Talk is cheap when it comes to fuel poverty

Imagine being forced to live in a single room as spiralling fuel costs make heating your home impossible. For many pensioners, such a frightening thought is a sad reality as they are left with no choice but to make drastic cutbacks just to stay alive over the winter.

In fact, a new report by the British Gas Help The Aged Partnership estimates that 4.5million elderly people will heat a single room – and 25 percent would climb into bed as a way of keeping warm.

But what is alarming is that we hear the same year after year and nothing has been done apart from a few token payments to alleviate the pressure of fuel poverty on the elderly. Winter fuel payments are set to increase – a much needed start for sure – and a sign that the government is at least looking at the problem.

But what are organisations like British Gas and E.ON doing to help their elderly customers?

Not a lot in the case of one lady I spoke to.

Widow Noreen Binz lives in South Shields and is on a tariff run by E.ON Age Concern, which she hoped would have her best interests at heart. Instead she’s faced gas and electric bills over the summer totalling more than £300. Confusing bills have compounded the problem – and forced her to consider cancelling her direct debit to the company until she knew how much she had to pay.

“I’m frightened of the costs,” she says. And who can blame her? Her suppliers have certainly done very little to help – and instead of cutting costs continue to pressure the government to increase winter fuel payments.

Reports like this raise awareness of the plight of many pensioners but lack credibility coming from an industry content to bleat about the Governments inactivity but doing little itself.
But at least the report has one use; On top of an open fire, as much needed winter fuel…

Alzheimer’s Run

Should people with dementia be put down? Well that’s what Lady Warnock, the ‘veteran’ medical ethics commentator, believes.

She is quoted in a recent article in the Daily Telegraph as saying that people with dementia are a burden. “If you’re demented, you’re wasting people’s lives – your family’s lives – you’re wasting the resources of the National Health Service,” she said.

She went on to say that she hoped people would soon be “licensed to put others down”.
This is eerily redolent of Logan’s Run – the 1976 film where anyone over the age of 30 is killed – and raises potentially disturbing questions.

If Lady Warnock’s idea is given credence – and I can see some people thinking it’s a good idea – then where do you stop?

Why not euthanise other people with terminal degenerative conditions, such as motor neuron disease or Parkinson’s? After all, they will become a burden to their family and the NHS too.
Heck, anyone needing care could be got rid of; it would solve the funding problem in the NHS and allow everyone to get on and enjoy their own lives without having to care for loved ones.

Perhaps as soon as someone is diagnosed with a condition, or even comes to retirement – the end of their ‘useful’ life and when people most need the NHS and care services – they could be terminated painlessly thereby solving any problems before they start.

Of course my dystopian vision of the future won’t happen, but neither should Lady Warnock’s ideas ever get beyond opinions in newspaper articles either.

A person has a right to life and just because they’re ill doesn’t mean they have no value and should be dispensed with. After all, there are about 6 million carers in this country, and hundreds of thousands employed in the industry. Many of them enjoy looking after others and make a positive difference to their quality of life.

A person with dementia is someone who has lived and loved; treating them like diseased cattle is not an option. We need to understand the condition and treat it – and one day even cure it.

Animal magic

At Bettercaring we take great delight in all things offbeat and decidedly oddball. So we jumped at the opportunity when a note arrived inviting us to an exotic ‘jungle safari’ at a nearby care home.

By the time we got there, all manner of creepy and cuddly critters were being paraded in front of excited care home residents. These included a fruit bat, an albino Burmese python, a rhesus monkey, ring-tailed lemur and penguin.

As the exotic creatures were passed around by specialist handlers, the home’s residents gasped in wonder and not a little awe; proving that even the frailest and most dependent people can raise the roof when they’re having a good time.

Of course, there was a serious side to the afternoon – it gave residents much needed stimulation – but it also pushed back the boundaries and challenged preconceptions of old people in care.

One lady loved snakes and had grown accustomed to them after spending time in Africa – yet never expected to see a live one again. Filled with questions about the python – and eager to give it a stroke, she showed no fear. And although others were less keen on the snake (one resident, for example, shrieked at the mere mention of the word ‘snake’), all were willing to overcome their trepidations and give it a pet.

It was a similar story for the other animals. Indeed, the penguin and rhesus monkey proved so popular the event over-ran by an hour-and-a-half.

But what really struck me was the attentiveness of the residents – especially towards the animals. I expected the day to be a trying test of patience, with the residents bored and disinterested. In fact, they couldn’t wait to see what was next.

Even after the animals had gone, the home was still buzzing with excitement. The activities co-ordinator was pleased; the day had been a roaring success and she was looking into hosting another animal safari day…despite the penguin’s insistence on messing everywhere and the monkey escaping into the manager’s office.

In fact, the only grumpy face in the building belonged to Buster the Shih Tzu pat dog – who must’ve been feeling like an endangered species himself.

Car park rage

Good news for people in Scotland and Wales that have loved ones in hospital; no more will you have to pay for the privilege of parking at the hospital to visit them.

But for those that reside in England, the charges – often equivalent to multi-storey car parks – remain in place.

It doesn’t seem fair – wasn’t the NHS set up to be free for all? Even if you purchase a weekly or season ticket, it is still not cheap to park.

I’ve written before on the practice of charging for car parking – basically, I think it’s immoral – but this rubs it in.

While the Scottish Government and Welsh Assembly should be applauded for getting rid of these charges, the UK government should be condemned for not following suit.

The government is not going to follow either. Health Minister Ben Bradshaw said he did not believe it was a “sensible use of limited resources” to subsidise car parking at hospitals in England.

However, I’m pretty sure that the Welsh and Scottish branches of the NHS aren’t swimming in excess cash, but they still seem to have found the money to do it, so I don’t buy that excuse.

I also don’t believe another comment from Bradshaw. He added that hospital trusts set their own charges to cover the cost of running and maintaining a car park. If so, how it can cost that much - £3.30 for 2 hours at one hospital in Birmingham - to look after a bit of tarmac with some white lines painted on it is beyond me. Even with a few CCTV cameras and a security guard or two, the cost is not that high – certainly not high enough to justify the charges.

It feels like yet another way that taxpayers are being fleeced through no fault of their own.

Nobody should have to pay to visit their loved ones. My advice is to find the nearest side street to the hospital, park there and walk in.

Alzheimer’s breakthrough gives real hope

When I first heard about a potential breakthrough in finding a treatment for Alzheimer’s disease last night, I was sceptical.

I’ve banged on about this in previous blogs, but in recent weeks it seems every day has brought new stories of potential treatments for Alzheimer’s or ways to stop it developing in the first place. From properties in blood pressure or cholesterol control drugs (promising), through tomatoes and tea (doubtful) to a helmet that bathes the user in infra-red light (downright odd) it seems anything and everything could be the key.

So many theories left me jaded and cynical; it seemed no-one really had any concrete clues as to what could treat the condition.

But this changed last night.

British scientists say a drug called rember can stop Alzheimer’s progressing by as much as 81%. There are hopes it could even stop the condition in its early stages, before symptoms appear.

Crucially, rember targets the ‘tangles’ in the brain of someone with Alzheimer's that destroy nerve cells and lead to a deterioration in memory and can bring the worst affected parts back to functional life. While not reversing the condition, it does seem to virtually halt its progress

By addressing the tangles, seemingly with success – although the trial was only on 321 people – it goes to the crux of the condition and genuinely seems to offer an effective treatment that could extend the functional life of people with Alzheimer's by years.

While my optimism is tempered by the facts that it could still be several years before the drug is ready to bring to market, and even then there is no guarantee it will be available on the NHS – remember NICE’s decision on Aricept [see Dementia: restricted access to drugs ] - it is nonetheless the most concrete evidence yet that finally the trauma of dementia could be on the way to being beaten.

Are you running the risk of dementia?

If newspaper reports from the past 7 days are to be believed, women who had low IQ as children, now have high cholesterol and blood pressure and regularly eat tofu are destined to be struck down with dementia.

Meanwhile, men over the age of 90 who eat plenty of tomatoes and fish are in great shape to avoid the condition.

Some of it we know already, such as the memory benefits provided by fish; others are new. But the constant reportage makes for information overload. Throw in recent genetic breakthroughs and you’d think we’re on the cusp of a genuine breakthrough in treating the disease.

The problem is, we’re constantly on the cusp – and waiting for a cure for Alzheimer’s is like waiting for a bus that’ll never arrive. Although I’d like to be proved wrong.

More potential causes will come and go over the next few weeks. We’ll continue to be told what is good and bad for us to eat – potentially scary if you’ve spent a lifetime eating the ‘wrong’ food – and never even known.

Take the latest culprit, tofu. A supposed ‘superfood’ - many healthy and committed vegetarians swear by it – yet now their being told it could cause dementia.

This theory may be debunked over time, while the search for other causes continues relentlessly.

There’s no doubt such findings are needed - but shouldn’t the boffins keep the results to themselves until they find a cure? Or at least make a genuine breakthrough?
By Robert Mair

Hope of deliverance

Yesterday was a good day for people like pensioner Margaret Coates.

She made headlines in March because she faced blindness after her local PCT refused to fund the drug treatment needed to combat her wet age-related macular degeneration.

Bromley PCT said it would only fund treatment for those with unusual or unique clinical factors, and Mrs Coates had neither.

