Bariatric Care Costs Ballooning

One of the areas of Independent Living that receives plenty of visitors and generates lots of enquiries is the bariatric section. For anyone who isn't au fait with the professional jargon, bariatric is the term used to describe products and services designed for the heaviest of people; those who might be described as morbidly obese.

Any caring procedure that is needed comes with a lot of extra challenges when the person being cared for tips the scales at somewhere over 20 stone, and providing the NHS, social services and other organisations with equipment to meet these needs is definitely a burgeoning industry. As I see safe working loads on hoists, beds, wheelchairs and other essential items heading upwards – 30 stone, 40 stone, even 50, the initial impact of the figures inevitably wears off. From being shocked, initially, asking myself "How can anyone possibly weigh that much?", I fairly quickly graduated onto thinking something along the lines of "Only 25 stone? Should I even be including that in the bariatric section?".

So it was quite instructive to have an insight into the miserable and expensive life of the Londoner who, at 58 stone, is currently Heaviest Man in the World. He is British, as was another recent holder of that title. His existence is miserable because his weight makes him entirely dependent and confines him to his bed. It is expensive because every procedure that has to be carried out to keep him alive and as comfortable as possible (which cannot possibly be very) requires teams of people. Four carers at a time to wash him and monitor his health; an extraordinary eight paramedics required for any trip in an ambulance – specially reinforced, of course. Apart from all that professional input, he relies on his sisters to care for him, and admits to spending all day eating.

Leaving aside the interesting question of why anyone who was caring for someone else with a serious and chronic health problem would provide them with the wherewithal to make themselves ever more ill, it does cause one to think about the allocation of resources, and how to prioritise them. I am very wary of joining the ranks of the "virtue police", advocating denial of treatment to smokers, drinkers, eaters of too many cream cakes or chips, but when you hear that 800,000 of the 2 million people who need care aren't getting any, because of cuts (Age UK research), you really do wonder about the justice of providing so much for someone who is very much the author of his own misfortune.

You might also think about the fact that anything up to 40% of older people are malnourished when admitted to hospital or residential care, and more become so during their stay, and ask yourself whether resources couldn't be better spent on helping those who aren't able to feed themselves properly. Incidentally, for all the expense to the NHS of looking after bariatric patients, it costs the organisation nearly four times as much dealing with the consequences of malnutrition. Some properly joined up social care could be saving us all a lot of money.



 

Carers get Respect, but no Respite

One theme that unites politicians both national and local is respect and admiration for the work undertaken by the army of carers who look after partners, friends or family members whose ability to live independently has been undermined by illness or frailty.

And yet, there is a strange reluctance to provide the support necessary to enable these people to continue in their demanding roles. For example, nine out of ten Primary Care Trusts (PCTs) have not committed to using government-allocated funding to support carers: although an extra £400 million has been provided for respite care breaks for the four years up to 2015, the money is not ring-fenced, meaning that PCTs are not obliged to spend it in this way. Given the current squeeze on budgets, it is not terribly surprising that funds are applied like sticking plasters to the most acute situations (or perhaps those where demand is most vocal). More than a third of Trusts have said that they don't plan to change their existing arrangements for carer support, despite the extra funding.

The shortsightedness of this tactic is obvious to anyone who gives it a little thought. Caring is a 24/7 commitment, which often involves loss of employment and social life. Informal carers are estimated to save £119 billion a year which would otherwise be a charge on the NHS and social services, to provide the care they offer for free. But nobody can endure being on call and responsible all the time without it taking a toll on their own health. A modest amount of money invested in the well-being of carers by providing regular breaks and support so that they can take a few hours for themselves, will keep this six million-strong army of volunteers functioning. The alternative is crisis management, as emergency arrangements have to be implemented - at greater cost - when a carer reaches breaking point, and can no longer continue.

Great credit, therefore, to GPs in West Cumbria, who are spearheading a £500,000 project to provide support for the estimated 17,000 carers in Allerdale and Copeland. The money, from NHS Cumbria, will pay for a dedicated support worker, as well as respite breaks, sitting services and help with domestic chores.

