What Price Dignity and Respect?

As befits a story that has great importance for everyone, even if some of us don't realise it yet,  last week's report by EHRC (Equality and Human Rights Commission) into standards of care provided for elderly and disabled people in their own homes made the top of the news across all media. To be honest, the only surprise for me is that anyone is surprised, that if you pay people minimum wage, fail to train them properly, and give them 15 minutes to get someone out of bed, washed, dressed and fed their breakfast, standards of compassion and respect might slip. Oh, and then schedule another 15 minutes "care" for somebody else some way away –  and don't pay for the time it takes getting there.

Looking at domiciliary care over a considerable period, I've seen provision cut from hourly segments to half hours, to the current quarters. Budgets are under such pressure that hardly a council in the land will pay for anything other than critical care needs. At the same time, the bulk of care has shifted from social services to the private sector, so whatever payment is made for that care, an element has to be allocated for profit.

I still don't really understand why commercial operations are automatically assumed to be the best way of providing services. Fine, where consumers want choice, and the ability to select according to different criteria: perhaps price matters most to some, while for others quality is paramount, or personal attention. But provision of care is not a matter of choice. If you are unable to wash yourself, get dressed, use the loo or eat a meal without assistance, then you do not choose care, you need it. Unfortunately, you are probably dependent on someone else to select the people who provide your care, and to pay for it – and that is where I think treating care services as a business falls down, because the "customer" is not really the customer. The person on the receiving end is not the person paying the bill, so their needs are not central.

If you have commissioned services from a company because they are cheaper than their competitors, you can't really complain that their quality is not up to scratch. Equally, if you make it clear that you will only pay an amount for those services that is less than their real cost, you aren't in any position to object when corners are cut.

Nobody who thought about care services in anything other than financial terms would come up with the system we have now, where vulnerable people are dependent on workers operating right on the edge of what is possible in terms of time and money. Frankly, I can't see how stating that dignity and human rights must be respected is going to effect any kind of change, any more than I can imagine the CQC (Care Quality Commission) inspections that were also announced last week achieving anything much, given that the CQC keeps being handed more services to check on with less resources to do it.

Perhaps, as the EHRC report suggested, a council or two may be taken to court for breaching the human rights of the individuals in their care. And perhaps, once that happens, it will provide the necessary motivation for others to do what compassion should have suggested already; treat those of us who need care at the end of our lives as people, rather than objects in the debit column of their profit and loss accounts.

Welfare Reform, our Golden Opportunity to Redistribute Resources

I am returning to the subject of welfare reform, again, as it is clearly a subject that is re-shaping the landscape of British society in a fundamental way.

If you saw John Humphrys' investigation of the way in which the original aims of the Beveridge report, introducing the welfare state back in 1942, have been undermined in practice, by an acceptance - engendered by a generous financial safety net - that it is okay to choose idleness over employment, then you will probably have been sickened by the various interviewees who justified their ongoing dependence on benefits. Anyone who has experienced life on a tight budget - working at a low paid job, or giving up work to care for somebody full-time, perhaps - would be forgiven a moment of righteous indignation when confronted by someone saying that it really wouldn't be worth their while to work, as they wouldn't be much better off, and would miss watching their children grow up, to boot.

As a society, I guess we all have to accept our part in the situation in which we find ourselves. An overwhelming majority of us want a welfare system to protect the vulnerable, and in the good times, when the country seemed to be in fine economic fettle, most of us were glad to see resources invested in lifting children out of poverty and enabling people who are too sick or disabled to work to live decently, with some extra support to help defray the significant additional costs of their condition.

Now that times are tougher, and most people's budgets are feeling the squeeze, that same majority wants the sprawling welfare state radically pruned. No surprise there, and the Humphrys' investigation certainly highlighted, through selected individual cases, the general situation that needs addressing.

What concerns me is that while all our attention is focused on tightening up the system; ensuring that people don't "get away with" living at others' expense, we are in danger of pulling the rug out from under some people who really need and deserve that support from the rest of us. The programme did not feature a single person with a permanent disability who is now facing the possibility of the benefits they depend on being reduced or withdrawn, following a flawed "Work Capability Assessment", which passes so many people as fit to work when they are clearly not, that it is costing us all some £50 million a year in processing appeals against the original decision. To illustrate the situation concerning  Employment and Support Allowance (the benefit paid to people who are too ill to work), they chose someone with ME, certainly a condition that can make it impossible to work, or indeed manage any aspect of one's life, but also one that is not well-understood, and about which many people are still sceptical.

