Iain Duncan Smith is proud of getting people off benefits

IDS - "We've heard enough of you"
“We’ve heard enough from you.”

Owen Jones confronted Iain Duncan Smith with the names of two people who have died as a result of the work capability assessment. He did not react well. I urge you to watch this video of the last part of Question Time, particularly the last minute if you want to see what IDS is really like.

“Hang on a second, we’ve heard a lot from you. Let me tell you something. I didn’t hear you screaming about two and a half million people who are parked, nobody saw them for over ten years, not working, with no hope, no aspiration, we are changing their lives, I am proud of doing that, getting them off benefit is what we are going to do.”

Iain Duncan Smith is proud of getting people off benefits. Never mind that there is no work for them to go to even if they can, and that the way lives are being changed is by sending people further into poverty and homelessness. Not only that, but he thinks that being “parked on benefits” and left alone is a bad thing. Well those of us on permanent sickness and disability benefits do have hopes and aspirations. We hope to not have too much pain today and we aspire to getting the care that we need so that we can undertake something entertaining that isn’t lying in bed waiting to die. We probably don’t aspire to being a rich Tory, which is probably similar to being dead in the head of Iain Duncan Smith. As for nobody seeing sick people, now they are being reassessed so frequently that they are committing suicide. Winning an appeal at tribunal often leads to an immediate call to another assessment.

https://twitter.com/crazybladeuk/status/271197324594786305

Dead people don't get benefits
Dead people don’t get benefits – cartoon by @dochackenbush

Further Reading

Brian Mcardle: Atos benefits bullies killed my sick dad, says devastated Kieran, 13

Karen Sherlock: How many more disabled people will die frightened that their benefits will be taken away?

Karen’s Story – RIP Karen Sherlock, Disability Rights Campaigner – Died June 8th 2012

Hundreds more: The People’s Review of the Work Capability Assessment

 

Disability hate – from people who should know better

I’ve just been told about this rather disheartening incident involving my dad this morning.

My dad has a friend called Ray. Ray is blind and physically disabled. He has a guide dog, and uses a walking stick too. My dad has serious spinal problems and also walks with a stick. Both of them are entitled to use blue badges for disabled parking.

My dad and Ray went to McDonalds for breakfast this morning. This particular branch has just two disabled parking bays. This is not normally a problem but today when they arrived both were in use. One of the cars, though, contained a woman and a child with a blue badge on display who were sat eating food from the drive-through. My dad had to stop and let Ray and his dog out in the road and then park in a standard bay with further to walk.

My dad stopped and pointed out to the woman that she was blocking a disabled parking bay causing problems and risk for them and that this wasn’t necessary since she wasn’t getting out of the car and could therefore park in a bay further away from the restaurant. (He does this himself when he is not getting out.)

She was immediately hostile, announcing

“You don’t pay for my car.”

My dad pointed out that this wasn’t the point, but then she noticed his walking stick. At this point she actually threatened to physically hurt him, finishing with

“Walk away know while you still can, old man.”

My dad sensibly left it there.

This incident makes me sad because not only was this abuse of a disabled person but it came from the mother of a disabled child who really should know better. The rules for parking don’t explicitly state that she shouldn’t use the bay but they do say that you shouldn’t sit and wait for a non-disabled person and that consideration should be given. (See below.) Even so, she was hostile and abusive when there was no need to be. It also makes me sad that the woman’s first reaction was to defend her possession of the car, clearly related to public attacks on Motability in recent months.

Who can use the badge?

The badge is for your use and benefit only. It must only be displayed if you are travelling in the vehicle as a driver or passenger, or if someone is collecting you or dropping you off and needs to park at the place where you are being collected or dropped.

Do not allow other people to use the badge to do something on your behalf, such as shopping or collecting something for you, unless you are travelling with them.

• You must never give the badge to friends or family to allow them to park for free, even if they are visiting you.

• You should not use the badge to allow non-disabled people to take advantage of the benefits while you sit in the  car. Although it is not illegal for a badge holder, or a non-disabled person waiting for the badge holder to return, to remain  in the vehicle while the Blue Badge is displayed, consideration should be given to using a car park whenever possible.

