Aaaarrrrrggggghhhhh

I’m struggling quite a lot at the moment. I’ve recently started Amitriptyline, as well as increasing my Escitalopram, and for the first week I basically slept all the time. I’m still getting bouts of despair and severe depression, and spending a lot of time stuck in bed. Pain is down but dizziness, brain fog and problems walking are up. One of the casualties of all this has been my ability to write in detail about the subjects that I want to. Actually focussing on the detail is a massive problem. I can chat online, but I can’t write proper blog posts.

Some of the things that I really want to write about but can’t include:

  • The possible causes of ME, viral and mental, and the research into them.
  • Visiting a psychiatrist who believes my ME is a mental disease, and asking how I’m supposed to get my depression fixed without my ME being made worse by this idiot.
  • The Welfare Reform bill and the Health and Social Care bill, the problems, and how to fight them.
  • Being accurate in activism; not spreading rumours, and avoiding exaggeration.
  • How the Left and the Right stifle each others speech, or not. (I’ve written this, but can’t finish editing it and write the conclusion.)
  • Report on my experience at an Atos Work Capability Assessment, and Professor Harrington’s latest antics in policing them. (I was declared unfit to work, if you didn’t know.)
  • Discuss human rights.
  • Basing government policy on actual evidence instead of ideology and greed.
Those are just the ones I started writing, never mind the other ones that I haven’t attempted yet. For now, though, blog posts only come out when something prompts my mind to focus enough on one topic so that I HAVE to get the words written.

Atos moves to shut down criticism

Atos are the French IT outsourcing company whose Atos Healthcare arm have been running Work Capability Assessment for the Department of Work and Pensions.

Lots of people are unhappy about Employment Support Allowance, about the assessments, and about the way that Atos run them. There have been protests outside Atos offices using slogans such as “ATOS kills” to express their feelings. Lots of people have explained why they are unhappy with Atos in blogs, on social networks, and in support forums.

It seems that Atos don’t like this. They have started issuing legal threats, and they have succeeded in shutting down some of their opposition. Various websites and forums have spoken out against ATOS and collected personal stories about them. After ATOS first received a take down request in May 2011. Atos lawyers recently threatened legal action against Paul Smith who runs the “Atos Register of Shame” website, accusing him of libel and claiming that “This is a direct attack on Atos and the name of the website in and of itself is implying that Atos carries on its business in a manner which is shameful.” You can see a take-down letter from Atos here.  http://issuu.com/atosvictims/docs/legal_letter_from_atos?mode=a_p

They have also shut down a support forum for carers, CarerWatch, by contacting their server host directly and having it taken down. This has removed a vital support network from many carers, presumably because of private discussions about Atos in members only parts of the forum. Apparently people are not even allowed to talk about Atos now, despite needing to do so to support each other when going through tests administered by Atos.

Following this action against them, CarerWatch have published their reply to Atos, which I reproduce here. (I hope they won’t mind.)

21st Aug 2011

FAO  – ATOS Legal Department

CarerWatch is an internet forum for sick and disabled people and their unpaid family carers. This is a private forum and only members are allowed to make/read posts.

We understand from the organisation that hosts our forum that they received a letter from your solicitors threatening to sue us for libel. The provider immediately closed our site down.

We have many members who are very fragile and the sudden disappearance of a support group has caused a lot of distress and fear. Some are ringing us in tears. We cannot get in contact with all of them though as we have lost their contact details through the closure.

All this distress could have been avoided if you had had the courtesy to contact us first and tell us what had been posted on our site that you considered libellous. Obviously if any post was possibly libellous we would have removed it and all this distress could have been avoided.

We imagine this distress is unintended and hope you will work with us in looking at the problem and finding a solution.

Please note that this letter, and any reply received from yourselves, will be posted on our website. It is the only means left to us to reach some members and keep them updated.

It is vital we have our forum up and running again to reach those that are isolated.