My partner has had ME for many years, so I am certainly not a sceptic, but I recognise that it is not the ideal condition on which to base a strong defence of benefits for people with disabilities. It would have been perfectly possible to find clearer examples, which could have made the point unambiguously that at the same time as cutting out cynical exploitation of the system, we need to recognise and protect those who need help, and often are ill-equipped to fight for their rights. Instead, we seem to be continuing along a path where everybody who claims benefits is tarred with the same brush, as some sort of scrounger.

This could be a golden opportunity to redistribute resources away from those for whom idleness is a lifestyle choice, and towards those whose lifestyle is dictated by their disability.

Putting the Brakes on Motability

A couple of weeks ago, a Daily Mail columnist launched a rant about Motability in classic DM style which I can paraphrase as "...and another way 'disabled people' are better off than the rest of us is that they all get fancy cars to drive at our expense".

Factually incorrect in many ways, suggesting that luxury cars are handed out free of charge to anyone with any type of disability (or such of their friends or relatives as would like one), there was, nevertheless, the kernel of a legitimate news story there, namely, that Motability Operations has burgeoned over the past couple of decades, and is now the biggest fleet operator in Britain, with 575,000 vehicles leased (not given) to individuals with impaired mobility. Nobody gets a free motor: people who qualify for the higher rate mobility component of Disability Living Allowance (DLA) can use that allowance as payment of the monthly charge for leasing a car. Most vehicles also require an advance payment of several thousand pounds – and this is in order to lease the vehicle, don't forget, not to buy it.

Nevertheless, it is clear that provision of Motability vehicles has expanded far beyond what was anticipated when the scheme was set up in 1978, and many people of a more reasonable turn of mind  than right-wing newspaper columnists, have questioned the way in which it operates, and the inevitable problems engendered by one organisation managing such a vast fleet. Equally, as vehicles have become ever more reliable, and most families and businesses are obliged to delay buying a new car for longer, the notion that Motability vehicles are replaced every three years seems a touch profligate in the current climate.

It ill-behoves anyone earning a decent salary who is able to make purchasing decisions based on preference rather than need, to deny someone else the pleasure of a nice car, if that is where they choose to spend their money, on the grounds that they are disabled. That is essentially the unspoken message of the original column: why should a disabled person be riding round in a BMW or Audi? A return to pale blue three-wheelers, highlighting the driver's disability, would no doubt be more to his taste.

Unsurprisingly, the Daily Mail article has prompted an equally fierce response from vocal members of what I hope I will be forgiven for describing as the disability community. Rightly angered at yet another portrayal of people with disabilities as chancers who are exploiting a system that seems to be stacked in their favour. When your life experience demonstrates the very opposite, it is hard not to be angry. During more than a decade editing Independent Living, I have encountered considerably more individuals failing to get their needs met by the welfare system than the opposite.

The DWP, which funds the payment of Disability Living Allowance, has now urged Motability to toughen up its procedures, and ensure that abuses are minimised. New rules will limit the value of cars available on the scheme to no more than £25,000 (for which an advance payment of £2000 would be required); and designated drivers will need to live no more than five miles away from the person who leases the car. To save on insurance costs, the circumstances in which anyone under 21 can drive a Motability vehicle will be strictly limited.

It is perhaps worth highlighting a couple of facts that seem to have been overlooked in the hysteria. The average Motability vehicle costs £19,500, compared with the British average of more than £28,000. And last year, there were just over 7000 allegations of fraud, which is a pretty tiny fraction of 575,000. Despite the best efforts of tabloid journalists to suggest otherwise, people with disabilities are no more likely to be dishonest than anyone else.

Urgent Operational Requirements?

It's in the nature of my job that I send out a lot of e-mails, and that means I also get many automatic responses; those convenient little messages that probably say a lot more about us than we think. I am sure many of the people who are still happily sending out e-mails saying “We're now closed for Easter, see you after the break" or “I am off on annual leave, back on 15 April" would be mortified if they realised!

Now that you're back from checking that it isn't you, a recent phenomenon I have noticed is an increasing number of auto-responder messages stating simply “I have just been made redundant, so won't have received your e-mail". The first one shocked me: a brief sentence, devoid of emotion, yet signalling such a major upset in someone's life. I've had too many now to be shocked any more, but it still makes me sad each time. You see, the people who are in contact with Independent Living in a work capacity are occupational therapists, social workers, care managers, physiotherapists, etc – they are doing the sort of jobs that are essential to help people with disabilities and family carers with living independently.

So every redundancy suggests to me not only a care home, social services department or NHS trust with one less pair of hands to carry the workload, but also a number of clients who have lost their advocate or support, the person who helped them make sense of a confusing and tiring process that must be gone through to access benefits; obtain equipment; get respite care – whatever their particular needs might be. I imagine them having to start all over again explaining for the umpteenth time how they feel, what they need, and how far they had got with the now-departed colleague. And I think about the extra months of waiting that will almost inevitably be added, as a new person with a whole extra caseload tries to keep on top of them all.

