The image of care

Today we’re very privileged to publish this guest blog from Geoff Gunby, a long-term sufferer of epilepsy, who has now been seziure-free for over two years. He talks about how this remission has effected his outlook on life.

I recently commented to a Facebook friend on the subject of seventies rock lyric, a song by Hawkwind about nuclear war, that somehow, back in the day, it was almost reassuring to have the apocalypse at hand, that at least one knew where one stood. There was a definite something to fear, no matter how much one tried to ignore it, and this allowed songwriters, for example, easy access to a sense of meaning and importance. Never mind that the end of civilisation as we knew it was a constant and real possibility which nearly did come to pass on several occasions, well it didn’t and we’re here now, lets be glib and why not?

Oh dear.

But we’ve all done it, posted something and then spent the rest of the day in frenzy of remorse, all the time wondering if it’s not to late to delete the evidence of one’s stupidity, raking over and over how one has just exposed oneself in all one’s crude shallowness to the baleful gaze of the great rational out-there, who are all, even as you sit transfixed, about to unfriend you and then share with everyone you have in common what a fool you are, leaving you in virtual limbo for ever and a day. Anyway maybe I was feeling stubborn, maybe I just had an attack of proportionality, but I just let it stand and of course, needless to say, no one did any commenting, complaining or unfriending, even if they had been finally confirmed in their suspicions about me.

Besides the fact is that people do tend to be more at ease with hardship than uncertainty and that this is mirrored in the suicide rate actually going up at the end of wars or during times of economic improvement rather than with the enemy at the gate or in the trough of depression and this was what I would like to think I was really alluding in my post – to that in a strange way its much better to be done for, to be in the depths of despair and to be able to give up rather than to have to face up to deciding what to do next and to the fact of your own uncertainty and growing realisation that there are no givens.

In the past I have suffered from depression and whilst it is not an experience I would recommend to anyone the fact is that one does become habituated to it in the same way as one might to being unemployed or in prison. More relevant to my present circumstances and to this line of discussion is the epilepsy from which I have suffered for the whole of my adult life and from which, due to good doctoring and my having made some lifestyle adjustments, I am now enjoying a remission which has lasted for over two years, constituting the longest time I have been well since I was 14.

For 37 years I have suffered from scary petit mal seizures and from over the top grand mal tonic clonic seizures. I’ve collapsed into freezers in Sainsburys and lived on Bonjela for days without end. Every day of my life has have spent in the shadow of this life threatening illness, the only positive aspect of which is that, like a character in a story by Doestoevskii, that patron saint of the epileptic, I can never remember what has happened.

I have spent my life working out how to get enough sleep, making sure I get and take my medication, all the time worrying about the effect it is having on me, calculating the risk in climbing stairs and ladders, visualising roads and hillsides as places upon which to collapse and die, woken up in hospitals not knowing my name hundreds of times over, having screamed and turned blue and cheated death by a whisker, suffered the pain over and over of a bitten tongue or a scraped face or bruised pride and just carried on and carried on until all this has become my normality, a normality to which I have to say I became adjusted and in the end clung to with all my might. I was ill and that was that.

And now that things are better, now that I have taken the time to realise that without alchohol I would have had few if any seizures, reviewed the implications of this and taken the step of stopping drinking, having faced up to the addictive nature of the drink/meds combination, what I am left with is a whole lot of fear. It may be that I have simply got better as many epileptics do if they make it past forty, but still I can still look back over a life shaped by an illness and think what if?, what if?, and it’s like standing on a clifftop facing away from the edge. I think what if, what if? what if I’d died, what if I’d chosen to live earlier, and of course, as with all such questions the answer is that there is no answer, only the future.

Yes. I am now confronted with all the issues that my illness helped me avoid ranging from ‘am I really that bad at chess?’ to ‘can I succeed as a painter’, from ‘how can I make a living?’, to ‘can I be loved for who I am and not merely as a dependent?’. The whole of my life has changed and with it has come massive uncertainty, penetrating into every aspect of my daily routine and everything I do, should I think of learning to drive?, should I buy a bike and dice with the London traffic?, should I finally finish with disability benefit?, am I still ill?, should I aim to cut my medications?, just how does one cope with the social anxiety of going to a party straight and being surrounded by boring middle aged people drinking and taking drugs like there was no tomorrow? Questions, questions and more questions and I love it. Nothing more than everyday worries and yet so so precious. Through my experience as a long term patient I can see them as something to be grateful for rather than something to run away from or to ignore.