Frances

On behalf of CarerWatch members

 

Obviously, I don’t want my website taken down. I have been careful to state only known facts here. These are the facts that I know.

  • Atos Healthcare carries out Work Capability Assessments for the DWP.
  • The contract is worth approximately £100 million per year.
  • There has been a sharp rise in people found fit for work
  • There has been a sharp rise in people appealing that decision
  • 40% of those that appeal, win, rising to 70% with legal representation.
  • Although the decision over “fit to work” lies with the DWP,a government review found that the DWP are institutionally incapable of overriding the Atos Health Care Professionals. The Atos recommendation is, in effect, the decision.
  • Atos employ Health Care Professionals to carry out the assessments. HCPs are a mix of doctors, physiotherapists and nurses. Only people with certain problems will definitely see doctors.
  • Atos use their own Lima computer system to record the patient’s answers. Lima has been widely criticised.
  • The HCP fills in Lima by choosing keywords and statements from a list and then justifying them.
  • An Atos recruiter said “We don’t call them patients . . . We call them claimants.”
  • Twelve Atos doctors are under investigation by the GMC over allegations of improper conduct.
  • Two Atos employees are under investigation after referring to patients as “parasites” and “down and outs”.
In the end, although there is much to criticise with the way that Atos carry out ESA WCAs, they may really only be doing what the government expects of them. The descriptors that are used to make the decision of whether a person is fit for work or not are set out in the by the government. (See The Employment and Support Allowance (Limited Capability for Work and Limited Capability for Work-Related Activity) (Amendment) Regulations 2011) I personally question whether Atos accurately records if a patient fits the descriptors or not, and their ability to do so given the way that Lima Works or the staff that are used. Even if they do make an accurate record in line with the government’s descriptors, it is questionable whether the descriptors are an accurate description of being fit for work or not. Even then, it seems that decision makers at the DWP are “institutionally incapable” of taking into account all of the relevant information for the case as they are supposed to, instead simply rubber stamping the recommendation made by Atos. It would seem that the appeals tribunals are making a fairer judgement on this issue than Atos or the DWP.

Don’t judge my ups and downs

I want to address an extremely worrying lack of understanding amongst the general public about how sickness and disability work. This tweet is typical of the problem. (This is not an attack on the person that tweeted it, I just want to address the perception so please leave her alone.)

[blackbirdpie id=”103038413380403202″]

Sickness and disability can be immensely variable.  I can’t speak for all disabilities, but I can talk about my own. I have good days and bad days. Actually, I have good and bad minutes, hours, days, weeks, months and years. I can have bad patches within bad patches. Basically, my health varies to an incredible degree, and what I do at any point is no indication at all of what I can do at another point.

Some days I need a walking stick. Some days (most of them at the moment) I need a wheelchair. Some days, I can walk unaided. Some (rare) days I can run up the stairs.

When it comes to events, though, I take no chances. If I had to attend a football match like the quote above was talking about, it would be wheelchair all the way. (I hate football, but run with it for the example!) The important thing to realise is that I might start out able to walk, maybe even unaided, but I would still have to be in the wheelchair on arrival at the game, because otherwise I wouldn’t have it with me later. By the end of something like that, I would probably be barely able to keep my head upright while sitting in the chair.

A few years ago I attended the recording of a TV show in London. The two hours of travelling was OK, but when we arrived I desperately needed to sit down. We had turned up an hour or so early as instructed, but, horror, we had to queue for that whole hour. We had travelled by motorbike and I had no mobility aids with me because I was relatively well at that point, but that queue was hell. I was in agonising pain by the end of it. Had we just been walking around a bit, I would have been fine but it was the standing in one place that hurt me.

And so, I hope you can see the issue here. It is perfectly possible for me to be in a wheelchair one day, and then strolling across the town centre the next time you see me. And for a big event, I will be in the wheelchair anyway, not for any special treatment, but because if I don’t set out in the wheelchair, I will end up being carried home or leaving in an ambulance called by worried people when I collapse. The point is, YOU can’t judge. You have no idea how my body copes with each situation.