Dr Fayyaz Chaudhri, lead GP for Allerdale, said: "Caring for someone can be extremely rewarding, but also very difficult. Many people may feel unable to take time out for themselves to either complete daily chores, or simply to have some personal time. By agreeing this package of measures we hope that we will be able to support these people further to access extra support or peace of mind in an emergency."

Sunderland PCT is another beacon of good practice, with £630,000 invested in support services, after working with Sunderland Carers' Centre.

Worryingly, although the great majority of PCTs say they are working closely with carers organisations to develop their plans, in almost half of cases, the organisations themselves do not believe that their local PCTs have engaged with them at all.

If the two sides aren't even in agreement about whether or not they are talking to each other, it's difficult to see how any serious progress can be made.

Lamenting our Increased Longevity

Over the weekend, I read yet another story about the terrible situation faced by 100,000 people who are living in care homes where basic standards are not being met.

I decided to write about that, but no sooner had I started to compose in my head, than the interim results of the enquiry into standards of care at home came my way, and, surprise surprise, the situation is just as grim.

If you are too old and frail, or too disabled, to manage your life without help, the choices for many appear to be no choice at all. Whether in a care home or your own home, you may well find yourself expected to eat meals and go to bed at ridiculous times to suit the working rotas of care staff. At home, you may be left for hours in bed, not knowing when the next carer will arrive, or who it will be. You may have to choose between being washed or being fed, because there isn't time to do both in the allotted few minutes that social services is prepared to pay for.

You may think that if you are in residential care, at least you won't feel lonely – but with staff under pressure to get round the jobs they have to do, who has time for a chat? If all the residents are lined up in front of a blaring television all day, because no one has time to arrange the stimulating activities that could make days pass more pleasantly, what chance of making friends and exchanging views?

As local authority budgets are squeezed harder and harder, I have watched the "social care" needs that can be financed reduced to a bare minimum, and the amount of time that carers are given to carry out the necessary tasks squeezed into ever smaller chunks. One of the regular complaints from family carers is that the care staff who come in to help them arrive late and leave early, as they rush to their next assignment. And the distinction between healthcare and social care looks increasingly redundant, as lack of attention to the latter inevitably has a negative impact on an individual's health and well-being.

We surely can't just carry on wringing our hands over this. It is a complete disgrace that the most vulnerable people in society are carrying so much of the burden of repairing the black hole in our national finances. As one of the generation directly affected by the imminent increase in retirement age, I can only say that I am delighted to work a couple of years longer – or more – if the money saved by postponing my pension goes to restoring some dignity and respect to those who have to depend on others for their daily care.

What do you think? Do please contribute your ideas here: there must be a better alternative, or we should be lamenting our increased longevity, rather than celebrating it.

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.

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.

Can the Big Society Overcome Human Nature?

Over the last week or so, a couple of stories have come together, to get me thinking about our relations with each other, generally.

First, I read a thought-provoking article by Angela Gifford, in which she laments the way in which people who receive care in their own homes find that even if they are conscientiously cared for, the carers won't do anything that isn't on the plan, however obviously it needs doing. For example, no one would leave a vase of dead flowers on the table in their own home, yet most care workers – even if they have a few minutes to spare – won't think to throw them away, or to wipe up some spilt tea on the tabletop, or even put clingfilm over the sandwiches they have made for lunch, so that they will still be palatable when they are eaten four hours later. None of these tasks are included on the care plan, so they don't get done.

Then, there is the ongoing debate about "trolls", who lurk around social networking sites, forums and bulletin boards, anonymously posting vicious comments about people they dislike or disagree with. It seems that nobody is safe from the attentions of these individuals, who can, astonishingly, come up with nasty things to say about people who are ill; who have committed suicide; who are accident victims. The mindset that allows one to attack in circumstances where compassion is surely the only reasonable reaction, is quite chilling.

And in their different ways, these two examples seem to me symptomatic of the same problem: an inability to empathise with others, to "put yourself in their shoes" and imagine how you would feel if the positions were reversed. We are, of course, looking at opposite ends of a spectrum: the visiting carer is guilty of nothing more than thoughtlessness, whereas one must assume that anyone spreading hate on the internet intends their words to wound, and presumably derives some satisfaction from the knowledge that they are hurting others.