But still incredibly I find when things get a bit much there is that same voice prompting me to take a chance and have a drink, smoke and joint or stay up all night and it has me wondering, how many others are there in the same boat or worse, people for whom getting better is not so much not an option as just a little bit too scary to contemplate, who are holding themselves back just because they can’t face the questions. Of course there are limits to what people can do, to what extent simple willpower and clean living can do to bring about recovery, but the eternal debate concerning to what extent being labelled ‘disabled’ is in itself disabling will, of course, run and run. As will all the other questions.

I admit it; I’m a grumpy old man always complaining about kids doing this and that. Yes, the truth is that I’m just jealous that my 12-year-old can read War and Peace in the time it takes me to text a message and when he can tear himself away from i-this, i-that, I say ‘Please can you do some homework,” and get a stare that resembles Celtic and Rangers fans after a particularly feisty Glasgow derby.

But there is one thing that does get on my nerves and that is kids, and I mean young kids, who are literally glued to their phones. I hear stories from teacher friends who complain that kids in Year 7 are constantly messaging, texting, Facebooking (the verb will be in common use within five years), anything except LEARNing. Step onto any bus and you are confronted by a raft of hand-held devices held by kids as young as seven.

But of course there is a worrying side to this seemingly inescapable march to technological meltdown. In my day, bullying meant a good hiding in the playground; today it’s much more sophisticated with texting replacing the the boot and with parents seemingly in much less control of their youngsters than ever before it came as a pleasant relief to see this product hit the market this week.

BBC News: SIM card to help parents protect children from bullying

Bemilo represents the first time a phone company has addressed the problem of our children’s obsession with the mobile phone. But the really good thing about Bemilo is that the concept is about enabling rather than punishing children. The company is to be congratulated for helping children use their phones safely with the fall-back of their parents monitoring and controlling their usage in case they run into problems.

On this piece on Radio 4′s You and Yours programme some older sounding kids objected to their parents being able to ‘snoop’ on them. But I applaud this company for caring about kids who can’t speak up for themselves, who need a phone to let mum and dad know where they are and who can be part of the technological zeitgeist without worrying about the consequences.

Anything that enhances safety of children gets our approval; this product looks like the perfect way for a parent of a nagging child to say ‘yes’ knowing that the child will be protected.

For some reason, inexplicable to me, sport assumes a great importance in my life and millions of fellow sports addicts. In my case it is football and cricket that are responsible – depending on which way you look at it – for me wasting or enjoying thousands of hours of my life either playing, watching or officiating (I qualified as a cricket umpire two years ago).

Followers love the excitement of their chosen sport and there is nothing like the banter in the pub or workplace (or both if you happen to be the landlord) after a controversial event or match.

In these difficult economic times sport assumes an even greater importance in enabling people to escape to a place where the grass is greener and where your favourite team or sports star is keeping you on the edge of your seat. That is, of course, unless you want to watch the event live. The cost of attending live sports events is becoming increasingly prohibitive to a growing majority of already dispossessed people in the UK; fancy getting a season ticket at Arsenal (to name but one of many Premier League football clubs)? Don’t expect too much change from a grand. Want to spend an enjoyable day in the sunshine at Lord’s this summer to watch the England-South Africa cricket Test or England-Australia one-day international? That’ll be £128 or £160 please. And let’s not even go near the price of attending F1 Grand Prix, and dare I say in this season of sporting nationalism, some of the Olympic events (and that’s if you are lucky enough to get through the Stasi-like application process online).

As in all these situations, the first past the finishing post of nabbing the best seats in the grandstand are our old friends the corporates who treat their clients and suppliers to the sounds of munching of canapes and gentle clinking of champagne glasses while the rest of us slump in front of a TV (and if you don’t have SkySports at around £25 a month then even that is not an option).

I can live with upper-class toffs strutting around Henley or Ascot – these genial annual bashes are part and parcel of the sporting calendar and take us back to an era of debs, bounders and tiffin. But to see our mass spectator sports acquiescing without a fight to the power of big business is truly sickening. And though I really hate to hanker on about ‘the old days’ (at my age there is more to look back on than forward to), I can remember a time, not so long ago, that a day at a Test match and entry to watch Arsenal would set you back about a tenner, or even a fiver. A time when the stadia were heaving with people appreciating the finer points of their sport rather than the current crop of corporate hangers-on. A time when supporting your local club or sport meant something more than a physical presence. And a time when the greed of fat cats was confined to Ascot.