At the same time, the National Audit Office highlights seemingly on a weekly basis outrageous amounts of money wasted on projects like the NHS computer system intended to store patient records: billions spent, more billions to be found, strong doubts about whether it will even do what the authors of the experiment hoped when they set the process in motion, and I wonder whether we will ever get our priorities straight.

If you stray outside the realms of health spending, and look at the levels of waste and incompetent procurement practised in departments like the Ministry of Defence, the picture is worse, if anything. Many millions are to be spent on bits and pieces for the renewal of the Trident nuclear submarines, for example, before we even get to the date when an actual decision is taken about whether or not they should be renewed at all. Over the past 13 years, fewer than 200 armoured vehicles procured by the MoD at a cost of £407 million, and a complacent reliance on emergency purchases at outrageous prices in order to provide front-line troops with the transport they need.

It paints a picture of a world where crises which have been created through bureaucratic incompetence take precedence over real people living in the real world with genuine problems that they really need some help to overcome.

There is no equivalent of "urgent operational requirements" (MoD-speak for spending the money willy-nilly) in social care.

Charity Fundraising: Going Beyond the Bounds of Acceptability?

Scarcely a day passes without something arriving in our Independent Living inbox from a business wrongly assuming that we are charity, and desperately pushing their service to help us make money. We are encouraged to send out text messages to mobile phones, engage chuggers, hook up with various businesses to maximise income, whatever commercial activity they are promoting.

There is no doubt that charities – or Third Sector organisations, as we are encouraged to call them – are getting an increasingly high profile, as the government seeks to push responsibility for services that used to be automatically undertaken by statutory bodies out into the community, as it were. In principle, it is a great idea, to tap into a well of hands-on expertise and goodwill, but I find myself increasingly uncomfortable about where lines are drawn between commerce and philanthropy, and the ethical  standards of some organisations of which we might be entitled to think better.

For example, a Charity Commission report on Alzheimer's UK Research Education and Care shows that it raised £351,000, but spent £361,000 on fundraising mailshots and the acting chief executive's salary. It is particularly annoying that an organisation which should be making a positive contribution to an area of medical research that needs all the resources it can get, should have become so wrapped up in fundraising that it neglected what should have been its main purpose.

And this is, I think, the major concern. That organisations – even those which set out with good intentions – have to be so commercial in their attitude that it is all too easy for core activities to go by the board. Traditional donations have declined with the recession, and at the same time, charities are expected to pick up the pieces where statutory services are being reduced. It is really inviting them to sail close to the wind in generating income.

Most household names have trading arms established to make money for their charitable purposes: the problem is that these disparate activities can get confused. An egregious example is Age UK. The charity dedicated to improving life for elderly people also has a business selling products from insurance to mobility aids to elderly people, often at higher prices than they could find elsewhere. It is hard to understand how this can be justified, morally.

What do you think? Should we be pragmatic, and accept that in most cases, charities are undertaking valuable work, and therefore it doesn't matter how they raise the necessary funding? Or should they be held to the highest ethical standards, as befits the status that is conferred on them, by virtue of their special place in the public regard? And if they do become more and more commercial, will they simply lose that special quality which set them apart in the first place?

Independent Living - the Essentials

Independent Living had an interesting email this week from a site visitor asking whether there was a checklist available, that would help him decide whether his mother was still able to live independently, or whether he should be researching care homes.

As far as I am aware, there is no such schedule of tasks and abilities essential to independent living, though I am sure that with a little thought, most of us could come up with a reasonable list of things that really mattered. The difficulty is that the list would probably be different for each of us, as we all have different ideas about what is important.

It seems a little impertinent to think about imposing one's own ideas of what constitutes the essentials of daily living on someone else. Nevertheless, this conundrum is one that faces a lot of people, and numbers are only likely to increase, as more of us live to a ripe old age. Equally, it is hard to broach with somebody the topic of whether they should continue to live alone – it is always irritating to have someone else suggest that we are not capable of some task or other, and when it comes to something as fundamental as taking care of ourselves independently, the idea that we are no longer up to the job (or that our nearest and dearest suspect that we aren't) must be upsetting.

The same problems sets in with the recent suggestion from the Alzheimer's Society that everyone over the age of 75 should be screened for dementia. I can imagine many people I know who have reached that birthday, studiously avoiding trips to the GP, in case they find themselves assessed, found wanting, and whisked off into a nursing home, willy-nilly. Not to mention the fact that there is no absolute test for dementia, and as the husband of a much loved and highly idiosyncratic relative who died with the condition not long ago, said of her: “How on earth would they tell?" For behaviour that might seem eccentric in some individuals may perhaps be entirely normal for others, and only people who know them really well could pinpoint the subtle differences that indicate the onset of disease.

