"Shadows in Wonderland"

I have been an avid reader for as long as I can remember, and even my day job, which involves trawling through articles, reports and media releases, many of them rather poorly written, has not killed my enthusiasm.

On the other hand, I probably wouldn't pick up a book about serious illness and hospitals if it hadn't come my way for review - but having started reading it, I found that I couldn't stop.

"Shadows in Wonderland" is written by Colin Ludlow and published by Hammersmith Press. It is his account of how he was found to be suffering from bowel cancer, his treatment at London's Royal Free Hospital, and how it all went terribly wrong. At the same time, it is a thoughtful analysis of the state of the health service in this country, how far apart are our expectations and the reality.

Colin Ludlow was a television producer before his illness, and his acute visual sense brings the hospital environment alive, in all its grimness. He makes the point, which had not occurred to me before, that our expectations of hospital are largely shaped by TV dramas, which condition us to expect a lot more action - and definite answers - than real-life medical treatment generally delivers.

His own experience, which he relates honestly and without self pity, is that medical interventions bring consequences, which may well be much worse than the patient imagines when starting their treatment. If we understood completely ahead of time, perhaps we would be much more reluctant collaborators in the process. So his initial surgery to remove a tumour in the bowel - a routine, albeit fairly major intervention - is followed by severe internal haemorrhaging, a dose of MRSA, and months of drip feeding, which sets off an unsurprising series of problems with his digestive system.

In reading this book, I learned that there is a word for illnesses caused by medics - iatrogenic - and also why it is necessary. The hospital environment itself, dreary, confusing and inadequately provided with simple facilities, such as comfortable waiting areas and natural light, is shown to be an obstacle to recovery. It is telling that the first time the writer finds himself in a hospital building which is bright, welcoming and restful, he realises that he is in a hospice wing for the terminally ill: you have to be dying before the NHS treats you like a human being.

"Shadows in Wonderland" is a compelling read, whether you are a healthcare professional or a "consumer" of the increasingly business-oriented NHS services. It clearly illustrates the fact that patients are more then just a set of medical conditions, and hospitals should be more than just a collection of facilities. Until we recognise this at the deepest level, treating the whole person in an environment that makes a positive contribution to wellness, the NHS is not likely to deliver the sort of results that we should aspire to as an affluent society in the 21st century.

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

Grasping the nettle of Incapacity Benefit

The government is planning to introduce a new test for incapacity benefit. Commentary from groups representing disabled people has been almost universally hostile, and there are no doubt very real fears that pressure may be put on vulnerable people to take a job when they are not really able to cope. People with mental health problems and certain conditions with symptoms of varying intensity are likely to be most affected.

Currently, some 2.64 million people receive incapacity benefit; a figure significantly augmented by unspoken government policy over the years to keep unemployment figures at a respectable level by encouraging greater take up of incapacity benefit. In areas where jobs are in short supply, it is not unknown for as many as one in five of the working age population to be in receipt of this benefit.

Clearly, this nettle had to be grasped, and the government has been promising to do so for some time. I find the principle of introducing a test that focuses on what an individual can do, rather than what they can't, wholly admirable. It is surely right to work from a presumption of ability, rather than adopting a patronising attitude that people with disabilities are unable to make a contribution.

Since the Disability Discrimination Act became law, we have seen attitudes slowly changing. Businesses are much more aware of the needs of disabled consumers, and while the situation is far from perfect, it is significantly easier now for individuals with a range of impairments to access goods and services without a struggle. Places of work and education are required not to discriminate on the grounds of disability - if we make the case, rightly, to employers that disabled people have a lot to offer, surely we must apply the same criteria to judging the capabilities of an individual who is currently not in work.

All the research shows that people who work enjoy better health and well-being than those who remain on benefits for an extended period of time. And it is a fact that anyone who spends two years on incapacity benefit is more likely to retire or die than to find a job. This has to be changed.

When I wrote recently about the dangers of positive discrimination, the response was pretty mixed, with a number of disabled people saying that they found it so hard to get a job, they'd take any assistance that was offered. I still believe that the risks inherent in ringfencing jobs for individuals with disabilities outweigh any benefits, but at the same time, society must work to remove obstacles in the path to employment. A test that focuses on abilities, rather than incapacities, allied to a support system that will genuinely assist individuals in obtaining the skills and confidence they need to return to work, is surely a step in the right direction.

Your power chair - mobility aid or obstruction?

In response to my recent article in the Spinal Injuries Association magazine concerning changes to EU legislation on wheelchair accessible vehicles (WAVs), Chris Povey has contributed the following article, which sets out one man's so far unsuccessful quest for a suitable powerchair to use as a "drive from" as well as for normal daily activities:-

Chris Povey writes:

"The part of the article where you suggest that wheelchair manufacturers might put disclaimer clauses on their products, rather than going to the expense of modifying them for use in a vehicle is, I feel, the real issue - namely the design of wheelchairs, be they powered or pushers, is wholly unsuitable for users' needs.