We are publishing a powerful and moving piece today on our blog from Nikki Kyriacou a graduate of photography, whose mother Maggie died from complications around MS last year.

I knew Maggie around 30 years ago when we were both working in residential care homes for adults with physical and learning disabilities. She was a joy to work with, a wonderful communicator who loved people and life.

Nikki’s piece is much more than a chronicle of Maggie’s deterioration of health. it is a testament to the love and care provided by Nikki’s dad Soph and herself and we are delighted to publish this moving piece in memory of a very special person.

Mark Rivlin

Although I grew up knowing my mum had Multiple Sclerosis, I have asked my dad to help me with this blog as he was mum’s full time carer.

It was back in February 1992 when my Mum lost her vision in her left eye known as “optic neuritis” where the nerve supply from the eye to the brain inflames and the vision pathway is lost within that affected eye. Although optic neuritis is associated with MS, not everyone who gets optic neuritis goes on to develop the disease.

It was a shock to my parents when this happened, especially as mum worked with adults with physical and learning disabilities in the early 1980s and knew what MS was, I was too young to understand what was going on. She spent 11 days in hospital on high doses of steroids to reduce the optic neuritis, which it did, but was told by her neurologist it may come back in the same eye or the other eye and that this was a sign of MS but needed to have a lumbar puncture to confirm that.

Mum was in denial as she didn’t want to have the lumbar puncture, and it was my dad that said you should have it done as it may be benign – another form of MS which didn’t mean she would get the symptoms. Eventually mum had the lumbar puncture (this is where they remove fluid from the spine and test for MS) about a year after the optic neuritis happened and it confirmed it was MS and mum was in tears as she knew what lay ahead having worked with people suffering from MS.

Things continued as normal and my dad gave Mum all the support she needed, but things did start to deteriorate; mum would be unstable walking and her vision was not as it had been (excellent at one time 20:20). She continued to work and also pursued her passion which was singing and started to sing in clubs and pubs in and around the north west of England. She was doing well and loved it so much that her MS symptoms did not bother her as she was focused on something positive.

Unfortunately, as positive as mum was, the illness started to take its toll and make her life more difficult and started to take medication which gave her bad side effects and her singing had to take a back step. In fact, it had a big impact on us all and even I had to stop going to my ballroom dance classes as dad couldn’t take me. It was hard for me and dad to see the person we both loved so much not being able to do what they wanted.

Eventually dad had to help mum with dressing and washing as it became too difficult for her. She started to use crutches to aid in her walking, but this did not last for long as she was falling and needed a wheelchair. She was looking depressed and started to feel a burden and dad would say to her: “In sickness and in health”. It became a round-the-clock job for him as mum’s disability was progressing and needed the care on a one-to-one basis. Dad, being a proud man, didn’t want carers from the community to do what he was more than capable of doing it, and better. “This is my wife, not a telephone number,” he would say.

Mum was finding it difficult to swallow and we had some near issues of choking, and at one time it was so bad we had to rush her to hospital – we can still remember that July day in 2001. It scarred us both. They advised that a peg tube be fitted to be able to feed mum directly into the stomach through a pump machine as swallowing even blended food was hard and drinking was dangerous as she aspirated (food or water goes into your lungs as you have no control over swallowing).

Her breathing became problematic as MS is a muscle weakening disease and she had to be given oxygen. Things were becoming harder in all our lives and were now becoming housebound and my dad was physically and mentally tired he never moaned, he just did what he wanted to do and that was look after mum.

It became even harder for him as mum started to have cognitive problems where it affected her speech and thought, so communication was very hard. This was putting stress on mum not being able to get words out but dad had a lot of patience and started to understand what the mumbled words meant, and would ask mum is this what you meant? If it is right then blink once. There were times when mum could blink once almost straight away, but MS at times makes it difficult and if she was not able to blink dad would think he had misunderstood her, and then she would have forgotten what she was trying to say.

Dad hoisted mum in and out of bed and into the bath with system fitted to the ceiling – this took the strain off him doing too much physical movement. Toileting became the biggest problem as mum became doubly incontinent. It became so out of control she needed to have a supra pubic catheter fitted into the bladder from a hole below the naval and unfortunately she also had to have a colostomy.