Note: comments that “We know you’re not faking it but the real cheats spoil it for everyone” will be deleted.

Managing ME

People often assume that medicine can cure M.E, or at least keep it under control. Unfortunately, they are wrong. While I can and do take many medicines to treat pain, insomnia and other symptoms, none of them will cure me or help me keep the fatigue at bay. The main symptom of M.E. for most people is Chronic Fatigue. The World Health Organisation says of this:

“Chronic fatigue syndrome (CFS) is a clinical diagnosis characterized by an unexplained persistent or relapsing chronic fatigue that is of at least six months’ duration, is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction of previous levels of occupational, educational, social, or personal activities.”

The important parts to note here are “not alleviated by rest” and “not the result of ongoing exertion”. The result of this is that when someone suffering with M.E. tries to do something important – such as going for a compulsory interview at the job centre – there will be a payback for that activity which will cause them a disproportionate amount of fatigue as well as many other symptoms that they might suffer from. The payback may not hit straight away, or there might be several stages to it, and it can last for days or weeks. Stress often has the same effect as physical activity, and can result in the same payback.

I have found only one successful way to alleviate these problems and keep the fatigue at bay, and that is pacing. When I was a patient at the M.E. clinic at Oldchurch Hospital back in 2005, pacing was the most important thing that they taught me, and in fact getting pacing right was the bulk of my treatment there. Pacing played a large part in getting me back into work at the end of 2006.  Now that I have had a serious relapse and have been well and truly in the “severe M.E.” category for a few months, I need to re-introduce pacing so that I can have some chance of getting my illness under control again. In fact, I should never have stopped pacing at all. For most sufferers, M.E. never really goes away, and without careful management it will strike back with a vengeance.

What is Pacing?

“Pacing is a technique used by many people with M.E. Pacing is about learning what activities your body will tolerate or cope with, without causing a relapse or a set back. It’s about taking a positive attitude to your recovery but discovering and recognising your limitations.” (Definition from action 4 me)

“Pacing is sometimes called adaptive pacing therapy (APT). Pacing is a strategy in which people with CFS/ME are encouraged to achieve a balance between rest and activity. This usually involves living within the limitations caused by the illness, but having some limited types of activity alternating with periods of rest.” (Definition from patient.co.uk)

The most important part of pacing is getting the right amount of rest. The M.E. clinic helped me divide my day into short periods of rest and activity. Every one to three hours of activity would be followed by half an hour of rest. Rest, in people with M.E. meaning lying still, not looking at anything or listening to anything that requires thought, and preferably not thinking about anything. Reading, television, radio and thinking can all be tiring to someone with M.E. Hell, I list sitting on the sofa quietly as an activity, not a rest! Not only that, but I was told not to sleep during rests. Sleeping in the day makes it harder to sleep properly at night. In my case I take a long time to wake up and recover from sleeping no matter when it is, so I definitely want to avoid sleeping in the day. To help me with my resting (and getting to sleep) I was taught breathing exercises and relaxation techniques that calm the mind down.

Some suggestions for achieving relaxation, taken from my hospital notes:

  • Soft, ambient music
  • Guided relaxation techniques such as:
    • Visualisation or guided imagery
    • Progressive or physical relaxation
    • Autogenic techniques
  • Diaphragmatic breathing
  • Warm bath/aromatherapy
  • Meditation

I was told to position myself very carefully so as to support all my limbs and joints for maximum rest. Here are some examples from the notes that they gave me. Note that everything is supported with pillows or cushions. That makes things hard for someone like me who can get very restless and want to change position a lot.

Rest position: crook lying
Crook lying
Rest position: side lying
Side lying
Rest position: long sitting
Long sitting

These are the techniques that I must start using again.