But the kind of issues affecting the pensioner could be a thing of the past in England if the recommendations in Lord Ara Darzi’s review of the NHS are put into practice.

One of the key tenets of Lord Darzi’s review is to ‘personalise’ – that word again – services to make them fit for everyone’s needs, “includ[ing] those people traditionally less likely to seek help or who find themselves discriminated against in some way”.

In addition, Lord Darzi says the NHS should “guarantee patients access to the most clinically and cost effective drugs and treatments” where the clinician recommends them.

Reading between the lines, this should mean that older people such as Mrs Coates will be able to get the treatment they need.

There was more good news in Lord Darzi’s report. The commitment to preventative healthcare should help pensioners and people with learning disabilities to remain in their own homes for longer.

A focus on quality rather than targets is also welcome. Putting the emphasis on providing quality, individual care and improving standards harks back to the earlier days of the NHS and is long overdue.

But while Lord Darzi’s report on the future of the NHS makes for heartening reading, it is up to the government to deliver on it and as ever this is the potential sticking point; neither he nor the government has made any mention – that I can find – of how this will be paid for.

This is worrying. The NHS is underfunded and implementing the recommendations of the report will not be cheap.

Where the extra money will come from to make good on these commitments is a mystery to me and without a coherent strategy for funding it I can see Lord Darzi’s report falling flat. That would be a great opportunity missed and people like Mrs Coates will still not receive the treatment they need.

Carer’s Strategy – a step forward?

The government’s much-vaunted update of the Carer’s Strategy was launched earlier this week and, as ever, while it contains some help for those in need, it doesn’t go far enough.

The new Carer’s Strategy certainly makes some bold commitments. For example, it says that by 2018 ‘carers will be able to have a life of their own alongside their caring role’ and will be ‘respected as expert care partners and will have access to the integrated and personalised services they need to support them in their caring role’.

But cut through the raft of rather woolly but well-meaning objectives and there is little concrete detail of how this will be achieved. I assume this will come later, possibly around election time, if you’ll excuse my cynicism.

Nevertheless, there are positives; the measures that have been announced, such as establishing a helpline and website for carers and launching a training programme for carers, seem to be a move in the right direction. I often hear carers saying that information is at best difficult to come by and anything that will help them cope with their responsibilities better is a good thing.

The move to double the amount of respite time available is also good news; it is now becoming acknowledged that carers – and the people they care for – need to have breaks from each other.

But the real bugbear is that the Carer’s Allowance, which currently stands at a frankly pathetic £50.55 a week – or £2,682 a year – has been left untouched.

The benefit, which is the lowest available, is often not worth the hassle and can tie carers into a poverty trap; if they earn more than £95 per week or study for more than 21 hours per week they can no longer receive it.

But rather than give any immediate increase in the benefit, the government has chosen to lump it in with the wider review of care funding and benefits, which is currently in a 6-month public consultation process and the review won’t be released until some time next year.

Until then, the new strategy will not affect many carers’ lives and no matter how many platitudes are trotted out, it will be the pound in their pocket that many carers will be most interested in and will make the most difference to them.

Social care cuts: a worrying story

Now, only 4 councils provide care for the neediest in society, according to a report on the BBC’s Politics Show.

Good news if you live in Calderdale, Sunderland, Darlington or on the Scilly Isles – but worrying for the rest of us. Over 75% of local authorities now provide social care for elderly and disabled people who meet the criteria for ‘substantial’ needs. For those with ‘moderate’ or ‘low’ needs, they are left to face the challenges on their own.

And the situation’s unlikely to improve any time soon.

An estimated £6 billion budget shortfall over the next 20 years, caused by an ageing population and more demand for services, will further restrict the opportunities for those at the lower end of the care spectrum.

The much-touted personal care budgets will do little to ease the situation and simply shift the burden away from social services and onto the families, who will struggle to fill the gaps in the care services.

But at least there’s one solution in the short-term; you could always move to Sunderland…

The future’s not bright

Ageism, neglect, poverty, isolation and deprivation; if that is all that the UK’s pensioners have to look forward to, it is no wonder that a quarter are making themselves sick with worry about it.

Help the Aged’s report ‘Spotlight 2008’ paints a grim picture for the nation’s elderly, claiming that ageism is rife, 21% of pensioners live below the poverty line and one in five do not always get treated with dignity in hospital.

As a result, nearly a million more older people are making themselves sick with worry than this time last year, the charity reports.

So much for retirement as the “golden years”.

Inevitably, Help the Aged has outlined a list of policy demands for the government to adopt, including a ban on age discrimination in the upcoming Equality Bill and establishing a targeted strategy to reduce pensioner poverty.

These are all laudable aims but whether the government will listen is another matter. There was precious little in the last Budget for older people – bar an increase in fuel payments, which will not cover the hike in prices – and it has steadfastly ignored all calls to raise the basic state pension and recently fudged the reform of the social care system.

The government’s ambivalent attitude to an increasingly large section of society seems to be percolating down to other areas, with ageism in the workplace and in general seemingly on the rise.

If this is to be addressed, the government needs to take the lead and put in place measures to ensure that pensioners do not have to struggle in poverty and are treated with the respect that anyone – regardless of age – deserves. The recent appointment of Sir Michael Parkinson as a ‘dignity ambassador’ is a step in the right direction, but more needs to be done.

After all, the power of the “grey vote” should not be underestimated. A few pensioner-friendly moves could bring Labour much-needed extra votes whenever the next election rolls around.

Social care funding: who cares?

So what is all this hogwash from the government about giving people a fairer deal on social care?

It’s the old tale of Nero fiddling while Rome burns, and all that...

Ever since New Labour stormed to power, the government has promised to review the care system with a view to reforming it. It’s a story that started in 1997 just as Tony Blair moved into 10 Downing Street.

This week, some 11 years later, Gordon Brown announced to a population weary of government obfuscation that six months of public consultation on social care is to begin in earnest. Meanwhile, a Green Paper on social care, first earmarked for publication in April, is not even on the horizon.

This is a typical government fudge designed to kick the social care agenda into touch until the run up to next general election. At that point Brown, or whoever else is running the Labour party, will issue a new social care manifesto amid much fanfare and vote catching headlines: “They care after all”. The government has probably already booked a slot in 2009 on the Andrew Marr Sunday show. Election 2010: you read it here first.

Meanwhile, back on planet earth, a brace of surveys has damned the way social care is organised in England and Wales. People are worried about how to pay for their care, worried about moving into care homes and very worried about the current means-testing system. One survey by Caring Choices found 90% of people want to see the back of it.

And as the government procrastinates, the malaise in the social care system intensifies making reforms more difficult to implement. Local authorities become more cash-strapped, cutting off vital services and politicians continue to obfuscate where possible because they have no answers –and because they can.

And while Nero fiddles and all that… real statistics on social care relating to real people’s lives will continue to do the rounds. Some facts to date: by 2028 there will be a £6 billion shortfall in care funding; at the same time a quarter of the UK’s population will be over 65 years old and those over 85 years old will have doubled. Meanwhile more than 1 million will have dementia. Who will be caring for all these people and how is that going to be paid?

Remember, we’re not talking here about your mums, dads or grandparents – the next generation is you and me.

By Andrew Chilvers

All stars?

This week, the Commission for Social Care Inspection has launched its much-vaunted star ratings system for care homes. But are they a useful guide for the public or just a waste of time?

The theory is that the system of awarding care homes stars gives the public an at-a-glance guide to how good a home is; 3 stars means it’s an excellent home for you or your mum, 0 stars means it should be avoided and possibly be closed down.

So far, so good – after all, it works in the hotels industry, among others. But moving into a care home is a much more complicated business than looking for a hotel and should not be viewed in the same way – it is more like buying a house and should be treated with the same thorough research.

So for this reason, I wonder whether the star ratings will really make a difference. People looking for care homes are increasingly savvy and many already know of and use the freely available CSCI reports on care homes. These go into much more depth about the conditions there, judging it over 7 categories and listing what the home does well and does badly, rather than just an overall star rating.

For me, the star ratings will only be useful at the outset of a search for a care home. If someone is skimming a list of homes in an area, it will most likely mean that homes with poorer ratings will instantly be discounted.

But this will not save that much time because about 70% of care homes have received a 2 or 3-star rating so far and only 3% given a zero rating. While this is good news – it shows that the vast majority of care homes do provide a good service – it will not narrow the field down much for many people. So they will still have to complete the time-consuming legwork to find the right home for themselves or their loved one.

Dementia drug appeal victory gives hope

It seems odd that while potential treatments or cures for Alzheimer’s disease are heralded in the media virtually every week, access to a readily-available drug that is proven to help people with the condition is restricted.

Yet this is the case with Aricept, a drug that many people with early-stage dementia say has changed their lives – although hardly anyone can now get it on the NHS.

But this could be about to change, thanks to a Court of Appeal ruling.

The ruling relates back to November 2006 when the NHS advisory body, the National Institute for Health and Clinical Excellence (ironically referred to as NICE), decided it was not cost-effective to give Aricept to people with early-stage dementia and reversed its earlier guidance to issue it as standard.

The decision came as a shock to many people with the condition. Anecdotally, many have sung the praises of Aricept and the way it has given them their life back – few can fathom NICE’s decision.