So perhaps we should be focusing instead on the fact that the majority of us can actually manage what matters most to us within the context of our own familiar home, with some support. There is an increasing range of such support, from high-tech monitors that raise the alarm if we stop visiting the bathroom or preparing meals, to low-tech phonecalls with operators who are trained to elicit any problems in the course of a friendly chat. If we don't care to cook our own meals any more, we can order a gourmet menu from one of several home delivery services. And even when we struggle to wash or dress ourselves, such help can be ours in our own home, rather than elsewhere.

I appreciate that there is a cost associated with all these services, and Local Authorities now with few exceptions fund only the most critical care needs. Nevertheless, supporting people to live independently in their own homes must be less costly than funding them in residential care,  and councils who take a holistic view of their services should realise that investing in support for independent living will save money in the longer term.

Does the Census breach the Equality Act?

Last week, an Independent Living site visitor contacted us about the Census, which we are all required to fill in later this month. Forms have started arriving in people's homes now, so we have a chance to see what questions are being asked, what matters to the people who have spent the past 10 years consulting and planning this operation, and who appear in various media, justifying the huge expense, by explaining how important the data is to local and national government, third sector and commercial organisations, so that they can plan all the services and facilities we are going to need in the future.

Our correspondent highlighted the fact that there is no provision on the form for collecting information about wheelchair users. I found this quite surprising, given that so much time and thought has gone into drawing up the questionnaire, and apart from anything else, the news has been very full for the last few months of stories about budget cuts and welfare reform that have a direct impact on people with disabilities and mobility problems. The proposal (currently deferred) to remove the higher rate mobility element of the Disability Living Allowance (DLA) for people living in residential care, being just one example.

The relevant parts of the Census form are questions H14 and 41, which refer to household transport and personal transport to places of work, and make mention only of cars and vans. The term "vehicles" is not used at all, so that personal mobility vehicles,  i.e. wheelchairs (manual or electric) and scooters, cannot be accounted for.

Many people don't realise that the vehicle Classes 1, 2 and 3 are wheelchairs: Class 1 being manual wheelchairs, Class 2 non road-going electric wheelchairs, and Class 3 relating to power chairs that can be used on the road, and which require a free road fund licence.

Does it not seem extraordinary, when we have had disability discrimination legislation on the books since 1996, that the Office for National Statistics, which is  the government's largest provider of statistics, with an annual budget last year of £213 million and some 3400 staff, has apparently failed to account for the future needs of wheelchair users in an operation that was carefully planned over the last decade?

Indeed, could it be that the Census is in breach of the Equality Act 2010, if information about wheelchair users is not included? It means in effect that the needs of people with disabilities are not able to be considered in the same way as those of non-disabled people, when those future services are commissioned – simply because the data has not been collected.

If you are concerned about this, you can phone the census helpline on 0300 0201 101 or text relay for people with hearing problems, 18001 0300 0201 160.

Perhaps some consultation should have gone on earlier, since it is now far too late for the Census forms to be rewritten and distributed, but at the very least we can ask some questions about just why the needs of people who use wheelchairs are being excluded from planning for our future.

OFT Market Study into Mobility Aids

The Office Of Fair Trading (OFT) has launched its investigation into the way that various mobility and daily living aids are sold. Their study will look at wheelchairs, scooters, stairlifts, bath aids, hoists, profiling beds and specialist seating.

Many of us have expressed concern over the years about some businesses operating in this area, and some dubious practices, from high-pressure selling techniques to exorbitant pricing, and equally concerning, companies with no experience of the special needs market selling specialist products to individuals without being able to give appropriate advice.

The OFT is concentrating on three main questions: can consumers access the right information so that they can purchase the right mobility aid for them; are suppliers treating consumers fairly; is competition in the wheelchair sector working well? These elements formed the bulk of responses to the organisation's consultation, with concern expressed that it is difficult to make an informed decision when purchasing a mobility aid, and that wheelchair sales in particular might not be as competitive  as they should be, because of the structure of the market, and purchasing decisions made by public bodies.

Ann Pope, OFT Senior Director of Goods, said: "Mobility aids are important products for elderly and disabled people, which can significantly improve the quality of their lives. For many, they are an absolute necessity. Consultation with the industry, consumer groups and others has supported our initial view that there are consumer and competition issues in this sector that need examining to see if outcomes for consumers can be improved."