  • Limit each activity to an amount I can deal with without pushing through
  • Rest after each activity
  • Adopt relaxing positions while resting
  • Use breathing and relaxation techniques to clear my mind
  • Not sleep in the day
  • Try not to get so obsessed with anything that I spend too long on it at once
Because I have very little self control, I have made a new timetable which includes appropriate length activity and rest periods. I’m rubbish at stopping for rests, so I have put four rests into my day but it might have to be more. It is important for me that I stick to the timetable as closely as possible since I have a tendency to get absorbed in things and suddenly notice that I have been going for 16 hours and am now dead. (Probably.) The idea is that I smooth out the level of activity to make every day contain the same amount, but the timetable will have to be flexible to some extent because some days I might not be able to achieve even that level of activity. I might have to move getting dressed to later in the day, for example, or take an extra rest.
An example weekly plan for an ME patient
An example weekly plan for an ME patient
Once I have found a baseline of activity that I can keep up I can then experiment with slowly adding more activity and introducing exercise in to my routine. I need to build up the pace slowly and carefully, never pushing too far and causing relapse, but not letting myself slack either. Keeping going and not going too fast are both very important. I was taught all of this in 2005, and with the help of all of these techniques I was able to slowly regain enough control over my body to go back to work at the end of 2006. I was lucky though; many people are not able to regain that much of their health even when they are perfect at pacing. And ultimately, I got lazy and let the pacing slip. If I had still been keeping up a (less strict) regime of rests while working I might not have got quite so ill this time round.

Unpleasant adventure

I had an adventure this morning. Well, not an adventure. More a nightmare.

I couldn’t sleep last night and had about three hours of broken sleep between 5:30 am and 9:00 am. Unfortunately I couldn’t sleep later to make up for it because I had to get up for my regular diabetes check up. Then when I woke up I was extremely nauseous (not a rare occurrence) and couldn’t eat anything without fear of throwing up. I thought it more important not to throw up all the pills I had just taken than eat.

My dad drove me to the doctors surgery, and my wife came with me as I could barely walk on my own. The appointment went well enough, my HbA1C is down to 6.8 and my blood pressure was also a perfect 116/76! Then towards the end of the appointment, I started to feel sick again. Very sick. And I went pale. I asked for water, but it didn’t help. I was given a bowl in case I vomited, which I promptly did. Then I passed out. Well, it was better than being there for the experience.

My memory is intermittent after that. I came round on the chair, then remember waking up lying on the floor, with my GP in the room as well as the practice nurse. I was having convulsions and hyperventilating. There was a paper bag involved, and another sick bowl. My face felt like it was covered in vomit and snot. I think I was on the floor for quite a while like that. My blood sugar was apparently fine but I was told to eat a “cereal bar” (tasted like charred cardboard) which was apparently the only food nearby. After I had started to feel a bit better was moved in a wheelchair to another room where I could lay down to recover. I was eventually allowed to leave and was driven home.

So I’m home. I’ve had a bit more sleep, in small pieces. I feel a lot better now, but I’m worried. I don’t know exactly why this happened, and I am worried that it could happen again. This marks something new in my illness and the prospect of vomiting, passing out and convulsing somewhere more public  is very scary.

“Government sources” attacking disabled people

As I wrote in my last blog post, Benefits and BMWs, the recent article in the Sunday Times State hands out BMWs to ‘disabled’ (Paywall link) was factually incorrect in the headline and in several points in the article. Since then I have found that the same story has appeared in numerous national and local newspapers. The story in most of the local papers was actually word-for-word the same – just google “Flash cars leased to disabled people” to find many examples of it or read this one at the London Evening Standard. Motability scheme ‘being abused’

