How to get the best from the unfair care system

It's not easy to obtain the help that you or your relatives need, but with the right guidance – and persistence – you can succeed
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The Independent Online

When Nye Bevan was founding the NHS back in 1948, he said that no society could "legitimately call itself civilised if a sick person is denied medical aid because of lack of means". He promised that the new NHS would be universal, tax-funded and free at the point of need.

But more than 60 years on, Britain is still a long way from achieving Bevan's ideal. We can be proud of parts of our health system, but a lack of funding has slowly eaten away at the standards of care across much of the NHS, and, in a growing number of cases, patients are denied the best available drugs because they are too costly.

The best example of how "uncivilised" Britain has become is its elderly-care system. Today, many thousands of people are denied the personal and nursing care they need each year because local authorities and primary care trusts (PCT) do not have the resources. For the poorest in society, who do not have significant assets or family to support them, they may be left for days, weeks or even months without help, possibly unable to wash, clothe or feed themselves.

Others, who own the property they live in, but have little else, are often forced to sell up and move into a second-rate care home well before they're ready, sacrificing their independence because they have been denied funding for the care they need in their home.

Worse still, Britain's care system is an unfair postcode lottery. If you live in one of the few areas where the authority and PCT are well funded, you may get your needs met in a timely fashion. In other regions, you'll be offered no help until your situation has got so bad that your life may be at risk without some support.

To add to the frustration, the UK care system is also very hard to navigate. With a dearth of reliable advice available from authorities and PCTs, families try desperately to find out what support their relatives are entitled to. While those with little or no assets should be entitled to comprehensive care packages that are paid for by the authorities, getting what you're owed can be next to impossible.

First steps

The need for care often arises very suddenly. If a member of your family suffers from a stroke or a heart attack, this immediate care need will initially be met by a hospital, providing you with time to make arrangements for when your relative is discharged. But in some cases, a person's ability to look after themselves can deteriorate rapidly while they're in their home.

Either way, it's important to act as quickly as possible, since authorities and PCTs can take time to carry out relevant assessments and organise the right support.

Care breaks down broadly into two categories: personal care and nursing care. Personal-care services, which include help with daily activities such as getting dressed, washing, cleaning and cooking, should be paid for in full, or in part, by your local authority, depending on what savings and assets you have, and depending where you live in the UK.

Nursing care, which is care that needs to be handled by a medical professional, such as administering medication, should be paid for by the NHS, via your local PCT, regardless of your means.

If you have assets of less than £22,250, excluding the value of your home, you should qualify for some or all of your personal care to be paid for by the local authority. But in Scotland, personal care is free regardless of your means if you are over 65, but you may be made to pay for the accommodation element of your care if you are above the means-testing thresholds.

Regardless of whether you think you'll qualify for financial support, Alex Edmans, a care-advice specialist at Saga, says you should start by requesting a free care-needs assessment from your local authority, which everyone is entitled to. The assessors will advise you on what kind of care you need, and if you're entitled to financial help, they should pay for it as well.

If you also have nursing-care needs – for example, you have problems with breathing or continence – talk to your GP or nurse to request an assessment. If you are in a care home, the NHS should contribute to your fees if you have nursing-care needs, and if you need round-the-clock care, the NHS should pick up the bill.

To get specific advice, call one of the free advice lines as early as possible. FirstStop has lots of information on its website, or you can speak to an adviser by calling 0800 377 7070. Alternatively, call Saga's care-advice line on 0800 056 6101.

What you're entitled to

When you have your care-needs assessment by the local authority, you'll also be assessed for your income and savings. If you live in England, you should qualify to have your care paid for by the local authority if you have less than £13,500 of savings (excluding your home), and if you have between £13,500 and £22,250, you should be entitled to some support. These thresholds are lower in Wales and Scotland.

If you're staying in your own home, the care should be organised and paid for directly by the local authority. But if you're moving into a care home, the funding situation becomes more complex.

If you're planning on moving permanently into a care home, the local authority will insist that you sell your house to pay for it. But you are legally entitled to a 12-week property disregard, meaning that the authority should pay for your care for the first 12 weeks to give you time to sell your home.

If at the end of those 12 weeks, you still haven't sold your house, you should be entitled to an interest-free loan from the authority. However, Phil Spiers of FirstStop says that with people finding it hard to sell their properties, many authorities do not have enough money to provide these loans, and some are trying to deny people the help that they're entitled to for the first 12 weeks.

Edmans adds that the authority shouldn't take your home into account if it is jointly owned by yourself and another family member. But more and more authorities are disregarding this guidance.

If you don't own a property (and your savings are less than £22,250), the authority should agree to pay your care-home fees. But it is only likely to agree to contribute a certain amount per month, which may not be enough to cover the fees of the home you choose. In this case, families often pay the difference to secure a place in a nicer home. But some have no option but to accept a place in a home where the authority can pay the whole bill. This may not be as nice or as convenient.