Dad was in a better frame of mind; he would say to mum, just think of how life would have been 100 years ago where these interventions were not available. This was dad being dad and converting negative thoughts to positives. He was always offered respite but he couldn’t accept it as he was so devoted to my mum.

Sadly on August 25th 2011 mum died and we were both heartbroken. She was 48 years old, too young. But on that sad note, we have all the good memories to look back on and we both believe that some day we will meet up again, and hope that mum has found perfect peace.

We are delighted to welcome Nikki Amanda Kyriacou to our blog. Nikki, who is a graduate of Photography, will be posting occasional articles as well as doing some photography for the site. Here is her first blog.

My dad is in his 50th year and is currently trying to get back into employment, after being a full time carer for my mother for 12 years. She sadly passed away last August and he did not anticipate the struggles of finding a job, particularly as he has a degenerative eye condition.

Organisations like Remploy are supposed to be here to ensure the help and support for disabled job seekers. This has recently been highlighted in the media as untrue, as they are proposing to sack over 1700 of their employees with a disability and close down several factories (Independent: 7th March 2012).

Dad joined a work programme run by A4e known as Bootstrap. Here, he is assigned a one to one adviser who currently guides my dad to find work in what he can do now. It has been hard, as jobs are very thin here in the North West of England. It seems that most jobs are geared up for people who don’t have any disability, and sadly there have been no jobs for which dad has been able to meet the criteria.

He is a skilled man, but has had to reconsider his options because of his low vision as he would not be able to fulfil the job he trained to do. It’s been so difficult, that he has not even been able to get a job interview as of yet, which being such an active person and has always worked, makes him a little despondent.

The way a lot of people in a similar situation are trying to get back into employment is not trying to find work in what they were able to do in the past, rather what they are able to do now. I just hope that the majority of employers see beyond the disabilities that people face on a daily basis, and for them to look at a person’s ability and experience.

If you have an Android smartphone then, from today, you can browse sample images from the Careimages library on your phone.

The free app is now available from the Android Market. Use this link or point your phone’s camera at the qrcode* shown here. At the moment you can’t login to our site from the app, but you can save favourites on your phone.

When browsing through random images, the images selected will be picked to automatically fit the orientation that you hold your phone in. Want to see landscape images? Hold your phone sideways and swipe through the few images currently in the cache until the app fetches some more. Note that this feature requires your phone to have an orientation sensor (most do).

We welcome any feedback on the app, either to us directly or via the market.

* What are qrcodes? They are a form of barcode that smartphones can read easily using their camera and a suitable application. For more information on qrcodes, follow this link. A suitable android app for processing qrcodes is this one. If you want to generate qrcodes yourself, here’s a page that does that.

The dear old NHS has come in for plenty of stick lately – today’s report on reforms the latest in a long line of bad press ( The Guardian: NHS reforms criticised by leading healthcare publications ).

So with great pleasure I can report that my first ever operation procedure in the middle of my sixth decade was an extremely positive experience. True, the surgery was a no-nonsense Hernia procedure which these days is completed in one day. And the way I was treated by the wonderful staff at Hackney’s Homerton Hospital made me feel like a million dollars. From the receptionist who booked me in, to the wonderful nursing team, anesthetist and surgeon, an experience that I was not looking forward to turned out to be painless and worry-free (although I’m pleased to have been given painkillers for the after-effects!)

Here was the NHS at its very best; a group of superb health-care professionals who worked as a team ensuring my comfort and well-being and despite the pressure they work under, always had a time for a smile and a reassuring word. And they represented all that is good about our society, a wealth of nations represented on both sides of the operating table, giving and receiving care. This is what we pay our taxes for, so that we can be given help when we need it and that help is not provided on the basis of wealth, status, colour, creed or background. Compare this to the ‘show us your credit card’ model of healthcare in the USA and tell me which is superior.

So thank you to the staff at the Homerton; despite all the problems in the NHS with funding and reform, you proved that on the ground it is a health system of which we can be immensely proud.

Shock, horror is at it again regarding care. The review of home care by the Equality Commission has found that care supplied by agencies to people’s homes may be breaching their human rights.

Half of the 500,000 people receiving such care reported they are satisfied with the care provided, half are not and there is no shortage of shock, horror stories.

We have been down this road before in the treatment of vulnerable people in care homes, now we see the problem is endemic in private houses.

It is too easy to suggest that it is because the providers are mainly private companies and are stretching their resources to squeeze as much money out of the time provided for each home visit. After all, local authority provision has been found out in these areas many times. But it does leave a bad taste when you realise that profits are not only coming before people, they are also dependant on the misery of people.