I will reiterate here for those that haven’t read my last blog post – the government does not hand out cars to disabled people.  The most severely affected sick or disabled people can claim Disability Living Allowance, which includes a mobility component. Those people receive the money, which they can spend as they like, or buy a wheelchair, car etc. Many choose to sign over the mobility part of their DLA to the Motability scheme, which is not government run, in return for a car, wheelchair or scooter. They can also choose to pay an extra fee to upgrade to a more expensive car. In the case of a BMW, that would be at least an extra £1400. Vehicles hired through Motability are exempt from VAT and Vehicle Excise Duty. (“Road tax”) A car can be used by another person on behalf of the sick or disabled person without them being present, for example going shopping for them, or perhaps returning something that they had borrowed. If a Motability car is used by someone else for their own purposes, that is a breach of the rules of the Motability Scheme and raises problems with the road tax and possibly the VAT on the car, but does not involve benefit fraud since the DLA would have been paid to the sick or disabled person, car or not. Relatives or carers getting a “free car” and using it for their own purposes are doing so at the expense of the sick or disabled person, not the government or benefit fraud.

The stories about relatives getting “free cars” and about people receiving BMWs through Motability are worrying because they seem to originate from the government. The Sunday Times article does not mention it, but the Belfast Telegraph and the story duplicated in lots of local papers quotes “a Whitehall source” who would seem to be the only reason that this is a story at all. This source says “The issue this raises is ‘is Motability being abused?’ And the answer is absolutely, in some cases it is.” His statement is true, but judging from his other comments his emphasis seems heavily weighted towards smearing and attacking the Motability scheme and those that use it.

This is not the first time that anonymous government sources have provided stories to newspapers sympathetic to government policies. (And only newspapers sympathetic to government policies.) In a previous attack, government ministers released a select list of excuses for benefit fraud supplied to them by the Department of Work and Pensions. Of course the excuses were bizarre and most of these cases really were fraud, but no mention was made of the incredibly low fraud rate and how few cases excuses like this represent. The papers also took the opportunity to belittle addiction and “bad backs” as disabilities, despite them being crippling and life-destroying.

In another recent attack, newspapers quoted a “source close to the reforms.” We are not told where this information has come from, and yet it appeared in several newspapers at the same time. I have been unable to find a press release that correlates to this information, and therefore I must assume that the figures have been leaked to chosen newspapers by government.

Then we have government ministers giving innacurate or just plain wrong statistics on television or to journalists. Minister for the disabled Maria Miller announced on live television news that more people receive benefits for drug and alcohol addiction than for blindness (They don’t.) and employment minister Chris Grayling stated that 75% of people claiming ESA were fit to work. (They weren’t.) Ian Duncan-Smith stated during an interview on Newsnight that people on benefits are “putting nothing back into the community” even though in the rest of the interview he came across as genuinely wanting to help. Even the opposition seems to be getting in on the act, with Ed Miliband going after the “take what you can culture” and again branding benefit claimants as lazy shirkers or cheats. Presumably this is seen as the way to attract votes and popularity now.

We also see an attack from the sidelines by MP Philip Davies, who wants people with learning disabilities to work for less than minimum wage, as though they somehow need less to live on than other people.

All these attacks add up to something very disturbing. The government is steam-rollering through welfare reform with only an occasional speed bump when people raise specific instances such as cancer patients that won’t have enough time to recover if given time-limited Employment Support Allowance. Such a shame that while highlighting 7,000 cancer patients, Ed Miliband didn’t spare a thought for the other 700,000 seriously sick or disabled people affected by the same rules. The pace of savage cuts and reforms backed up by relentless propaganda is terrifying and it is taking us towards a society that no longer cares for those who are sick or disabled.

 

Related blog posts

Benefits and BMWs

Compare and contrast

Response to the attack on DLA in today’s papers

“Putting nothing back into the community”

Other Links

Benefit Fraud: a success story the government doesn’t want you to know about

Ed Miliband and the “Cheats” and “Shirkers”

If you think this is important, please help spread the word by leaving the link in comments on stories about this, and on social networks. Please also click the orange and blue “boost” button in the sidebar on the right.