Moreover, nobody understood the decision because few if any details of how NICE reached that verdict were made public.

As a result, Eisai, the manufacturer of Aricept, challenged the process that NICE went through to arrive at its decision to restrict access to the drug. The case went all the way to the Court of Appeal – after the High Court rejected Eisai’s case – which sided with the manufacturer. Giving NICE a rap on the knuckles, the Court of Appeal insists that in the future it should be more transparent in the way it makes decisions.

Eisai will now be able to see how NICE came to its decision and comment on it. NICE will then have to go away and consider those comments carefully, which could lead to another review of Aricept’s availability.

So what’s in it for all those people with dementia? Some 100,000 or so people denied Aricept and other such drugs will hopefully get the review they’ve been pushing for and a positive decision will be made for them sooner rather than later.

Stop talking start acting

I’m getting a sense of déjà vu.

In the news today MPs have urged the government to clamp down on the “dangerous over-prescribing” of antipsychotic drugs to people with dementia in care homes.

MPs say about 105,000 people with dementia are given prescriptions they do not need because antipsychotic drugs have no benefits and could even worsen residents’ conditions.

These drugs have been associated with an increased risk of stroke, social withdrawal, accelerated cognitive decline – especially verbal skills – and severe sensitivity reactions. Essentially, they can leave a person with dementia in a zombified state.

Haven’t we heard all this before? This story seems to keep coming back into the headlines about once every couple of months – indeed, I blogged about it back in February [http://bettercaringblog.blogspot.com/2008_02_01_archive.html]. Panorama also had a programme on it late last year.

Last time I wrote about this, I said it was good that the issue was being revisited because it should prompt something to be done. But it seems that – still – nothing is being done, except a lot of hand-wringing and points-scoring soundbites about how “the government must end this needless abuse”.

Various people in parliament and beyond have been saying this for months. Surely the time for talking has ended, there needs to be action to stop this drugging of care home residents now. Even if it is a directive to care homes and doctors telling them to stop prescribing antipsychotics unless they are a last resort, it would be something.

But this is not going to happen. While it seems that action will be coming, it will only be once the government’s much-vaunted National Dementia Strategy is published sometime later this year.

For some people, you can’t help feeling that it will be too late by then. For the 100,000 or so people still stuck in a zombified state – or even ushered to a quicker grave by needlessly prescribed antipsychotic drugs – time is something they do not have.

Tomorrow’s world

The so-called ‘iPad’ promises plenty for the pensioners of the future – but is it more a pipedream than a panacea for loneliness?

If the Life Trust Foundation is to be believed, the granny flat of tomorrow will be an Aladdin’s cave of webcams, wall-to-wall plasma TVs and intelligent appliances.

This will help tackle loneliness and allow grandparents to ‘virtually’ baby-sit their grandchildren from the comfort of their plugged-in palace. Combine this with email, web-chat and social networking, and the pensioners of the future will never need to leave home to stay connected.

Sensors underneath cookers and baths will be able to tell if they’ve been left on, making it a safe environment for people to live in. Only those with serious needs will require social care – and even then, care homes will be replaced by ‘boutique hotels’.

So, on paper the future looks good. But isn’t this just papering over the problem of loneliness? Viewing your grandchildren through a TV screen does not compensate for the real thing – unless they’re monsters fed on a diet of violent games and virtual experiences.

And then there are there is the problem of the technology itself.

If the doom-mongers are to be believed, the Internet will come crashing down within 10 years because of the public’s hunger for downloads, Internet TV and content streaming.

Although that’s the worst case scenario, how will a 73-year-old – a little unsteady and living miles from the family – cope in the digital age when the Internet decides to serve its last Google search? Given the dependence on technology, it could be a disaster as people are forced to go out and do things themselves – possibly for the first time in generations.

Despite this, the granny-flat of the future offers plenty of opportunities for isolated and lonely individuals – especially if it is done correctly.

And you’d hope, with all that expensive kit inside, it would have an ingenious way of alerting you to the bogus salespeople who come knocking…

Stop the charges

My partner was recently admitted to the local county hospital and while her stay was mercifully brief and she received excellent care, there was one notable downside; parking charges.

Without wishing to sound Scrooge-like, I only went to this hospital four times but still ended up shelling out about £15 in car parking fees. A stay of a little over two hours (the length of visiting time) cost a whopping £3.30.

Many hospitals have been charging car parking fees for several years now. While they tended to start fairly cheap – 50p, no matter how long you stay, for instance – prices have jumped in recent years and are now on a par, if not more, than your average city centre multi-storey.

To me, this is morally wrong. It is unfair to penalise anyone visiting a relative or friend who is sick, even more so if it is a long-term condition. Imagine a pensioner having to visit his wife who has a broken hip. She will not be going anywhere for some time, and if he wants to visit her every day – a not unreasonable desire – the cost will quickly mount up. While you can get discounted weekly or season tickets, it would still take a significant chunk of the basic state pension.

These charges are essentially a licence to print money, taking advantage of a captive market. There is no way out of them.

The excuses hospitals give for introducing charges do not wash, such as deterring commuters parking in hospital car parks and cutting congestion. These are minor problems at worst and the end does not justify the means.

It wouldn’t be so bad if all the money from the charges went towards patient care, but often it doesn’t, especially in those hospitals that outsource the running of their car parks to a private company.

Hospital car park charges should be scrapped; it’s morally wrong for people visiting sick relatives or friends – especially those needing long-term care – to have to pay for the privilege. There is no need for it and it only succeeds in putting more stress on people at a time when their energies should be focused on the person in the hospital bed.

A Lidl bit of what you fancy…

Just imagine doing your weekly grocery shop and picking up a grab rail alongside your grapes, or packing a bath seat next to your tins of beans.

Ten years ago, such a thought would have been ludicrous, but supermarket chain Lidl is now offering customers the chance to purchase home aids as they peruse the shelves.

This move has enormous benefits for elderly shoppers, particularly those on low incomes. For starters, it is cheap; a Lidl grab rail costs £4.99 compared to B&Q’s that will set you back £9.98.
It is also far more convenient to buy these things in a supermarket than having to make an effort to go to a DIY store. And if you haven’t had a needs assessment but feel you require some help getting around the house, it provides a cost-effective solution.

Obviously, there may be differences in the quality of the products offered by specialist manufacturers and DIY stores compared to Lidl’s modest range of big-buttoned telephones and leg pillows – but it is a welcome addition to a largely-untapped market.

Hopefully the bigger supermarkets will follow Lidl’s lead and offer similar products in-store, instead of shunting them to the website, where they remain hard-to-find.

End in sight for postcode lottery?

Finally.

After years of grumbling by people in the care system, the government has finally announced that the eligibility criteria governing older and disabled people’s right to receive care services is to be reviewed.

In theory, this review could see the end of the unacceptable ‘postcode lottery’ of care services. But we should not get too excited – the credit crunch could see any reform stymied.

One of the most common gripes I hear is the unfairness of the care services system, where someone in one area is denied – in some cases life-saving – drugs, while elsewhere they’re available.

The Commission for Social Care Inspection has been asked to undertake the review and report back to Care Services Minister Ivan Lewis in the autumn. CSCI’s brief is to focus on national definitions of need and the application at a local level.

At least the review is focusing on the right area. A set of national guidelines for eligibility, which are not open to interpretation at a local level, is crucial. All too often local officials have their own take on the rules and this needs to be stopped. Access to care services should not rely on the luck of where you happen to live.

But much of the postcode lottery is borne out of a lack of adequate funding for social care services. Many councils have ramped up their eligibility criteria in recent years to save money and plug huge holes in their budgets.

And with the credit crunch and resulting economic downturn, it is unlikely the government will start pouring extra cash into council budgets to fill those holes.

So while this review is to be welcomed, how much effect will it really have? If any major reforms happen, they will be down to the economic situation and the prospects for the moment are looking grim.

Do you feel lucky?

Continuing care should be given to everyone when they need it. But the current system is hampered by a postcode lottery, depriving many because of where they live – and this is only going to get worse.

New government guidelines have increased the eligibility for access to ‘Continuing NHS Healthcare’ by more than 5,000, Age Concern says. Yet in many areas of the UK vulnerable people are seeing reductions in the services offered.

If you live in Mid Essex, Sandwell and Wandsworth, the situation can’t get much worse.

All three authorities have reduced the continuing care services offered by more than 80%. East Riding, meanwhile, halved the number of people receiving continuing care – some achievement considering they had the second-lowest number of service users in the first place.

The gap between the worst Primary Care Trusts and the best is one that deserves much consternation and head-scratching, and is evidence of the postcode lottery facing people who access healthcare.

If you live in Coventry and Plymouth you’re in luck – both have reported a growth in the number of people using the service. Better still, Derby, which had the lowest number of people accessing continuing care in 2007 – 1.5 people per 50,000 – has grown to 25 people per 50,000.

How some PCTs can offer such extensive continuing healthcare while others fail is a mystery, but by naming and shaming Age Concern has successfully highlighted the inequalities found throughout the UK.

In the case of some – particularly Derby – it’s great to see moves being made in the right direction, and the PCTs should be praised for raising the standards. But this still remains a postcode lottery that needs cracking.

Where has all the money gone?