If you have nursing-care needs as well, you may be entitled to a non-means-tested contribution of around £100 a week from the NHS. Or if you need round-the-clock support, you should be entitled to NHS continuing healthcare, a comprehensive package that pays for the whole care bill.

In addition, everyone over 65 with care needs, whether they're living in their own home or a care home, should be entitled to attendance allowance. This is not means tested and is payable at £47 a week for those who just need care in the day, and £67 a week for those needing care round the clock. If you are under 65, you should qualify for Disability Living Allowance, which could pay you up to £113 a week, depending on the level of care you need.

Self-funding

If you don't qualify for any help from the authority, you'll need to find a way of using what assets you have to pay for your care. Given that no one knows how long they're going to end up living in a home, this can be complex, which is why it's crucial to seek specialist advice. Organisations such as the Nursing Home Fees Agency ( www.nhfa.co.uk; 0800 99 88 33) and Saga will provide free advice, and have advisers who are specially trained in this kind of retirement planning.

If you are planning to stay in your home, you may need to use an equity-release plan to release some or all of the value of your house. Or, if you're moving in a care home, it might be sensible for you to use your savings, or money from the sale of your house, to buy an immediate-needs care annuity, which will meet your care bills for the rest of your life.

Case study 'I'm glad I took advice'

Comment

Sheila Buckthorpe from Bolton first found herself having to negotiate the complexity of the care funding market two years ago, when both her parents needed to be moved into a care home. Unsure of where to turn for help and advice, she started off by calling care homes in the Yellow Pages, and planned to combine her parents' assets into a single account to cover their fees.

Fortunately, a bank manager recommended she contact the Nursing Home Fees Agency to seek specialist advice. The NHFA warned her against pooling her parents' assets, pointing out that by keeping them separate – and using each parent's money to pay their own fees – there would be money left for some inheritance to be passed on.

"If we'd not taken this advice, and changed the wills – all the money would have gone to my mother when my father died, and then that would have all ended up being used to pay care home fees," says Sheila.

Instead, Sheila's father used his pension to pay for his care home fees, while her mother used some of the money from the sale of the house to buy an immediate needs care annuity – which guaranteed to pay her fees for the rest of her life. The rest of the money was passed on to the family.

Sheila says she is relieved that she took professional advice, but wonders how many other people in her situation would have made the wrong decision because they didn't know help was available.

I knew things were bad, but this is a real disgrace

By James Daley, Personal Finance Editor

Although I've been writing about the embarrassing state of Britain's care system for more than five years, it wasn't until I recently experienced it first hand that I began to understand just how complex and unfair it really is.

A close relative of mine (let's call her Phyllis), who has been unwell for much of the past few years, took a turn for the worse in December, to the point where she was soon in need of some help every day. With no assets other than her house, I knew that she should qualify for a fully funded home care package from the local authority – but finding information about how to get this help proved incredibly difficult.

In the end, I turned to a charity, which advised my family to request a care needs assessment from the local authority on Phyllis's behalf.

However, this took days to organise, during which time Phyllis was regularly alone at home, unable to wash, cook, clean – and sometimes unable even to get out of bed.

Fortunately, another family member began paying for a private nurse to go round a few times a week, and my sister, who doesn't live far away, was also able to make occasional visits. However, between managing the responsibilities of a Masters course, a part-time job and bringing up two young children – the additional burden of caring for Phyllis put a real strain on her.

By the time the assessment finally took place, Phyllis had made some improvements – and was able to carry out some of her daily personal routine without help. As a result, the assessors claimed that she was not "critical" – and put her case to the bottom of a big pile, saying they'd be back in touch shortly. That was several weeks ago, and there's been no contact since.

As a result, Phyllis ended up – like thousands of others – without the help that she needed when she was at her worst, and has been given no promise of any support in the future now that her care needs are more moderate. And the reason? The authority simply doesn't have enough cash to pay for the care of all the people who it's supposed to be looking after.

The health service has also been at fault here, too. Months ago, Phyllis started to lose weight rapidly, and a note was put on her medical file to weigh her every week.

In fact, no one weighed her again for another two months, by which time she'd shed another 20 per cent of her body weight and was in a desperate state. If she had received the medical attention she needed when she first started to deteriorate, perhaps we could have avoided those awful few weeks where she on her own and unable to look after herself.

The treatment and care of elderly people in Britain is nothing short of a disgrace – and it astounds me that it is so seldom an issue that steals front page headlines or receives the political profile it deserves.

Although the Government is all too aware of the problems in the care funding system, it also knows that any solution will be costly. Furthermore, it takes comfort from the fact that the victims of this scandal are in no position to take to the streets in protest. Consequently, the idea of reform is left in the long grass.

But Britain is an ageing society – and the care funding problems will only become more acute if they are not tackled soon.

Our elderly citizens – who have contributed lifetimes of work and taxes to Britain – deserve to be treated with more respect.

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