Thoughts on my first long powerchair trip

I went on my first long powerchair trip on Friday night. It was a 5 mile round-trip from Badsey to Evesham and back. On reflection, this was never going to be an easy journey. There are two routes that can be taken on foot. Unfortunately due to roadworks, one of those was not an option and so my wife and I were forced to take the other route, along the main road into town. This involved about a mile along a rural road with a 60mph limit, and hedges on both sides. Before leaving I checked through that stretch of road using Google Streetview to make sure that there was a path all of the way along. All seemed OK, so we set off.

Here are my thoughts on that journey.

  • My powerchair goes faster than 4mph. I think it probably manages 8mph. Excellent!
  • It doesn’t go as far as it should. The battery light was blinking after about six miles of use, not 24. Maybe a few charge / discharge cycles will fix that.
  • Using a powerchair requires planning to make sure that route and transport are accessible.
  • According to my wife, I operate a powerchair like I play Mario Kart. I’m choosing to take that as a compliment.
  • You can’t operate a powerchair like you play Mario Kart. It likes to stop before making the next move.

And some more problematic thoughts.

  • Getting to a junction and finding no dropped kerbs and therefore no way to leave the pavement and cross is frustrating.
  • Having to backtrack to the last dropped kerb is also frustrating.
  • Having no matching dropped kerb on the other side and having to take the chair along the road is dangerous.
  • Curved dropped kerbs that go round the corner are a pain. Wheelchairs are supposed to take the kerb at 90 degrees to avoid toppling. Having to turn 45 degrees to do that is irritating, AND the pavement is at odd angles that push the chair to one side.
  • A dropped kerb that crosses the pavement all the way to someone’s driveway makes the chair go down then up again. Having these repeatedly all the way along the street makes the chair go up and down continuously. They can also make the chair swerve into the road unless paying perfect attention and deploying light-speed reflexes.
  • A dropped kerb is supposed to be dropped. That means going down to road level. Not two or three inches above it. When a chair goes over that, it lurches wildly back and forth.
  • When a too-high kerb is combined with a round-the-corner curved dropped kerb that simultaneously goes up a hill on one road and down a hill on the other road, the combined angles plus speed necessary to climb the kerb mean that the chair will topple.
  • Flailing wildly when going over will wrench muscles, twist the back, neck and shoulders, and cause extreme pain and swearing.
  • Finding no way to get from pavement to road to pavement so that you can cross is bloody annoying. Did I already do that one? Well I’m doing it again because it’s BLOODY ANNOYING.
  • Tree roots growing under the path and tearing it up can lift one side of a chair, causing it to tip disturbingly to one side.
  • Cars parked on the pavement deserve to be scratched as I go past.
  • Pavements full of pot holes, cracks, patches and worn away surface are not just a minor irritant, they make the journey a hell full of dragging, rattling, lurching, bumping and worse.
  • A path is supposed to be wide enough to use. Six inches of goat trail with smashed up tarmac surrounded by tall grass and weeds right at the edges on both sides is not acceptable. Grass to within six inches of the road edge is definitely not acceptable.
  • Paths so old that their height varies by several inches NEED FIXING. You can’t leave that.
  • I got stuck on patches of broken pavement so bad that one wheel went in a hole. Not once, but twice. I couldn’t avoid the hole because the grass verge had covered the pavement.
  • I had to negotiate places where the broken, narrow path went through potholes, gravel and old stones at the edge, merged with driveways, with grass covering it at 45 degree angles. I lurched wildly. I nearly went over. And this happened in at least three places.

I’m going to stop there. There are more things, but I have complained enough for people to get the idea. OK, so most of the time I won’t be trying to travel from my village to the town, but I should be able to. It should not be a challenge, it should be a nice smooth ride along tarmac or paving slabs. Not a wild lurch along broken, grass-covered ancient pathway.

Oh, and I did manage to get to town and back, but not before the shops had closed, rendering my trip to buy cheesecake completely meaningless. I enjoyed a coffee at my sister’s house instead.