That was the question asked by Age Concern recently when it reported that an estimated 2.2 million pensioners had not claimed council tax benefits. Elsewhere, 1.7 million were not claiming Pension Credit, and 310,000 were not receiving Housing Benefit. Total all this up and it amounts to some £2,000 a year per household in unclaimed benefits.

There may be a stigma attached to claiming benefits, but £2,000 is a lot of money – especially for pensioners who may be funding care, may still have a mortgage to pay, or may be caring for somebody else.

But, above all, can government do more?

In a sophisticated modern state like Britain, it’s disquieting to think there’s not a central database that contains all this information. Government is eager to catch tax dodgers, but seldom eager to pay out when it should.

Moves are being made in the right direction with the initiative on self directed support, a buzzword that means people will be given the freedom to choose their own kind of care out their own personal budget, supplied by the local authorities. This will also give people the right to question the benefits system – and hopefully encourage them to take the benefits that are on offer.

Nevertheless, self directed support will take years to roll out across the country and each local authority will have its own idiosyncrasies regarding services. It’s certainly not a quick-fix panacea and, meanwhile, older people will continue to lose out on essential benefits.

So what’s the answer?

If you can, go to your local social services, speak to your social worker and demand to know what benefits you are eligible for. This really is essential; it could be the difference between a cosy, heated home or days spent under covers in the bedroom during the latest cold snap.

Care home attitudes need to change

When many newspapers recently carried stories about hundreds of illegal immigrants working in care homes, one question was left unasked: why are so managers willing to employ them?

The answer, it seems, is that most British people don’t want to work in care homes.

Recently I attended a conference where I was told that the available social care workforce in one English town dropped by 10,000 after a Morrison’s superstore opened up nearby. To put it bluntly: most British people would rather work in a hypermarket stacking shelves than help to care for the elderly and disabled.

Unfortunately, it’s a scenario that has been repeated across the country and should surprise no one in the caring industry.

Working in social care requires dedication, but it’s low paid, the hours are long and the media publicity is almost wholly negative. It’s hardly an incentive to want to join the industry.

To state the obvious: a sea change in the perception of care homes and care home workers is needed. But the question is how to achieve it.

A good start would be to emphasise the positive work that goes on in many residential homes. For example, schemes such as Art for Age, in Kidlington in Oxfordshire, a joint project between the Glebe House care home and Beckley Primary School, showed what can be achieved. The public display of artwork late last year was a great success. See www.bettercaring.com/editorial/channel3.aspx?id=370 for the full story.

Highlighting the tireless work that many care home workers and managers put in to the job would also help the industry. This could help restore a sense of pride in their work.

As well as this, pay rises for care home workers would help to retain the best staff and provide an incentive for others to progress.

Many care homes, especially those run by the local council, operate on tight budgets, with little in the pot for pay increases. With the government showing little sign of increasing funding for social care, staffing concerns and adverse media publicity are probably set to continue.

Benefits system needs continuing reform

With a benefit called ‘continuing health care’, you would expect it to be paid out to all those with long-term serious healthcare needs. But apparently not.

Currently, more than 400 people are suing various health authorities after they or a family member were refused continuing health care. They allege they were not given proper assessments and had to pay out hundreds of thousands of pounds in some cases for nursing care as a result.

While the plaintiffs are seeking compensation, it highlights the confusion around what constitutes social care – which is means-tested and carries a charge – and health care, which is provided free by the NHS.

The distinction between the two has been muddled for years, and has often come down to the local Primary Care Trust’s interpretation of government guidelines.

Unsurprisingly, it has led to some frankly baffling decisions. I have heard anecdotally of a man with the later stages of dementia – he could not walk, barely talk, was doubly incontinent and needed help for the most basic of tasks – refused continuing health care.

How a man with such care needs, and who’s health clearly won’t improve, does not warrant continuing health care funding is beyond me.

This provides another example of the urgent need to reform care funding. The guidelines for awarding benefits such as continuing health care need to be clearly set out and the distinctions between the various benefits need to be made clear to all.

If this happens, it could stop people being wrongly forced to pay for their care. Estimates in the press speculate that if the judge were to rule in favour of the 400, thousands of pensioners could be in line to claim refunds from the government – a bill that could run into hundreds of millions.

It is a bill the government could ill afford, but may help galvanise ministers into action to ensure that such cases do not occur again and that the care funding system is finally made simpler and, for many people, fairer.

Bogus nurses: a care home conundrum

If fighting against perceived poor standards and public perception weren’t enough, care home managers now have to contend with fake nurses.

This goes far beyond poorly qualified staff and involves people pretending to be registered nurses to work in a care home.

The story of 49-year-old Carol Dabbs is one that should alarm every care home manager – and the families of anybody who lives in a care home.

Dabbs is alleged to have lied about being a nurse, and worked at a couple of care homes in Wales between 1992 and 2006. She was allowed to administer drugs and care for vulnerable frail people with no qualifications or training.

She now faces criminal charges of deception, supplying class A and class C drugs and wounding. A helpline has been set up for people who may have been treated by her.

At Bettercaring we hear of numerous cases of people unqualified to do the job, but few are as serious as this.

That Dabbs got away with it for almost 15 years is frightening and astonishing, and part of the blame must lie at the doors of Neath Port Talbot Social Services and the two care homes in question for not vetting the staff appropriately. Even the Care and Social Services Inspectorate Wales (CSSIW) should face an inquiry for such an enormous lapse.

But it begs the question – how easy is it for someone to get a job in a care home without the right qualifications?

I recently spoke to Diane Smith, the manager at Cantelowes House in Barnet, and was impressed with the standards of recruitment in the home. She refuses to use agency staff and ensures there is a paper trail associated with every member of staff.

New members of staff don’t start work until all of the checks have been carried out, and this paper trail makes it impossible to falsify records – training and experience. It’s an almost foolproof system.

Diane admits it’s a long process, but it means there are no false nurses on the books – and she can sleep easy when CSCI come to visit.

A little perspective

When allegations surfaced of dementia sufferers being neglected at Bamburgh Court Care Centre in South Shields, the ‘Fourth Estate’ went on high-alert.

With reports of residents being forced to sleep on filthy mattresses on the floor, mouldy food left rotting in the cupboards and faeces smeared on the walls, it’s no wonder many older people fear going into a care home.

These shocking allegations about Bamburgh Court Care Centre appeared last week in the Daily Mail and this story will no doubt heighten fears about the standards of care in residential homes.

But from what we have seen at Bettercaring, these cases are few and far between and the vast majority of people in care are well treated and lead happy lives.

In truth, nobody knows how prevalent abuse is in care homes, which is why the announcement of a £2 million study by the Department of Health and Comic Relief into the risk of abuse in care homes and the infringement of dignity on NHS wards is timely.

The research, which, crucially, will take in the views of older people, should finally show how widespread – or not – abuse is in care situations.

The results of this research – slated to come out in 2011 – will hopefully demonstrate that abuse in care is rare and that cases such as Bamburgh Court are the exception rather than the rule.

But more importantly, it should help to change perceptions about the industry.

In the meantime, the government has announced plans to strengthen protection for vulnerable elderly people in care homes and ensure those that do suffer abuse can bring the perpetrators to book.

The government plans to make people who have publicly-funded care in private homes subject to the Human Rights Act, which should safeguard them from such things as unfair eviction. Also, self-funders will be able to refer complaints to an independent adjudicator from later this year.

These are all positive steps and should, in time, help to rebuild the industry’s reputation, which has been consistently tarnished in recent years by stories such as Bamburgh Court. It will take a long time to change the public’s perception, but these are steps in the right direction.

Entertaining residents isn’t child’s play

Bingo. A spot of telly. Maybe even a singsong for the lucky few. Or that’s the common misconception of activities in care homes. But having spoken to numerous experts over the last week it’s heartening to see the importance placed on stimulating entertainment.

Yet it wasn’t until I spoke to Sheila Searle – a woman seemingly obsessed in her desire to change care home activities – that the passion of the dedicated activity coordinators became obvious.

Disillusioned by the lack of support, resources, time and poor pay, Sheila gave up her role as an activities co-ordinator in a Buxton care home to set up inspiritbuxton. An online resource for activity coordinators it combines best practice, hints and tips and lots of ideas for activity staff as they aim to improve the service they offer to their clients. It’s a great idea, and should prove to be very successful.

But activity staff are at the coalface of an industry in flux – and are the first to find their services slashed come budget cuts. The result is fewer resources and less time to plan an effective activity programme that stimulates all of the senses.

Having visited a number of care homes now, it’s apparent to me just how hard-working and under-valued activity staff are. They’re the unsung heroes in the care homes. Their work isn’t ‘necessary’ like health or nursing care, nor does it enable the homes to run effectively, like the administrators.

Yet they have more interaction with the residents than anybody else. They’re the ones who make them smile, or challenge them to tr something new, and they’re the ones who break up the monotony and ensure residents aren’t force-fed ‘Cash in the Attic’ day after day.

However, in this world of profit-driven care it’s easy for companies to look over this devotion when the balance-sheet must be pleasing on the eye.

There will be more information on Sheila’s story and inspiritbuxton on Bettercaring shortly.

Magical mystery tour

‘Every day is different’ is usually one of the reasons care home managers give for liking the job – and after spending the last two days interviewing care home managers for Bettercaring.com it’s something I can fully appreciate.