Independent Living has been operating for well over a decade now, providing impartial information to help people make the right choice of mobility aids. During this time, we have seen supermarkets, with no knowledge of how to assess a person's needs, stocking items like rollators, which need to be chosen with care. Equally, we have seen some Disabled Living Centres, which used to provide unbiased advice on a range of options, move into selling aids themselves, thereby removing a rare facility to try out different products without commercial pressures. We hear stories most weeks of individuals who have bought unsuitable products, either because they have come across a website which seems to be selling cheaply, or because an over-enthusiastic salesperson has persuaded them that they really need whatever it is he or she is trying to sell.

Good, caring service is available, from very many excellent suppliers – often, commercial organisations are doing a better job of giving impartial advice than the people you would expect to be giving it. Reputable companies would prefer not to make a sale than to sell something inappropriately: and in the long term, that attitude pays dividends, as consumers learn that they can trust you to have their interests at heart. But most people approach the buying of a mobility aid as complete novices; it is not, after all, something that is needed on a regular basis, unless you have a long-term disability, or are caring for someone in that situation. How does a newbie tell the difference between good, honest suppliers and the other sort? It isn't always easy, and sadly, membership of trade organisations doesn't always guarantee the highest standards, as a Which? investigation a few years ago demonstrated: the only company – out of the 11 investigated – which they ranked as "good", was not a member of the BHTA, whereas all those that received a ranking of just "OK", according to the BHTA's own code of  conduct, were members…

The OFT report will be published in September, and we will certainly keep you up-to-date with its findings. Meanwhile, you can add your opinion and experiences to the debate, by commenting below!

Related articles

• Supermarkets Selling Mobility and Daily Living Aids (independentlivingblog.co.uk)
• DLCs - Impartial Advisers or Mobility Retailers? (independentlivingblog.co.uk)
• Newsletter January 2011 (newsletter.independentliving.co.uk)

Remploy – Employment Options Narrowing for Workers with Disabilities

Today's blog is all about employment – plenty of budget cuts will translate directly into redundancies, and inevitably, people with disabilities are likely to be affected by this, at least as much if not more than the general working population.

For example, it was announced in the last few days that Remploy, which has more than 50 factories employing 3000 mainly disabled people, will be encouraged to offer voluntary redundancy to staff, in a bid to save money. At first sight, it seems harsh to close off an employment option for a group of people who  often find it more difficult to get a job, and one of my correspondents also pointed out that local government is buying in from China many of the products that are being manufactured by Remploy, and perhaps it would make more sense to support local jobs and local suppliers.

However, if you look at the numbers, they make depressing reading. It is estimated that each Remploy factory job costs £25,000 in government subsidy. Half of the people employed are being paid to do nothing, because the management has failed to win enough contracts to keep them occupied. Despite receiving £555 million of support,  Britain's largest nationalised manufacturer cannot, apparently, operate profitably.

There are plenty of different arguments to be had here. For example, Remploy may not be very good at manufacturing or selling, but they do have an excellent record in supporting people into work with other employers. 24,000 people have found jobs with their help, and they have added 38,000 vacancies during the past financial year. There is a strong case for nurturing this activity, rather than putting more money into the factories.

Equally, many people feel strongly that mainstream businesses should be employing more people with disabilities; that a great deal of talent and enthusiasm which should be helping Britain out of our financial mess is being lost because, despite many years of equal opportunities legislation, it is still more difficult to find a job if you have a disability. The rider to this argument is that Remploy factories are not providing proper jobs but a sort of day care, which is not only expensive, but rather demeaning to their employees. There isn't much that can beat the satisfaction that comes from doing a job that is worth doing, while turning up for work but not having anything much to do is soul-destroying.

On the other side, at a time when the public sector is cutting jobs, and many are beginning to question the oft-repeated assertion that the private sector will pick up the slack, pulling the rug out from under a significant employer, even if imperfect, is not helpful, and indeed sends out the wrong message when the focus of benefit reform is very much on getting people back into work. If major purchasers (local authorities, housing associations, the NHS) of the products made in their factories, from building products to mobility aids, placed contracts with them, then they would be securing jobs, supporting British industry, reducing environmental impact by buying local, and giving a vote of confidence to an organisation that must be feeling beleaguered. The government is looking increasingly heartless, as deficit reduction is pursued apparently no matter what the cost in human terms: this could be an opportunity to change that perception.

No easy answers, I fear. Should we be maintaining jobs at Remploy at any price? Or is it better to allow this business to succeed or fail by its own efforts, without regard to social implications? Is a Remploy factory an employment ghetto or a valuable source of jobs for people who would otherwise struggle to find one? You can share your opinion by adding a comment here.