Fear and mobility

My new power chairI have been given a power wheelchair that used to belong to my wife’s grandfather. I am very grateful to my wife’s grandmother for giving it to me. It will be very useful when I have to go to the local shops, or be somewhere where I am expected to stand around or stay on my feet a long time. It will also mean that I can go to protest rallies which I has so far been left out of. I have a problem though. I have a very large psychological barrier to actually using it.

So what is the problem stopping me using it? Put simply, fear. Fear of what people will think and say, and embarrassment at people seeing me in it. I have previously written about similar problems with using my walking stick in my blog post Embarrassed to be me, where I talked about fear of abuse as well as fear of people thinking that I use a stick to look more ill and claim extra benefits. With a chair, I have an additional fear that people will think I am trying it on because they have seen me walking. My neighbours will have seen me in various different levels of health; on my best days they have seen me stand for a couple of minutes talking, and stroll across to the car park, get on my motorbike and ride away. More often, they have seen me walk using a stick, sometimes leaning on it more heavily than others. Now, they will also see me leave the house in a chair. To people that know me it is obvious that I have a variable condition that leaves me less able to move or stay upright the more tired I am or the more pain I am in. To people that see me away from the house, I worry that they won’t understand this and will simply think that I am faking my illness to get money from the government. I also worry about abuse if I stand up from the chair for a bit – I don’t have to stay in it all the time, but some people seem to think if a person can walk at all then they should always walk.

I also have a problem using the wheelchair, and, indeed, the stick, because I tend to be stubborn about what I can do. I start out in little pain and able to stand and walk, so I insist on going out without mobility aids. It doesn’t take long for me to start falling over because of exhaustion and pain though. Sometimes I can manage more than other times, and so I can quite often be capable of walking to the village shop, perhaps with a stick, and maybe walk back again too without too much pain, but the payback afterwards is high. I should use a wheelchair in this situation because that way I won’t exhaust myself just from going out to buy milk and won’t have to spend such a long time resting to recover.

When I talked about my concerns on twitter a friend sent me a link to this blog post which summarises the problem nicely. The writer has help at home with tasks like showering and dressing, yet she tries to do these things herself anyway.

“So last Thursday, when I had to explain it all over again, I told her that I *can* do all those things, but that I had to pay a price for it. And I showed her that my wrist was dislocated because of the transfer I just made. And then she said the most wonderful thing. She said: “but if your joints dislocate when you do something, that means you can’t do it right?” And she was so right…”

The problem is that she can complete these tasks, but the result of doing so is pain or even dislocation. I can walk to the shops (sometimes!) but the result of doing so is pain and exhaustion, leaving me helpless for some time afterwards.

Today I took my new powerchair out to the local shops for the first time. It’s not far, just five minutes walk away, but it’s a big step (roll) forward in making myself use the chair. I was worried through the whole journey, worried about what people would think, but I think I am getting there. I intend to use the chair to make local trips a few more times, and then I will take it out to the protest in either Birmingham or London on the 30th. I hope I will get over my fear by then.

Related links

Embarrassed to be me

Rise in abuse of disabled people is shocking but not surprising

A new definition of being able

Stressed

I’m stressed because I have to deal with benefit cock-ups and repaying a massive overpayment. I’m stressed because I need to deal with buying a cooker. I’m stressed because the washing machine won’t fit in the space next to the dishwasher. I’m stressed because we don’t have a shower, only a bath. I’m stressed because it seems impossible to talk to the electricity companies to sort out our meter. I’m stressed because politicians are all attacking the sick and disabled. I’m stressed because the general public thinks everyone on benefits is a cheat and a scrounger. I’m stressed because I can’t keep up with all the campaigning and projects that I want to be involved in.I’m stressed because I have started 16 blog posts that I can’t get inspiration to finish. I’m stressed because I can’t work. I’m stressed because there is no room for my wheelchair in this house. I’m stressed because I am afraid to use the wheelchair because of what other people might think. I’m stressed because I am in pain. I’m stressed because I take too many painkillers. I’m stressed because my wife can’t get a job despite a shortage of science teachers. I’m stressed because I live in a village too far from town. I’m stressed because we haven’t finished unpacking and the house is a tip.