Having visited a number of modern purpose-built homes, I’ve witnessed some excellent examples of best practice and person-centred care first-hand. But at the end of two draining days in Barnet and Bristol, something heart-warming happened; an eager resident took me on a tour of her care home.

Bursting with pride, Violet took over the mantle when the care manager was called away mid-tour. Despite suffering from dementia and relying on a Zimmer-frame for support, she had boundless energy and clearly loved the home and the staff. She’d pause and speak to other residents, describing them to me as “lovely” (and me to them as her “new friend”). And even despite the use of a frame, she kept up a frantic pace.

It didn’t matter that we were simply going backwards and forwards down the same corridor. Violet was enjoying being the centre of attention – and I was enjoying the unique ‘tour’. In fact, it was a shame when the care manager returned and the proper tour resumed.

But Violet wasn’t deterred so easily. She joined us on our mini-adventure around the home, and helped the care manager just like a trusty co-pilot. She even asked if I could move a teddy bear off an empty chair so another resident could sit down!

Eventually Violet lost interest and decided her time would be better spent in the lounge with some of the other residents. There were no goodbyes – she just drifted off.

It hit home just how serious and affecting dementia can be, and although Violet may not remember my name (she forgot it almost instantly) or my visit, she certainly left a profound impact on me.

Little cheer for older people

Alastair Darling has delivered his first budget, but there was little in it to help the millions of hard-up older people in the UK.

Other than stinging those who like a tipple – 55p on a bottle of spirits – there is little in the Budget that will particularly hit pensioners in the pocket. It is more what was not in it that will concern older people.

But first, the good news; as widely anticipated, Darling has increased the winter fuel payments from £200 to £250 for the over 60s and from £300 to £400 for the over 80s.

While the increase is welcome, it will not provide that much help. With some energy providers hiking prices by more than 10% in recent months, the extra £50-£100 will not go far – certainly not far enough to stop pensioners turning their heating down to make ends meet. Overall, prices have increased by more than half in the past five years, while before today the fuel payment had remained static, except for a £100 rise for over 80s in 2003/4.

Staying with energy, the Chancellor has also announced help for the five million people on pre-pay meters, many of whom are pensioners, and who can pay up to £300 more for their energy than those who pay online. He said energy companies should spend £150 million on social tariffs - ways of ensuring that the most vulnerable consumers benefit from the cheapest rates for energy and have access to important support - which could be backed up with legislation, if needed.

Again, this is a welcome helping hand for older people, but doubtless campaigners will say it is not enough.

Other than that, pensioners received precious little mention in the Budget. For instance, there was no mention of a further increase in the basic state pension, which many had been hoping for, especially in light of recent rising energy, food, petrol and council tax costs.

There was also no announcement of measures to help people claim benefits they are entitled to – Help the Aged say that £4.5 billion goes unclaimed each year.

Elsewhere, charities had called for the government to address the massive shortfall in social care funding, which has seen many councils move to provide care services only to those with critical needs. Again, no mention was made of this.

So, with several major issues ignored, and winter fuel payment increases not going as far as many hoped, this Budget is not one to cheer pensioners. And with the increases in duty on alcohol, many won’t even be able to afford to drown their sorrows.

Marching as one

Most people living on the south coast yesterday will have taken one look out of the window and contemplated going straight back to bed.

Faced with gales and driving rain, the thought of going out of the house will not have appealed. But a hardy band of pensioners from Hampshire took up their waterproofs and walking sticks and braved the conditions to march in protest about the state of pensions.

The march, in the centre of Southampton, was to mark the centenary of the state pension and highlight the plight of older people in the county to local MPs.

With rising energy and food costs, many pensioners on the basic state pension are struggling to make ends meet. Don Harper, the secretary of the Southampton Pensioners’ Forum, says the basic pension is now only 15% of average earnings and below the poverty line.

But while many pensioners are struggling, there are ways they can boost their income. Benefits are available to poorer older people – Council Tax Benefit and Pension Credit to name but two – but many are not aware of them or how to claim, or can’t be bothered with the hassle of applying.

Romsey MP Sandra Gidley said benefits are available to pensioners if they “jumped through the right hoops”. That quote shows the nature of the problem – benefits should be easier to understand and apply for and is hopefully something the government will address later in the year as it reforms the social care system.

More immediately, the march was also timed to coincide with today’s Budget. While this protest will not have informed Chancellor Alastair Darling’s thinking there is nevertheless speculation that he will make some pensioner-friendly moves. For instance, a rise in winter fuel payment has been mooted, as has an increase in funding for social care.

Whether this happens, we will have to wait and see. But if moves are not made to make the pensioners’ lot a happier one, then protests such as this could well become a regular occurrence.

Quiche of mind from dementia diagnosis

It’s not often we get to witness the early signs of dementia first-hand – especially when someone might not realise they’re succumbing to the disease – but this lunchtime was a sobering experience for me and staff in the local sandwich shop.

I do my best to bring a packed-lunch most days (I blame the Scottish genes inherited from my dad) but after a particularly lazy night, I thought I’d treat myself today to a good old panini from the deli in the centre of the village.

In between idle chit-chat with the waitress (Keira Knightley’s been in for the second time this week, I’m excitedly told …) an old man walks in, dressed in tweed and with a large green deer-stalker covering his greying hair. It’s cold outside and he looks blustered and weather-beaten. Well-known to the staff – it being a small Oxfordshire village – he asks if he’s been in today.

The staff look bemused.

Not only had he been in, he’d also purchased a quiche and salad barely five minutes before I appeared.

He looks bewildered; the staff concerned. They ask if he’s alright: “I’m fine,” he counters before walking off – oblivious to the confusion – and still holding the quiche and salad he’d bought previously.

There’s a moment of stunned silence. “He’s not alright, is he?” says one of the waitresses. Worried looks pass between them. Of course it could be just forgetfulness – but their concerned faces paint a very different picture.

Friendly banter melts into subdued silence, and I’m left with my own thoughts which, oddly, have nothing to do with a potential encounter with the lovely Miss Knightley.

Dementia: Don’t call us sufferers

Mention the term ‘dementia sufferer’ to James McKillop and he visibly bristles.

For James, who has early-stage dementia, the term is something of a bugbear. He says its negative connotations – it’s easy to think of someone in a care home, unable to do anything unaided – do not reflect the situation for many people with early-stage dementia.

James is enjoying life to the full, pursuing his own interests and spending time with his family. In addition, he travels all over the UK speaking about dementia and talking at conferences as part of the Scottish Dementia Working Group, a campaigning organisation run by people with dementia with the aim of improving services for people with dementia and attitudes towards the condition.

The term ‘dementia sufferer’ also ignores the fact that for many people, being diagnosed with dementia is a good thing. Indeed, he refers to himself as a dementia enjoyer – because his quality of life has improved so much since he was diagnosed.

James is not alone. The selection of members of the SDWG I met last week in Glasgow all say they prefer their lives post-diagnosis.

Instead of thinking their lives were over, and giving up, settling back to wait for the inevitable decline, they have seen it as a challenge and a catalyst to move into a new phase of their lives.

For example, everyone in the group has developed new skills, from photography to sign language. They say it’s not about what you can’t do; it’s what you can do, which is just about anything. While learning new skills may take a little longer for people with dementia, they can still be done.

The SDWG is all about challenging the stereotypes and stigmas often attached to dementia, and shows what can be done. If more people had their attitude to dementia, then ‘suffering’ would never come into it.

More from my meeting with the SDWG will be appearing on Bettercaring.com in the coming weeks.

A design for living

You don’t become a homeware giant like B&Q by resting on your laurels and last week, I saw what the store has planned for its elderly customers in its Easy Living range. And although what they offer is not revolutionary – nor cheap – it does show how major retailers are taking the issues of an ageing population seriously.

From a walk-in bath to a moveable cupboard, B&Q have thought of everything that you could want in the bathroom, lounge and kitchen and adapted it specifically for the elderly or disabled.

For a mainstream trader, it’s a risky move, not least because the floorspace in the showroom could be taken up with another equally-expensive, modern installation, targeted at the affluent 40-somethings building a luxurious family home.

However, it should be commended, simply because it highlights the need for specialist equipment for an increasing part of the population – and the fact that a trained fitter can do the installation for you takes away the burden of self-assembly.

Whether they sell or not is another matter, but it may lead other retailers to follow suit – and that can only be a good thing.

Cost of care homes

In 20 years time, a four-year stay in a care home will cost an eye-watering £223,000, according to a Saga survey.

That’s double the cost of four years care now and will no doubt strike fear into Baby Boomers’ hearts everywhere – it is they who will be paying those costs. Their children will also have been alarmed by the report - they could see their inheritance disappear if their parents are in residential care for any length of time.

It highlights the need for people to plan ahead for care. While previous generations may have relied on (or hoped for) the state to provide for them in old age, it is becoming clear that, especially with an aging population, this is not going to happen. It is becoming accepted that some, if not all, care costs will have to be met by the person in question or their family.

The care funding system is being reviewed and is likely to be reformed later this year. It is hoped that the much-disliked means testing system will be abandoned with a financial model based on a partnership between state and individual replacing it.