I know about this first hand. Two years ago a private company bought the adjoining terrace house to us and made it into a small care home for five women with mental health problems. Having worked in this area myself when I was a social worker I know the problems associated with placing people in the community who cannot cope with the everyday pressures this change of lifestyle brings. The result, one resident had to be moved back to secure accommodation after a litany of abuse, screaming and inappropriate behaviour culminating in her hurling a heavy object into our garden and so threatening the safety of our children. And now we are being forced to complain about another resident who presents similar behaviour. Having bought such services when I was a commissioning manager, I know the kind of riches that can be made from working with vulnerable people coming form a secure or semi-secure environment. It does not take much of a mathematical brain to see why the company in question is prevaricating on our complaints.

I do not have a problem with companies which provide a good service being able to manage care services but too often ‘good service’ takes a back seat to ‘healthy profits’ with the subsequent shock, horror reports of neglect.

The answer to these problems is actually quite simple; registration, inspections and follow-ups should be much more rigorous than they are. CQC on taking my complaint, made an unannounced inspection, found the resident was out and left it at that. It is this kind of intransigence that leads to shock, horror headlines.

There is a joke among chess players that goes like this; two players are embroiled in a game and one says, ‘let’s make it interesting’ to which his opponent replies; “OK, let’s stop playing.’ I own up to being a lower than average club player who enjoys playing in leagues and tournaments with no illusions of grandeur. My ambition is to write a chess book, “My sixty cr*p games” a reference of course to the masterpiece by the late and more than great Bobby Fischer whose 60 memorable games is one of the greatest ever books on chess. From my archive I will have plenty of losing games to choose from!

So what has chess got to do with the image of care? Well, the charity Chess in Schools and Community, CSC, has had success in helping young people from disadvantaged areas and communities improve their lives. The charity is pushing the game in primary schools across the UK and youngsters who have been involved in negative types of battles in gangs are now enjoying the endless possibilities offered on the 64 squares.

Chess is second only in participation to football, an estimated 500 million people in 167 countries play the game and in some countries it is on the national teaching curriculum. Chess’s unique selling points are that it is universal, with no barriers of age, gender, race, physical disability or language; it has a positive image and that it has educational and social benefits backed by academic research. And those of you reading this who have enjoyed the occasional game on the beach will testify that it is a cheap, fun pastime that can be relatively easily picked up and enjoyed.

CSC are making an impact with coaches helping a range of primary school kids across the country and from different backgrounds and the feedback from headteachers has been very encouraging. A similar scheme in the USA was adapted as a feature film Knights of the South Bronx

Chess may not seem ‘cool’ but the world’s number one player, Magnus Carlsen from Norway, starred in a fashion shoot for G-Star and plays matches with Formula-1 style sponsorship on his shirt.

So I applaud this initiative by CSC and wish the charity well.

I sometimes wonder if there is a semblance of a society or whether we are just a piece of land inhabited by 60 million-plus people. We are all struggling in this recession; it’s hard to make ends meet at the best of times but at the moment it’s becoming a harsh, mean society we live in. On a morning radio phone in this week we heard how some people are waiting a day to eat between meals so as to save money, two days later we heard how an elderly man in hospital was forced to lie in his soiled bed as the nurse on duty refused to clean him, or indeed the bed. These snapshots are not sensationalist; they are happening just as footballers paid £250,000 a week are stumbling out of night clubs and while MPs are filling out expense forms with varying levels of honesty.

The material gap between rich and poor is obscene but nowhere near as obscene as the way poor people are denigrated by the rich. I’m not a political activist but even I’m moved to anger when I see poor youngsters priced out of the education market by the obscene rise in tuition fees while the scum who screw us for outrageous amounts of money to buy our gas and electricity are allowed, even encouraged, by this government to rip us off even more as prices go through the roof. All in the hallowed name of the free market, of course. Those talented and spiv-like enough to play the markets laugh at the rest of us trying to eke out a living.

There is of course a very simple solution to this kind of gangsters-in-suits mugging; tax these spivs to the extent that they bugger off to a tax haven thousands of miles away. Put government money into universities so poorer kids can study and pay nurses a decent wage so they have enough pride in their job to clean a bed full of an elderly person’s s**t while he lies in it. This is not socialism, it’s common sense for God’s sake.