• It is a criminal offence to misuse a badge. This includes people other than the badge holder taking advantage of the parking concessions provided under the scheme.

Taken from The Blue Badge scheme: rights and responsibilities in England, page 8

 

The Paralympics tell us nothing about most sick or disabled people

I’m struggling to believe that I have to say this, I really am, but here goes:

The Paralympics tell us nothing about most sick or disabled people.

No, really, they don’t. The athletes taking part in the Paralympics, just like those in the Olympics, represent the elite. They are the people who are lucky enough to have time for training, money for equipment, the physical ability to push themselves that far. Just as you could not expect any person who is not yet disabled to run as fast as Usain Bolt or to dive with as much skill as Tom Daley, you cannot expect a disabled person to run like Oscar Pistorius or swim like Ellie Simmonds.

For sick or disabled people the struggle is not to get to Paralympic standard but to achieve the same standard as most people who are not disabled. That’s what disabled means. For whatever reason the combination of the way that society is arranged and the impairment that a person has means that they are unable to function in the same way as most. Disability makes everything harder. It makes things more exhausting. It makes things more expensive. It makes things take longer. Sickness and disability can require everything that a person has and still not allow them to function. For many when the impairment is too great no amount of adjustment or struggle can overcome that, although technology and the efforts of those around them can provide other means for a happy life.

For a lucky few that sickness or physical impairment is not a barrier to Paralympic greatness. Even then, though they may be able to run or swim or shoot they might still not be able to dress themselves or wash themselves or cook for themselves. We should celebrate their sporting abilities, but we must not think that sporting ability tells us anything else at all about Paralympic athletes or any other sick or disabled person.

Mental illness is more disabling to me than physical illness

I have reached the point where mental illness is more disabling to me than physical illness. Before I became depressed I was physically ill with ME, diabetes and migraines and I was limited by fatigue and pain but I could write, I could repair computers, and I could focus to read or watch TV, as long as I planned around my illness. With regular rests and flexible timing I could engage with the world and get some things done. Now, though, depression and anxiety steal my focus for hours at a time and prevent me from completing even the simplest task. I start writing blog posts and manage one line. I start watching TV and manage 2 minutes of a half hour episode. I start games then give up. I drive to shops or friends and then can’t get out of the car. I look at my forms for help with power wheelchair costs and freeze up. The phone rings and I pull the duvet over my head.

My physical and mental illness seem to feed off each other too. If I reach a point of (even more than normal) exhaustion then I will also become overtaken by despair. Depression and anxiety also make it impossible to work towards improving my physical health. I need to get a routine and start pacing my activity but mental health problems mean that I can’t even think about doing things when I need to.

I’m not sure that I have a point in this blog post other than wanting to rant a bit. I suppose if anything my point is that depression is not some minor inconvenience. It is a real, crippling illness that will destroy a life just as effectively as any physical problem.

No wheelchair for you!

My old broken power wheelchair
My old broken powerchair

I wrote back in March about the death of the power wheelchair that I had been given and my quest to obtain a new one.  It was old but it served its purpose in letting me go further from home and use public transport without requiring another person to push my wheelchair. Since my ability to walk is fairly limited I do need a wheelchair when I am out of the house. There are four ways that I know of to obtain a manual or powered wheelchair.

  1. The NHS
  2. Lease one from Motability using the mobility component of DLA
  3. Buy one
  4. Get a charity to buy one

It should be obvious that buying one is not really an option for most people living on sickness and disability benefits. Many people who need a high end power wheelchair do lease one from the Motability scheme however that option is not available to those who already use their DLA to lease a car through the scheme, or who do not receive DLA at all. In some circumstances a charity might be willing to foot some or all of the bill for a power wheelchair. Specialist charities for certain diseases or impairments might do this although in practice most do not have this option either. In my case there is a charity that helps people in the area that I live in who might be able to pay for part of the cost of a power wheelchair for me but since charity funds must be carefully looked after they require me to need a wheelchair but be unable to get one from the NHS before they will help. That leads me to the main option, to ask for a wheelchair from the NHS.

Soon after my power wheelchair broke an occupational therapist referred me to Worcestershire Wheelchair Services and I was told that I would get an assessment but that I would have to wait a long time. In the meantime I bought a manual wheelchair using my credit card. I have a bankruptcy in my past because of my illness so that credit is at an interest rate of 34% APR.