My Family - disability benefits travesty

I watched the latest episode of My Family last night, the one where Ben is mistakenly paid disability benefits; an error he begins by trying to rectify, but ends up enthusiastically colluding with, as more help comes his way, culminating with a highly covetable disabled parking badge.

I didn't know whether to laugh or cry – there were lots of genuinely funny moments, particularly around notions of PC vocabulary. “I am not disabled” protests Ben, to which the social worker assessing his needs immediately agrees, assuring him that “we never use that word either”.

Harder to laugh as within the space of 24 hours, he was assessed for and provided with a power chair and a whole range of equipment to adapt his home. Anyone who has been through the process of applying for a needs assessment, and then waiting for necessary adaptations to materialise, will no doubt have cracked a wry smile at that one. Power chairs are not exactly lavished on hopeful recipients, either.

I must confess that, despite the laughs along the way, my final thought was that a lot of people who haven't had personal experience of disability and the support that may or may not be available would assume that a mobility problem was the ticket to generous financial and practical support, and a source of nice perks, which the rest of the population has to do without.

I hope I'm wrong, especially at a time when everyone is casting about for ways to save taxpayers' money, and disability benefits have been highlighted as one of the key areas to try and make savings. We've already seen the ILF (who support independent living for people with serious disabilities) run out of money, and while I am entirely in favour of as many individuals as possible being encouraged/supported into work and away from dependence on benefits, hacking away at the fragile structures currently depended on by some of the most vulnerable in society doesn't seem like a positive step forwards.

What do you think? I'd love to hear your comments and ideas – about the future of disability benefits generally, or this distorted portrayal of the situation in particular.

Can we be good neighbours without interfering in other peoples' lives?

Mostly, I worry about the increasing erosion of our privacy, as the government builds its databases and deploys its CCTV cameras, but a story I heard recently made me look again at the flip side of this debate.

One of our most recent site subscribers, Angelus, tried to alert both a relevant charity and local social services about an elderly man, living alone in worryingly primitive conditions. They were told that no one would intervene, as this would be interfering with his right to live as he chose. Neighbours continued to worry about him, and after a period of months they reached a situation where emergency services had to be involved: police broke down his front door to find him collapsed from hypothermia, with neither heating, hot water, nor means to make a hot meal or drink.

This story - unlike some other, similar ones - has a happy ending: after a spell in hospital (during which social services cleaned up and made habitable his house) this man is now back at home, with the crucial addition of some support in the form of a daily phone call from Angelus, to have a chat and make sure he is ok, and regular visits from social services.

So where do we draw the line? I certainly don't want anyone else telling me how I should live my life, but I would like to think that, if my neighbours were that worried about me, someone would feel emboldened to take action some time before I was an emergency case. There must be many people who live alone and have no idea what services might be there to help them keep their independence, or how to access them. Perhaps this is part of what the Conservatives have in mind with their Big Society idea; certainly, it would be nice to think that neighbourliness might become a virtue again, rather than a synonym for nosiness.

What do you think? Add your comments and share your ideas with other readers!

DLF: Yet another source of independent advice compromised?

At the end of last year, I wrote here about the shocking number of DLCs that had quietly changed their function from provision of independent advice about aids to mobility and daily living, to selling products themselves. The article had a great response, just a fraction of which was added in the form of comments on the blog. Many people working within the organisations phoned or e-mailed to agree with my concerns, but were too afraid of the consequences to make their comments publicly. I also received a number of calls from managers of DLCs who had moved over to selling, justifying their reasons - but again, nobody ready to do so in public.

Although the DLF (Disabled Living Foundation) did not send a reply to my request for information about their activities, it does state very clearly on their website that they don't sell any products, so that seemed unambiguous.

But perhaps I was being naive in adding them to the side of the angels, so to speak. While it is true that the organisation does not sell products, what they do sell is high value sponsorship packages, or advertisements, which enable suppliers with the biggest promotional budgets to ensure that their products are advantageously represented alongside the impartial advice.

The suppliers who support the DLF in this way are all excellent companies with fine products - but there are other good businesses out there, with equally useful products, which are perhaps not so easy to find on the DLF site because, not surprisingly, the commercial sponsors' products seem to be listed first. Times are hard for everybody, and you can understand the DLF giving preference to the businesses that support them, but they really can't claim to provide impartial information when for example, all the variable height profiling beds featured by the side of that advice come from one supplier. Add to the impression given by the website the fact that DLF Factsheets (independent downloadable advice on buying equipment) also carry advertisements from a single supplier of the equipment described, and the notion of impartiality takes a very heavy hit.

Do please let me know what you think: I believe that the most important people here are the individuals who need specialist equipment and depend on organisations which they trust to provide information and guidance in an impartial way. As soon as the lines are blurred between commercial operations and those which claim to be non-commercial, it is the clients who lose out.