Though interestingly, when Sports Illustrated's Jeff Pearlman decided that he was fed up with anonymous cyber abuse, and tracked down and confronted some of the people who had been posting nasty comments about him, he received apologies, expressions of shame and guilt.  One person said he hadn't meant to hurt Pearlman, but "the internet got the best of me".

So perhaps the two types of behaviour are not so far apart after all: maybe cyber bullies do feel remorse when faced with the consequences of their actions, and it is simply the fact that the medium protects them, by conferring anonymity, that enables them to carry on doing what they do without thought.

I hope that is the case, because the one thing we all need, if the Big Society is going to hold us together and ensure care for those of us who are most vulnerable, is a powerful ability to see others as people just like us, and to provide for them the compassion and support that we hope will come our way when we need it in our turn.

MPs or Carers, Who Needs the Money?

Apparently, today is the sickest of the year – the one when more people take a day off than any other. Seasonal bugs, bills, grey February weather, they all play a part in driving us under the duvet rather than out into the world on a chilly Monday.

What pushed me out of bed and in front of my computer today was an urge to write about the contrasting situations of MPs and many family carers. The media in recent days has been full of stories about the hardships faced by MPs running out of money because their expense claims were being processed too slowly. They were indignant – those few who were brave enough to speak out in the face of general public opprobrium for their species – about having to wait for expenditure to be reimbursed, and suggested that this was making life impossible for MPs who didn't come from a wealthy background.

I really want to see the House of Commons filled with people from all walks of life who are dedicated to representing their constituents and making life in the UK better and fairer for us all. But it seems a bit rich for people clearing some £3500 a month to find it an unwarrantable hardship that they must wait a while to have expense claims verified and reimbursed. A step that would have been unnecessary without the unprincipled behaviour of a significant number of MPs. And I would like to acknowledge here the commitment expressed recently by the Leader of the House to adhere to the principles of transparency and independence in dealing with expenses.

Nevertheless, out here in the real world, many of us use credit cards and overdraft facilities to help us manage the gaps in our cash flow, and I can't believe that MPs lack the financial acumen to make similar arrangements.

It just seems like breathtaking selfishness that they should be complaining so vociferously about their own problems when at the same time insisting that we must all share the pain of reducing the national deficit, and making very little fuss when local councils cut desperately needed services to family carers and disabled individuals.

Carer's Allowance works out at something like 10p an hour, and of course you need to be under state retirement age to receive it: if anyone can explain the logic or fairness of that, I would be interested to hear. Individuals with severely impaired mobility are having their mobility allowance withdrawn if they live in a care home. For many, this will mean being confined to their care home. The ILF has been closed down, respite care is being curtailed, care packages squeezed to the absolute minimum councils can get away with. Disability benefits are being reformed with an emphasis on reducing the number of people who are eligible for them.

Most people agree that the welfare system needs reforming, but surely reform should make it better for the people who really need it; easier to navigate; more equitable in its application. At present,  you would be forgiven for thinking that the changes were being made with the very opposite aim.

Related articles

• Which Political Party Will Look After Carers? (independentlivingblog.co.uk)
• £1.35m invested by Government to support carers (telegraph.co.uk)

Sling Safety – Whose Interests First?

An interesting enquiry came into our postbag last month, from a volunteer Nursing Home visitor who was concerned to see that residents in the dementia unit she visited seemed to be sitting on hoist slings draped over their chairs for long periods of time, and wondered whether this was acceptable. I responded that some slings were intended to remain under the user for periods of time, and that for some patients, the pain and distress of transfers was such that remaining on the sling rather than being lifted off it might be the lesser evil. I suggested that she find out from the home management what the rationale behind the decision was, so that she could be sure that the best interests of the residents was being put first, and I also offered to forward her enquiry to industry experts who could give her a more detailed response.

To be honest, I was not expecting to hear more on the subject, but then this was my first communication with Jill Leslie, who has turned out to be not only deeply concerned about the well-being of a group of people who are often not able to protect their own interests effectively, but also an uncommonly energetic investigator!