I’m stressed because I am stressed.

Please excuse me, I’m going to curl up in a ball in my bed now.

Compare and contrast

This morning I have come across two contrasting news stories.

The first has been reported across all the news media, but I will link to the BBC story.

Bizarre benefits fraud excuses revealed by government

“Ministers have tried to highlight the impact of benefit fraud by publishing some of the more unusual excuses used by people found guilty of cheating.”

The second is in the Guardian’s Comment Is Free blog.

Cancer has shown me the injustice of disability cuts

“My diagnosis means I have experience of the terrible impact of welfare cuts. I will use my time left to shame those in power.”

The first story above reports on the most absurd excuses made for benefit fraud after the government have made them public today. The release of anecdotal evidence of fraud by government ministers is shocking spin. Of course the ridiculous nature of these excuses makes good publicity for the government and has been quickly picked up across all the news media. It comes on the back of minister for the disabled Maria Miller announcing on live television news that more people receive benefits for drug and alcohol addiction than for blindness (They don’t.) and employment minister Chris Grayling stating that 75% of people claiming ESA were fit to work. (They weren’t.) These are just some of many inaccurate or over-simplified releases of information by the government.

The current government, backed up by the tabloids, has a clear agenda to denounce the sick as scroungers so that their funding can be reduced or even cut off. It is a lie that is all too easily swallowed by the public. Reports of benefit fraudsters in newspapers makes good stories that cause the necessary amount of outrage in their readers to sell more newspapers. Unfortunately they grossly misrepresent the amount of fraud that actually goes on and distort the views of the people. I have two points to make here really; the amount of fraud is FAR lower than most people think, anecdotal evidence or not, and that people judge others far too easily and decide that people are committing fraud based on things that they see when they have NO idea of the actual circumstances. I am saving my arguments on this for another article, but I have already written about this in my previous article People on benefits? They’re all scroungers aren’t they? and mentioned it numerous times on this blog. I have also mentioned the assumptions that people make about my walking stick in Embarrassed to be me where I wrote about how people question why I need a stick or give verbal abuse because they think the stick is simply a badge to gain sympathy and benefits. Those people think that I am a fraud, when I can barely walk sometimes. Basically, people are horrible and make all sorts of negative assumptions about other people with no basis in reality.

The second story above gives a glimpse at the reality of trying to get benefits when they are actually needed. Although his gripe about DLA not being backdated to diagnosis or ending work, that isn’t anything new or particularly shocking but it does show that the benefits claim process is already quite harsh enough. Again, I have written about my own problems with claiming benefits on this blog, particularly in The benefit claims ordeal. Claiming benefits is hard. Very hard. The application process is hell. The forms are long and very difficult to fill in. It is nearly impossible to highlight the problems that an illness or disability can cause without getting a professional to fill in the form. The Work Capability Assessment is heavily weighted against the claimant and deeply flawed. While 40% of cases that are found fit for work are eventually overturned at appeal, many people give up before the appeal and for those that don’t the process is long and torturous. People even die from their illness before winning their appeal.

Even when successfully claiming benefits for illness or disability, living on them is no easy task. In the story mentioned above, a charity has to provide much of the care and resources needed by the writer of the article, but their funding has been cut too. When living on benefits management of the household accounts has to be perfect or people soon find themselves in bank charges hell. Shopping has to done on an incredibly tight budget and principles have to be compromised in order to get things that are needed. Lisa Ansell wrote about this in her article I can’t get this out of my head. Cooking  can often take the form of desperation stew – see Poverty Cooking for that recipe. Living on benefits means never quite having enough to live on and to pay all the bills. Parents on benefits often go hungry so that their children can eat.

Once again I have to say that the government, the tabloids and the general public disgust me. Current thinking is not very far from repeating history. It has to change.