That the products promoted are good products is not the point: people are being led to believe that these are the best, or possibly even the only, option, when this is not necessarily the case.

Add your comments here - you can post anonymously, if you prefer, but please don't waste this opportunity to have your thoughts heard.

DLCs - Impartial Advisers or Mobility Retailers?

It is now 10 years that the Independent Living website has been here, providing impartial information for carers and disabled or elderly individuals looking for equipment and services to help them manage more independently.

Perhaps not surprisingly, site visitors have sometimes confused us with the local organisations which are generally known as an Independent Living Centre or Disabled Living Centre. Given the similarity of the names, it is an understandable mistake, and to be honest, considering ourselves all to be in the same business of providing information without strings, we have not chafed at the confusion, and have often directed enquirers to their nearest DLC, as the place where they could try out a range of equipment without any commercial pressure.

Sadly, this fundamental fact about ILCs or DLCs is not a fact.

Depending on which centre you visit, you may indeed find that you can view a range of equipment, and perhaps try it out, or you may find that you are in a mobility retailer.

Without any apparent debate, it seems that a number of DLCs have turned themselves into shops. I find this difficult to understand on a number of levels. First, and most significantly, the entire raison d'être for an independent advice centre is to provide independent advice. As soon as the people giving the advice are also selling products, it is no longer independent. Individuals visiting a DLC are doing so almost always because they don't know the options available, and they should be able to expect a fair overview of the market, rather than a nudge towards whichever products the centre manager has for sale, regardless of their suitability.

However well-intentioned the staff at a centre where products are sold, they cannot possibly be fulfilling the brief to give impartial advice: they may well say that there is no pressure on people to buy, and that if the visitor is not happy with what they have for sale, they refer them to other stockists, but that is not the point. Inevitably, a person who is not familiar with mobility aids will be swayed by the selection that has already been made by the expert they are consulting. It may not even occur to them to ask about other possibilities.

My second concern is that Independent Living Centres often have charitable status - they are certainly all grouped under an umbrella organisation, Assist UK, which is a charity. I have written here before about charities that muddy the waters between themselves and commercial operators - Is Charity Just Another Big Business? - and I fear that this may be another example of enterprises that should be at one remove from commercial activities, getting involved regardless.

Having sought feedback across the network, the responses I have received underline the confusion. They range from what I would have thought defined an ILC:

"... in general all centres offer impartial advice so don't retail, all centres have a good range of equipment for people to try and most employ an occupational therapist." Swindon ILC

and "We do not sell anything, but our clients are given advice about how to proceed and also given information about manufacturers and retailers." The William Merritt Disabled Living Centre (Leeds)

To "a range of daily living and mobility aids for people to 'try and buy'....We are currently in the process of expanding our service, so much more will be available in the coming months." Inspire Community Trust, Kent

and "We do have some products in stock to sell, if not we are usually able to get them in with in 2 days." Disability Equipment Bradford

A look at the Disabled Living Foundation (the London DLC) website makes it absolutely clear that they don't sell any products, yet I understand that Manchester, one of the largest in the country, is well advanced with plans to integrate a retail and online shopping facility into their advice centre.

My researches suggest that perhaps twice as many don't sell as do; it is certainly not yet universal, and indeed there seems to be concern in some more traditional centres at the idea of getting involved in sales.

Surely this debate should have been conducted in an open fashion, rather than allowing commercialisation to creep up on what were centres of excellent, impartial advice, in a backdoor way. If you went to your local Citizens Advice Bureau, and they offered to sell you the services of a debt consolidation company, how would you feel? Would you still trust them to give you the best advice without commercial consideration, or would it seem that they had lost their special, trustworthy status?

There are many people working in this field who don't want Independent Living Centres turned into mobility shops - there are plenty of those around already. Despite the steps that have already been taken along this path, it isn't too late at least to ask the question, and challenge all those people involved to let us know why the ethos of DLCs has been changed in this way.

Do please add your comments to the discussion - just click the comment button, and if you prefer to remain anonymous, you can!

Better Dead than Disabled?

I have just read a shocking survey, commissioned by Disaboom, which suggests that more than half of Americans would rather die than live with a serious disability.

The research also showed that more affluent and more educated people were more likely to choose death over disability than those with lower incomes and poorer standards of education.

What on earth does this say about the United States? What would the results of a similar survey in Britain show? There may be very few but a militant minority who would actually choose disability rather than life without an impairment, but death rather than life? When we are surrounded by so many examples of people living fantastic, fulfilling lives despite serious disabilities?