It transpired that residents were sitting on their slings since the occasion of a fatal hoisting accident, when one of them had fallen while being transferred, and subsequently died.

Social Services, together with the relevant sling supplier and manufacturer, and the community OT decided that rather than risk a further such incident, it would be safer to leave the slings in situ, for residents who required regular hoisting.

Jill's investigation into care industry/expert attitudes to this is published in the hoisting section on Independent Living, and makes interesting reading: Sling High – Sling Low

The clearest message to emerge is that there is no consensus on this subject. Some people would have a “zero tolerance" approach to leaving slings in place, while others point to technical developments in fabric to protect from pressure damage, allied with the distress occasioned by frequent transfers.

Everybody, of course, is in agreement that the interests of the patient must be paramount, but how to ensure this? In this particular Home, poor staff training and language difficulties were some of the factors, apparently, which made it safer to leave residents sitting on slings, rather than moving them. So perhaps more professional standards and greater value given to the work of carers would be a good place to start. But I fear that at a time when local authority budgets are under more pressure than ever, and even the biggest, most efficiently run care home operations find it hard to operate profitably, the idea of developing a cadre of well-trained, highly valued, professional staff will find few takers.

Meanwhile, the most vulnerable in society pay the price.

What you think? Several organisations contributed their opinions to Jill's report, and you can add your comments here, whether you are a supplier; working as a carer; someone who needs assistance to transfer from one place to another; or indeed a friend or relative of someone in this situation.

Volunteering to care

Back with the possibilities for the “big society" once again, and I was intrigued to hear about a system operating in Japan whereby people can earn credits to pay for their own future care needs by caring duties they carry out now for elderly and disabled individuals on a voluntary basis.

The government is apparently giving consideration to whether it could work in Britain, and on the face of it, there seem to be some benefits. The current situation with regard to providing services – particularly for those individuals living in their own homes, rather than in residential care – is patchy to say the least, with care workers who are employed by private organisations complaining that they are often not properly trained for the duties they are expected to carry out, poorly paid and ill-equipped. Last week's tragic accident in which a tetraplegic client's ventilator was switched off by an agency nurse is just the current, visible face of a much more pervasive problem.

So the idea of recruiting an army of willing volunteers, who will surely be well-motivated to do a good job, if only to invite positive karma for the time when they are dependent on someone else's ministrations, sounds like a good solution. But however willing, these volunteers are also going to need an investment of time and resources if they are to be properly equipped and trained to care adequately for people. All the goodwill in the world won't teach you how to transfer someone safely from their bed to a commode, or even something as apparently simple as helping them to drink without choking. So volunteers will certainly save the cost of wages, which is no minor consideration at this time of universal austerity, but they are not a cost-free alternative to paid care staff.

And I also can't help wondering what about the people who would love to volunteer, but simply don't have the time? When they get to be infirm and dependent on care from others, will they be looked at with disapproval because they haven't notched up credits to prove that they “gave" to society? If people feel pressured to do voluntary work after a full day in a demanding job, is it really voluntary? Surely we would be moving away from the fundamental principle of giving without looking for any return. And it would be ironic if the husband who dedicated his middle years to looking after his disabled wife or the daughter who juggled bringing up children with looking after a dependent parent, thus saving the NHS and social services significant sums of money, were somehow penalised when it comes to their own care needs because they were too busy to volunteer.

What do you think? A great way of getting people to feel a sense of responsibility for other, needier members of society, or a divisive wedge which, however well-intentioned, will label our future selves as deserving or non-deserving according to our individual circumstances at an earlier stage in our lives?

The Risks that Carers Run

A number of unrelated events have come together in the last couple of days to get me thinking about the risks that carers run when trying to move the person they care for.

Anybody who works in a job where they are lifting heavy weights receives manual handling training; the risks associated with the lifting are carefully assessed, and equipment is specified to minimise the possibility of injury to the lifter. Even so, musculoskeletal damage is common. Chatting to a friend who supplies stairclimbers (devices to carry a wheelchair user up and down stairs), I heard about the experience of a particular NHS Ambulance Trust who introduced powered stairclimbers and saw the rate of absenteeism due to musculoskeletal injury decline from 48% of the total to 6%, in an 18 month period. And this is amongst people who have had all the training designed to prevent them hurting themselves when lifting.