I knew when I was referred for a wheelchair assessment that I would not qualify for a power wheelchair because I only need a wheelchair when out of the house but that was OK because once I had an assessment I could turn to my local charity. As I understood then from other doctors and therapists I should qualify for a manual wheelchair, although probably one with small wheels that required an attendant to push it because self-propelling a wheelchair soon hurts my arms as much as walking hurts my legs. (This is why I purchased a self-propel chair, since I would like to be able to turn myself around even if I mostly have someone pushing.)

Then, today, I received this letter from Wheelchair Services. (Click to enlarge.)

Letter from wheelchair services

The letter informed me that I would not receive any wheelchair from the NHS because in Worcestershire they are

“Currently only able to supply wheelchairs to people who meet higher level needs i.e. to those clients who have a permanent mobility problem, who are unable to walk and who require a wheelchair within their own home.”

So, because I can walk or stagger around at home, I will not receive any kind of wheelchair to help outside where I cannot walk more than a few metres or stand up for more than a few seconds – not even a manual wheelchair. They won’t even visit to assess me. There are also many people who need a power wheelchair but are unable to get one from the NHS because they, like me can walk to some extent around their own home. In a lot of these cases they would use a wheelchair inside if only they could fit one in their home, but because they cannot they too are denied any help from wheelchair services. I know of several people who are currently trying to raise funds through donations to purchase their own power wheelchair because of this.

I’m not too worried about this in my own case because I have the manual wheelchair that I bought, and I have my wife to push it much of the time, and I still hope to get help from a local charity. I am far more worried about all the other people who haven’t been so fortunate and have no chance to buy a wheelchair, no charity help, no car and no one to offer lifts. I struggle to understand the justification for the NHS in Worcestershire not giving a wheelchair to people who need one but only when outside. If applied nationally, this policy would trap tens or hundreds of thousands of people in their own homes, unable to go out to medical appointments, to buy food or to visit family and friends. I don’t know how long this policy has been in place in Worcestershire but I hope that it is the only area doing this.

Worcestershire Wheelchair Service informed me that their qualifying criteria have been this way for a number of years due to low funding. Worcestershire is not looking like a good place for a chronically sick or disabled person to live right now; Worcestershire council are planning to remove funding for care at home for a large number of people and send them to live in care homes instead. This is a huge backwards step, a removal of freedom for a lot of people and reverts to the old method of locking those with disabilities away from society. This policy on wheelchairs will ensure that more people are trapped at home and so require care from the local authority, which in turn may put them into a care home.

Are we as a country really so short of money that this is the route we want to take?

Parking bay badge blues

The following is a guest post by Christine Sumpter. (Yes, she is my mum!)

My husband has a blue badge and a Motability car. He has a badly damaged spine and scar tissue on his nerves. Yes, sometimes he can walk without the aid of his stick, with a pronounced limp and the ever-present danger of stumbling or his leg giving way completely. He is stubborn and often walks more than he should, choosing to ignore the pain. He gets ‘looks’ from other disabled parkers, particularly older people, mainly because he doesn’t look very disabled and he looks like the proverbial ‘plumber with a bad back.’ Actually he is an ex-plumber with a severely damaged back. And how can anyone tell from looking how much pain he is suffering?

There seems to be a common misunderstanding of the nature of mobility problems. Our local supermarket has located the blue badge parking spaces on both sides of a central walkway extending nearly to the far edge of the car park. It seems that they are under the misapprehension that all disabled parkers are wheelchair users and can manage the distance. Disabled people who can walk (after a fashion) also need to be able to open car doors fully and, more importantly, need to park near the building. The supermarket put a metal bollard in the centre of the crossing place from the car park, and it had to be pointed out to them by a friend of mine that her blind (and lame) husband kept falling over it. In icy conditions the path is gritted but those vital areas between the bays are not, neither is snow cleared from them.
There does not seem to be any policing of disabled parking bays so that on rainy days most of the spaces near the building are occupied by anyone who doesn’t want to get wet, leaving the people entitled to parking there to make the long, soggy trek from the other end of the walkway. And the disabled parking bays are used as an unofficial staff car park for the night shift, presumably because they think that disabled people don’t go out after dark.