While many people will be reluctant to plan for something that may never happen, a system like this may prompt the more savvy to put something away for their old age. If they know they cannot rely on the state and do not want to face the possibility of having to sell their house to fund their care, then a bit of financial planning now could make things a lot easier in 20 years time.

Behind the headlines

Once again, a case of alleged neglect in a care home has hit the headlines. The story of 94-year-old Molly Darby was carried by most of the national dailies today.

It is alleged that within four weeks of going into the Beeches Residential Care Home in Wath-upon-Dearne, South Yorkshire, Mrs Darby went from being in relatively good physical health to arriving at hospital with a chest infection, pneumonia, septicaemia, a urinary infection, a bad ear infection and pressure sores.

Unsurprisingly, the newspapers carried this in some depth, some with a more sensational slant than others. The Daily Mail’s headline in particular caught the eye; ‘Care home left my mother looking like a concentration camp victim’.

For an older person, who might be getting frail, reading stories like this will make the thought of moving into a residential home terrifying.

Indeed, two thirds of older people are already “frightened” of the prospect of ending up in a care home, according to a recent ICM survey.

But a little perspective is needed here. While there are some shocking examples of neglect and abuse in care homes these are very much in the minority.

Obviously newspapers pick up on these stories because bad news sells – it makes a better headline than ‘Older person has really nice time in care home shocker’. But these stories do distort the public perception of care homes and the industry.

In reality, many people in care homes are very happy – the story of Peggy Hughes (http://www.bettercaring.com/editorial/article3.aspx?id=792) is typical of what we hear.

For some people, going into a care home can give them a whole new lease of life. Rather than worrying about looking after the house, washing or cooking, they can focus on their own interests. Others make a whole new network of friends, instead of being isolated in their own homes because they are too frail to go out.

I’m not saying newspapers should not highlight cases of neglect or abuse – they should because such cases need to be highlighted, stamped out and the perpetrators dealt with. But more stories about the other side of the care home industry could stop misconceptions growing among the public and help people see that moving into a care home is not a last resort.

Sticks and stones…

The idea may seem a little absurd, but over-60s playgrounds seem to have found favour with the young-at-heart.

A phenomenon in Germany, they’re now making their way over here. Manchester laid claim to the first last month, and a village in Hampshire has said it is investigating the idea.

But most bizarrely of all, Lytham pensioners have now contested the claims by Manchester that their playground came first. The sticking point? Their own playground hasn’t ‘officially’ opened yet…

In this day and age, that’s like a red rag to a bull – especially in the laws of the playground.

No doubt a turf war is just around the corner, with battle-weary pensioners stalking their rivals round the ‘Happy Big Wheel’ or ‘Massage Rub’. Of course, Lytham in Blackpool was in the running for one of the best towns in Britain – meaning they should be better-armed than their inner-city rivals should any trouble start brewing…

Of course, it’s all little more than handbags at dawn, and is very useful in promoting the benefits of over-60s playgrounds.

But it begs the question; can’t they just grow up, act their age and play nicely?

On the road again

Journalists are often required to do something a little out of the ordinary – and here at Bettercaring, it’s no exception.

But jumping behind the steering column of a jumped-up go-kart masquerading as a mobility scooter is perhaps my strangest assignment yet…

The thing is, everything about a mobility scooter is presented in an over-earnest way. Some people would even go as far to say they’re stigmatised as being a sign of age. And with names completely disassociating it from its major use (as in getting someone from A-to-B), they are probably right.

However – and this may sound perverse – I actually had FUN testing it. A mobility scooter is a rare thing that is both functional and enjoyable. And although people who are losing mobility might not find much fun in being confined to a scooter, it does have its advantages.

For example, 4mph on the pavement is nothing to grumble about, and you can even crank some up to 8mph on the road if you’re feeling adventurous.

And just think of the joy you can get by indiscriminately running over those miserly folk who’ve spent the last five years moaning that you walk too slow on the pavement (although for legal reasons, you probably shouldn’t do this – maybe just threaten to…).

Better still, it even comes with a horn, meaning you can toot at all the young ladies as you pass by. And everyone can appreciate the fun in that.

The simple life

In interviews for features for Bettercaring.com, health and social services often get short shrift from people who’ve had bad experiences.

Yet while people are happy to complain to journalists like me, they are generally more reluctant to make a formal complaint. The reasons, they say, are simple; the complaints procedure is over complex, inefficient and not worth the bother.

It appears the government has agreed. After making a commitment to reform the complaints procedures for health and adult social care in its White Paper ‘Our health, our care, our say’ last year, the Department of Health has now revealed how it plans to do this.

For example, there are currently separate complaints procedures for health and adult social care which makes it difficult for people who use a combination of services to make a complaint. Under the new regime there will be a unified complaints procedure, which should help simplify matters and encourage more people to complain.

Elsewhere, the new system will also focus on local resolution and then - if unresolved – it will be investigated by the Health or Local Government Ombudsman. This will replace the often lengthy and bureaucratic procedures currently in place.

Anything that helps simplify the system should be welcomed. For too long the system has been over-complicated and more of a hindrance than a help to the service user, and has put many off making a complaint.

But if these reforms are to be successful, it should be heavily publicised, to ensure older people especially know about their rights and that it will not prejudice their care in the future.

Hopefully this will be the first of many reforms to simplify the health and social care systems this year; social care funding is next on the list, with a Green Paper due in the next few months.

From what I’ve heard, it can’t come soon enough.

Under the cosh

Stories of care homes using a ‘chemical cosh’ of strong drugs to effectively turn dementia sufferers effectively into zombies – the dead living, if you will – are back in the news.

While this story has come to national prominence several times before – including a Panorama programme late last year – it is important that it is revisited; the unnecessary drugging of residents - in this case with antipsychotic drugs - is something that should be clamped down upon.

While the numbers of Alzheimer’s sufferers kept sedated with antipsychotic drugs vary - up to 100,000, depending on where you read – it is still a significant proportion of sufferers in the UK.

Worse still, the Alzheimer’s Research Trust has found that putting Alzheimer’s sufferers on these drugs does not do most of them any good – and shortens their life in some cases. But when you consider these drugs were designed to treat schizophrenia that is perhaps unsurprising.

If, as some claim, dementia patients are drugged mostly to make life for care home staff easier, this needs to be addressed because it is an abuse of the sufferer’s dignity.

A potential solution is for care home staff to receive compulsory and better training in dementia. Currently, training is optional and can comprise a course lasting for less than a day – barely time to skim the surface of such a complex condition.

If all care home staff were sent on specialist courses, lasting at least a few days, it could make a big difference to their understanding of the condition and help them to deal with sufferers in a more positive way and improve their quality of life.

But whether this happens is another matter. Many care home managers will claim they do not have the budget for costly training courses and with the economy slowing it is unlikely there will be any government grants.

Working 9 to 5

For carers who also have a full-time job, juggling the two responsibilities can be a struggle, especially when working a rigid nine-to-five. As any carer knows, caring needs do not fit within handy, regular timeframes, and employers are not always sympathetic to requests for time off or a change in working hours.

But the case of Sharon Coleman may help more carers to get the flexibility they desire. Yesterday, she won the latest round of her legal battle in the European Court of Justice to end discrimination against carers.

Coleman, who has a son with hearing and breathing problems, claimed her employers discriminated against her and treated her differently from parents whose children were not disabled. She was branded as lazy and manipulative when she tried to take time off to care for her son.

She claimed constructive dismissal and disability discrimination. A tribunal referred it to the European court, which has initially sided with Coleman.

If this is confirmed by a panel of judges later in the year, the law against discrimination on the grounds of disability could be extended to all carers of elderly or disabled people – around six million in the UK.

While the right for carers to request flexible working was introduced last year – several years after it was for parents, incidentally – employers can still turn the request down if they wish. But if this case goes through, employers will need a very good reason for turning a request down.

Employers may not like the prospect of this, but if handled sensibly, it should not impact adversely on their business. Indeed, flexible working can often increase productivity and loyalty. But for carers, it could be the difference between keeping a job and becoming a full-time carer only.

Even if this judgement does lead to a change in the law, juggling full-time caring and full-time employment will still be a challenge. But it could at least give some protection to carers and ease some of the stress, so they can concentrate on doing both jobs to the best of their abilities.

Let’s get physical

Thought playgrounds were just for small children? Think again.

A new playground designed specifically for fun-loving over 65s has opened in north Manchester, kitted out with equipment to give people a gentle workout.

The £15,000 Older People’s Play Area has six pieces of equipment, such as a ski-walker, that strengthen hips, tone legs and the upper body.

It goes to show that you’re never too old to play. I’m sure many grandparents have watched enviously as their grandchildren played on swings and slides, never daring to have a go themselves. But now they have their chance without having to feel self-conscious.

While this may sound a bit frivolous, there is a serious point to the playground. Regular, but gentle, exercise is important to help keep older people healthy and mobile, yet most don’t do enough. If something like this, which is fun and quirky, can help older people to become more active, then it should be applauded.

Who knows, perhaps in the future it will be granny pestering the kids to go to the playground and not vice versa?

Money money money

The Commission for Social Care Inspection’s (CSCI) report into the state of social care in England paints a grim picture of a system failing many people.

CSCI estimates that more than 250,000 people with care needs receive no services or informal care. Meanwhile, 450,000 older people who do get some care from family and friends and/or state services have a shortfall in their care.