Another conversation with a long-term correspondent based in the US, who sells a cleverly designed lifting vest which makes manual transfers safer and more dignified for both parties, revolved around the costs of manufacturing in the States and labyrinthine systems of distribution in the UK, both of which tend to push the price of his product to a level where he feared it would be out of reach of potential customers. He said "For the life of me I could not understand why people would not pay to prevent back injuries to themselves and injuries to their loved ones."

To which the answer is probably they would, if they could afford it, or perhaps they would, if they understood both the risks and the alternatives. Which brings me back round to where I started. Organisations that employ people who are at risk of injuring themselves in the course of their work have a real financial incentive and legal requirement to measure and minimise the risks. But when it comes to family carers, who are estimated to save the NHS and social services some £87 billion a year on services that would otherwise have to be provided to the people they care for, who assesses and minimises their risks? Very occasionally, I hear about a manual handling training event aimed at non-professionals, but they are rare and not well-publicised.

Am I right to suspect that nobody wants to "find out" about carers running the risk of injuring themselves because they would then need to do something about it, and that would cost money? Even though keeping those carers fit and healthy is actually cheaper than replacing them when they are unable to carry on.

The final part of my injury/cost jigsaw was the story of former miners taking their former solicitors to court for not getting them full compensation for their inability to do various jobs around the house following damage to their hands caused by vibrating machinery. If a carer could point to some statutory body and demand recognition of damage to their health caused by caring, the risk assessors, equipment providers and manual handling trainers would be on the case in the next five minutes.

End of Life Choices

I have written here before about assisted suicide and choices around the end of life Assisted Dying – A Duty too Far and Better Dead Than Disabled and it seems that the subject just isn't going to go away until we have a proper debate about it, rather than skirting around the issue and allowing high-handed medics to take unilateral decisions by default.

Ironically, I suspect that many people who might instinctively support a classic British “fudge”, as a practical way of allowing commonsense to prevail in this complicated area, will have been jolted out of that viewpoint by the attitude of retired GP Howard Martin, who seems to have been worryingly sure of his own ability (and right) to assess the quality of an individual's life, and the amount of suffering they might be experiencing. Invoking “Christian compassion” as a justification for his actions adds another controversial ingredient to the toxic brew, given the often-quoted Christian regard for the sanctity of life.

Reactions from those most closely affected by his decisions - the relatives of his patients, for of course the patients themselves are no longer in a position to give their opinion - make the situation no clearer, ranging as they do from describing him as an “angel of mercy” to somebody “lacking in compassion... so arrogant, so cruel”.

It seems, as always, that there are no rules or yardsticks that can be universally applied to judge the quality of a life: what one person perceives as intolerable suffering may not appear so to another. Which brings us back round to an individual's right to decide for themselves when/if their life is no longer endurable, and to be helped to end it if they are not able to achieve this themselves. Like it or not, we are a consumer society and have grown accustomed to choice: in everything from education to health care, insurance to banking, we are encouraged to believe that there are multiple options for us – why should we not feel the same about the way in which we approach the final event of our lives?

One choice that is not as widely available as it should be is good palliative care: perhaps some people who think they should be helped to commit suicide would be less disposed to this solution if they were confident that their final days would be managed in a way that removed pain and respected their dignity. And we must never lose sight of the risk that a right to die might morph into a duty to die, when an individual starts to feel that they are becoming a burden (financial or emotional) for their family or friends. You might be interested to read about a new book that has just been published "End of Life – the Essential Guide to Caring" which looks at both the practical and emotional issues around dying and bereavement.

No easy answers, but I don't think that takes away our responsibility to discuss the options, and try to reach a consensus, rather than muddling along as before, and allowing the Howard Martins to make the decisions for us.

What do you think? You can share your ideas by leaving a comment here, anonymously if you prefer.

Which Political Party Will Look After Carers?