 

Legs, wheels and money

My old broken power wheelchair
My old broken powerchair

My electric wheelchair broke a couple of weeks ago after going up a too-steep ramp into a train, toppling backwards and then falling forwards fairly hard. That was quite inconvenient, especially when I discovered that the motors and brakes have burnt out and it will cost about a thousand pounds to fix. Since then I have had to fall back on a manual wheelchair, pushed by my wife. I can move my own wheelchair, just about, but it is still painful and exhausting for me. Fortunately I have just got a new car, so I can drive to most places and then use the wheelchair on arrival. Unfortunately, the manual wheelchair that I was given by family doesn’t fold up enough to fit in the back of my car.

I will qualify for a wheelchair from the NHS, and so I have asked to be referred to the local Wheelchair Services for an assessment. I am slightly stuck though. Walking and standing around result in high levels of pain and fatigue for me, as well as leaving me in danger of losing my balance and falling over. Despite this, I can walk around at home most of the time with only an occasional fall. NHS rules say that I can have a manual wheelchair for use outside, but because I can walk around at home I will not qualify for a powerchair even though I can’t propel myself most of the time. In fact, I probably won’t even get a self-propelled wheelchair since moving it myself can cause some pain and fatigue too, so I will end up with an attendant wheelchair, requiring someone to push me with no option to move myself at all. (See page 16 and 17 of this document for the full rules.)

Because a referral to the wheelchair service will quite likely take a few months, (I won’t be a high priority) and because I will probably get an attendant wheelchair rather than a self-propelled one, I bought a new wheelchair yesterday – a shiny new Karma Wren 2 self propel. The chair cost me £279 from a local shop called Indy Mobility. I could have found it slightly cheaper online but the staff at Indy Mobility were very helpful and put up with me for a couple of hours while I looked at all the options. They also didn’t charge me for the work done so far on my broken powerchair.

Karma Wren 2 wheelchair
My shiny new wheelchair

I was surprised how much easier the new chair is to self-propel than both my old one (and it is old!) and my dad’s one which I borrowed when my power chair broke down. That is partly because the new chair is made from lightweight aluminium but I think also due to it not being worn out. It is light enough that I can lift it into my car myself as long as I am not too tired at the time. It fits nicely in the boot of my car, as you can see in the picture below.

My new wheelchair in the back of my car
My new wheelchair in the back of my car

Wheelchairs are one of those extra expenses that disabled people can have which Disability Living Allowance is supposed to help pay for. While chairs are available from the NHS, it is quite common for them to be inadequate or to take a long time to get, even apart from cases like mine where I won’t qualify for a power chair which would help me the most. The Motability scheme which leases cars to disabled people in return for the mobility allowance from their DLA can also lease high-end powerchairs to them but I can’t do that because I already spend my DLA on a Motability car so I have had to buy my wheelchair with a credit card at very high interest. I think there are quite a few people stuck in this situation including Kaliya (@BendyGirl) who is currently trying to raise funds for a powerchair of her own. She really needs one to get around outside – just see her “deathwalk” video if you need convincing. Kaliya could use a powerchair inside as well, except that her flat does not have enough room for one. You can donate to Kaliya’s powerchair fund by sending money with Paypal to wheelchairforkali@carolineengland.co.uk or visit her blog post about it.

Karma Traveller 2 powerchair
Karma Traveller 2 powerchair

I have a possibility of getting part of the cost of an powerchair paid for by a local charity – the same one which gave me a small grant when I went to university and gave us food money last year when our benefits were screwed up. They require me to have attempted to get one from the NHS first, and so I must wait until I have been assessed before I can do that. I am hoping to take a voucher towards the cost of a wheelchair rather than a wheelchair itself from the NHS so that I can then put that voucher together with a charity grant if I can get one and buy a powerchair. I plan on getting one that is small and light and can come apart to go in my car – my old one weighed 90kg and even healthy people struggled to lift it. Indy Mobility suggested a Karma Traveller 2 which I think costs about £1,700, although I will have to find out what else is available. For now I will just have to rely on my wife to push me.