Overall, in the past five years the number of people using council care services has dropped by 27,000, despite the population over 75 increasing in that time by 3%.

The reason why more people are receiving less care is simple; money. Cash-strapped councils are raising the eligibility thresholds for who qualifies for care to try and balance their books. CSCI found that 62% of councils raised their eligibility threshold to ‘substantial’ in 2006/7, with the percentage expected to go higher in 2007/8.

Perhaps stating the obvious, CSCI’s chairwoman, Dame Denise Platt, says “there is an urgent need to create a fair and equitable social care system, which is sustainable and affordable.”

The crux is the “sustainable and affordable” element. To do this will require money – and lots of it. But where will it come from?

Would the government have the guts to raise taxes to pay for increased state care costs? Higher taxation will never be a votewinner and with a general election on the horizon, and poll ratings not exactly stellar, Prime Minister Gordon Brown may be reluctant to do anything that may antagonise voters.

Likewise, while the current means-tested funding system is almost universally disliked – a recent Caring Choices report said that 90% wanted an end to it – finding another system that proves to be popular will be tricky.

It is accepted that people needing care will have to pay for some element of the services they use, but how great a percentage and whether a universal element should be included are hotly debated points. Many older people resent having to use their savings or sell their house to pay for care because they see it as depriving them of their life’s work and their children of an inheritance.

These are just some of the arguments around care funding, and demonstrate how difficult it will be for the government to find a solution that at least some people will be satisfied with.

But while there are some difficult decisions ahead, the government will have to bite the bullet because if they don’t, this situation will only get worse.

Jumping the gun

Another day, another cure for Alzheimer’s disease is announced.

Recently it was claimed that a special helmet worn for 10 minutes a day could reverse the effects of Alzheimer’s within weeks of starting to use it. The contraption, which looks like something out of a TV science fiction series, bathes the brain in infra-red light to stimulate the growth of brain cells, which can reverse memory loss.

This follows an announcement last week of research that has identified certain proteins that can reverse the effects of the disease within minutes of it being injected into a sufferer.

A quick trawl through the news section on Bettercaring (http://www.bettercaring.com/editorial/channel3.aspx?id=92) reveals several other stories during the past few months of researchers excitedly declaring a cure or treatment for Alzheimer’s, but in most (if not all) cases there is a caveat saying that research is at an early stage and further analysis is required.

It is this that stops me getting too excited about the news. While a treatment or cure for Alzheimer’s would be an amazing breakthrough that would transform the lives of millions in the UK – sufferers and their families alike – anything that could be prescribed by your local hospital or GP is still years away.

The real time to get excited will be when – or if – wider, more in-depth research is completed that reinforces the early findings and scientists are looking to commercialise a product.

Until then, Alzheimer’s sufferers will have to make do with current treatments, which at best can only slow their decline, and the hope that these discoveries are as good as the scientists claim and get to market in time to make a difference to them.

Time for a change

The news that many people who care for dementia sufferers feel abandoned by the NHS will have been no surprise to those who are in that situation.

While it means they are not alone in being let down, it demonstrates the extent of the reforms needed to bring social and health services up to scratch for the more than 700,000 dementia sufferers in the UK.

The House of Commons’ Public Accounts Committee (PAC) report into dementia services was damning, including criticising GPs for a general lack of knowledge about the disease and the wider NHS for generally depriving many sufferers of specialist care when they are in hospital or a care home.

But the PAC report was not just about criticising services. It also made some sensible and practical – if not a little obvious – recommendations on how to improve services, such as making more respite and domiciliary care services available, especially to those who care for their loved one at home. In the later stages of dementia especially care services are crucial to help carers cope with what is often a 24-hour job.

In response, health minister Ivan Lewis has – to his credit – acknowledged that services are failing and pledged to transform the support available to families.

While this sounds good, Lewis stopped short of saying how and when services will be transformed. Instead, he said that the recommendations of the PAC report will be considered “in the context of the work taking place on the strategy”.

This means carers will have to wait a while longer yet for any changes to their lot, but with powerful cross-party Parliament committees such as the PAC throwing their weight in, it seems likely that change will come sooner rather than later.

A Hollywood Ending

The Oscars panel love nothing more than a good terminal illness and, for the noughties at least, Alzheimer’s seems to fit the bill.

For example, the 2001 film ‘Iris’, which focused on the relationship between the novelist Iris Murdoch (Dame Judi Dench) and her husband (Jim Broadbent), received three Oscar nominations for its all-star cast, which also included Kate Winslet. It raised the profile of Alzheimer’s considerably, yet only ended up with one Oscar to show for it – a best supporting actor gong for Broadbent.

This year Alzheimer’s could again take centre stage at the show. It has a real possibility of joining the likes of cerebral palsy, autism and AIDS, which all received major attention after picking up one of the big three awards – best film, best actor or best actress.

Julie Christie is in the frame for best actress for her portrayal of an Alzheimer’s sufferer in ‘Away From Her’. Having already picked up the equivalent Golden Globe, and with a further BAFTA nomination under her belt, it means for once there could be a happy ending for such a tragic disease.

Fit for purpose?

A recent post on the Bettercaring forum (http://www.bettercaring.com/community/forum.aspx?id=150) cannot fail to move all those that read it.

The author of the post, Lonestray, alleges the care home system for Alzheimer’s sufferers is “not fit for purpose” after witnessing the treatment his wife received some years ago.

Lonestray says his wife’s teeth were never cleaned, nor was she ever visited by a dentist. Her ears and nostrils were not properly cleaned, her nails were dirty, and she was pumped full of drugs.

Disillusioned and disgusted by her treatment and fearing his wife was heading for a premature death Lonestray took her out of the home and has cared for her himself for nearly five years. She was only given weeks to live in the nursing home.

While Lonestray and his wife were obviously failed by the carers in the nursing home, it should be noted that there are also many examples of Alzheimer’s sufferers receiving excellent residential care.

However, the point is that all Alzheimer’s sufferers in nursing homes should receive the same standards of care and not be reliant on the good fortune to have a good home in their local area and being able to afford its fees.

Standards in nursing and residential care homes are steadily getting better, so incidences like Lonestray’s should be declining, but there is still a lot of scope for improvement.

Lonestray has his own ideas on how care could be improved. For example, he recommends that Alzheimer’s patients receive one-on-one care from someone with a deep understanding of the condition.

It is these sorts of opinions that the government should listen closely to as they plot the future of social care and how it is funded in the coming months. If it is serious about providing dignity to older people, taking measures such as this would be a big step forward.

Making a tough decision tougher

For many people, Sir Norman Wisdom will forever be the clown in the ill-fitting suit falling over in black and white movies. But now, aged 93, he is a shadow of his former self, suffering from vascular dementia and sometimes unable to recognise his own family.

When Sir Norman was first identified as having dementia in his early 90s, his two children, Nick and Jackie, along with his faithful PA, Ann, shared the caring duties between them.

But as Sir Norman’s dementia worsened, Nick and Jackie were faced with the decision to try and carry on caring for him themselves or to put him into a nursing home where he could get round-the-clock care. For any family, this is a tough and emotional decision, but most don’t have to deal with the scrutiny of the media as well.

Sympathy was seemingly in short supply. Some fans were upset at their decision, one tabloid ran a story that the family were not letting anyone see him – not true, they say – and a radio station said they should be shamed “into doing something humane”.

This reaction shows the ignorance and prejudice that still surrounds the plight of carers who take the decision to put their loved one into a home.

All too often they are portrayed as heartless. Some people – who more than likely have never had to care for someone with dementia, or know how serious the disease can be – assume that they couldn’t be bothered to look after them anymore and abandoned them in a home. Nothing could be further from the truth.

This only serves to make the carers – who probably already feel very guilty about the decision they’ve made – feel even worse, when they’ve only had their loved one’s interests at heart and in all probability made the best move for them that will improve their quality of life. It serves no-one.

Sadly, carers are still a hidden group in society, and it is almost a taboo subject. These barriers need to be broken down and exactly what is involved in caring for someone with dementia and how hard it is should be publicised, loudly and often.

In addition, the notion that a care home is just a way of shutting someone away and forgetting about them needs to be addressed.

Hopefully, the first step will be a documentary on Nick and Jackie’s decision to put their father into a home. The documentary Wonderland: The Secret Life Of Norman Wisdom Aged 92 ¾ is on BBC2 at 9.50pm tonight. With any luck, it will give the critics of Sir Norman’s children a new insight and maybe they will think twice before criticising anyone else that makes the decision.

Read all about it

After years of being ignored, elderly care, care homes and carers seem to be flavour of the month in the media.

The BBC is running its month-long ‘Care in the UK’ season on Radio 4 and online, while the Daily Mail has been running its ‘Dignity for the Elderly’ campaign for some time. Meanwhile, several other national daily newspapers have carried in-depth articles on elderly care in recent weeks.

The BBC especially seems to be pushing the topic, with features all month on Radio 4's Woman’s Hour and You and Yours. These have included Gordon Brown talking yesterday on Woman’s Hour about his plans for social care, as well as TV presenter Tony Robinson last week discussing his mother’s battle with Alzheimer’s and experience of putting her into a nursing home on You and Yours.

All this is welcome news. For too long care for the elderly has almost been hidden, pushed down the national news agenda in favour of ‘sexier’ issues involving younger people.

