive and well in social care, with large inequitable differences in local authority charging. There are perverse incentives encouraging excessive use of care homes rather than care at home. Poor people with assets less than £21,000 are left with £19.60 a week personal allowance after care costs. It is the exact opposite of the rhetoric about independence and dignity.

Today, up and down the country, relatively few older people are eligible for NHS continuing care. The benefits of ‘free’ care have been replaced by means testing. This shift began more than 20 years ago, but it is a policy largely introduced by stealth, noticed only when people need help.

As we await the Chancellor’s announcements on future funding of social care later this year, it is crucial to emphasise the urgent need for additional spending simply to prevent further deterioration. Furthermore, changes in the population over the next 20 years would demand significant increases in spending even if the present system is retained.

In the longer term a more enlightened system must be adopted. Central to finding the right solution will be agreeing, as a society, what outcomes we want to achieve for older people and what kind of care system we will provide them. A fairer, more rational system must be built on the foundation of a basic entitlement for everyone, calculated to reflect the level of care required rather than the financial means of the individual.

The other key question is ‘who pays what?’ The current complex funding and benefit regime must be replaced and the huge financial risk to people of extended and expensive social care must be pooled across the population.

The immediate reaction to my review when it was published suggested that we had reached a tipping point where government and opposition parties all acknowledged the major shortcomings in the system.

All of the leaders in the field seem to me to be ready for a frank and open discussion about the realities created by an ageing population, and the competing demands on the tax base. What they are all agreed on is the need for a system that ends the current shameful treatment of older people and transforms the rhetoric into a reality of dignified lives.

Sir Derek Wanless is a Senior Associate of the King’s Fund. In addition to his review of social care for older people for the King’s Fund, Sir Derek has also produced two significant reports for the government on the NHS. He was formerly chief executive of NatWest Group.