I may not agree with their current political leadership, or their attitude to other countries' ability to manage their own internal affairs, but I have always thought of Americans as the ultimate "can-do" citizens. These are the people who believe in selling or spending their way out of economic downturns; who pity us poor Brits for failing to capitalise on our wonderful inventions; the home of the superhero, where any achievements are hailed with admiration, rather than envy or embarrassment.

So why are so many of them apparently ready to wimp out when it comes to dealing with disability? Is this a reflection of their inadequate public healthcare system, a general ignorance of the possibilities of independent living, or something else altogether?

What do you think? If you are affected by disability, please add your comments here - anonymously if you prefer - and we can compare our entirely unscientific survey of Independent Living visitors with our cousins across the water!

In Sickness and in Health

I spend rather more time reading and listening to the radio these days, as my arms remain determined to pursue their status as redundant appendages, rather than reliable tools. I continue as editor of this website, using iListen, voice recognition software, which despite hiccups along the way, as we learned to accommodate each other's foibles, has now become an indispensable part of my working life. Although still not 100 percent reliable, the fact that it can make possible a job that formerly required hours of keyboard and mouse use, is a testament to the progress that has been made in this area.

And when I heard Alan Johnson, the health secretary, announcing that in future doctors should be issuing well notes, rather than sick notes, to encourage employers and employees alike to think about what people could do, rather than what they couldn't, my own situation seemed to provide an interesting illustration.

Almost certainly, if I had an employer, they would have stopped me working many months ago, when overuse of the computer first made my hands and arms too painful to continue. Rest is always the first prescribed treatment for repetitive strain injuries, and - perhaps also with an eye on some very large tribunal awards for work-related disabilities - responsible employers take no chances with the long-term well-being of their people.

But not having an employer, I don't have anyone telling me I mustn't work. Independent Living is my passion, and I'm not about to relinquish it.

So, rather as the government minister is recommending that occupational therapists should be assessing how much and what type of work someone can do when they have been ill, I have run a uniquely qualified eye over my own situation, and acquired the necessary tools to help me keep working. I am not as productive as I used to be - but given that high productivity almost certainly contributed to the problem, maybe that isn't so bad. And most importantly, instead of adding mental health problems of stress and depression to my woes, I do wake up most mornings, focused on what I can do, rather than what I can't.

Fall Prevention - priorities

"Fall prevention" is a subject that has exercised both the NHS and the government considerably in recent years. The National Service Framework for Older People includes prevention of falls as one of its "Standards", and health authorities around the country have been scrambling to develop Fall Prevention Strategies that demonstrate their focus on the problem.

Depending on whose figures you read, somewhere between a third and half of people over 65 suffer a fall in any given year, and the cost to the NHS of treating these fractures is very nearly £1 billion.

Preventing falls is clearly something that is well worth spending resources on, in financial terms alone, never mind the human costs of pain, lowered self-confidence, loss of mobility and independence.

And yet, all this high-powered attention has largely failed. The major effort has gone into osteoporosis screening and subsequent drug therapy for those identified as "at risk". Osteoporosis is a horrible condition, and there is no doubt that people whose vulnerability to it has been recognised will be grateful for the intervention. But the strategy has at least two weaknesses. Firstly, the test itself, which assesses bone mineral density (BMD), is not reliable, frequently either under- or over-estimating the condition, and therefore encouraging doctors to prescribe drug therapy for the wrong people. And secondly, the drugs - bisphosphonates- are quite expensive if over-prescribed. It has been calculated, for example, that the cost of preventing one hip fracture - the result of medicating 577 post-menopausal women for 12 months - is £120,000.

How does taking bisphosphonates stop you falling? The answer, of course, is that it doesn't. What it should do, is help to build up bone strength, so that the individual is less likely to suffer a fracture if they do fall. But as a means of preventing falls, it can have no value - and given that 80% of falls occur amongst people who don't have osteoporosis anyway, perhaps we should not be surprised that the overall strategy is not delivering the hoped-for results.

The real causes of falls are many, and can be complex. Certain illnesses, such as Parkinson's and Alzheimer's, bring an increased risk, as do some medications, notably antidepressants and diuretics, both of which are widely used in the most vulnerable age-group. Equally, there are many falls which could be avoided with a combination of exercise and commonsense. Exercise - and specifically gait-training - to improve strength, confidence and balance. Commonsense, to ensure that we remove hazards around the home (where most falls occur), such as rumpled rugs, trailing electrical flexes and general household clutter left in hallways.

Perhaps PCTs would do better to devote more of their resources to training their patients in how to keep themselves safe from falls, starting with those people most at risk due to medical conditions and medication regimes. Then we might see a real decline in the number of older people who lose their ability to live independently as the result of an accident.

You can read our guide to preventing and coping with falls here: Independent Living - fall prevention