I was intent on maintaining an election-free zone here, but can't help noticing the ambivalent position of carers in this political race. The six million informal carers in Britain looking after family or friends who are frail, ill or disabled save the NHS and social services an estimated £87 billion, very often putting their own health and well-being in jeopardy through the demands of their caring responsibilities.

Gradually, in the last few years, the importance of carers has begun to be recognised, with social services obliged to make an assessment of the carer's needs, as well as the person they are caring for, and Carer's Allowance paying the royal sum of £53.90 a week to full-time carers, albeit at the cost of reducing other benefits and entitlements. With much fanfare, extra money was made available by the government to pay for respite breaks for carers - yet just last month, it was revealed that these funds were simply distributed to NHS trusts without ring-fencing, and perhaps predictably, most seems to have been spent on other things.

Carers have occasionally appeared in sharp focus in the election campaign, perhaps the most prominent example being Jonathan Bartley, the father of a young disabled boy, who confronted David Cameron with the painful and prolonged struggle his family had gone through to have their son's educational needs met as they wished - the underlying point being a mismatch between the political rhetoric and experience on the ground, as it were. Whilst much has been said about providing education for disabled children in the mainstream, rather than segregating them in special schools, the resources needed to achieve this (rather like the funding for those desirable respite breaks for carers) haven't materialised, leaving a situation where families feel cheated of what they have been told they can expect from the system, and only those with the most determination and resilience stand a chance of winning through.

I can just imagine how up for a battle with local bureaucracy you feel on top of being a full-time carer.

None of the main parties are saying much about carers: they all need them to carry on doing the awesome job they do, saving the vast amounts of money that would otherwise have to be found to replace them, I just wonder how their fragile support system will stand up to the cost savings that have to be made?

Care and Dishonesty - where have our morals gone?

I wonder whether you were as shocked as I was to hear about the latest research findings on the subject of dishonesty.

Our legal system - and indeed the functioning of our society in general - is based on the idea that reasonable and honest people share an understanding of what constitutes a dishonest act. So it is rather dispiriting to find that less than half of women, and even fewer men, think it is dishonest for a care home nurse to put pressure on an elderly patient to change their will in their favour. In fact, it was regarded as only marginally more dishonest than snapping the stalks off broccoli in the supermarket before weighing/paying. More than 80% of these same people think that
it IS dishonest to lie about your age on an internet dating site...

The fear of being frail and dependent is one that haunts many of us as we get older: thinking that a majority of the people you may be relying on for your day-to-day care believe that it's OK to manipulate you in this way is really scary.

Whatever happened to the caring and compassionate society that was supposed to come out of the global economic meltdown? It sounds more like "I'm all right, Jack, devil take the hindmost" - if I can mix my metaphors! Perhaps the people who responded to the survey will change their opinion when they are faced with choosing residential care for their own frail elderly parent (after all, it will then be their putative inheritance that is being redirected) or better yet, themselves.

Certainly, there is an increasing interest in services offering to vet or monitor carers on behalf of the client's family, reflecting the widespread suspicion that not all carers are as compassionate or as altruistic as we would like them to be.

What do you think? It feels as if every time you pick up a paper or turn on the radio there is another story about vulnerable people being let down or exploited in some way, yet at the same time we seem to be enmeshed in more and more legislation designed to prevent these things happening. While inspections involve being able to tick lots of boxes on a sheet, and most of us have such a shaky grasp of basic morality, it is perhaps not surprising that there is such a gap between the standards we allegedly aspire to and what is actually delivered.

Carers and Caring

September is rushing by at even more than its customary speed - after the more languid months of summer, everything seems to move up a gear at this time of year. One of the customary markers on the calendar for those of us with an interest in independent living is conspicuous by its absence this time round. I'm talking of course about the annual exhibition which shares our name, and has been held regularly at various London venues until the last event staged in 2006.

Whether this absence represents a hole in your diary or a welcome reprieve from what seems to be an ever increasing roster of exhibitions will depend on many factors. Personally, I have definitely been suffering from exhibition overload in the last few years, and this seems to be a feeling shared by many businesses in our industry, who find themselves trying to stretch their marketing budget around an increasing number of shows, which may or may not deliver the audience they are seeking.