I drive a Braun converted Voyager from a powered wheelchair. I have noted/complained about/searched for a solution to the trend for chairs to increase in size and weight since the mid 90s. My last adequate one was the first mark Cheetah: since then seat heights have risen so I could not get knees under hand controls; frame widths compromise side entry (let alone using toilets); total weight makes overcoming steps by man-handling a health & safety issue.

I currently use an obsolete Invacare Twister, modified by a local bike co-op and an auto engineer to address the problems I found with the original design.

For my last vehicle I decided I wanted, after thirty odd years of absence, a head restraint. This could not be fitted to the vehicle, so I pushed for one attached to the wheelchair - if it could be moved out of the way for normal living. Nothing exists in the market so the vehicle converter made one out of a spare ramp actuator. This has worked perfectly for two years.

I then decided to design my own wheelchair seat with the minimum features needed to live all waking hours in the same seat. It would need to pass vehicle crash testing, and more importantly, survive day to day living and be easily repaired. I based my design on high grade, light, strong marine and climbing components, mostly aluminium and titanium. The maximum width is 57 cms (actually it can be less - probably 55 cms - I want to increase comfort by having a wider than normal cushion).

The rising headrest has been incorporated with smaller, lighter actuators and designed so that it rises in an arc to position itself better. The armrests have been the hardest parts to design, probably because I have set myself very difficult requirements.

They must be operable in the dark, one handed with spinal injury C5/6 dexterity. They must work from a single pillar set well back so that the vehicle seat belt works optimally for crash testing.

Another major design problem has been to remove welds, as these break down on armrests.

The original intention was to make a couple of these seats, then transfer them to power bases for the rest of my life. The original fabrication costs (£4000 - £5000) would be absorbed over that period by cheaper bases, which from past experience last about three years.

In Autumn of 2005 I met the CEO of Dundee-based manufacturers, Lomax Mobility at a function, and was very surprised to see that the base of their Powermax wheelchair would nearly fit my requirements.

I negotiated with their engineers that I would get the seat fabricated if they would modify the Powermax frame so it would offer a lower seat option. Their technology is old but reliable; I was willing to sacrifice range for reliability and a very small footprint of chair.

Lomax were then taken over by Sunrise Medical, who shelved the project. Had it continued as I wanted, there would now be a working, marketable, small footprint powerchair admirably suited to the 'drive from wheelchair' option. It would have an integral, retractable headrest; repositioning of seat tilt and back incline - all features vital for a reasonable cost "travel in vehicle" wheelchair. Equally, it would fit easily into a metro-type taxi, would be light enough to avoid breaking its ramp, and would be manoeuvrable into the rearward-facing position required by taxi insurance. The headrest in up position would prevent what I am assured by a vehicle crash testing expert is the inevitable decapitation of a wheelchair user in a forward shunt accident in a taxi.

My design for the ultimate seat on a Lomax base was only the first step. I want a long-range variant. I will probably have to design a base as well, using lithium batteries in a container which can hold two chargers, to run in parallel for fastest charging; transfer board; tools; and spares. The footprint will be as small as possible, for train/bus/taxi travel. The total target weight including batteries is less than 70 kg.

After that I would want to increase the maximum speed so that the powerchair can use cycle paths. The objective being that an urban user should not need private transport - looking towards the day when buses are required to become DDA compliant. From talking to people who are working on projects to motorise such modes of transport as bicycles and rickshaws, it appears that it is cheaper and lighter to buy volts rather than amps; so the motors on powered wheelchairs need to run at much higher voltages.

I want to simplify chair controls. I only need two settings: one to carry drinks and the other to avoid able bodied people who step in my way without looking. The first requires very low acceleration settings, the second requires extremely high settings. A possible third for higher speed on cycle ways will suffice.

I don't need lights, indicators, horns, or seat positioning on the main controller; if you want them, then have them as separate remote/radio controlled units.

What we need is simple, reliable, easy-to-use controllers that won't go 'rogue' as can happen with some more complex units. I don't want seat risers, pneumatic tyres, automatic brakes, suspension, kerb
climbers etc.

I want to use pub toilets, even with a guard on the door - not their car parks. I want to get my knees under restaurant tables. I want to get into those pubs and restaurants in my powerchair - even if they have steps.

The problem is that Sunrise, Invacare, Pride, Balder, Permobil etc do not seem interested in designing to do these things. In my experience, it's not the engineers in these companies that are the problem. They have generally given me pretty good service when necessary.

It appears to be the more peripheral departments, like marketing and legal, who want ever heavier, more stable machines with extravagant options such as suspension, seat risers and standing facilities.

Maybe we the users and our professional advisers are the culprits: we have forgotten that wheelchairs are primarily mobility aids for going to places - and increasing the weight and size cuts down the number of places we can get to."

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.