If elderly care has made the news, it is often for the wrong reasons, such as an example of a care home resident being abused. As a result, many people know little or nothing about the true state of elderly care.

With an emphasis on the human angle, and real life experiences of care, the BBC’s programmes should hopefully jerk a few heart strings and demonstrate that older people in residential care are still people and should not be dismissed as “past it”. Who knows, it might even help to change a few attitudes in society.

But while it will get people talking now, the key is ensuring that after this season of programmes has ended elderly care remains near the top of the news agenda and isn’t forgotten when the next topic du jour comes along.

Only by keeping the sector in the news will there be a chance of changing attitudes and influencing the government’s policy – the forthcoming Green Paper on care funding will shape the sector for years to come. This is an opportunity not to be missed and all organisations involved in the care sector should ensure they do their utmost to keep up a flow of news.

Still caring after all these years

So this weekend, I found myself musing on how some people seem to have an endless ability to give.

For some of us, just getting through the week and keeping our heads above water is more than enough. But over Christmas when out for the obligatory Boxing Day walk, we walked past a group of people of mixed ages, who looked like they were having the type of Christmas that everybody aspires to: lots of laughter; children screaming – in a good way; people smiling.

It turns out that the couple at the heart of this group are foster parents, and the others with them were past and present foster children – some of them now grown up, and returning for Christmas. And all of them looking like they were enjoying being together. How many “traditional” families manage that?

I was told they had been fostering for years, and had many, many children pass through their care, and they looked to be still going strong.

For me, this is something to aspire to.

Become a carer? Why bother…

So, one trainee home-carer in Essex stole more than £1,000 off two vulnerable elderly clients, and another care worker in a Bolton home attempted to torch the place after being suspended.

And that’s just in the last two days.

Countless other examples exist of where those in a position of trust abuse their power, hurting or endangering the lives of our loved ones. These people, who probably account for less than one in a hundred care workers, succeed in tarnishing the good work that everyone else in the industry does.

So how can we protect our elderly from these rotten apples?

For starters, better employment procedures should be put in place, to stop these bad eggs getting jobs working with the elderly. Thorough police checks, in theory, are carried out on everyone who works with children, yet it would appear the elderly aren’t afforded the same luxury. But they both need protecting.

Moreover the image of the industry needs to change. It has a very lowly perception from almost every conceivable angle. The media rarely give it any credit, families struggle to praise the dedicated staff, and workers often feel undervalued and underappreciated by employers and PCTs. It’s one of the first areas to get hit by budget cuts, staff morale is often at rock bottom, and even dedicated overseas staff are in constant fear of being deported thanks to immigration laws.

And they wonder why they have trouble attracting decent candidates…

By tackling these issues – and looking at the pay rate of carers – this could make it more attractive to prospective employees, and attract a better class of person to care for our nation’s elderly. It won’t happen overnight, but something desperately needs to be done if we don’t want to read of abuse, arson and robbery on a daily basis…

All change

Very few people like the current care funding system, according to Caring Choices’ report, ‘The Future of Care Funding – Time for a Change’, which was released on Monday. This will have surprised no one.

Likewise, everyone already knows the system is generally complicated, irrational, unfair and under funded.

But while Caring Choices states the obvious somewhat and calls for the government to overhaul the system as soon as possible – a Green Paper on the future for care funding is promised later this year – it gives some pointers that the government would do well to heed when it comes to put the report together.

For example, 99% of people believe the care funding system will need more cash, and 90% want to abandon means testing to determine who gets state assistance in favour of a more universal system based on want rather than wealth or income. Acquiescing to both of these wishes would instantly get a lot people onside.

Caring Choices also puts forward some realistic alternatives to the current regime, barring the 20% that reckon care should be fully state funded, which the government would never do because of the big tax hikes that would be needed to achieve it – a sure-fire vote loser.

Most favoured is a system of ‘co-payment’ where the person receiving care pays a fixed percentage of the cost, a system that is already successful in countries such as Japan.

This system – with a couple of caveats thrown in to ensure the poorest are not penalised – seems fairer than means testing, which tends to penalise those that have saved and have assets, and would be more popular than tax rises.

So if the government is to come up with reforms that are to please – or at least appease – the majority involved in the care industry, it needs to do some serious thinking, starting by taking in the criticisms and ideas of Caring Choices.

I’m listening

Ruth Marks, who was yesterday appointed the first Commissioner for Older People by the Welsh Assembly, has said she is “here to listen”. I’m sure there will be no shortage of pensioners out there itching to tell her exactly what they are unhappy about and what she should do to put it right!

But whether Marks, already dubbed the ‘pensioners’ czar’ by more than one newspaper, can make a difference to older people is another matter.

Wales has a higher proportion of older people than in other parts of the UK – more than one in five people in the principality are over 60 – so she is batting for a large proportion of society.

But many of the issues affecting older people are potentially expensive to the government, such as residential and domiciliary care funding and the level of the state pension. And this is where the problem lies. Governments often loathe giving out more money, especially at a time when the economy is looking wobbly and there are more headline-grabbing areas, such as education and healthcare, which tend to take precedence in these matters.

Also, Marks want to address the neglect and isolation of many older people. Not only will this take money, it will also take a change in attitude from certain people in society, which is again hard to achieve.

Marks may be saying all the things now that older people want to hear – talking of ensuring that the voice of older people is heard and that they are involved in every aspect of policy making and in the decisions that affect their lives – the real acid test will come when she starts work in April.

Hopefully she will be given the power to make a difference in policy and isn’t just a high-profile sop to appease the older people’s lobby.

Stop playing politics and put people first

Just as everyone shakes off their post-Christmas blues and post-New Year hangovers, spare a thought for poor Yvonne Slater. The 84-year-old pensioner was turfed out of Hereford County Hospital in her nightdress at 3am on New Year’s Day and told to make her own way home. The 25-mile taxi journey cost her £80. Not much to celebrate there.

Meanwhile, a few days later it was claimed by the Tories that 140,000 patients were discharged after being badly fed on NHS wards last year. Moreover, the number of people suffering malnutrition or other nutritional deficiencies increased to 139,000 last year from 74,000 in 1997. Given that health and the NHS is such as political hot potato, it’s probably wise to be careful of figures being bandied around by the conservatives. Nevertheless, even the Department of Health figures for last year showed that the nutritional condition of 8,500 patients actually worsened while in hospital.

Frankly, whatever the argument over the figures, this is clearly a serious health issue that has to be addressed, pronto. Given that the NHS is in many respects a service for the elderly, and that the link between decent nutrition and recovery in older people seems so obvious, the idea of healthy eating is absolutely crucial to good nursing and to the recovery of so many older patients.

Just last week care minister Ivan Lewis spoke of New Labour revolutionising social care during its tenure in office. In the same breath he also told the press that 2008 would be the year of a government drive to make sure that “every older person matters”.

It’s about time politicians stopped playing political oneupmanship and “put people first, politics last”. Now there’s a good campaign slogan for the year ahead Mr Lewis.

Only the lonely

Pity poor Olive Archer.

She spent the best part of her life caring for her invalid mother, and so passed up the chance of having her own family.

So it’s a tragic irony that when 83-year-old Olive passed away, she did so alone with no family or friends. She spent the last five years of her life in a care home, in which time nobody came to visit her.

Indeed, it was likely that the only people at her funeral would have been the minister and a funeral director, until the Reverend Akasha Lonsdale stepped in. Touched by her story, Lonsdale appealed for any relatives or friends to make themselves known and come along to pay their respects. So far, this call has yielded more than a dozen responses and ensures the pews will be at least partly filled when her funeral takes place on January 14.

But there are a multitude of Olive Archers out there who do not have a Rev Lonsdale to publicise their passing and each week go to their grave without a send-off from anyone.
While Olive’s is the sort of story to send shockwaves through the younger generation – the “I hope I never end up like that” mentality – many do not think about how it is already a grim reality for many older people.

Indeed, Help the Aged reported in October last year that some 300,000 older people go for more than a month without speaking to anyone and more than one million are always or often lonely.

So why does this still happen?

It would be easy now to rant about the death of society and how older people are neglected, but it would not address the issue that many older people are isolated – from society in general and also care services.

More should be done to encourage older people to use communications technology – one of the easiest and increasingly cheap ways to combat loneliness. For example, in the Republic of Ireland, there is a scheme to help older people learn to use mobile telephones, computers and the Internet. There is no reason why that could not be replicated across the Irish Sea.

Also, some of this isolation could be curbed if social services such as day centres were not cut back. Many local councils now focus on people with acute or complex needs, rather than those with lower level requirements, and services such as day centres – vital to those that use them – are starting to vanish, leaving some older people with nowhere to go and few means to keep in touch with friends.

What about radio waves?

Is GPS tagging really the answer or just another knee-jerk campaign that unravels under scrutiny?

Apart from obvious ethical questions about the Orwellian road to authoritarianism, the rise of Big Brother etc, there's another more prosaic issue at stake here. GPS products can be easily blocked; by buildings, by bridges, even by the ubiquitous winter cloud cover. Radio waves are more reliable if you want to keep tabs on someone. Regarding the Alzheimer’s Society’s advocacy of tagging, it’s probably advisable for them to do thorough research into the technology before setting up a standard for the campaign ahead.