Visitors also are expressing their interest in less stressful forms of research, with a growing enthusiasm for online, virtual events, where they can catch up with the latest news in the comfort of their own home or office, and at a time that suits them.

For Age Concern, last week was "silver surfer week" - a time to highlight increasing internet use by older people. The driver for this rush into new technology is, apparently, the desire to stay in touch with grandchildren who probably don't live nearby as they did in earlier generations. Internet, email and mobile phones are therefore essential tools. Whatever the reasons, the over-65s now spend more time on the web than the 18 - 24s, making products and services of interest to this group a real growth area.

Carers have been very much in the news recently - and there are perhaps a few small signs that they are moving up the political agenda as well. Such a large group of people, who are estimated to save the country as much money as the entire NHS budget - £87 billion - every year, certainly should be receiving rather more attention. Already, ten percent of the population is caring on an informal basis for a friend or family member who can't manage alone: as increasing numbers of us develop diseases such us Alzheimer's, this percentage is bound to grow.

Caring for each other, gladly and without expecting recompense, is an important part of the glue that holds society together: as we see it become increasingly fragmented and dysfunctional, it seems ever more vital to cherish those elements that still work. Even if it was affordable, can you imagine anything more soulless than a world where all care was delivered professionally and in an institutional setting?

Don't forget that we have an extensive area on the site dedicated to resources for carers

Please let us know if you come across any useful products or services that aren't yet included. And of course we always want to hear about your personal experiences, good or bad.

Please feel free to add your comments here.

World Alzheimer's Day - 21st September

As we approach World Alzheimer's Day, on the 21st September, it is sobering to think that dementia is now second only to heart disease as a cause of death in Great Britain. And yet £5.5 million is spent on Alzheimer's research in a year, compared to the £188 million spent annually on cancer - now nudged into third place in the league of killer diseases.

An estimated 800,000 people in Britain are currently suffering from dementia - and will eventually be killed by it. This is the illness that we most fear developing as we grow older, and yet NICE has decided that sufferers in the early stages of dementia should not receive treatments costing £2.50 a day which can slow down the development of symptoms. This decision was recently upheld by a judicial review, even though the drugs in question are widely available to sufferers in other parts of Europe.

Six million people in Britain currently act as informal carers for friends or relatives who are unable to live independently without support. Demographic changes are bound to have an impact, as longer lifespans bring a steady increase in the number of people suffering from age-related conditions such as Alzheimer's.

There are no cures, and so far, few effective treatments, a situation that can only improve slowly, if at all, while dementia remains the cinderella branch of medical research.

At the same time, there is a big question mark over the standard of care offered to sufferers. A survey last month suggested that nearly 60 percent of nurses would not report abuse of an elderly patient or care home resident, through fear of making an incorrect accusation or of reprisals. The same survey found that more than 10 percent of the nurses would not want one of their own relatives to be cared for in the institution where they work.

No wonder fear of finding ourselves increasingly frail and helpless as we get older is so prevalent!

So what can we do? First of all, on a personal level, we can make it less likely that we will develop dementia. Eating a healthy diet, high in fruit and vegetables and low in saturated fats, is a first step, along with giving up smoking and drinking alcohol moderately. There is good evidence that remaining physically active helps, as well as exercising mental faculties and maintaining social activities.

More money for research will depend on making dementia more compelling as a cause. Goodness knows, that should not be hard, given the statistics, but it is still the case that heart disease and cancer are the automatic choices of many when deciding where donations should be made. And as for the NHS - one articulate, high-profile cancer victim seems better able to influence spending decisions than an army of carers and dementia sufferers who tend to remain largely invisible.

We can make it clear to the government that more money needs to be spent on dementia care by supporting the campaigning organizations such as the Alzheimer's Society and Alzheimer Europe.

Politicians probably don't need reminding that older people are the most consistent voters: the party which pledges adequate resources to deal with a condition affecting one in 14 of the over-65s, one in six of the over-80s, is likely to see the benefits in the ballot box.