 

Bringing the computer to me

My various illnesses keep me in bed a lot of the time. Not only that, but quite often I don’t have much choice about what position my body goes in. At my better times I can sit up in bed with my laptop or book on my lap. If slightly worse then I put my laptop on the shelf next to the bed and lie sideways to use it, but that can quickly lead to pain. If I am really exhausted then I quite often lie on my front with my phone on the bed next to my head and one hand on the phone to type with, however this still causes pain in my arm, hand and shoulder and sometimes my lower back too.  At my worst points the only near-comfortable position is completely flat on my back with my arms on the bed by my sides. This obviously makes it difficult to read a book, or use a laptop computer, or even just use my smartphone.

I do have other options for entertainment at these times – I could use the radio or an MP3 player to listen to music or audio books. However I use my computer extensively to keep in touch with friends (and chat to people to minimise my depression) and to write on my blog. If I have any chance of paid work in the future it is likely to be writing or programming with the aid of my computer and so being able to use it more in bed is quite important.

Ultra 510i Long Reach Inverted Wall Mount LCD Arm
Ultra 510i

I’ve been thinking about solutions to this problem. The logical solution to me would be to mount a computer monitor over the bed on an arm attached to the wall. This isn’t exactly easy since there is a shelf unit between the bed and the wall to the side of me which is quite a big gap to bridge. I could attach an arm to the wall behind the bed but again it has to extend quite a long way. In addition I want the monitor to be able to swivel for viewing above me or in front of me. There don’t seem to be many arms that fit the specification, although I have found two from ErgoMounts that might work. The Ultra 510i Long Reach Inverted Wall Mount LCD Arm (Pictured to the right) costs £411 while the Wall Mount VisionPro 500 Series Long Reach Gas Assisted LCD Arm (Shown below) costs £215 but is not quite long enough to be comfortable. With this solution I would have a computer of some sort next to the bed, and a wireless keyboard and mouse on my lap.

Wall Mount VisionPro 500 Series Long Reach Gas Assisted LCD Arm
VisionPro 500

 

Such a system might work, but is quite expensive and limited so what are the other options?

Duncan from Trabasack suggests that I could use a Trabasack Mini lap tray/bag to suspend a netbook computer from. The Connect version has a velcro front and points to attach straps, so I could attach the netbook to the Trabasack with velcro and use the straps to hang it from a simple arm attached to the wall which should be cheaper than an articulated arm. The downside of this is that I would have only the small screen of my eeePC 900 and it isn’t very powerful either, but I can use it to get remote control of the PC on my desk which would do all the work. Duncan has sent me a Trabasack to try, so I’ll report back on how that goes.

Trabasack Mini Connect eee PC on Trabasack

Another option which has caught my attention is virtual reality goggles. Basically glasses with screens inside, the best available are made by Vuzix. There is a whole range of Vuzix iWear. The Wrap 280 widescreen is the bottom of the range, but it has a resolution of 384×240 (That’s how many dots fit on the screen) which makes it useless for text-based computer work and barely usable for watching video. It is, however, available for £99 or even cheaper refurbished. The top of the range Wrap 1200 has an almost-acceptable resolution of 848×480 (still pretty low) but costs £399. The Wrap 920 looks like it might be worth a try though. It has a resolution of 640×480 which is what computers displayed about 18 years ago but is only slightly lower than what my smartphone displays so it might be usable. The 920 is £199 but is also available refurbished for £129. All three of these options would need a £40 adapter to plug in to the VGA output of a computer. I could use one of these displays in any position in bed, but whether I can use them for writing a blog post or chatting to people remains to be seen.

Vuzix Wrap

 

Microwriter - the original chorded keyboard
Microwriter - the original chorded keyboard

Then there is the question of keyboard and mouse. While it is straightforward to use a mouse on the bed, even with my eyes covered with display screens, a full size keyboard isn’t ideal. I can touchtype but I still have to keep my hands up on the keyboard on my lap rather than down by my sides where they are more comfortable. To solve this problem I have been looking at Chorded Keyboards. These devices use only a few buttons to type the whole alphabet by pressing combinations of keys at the same time. The original Microwriter would have been useful here but two modern versions I am considering are the CyKey and the Twiddler 2.

The CyKey (shown below) has nine keys instead of six but works with combinations of keys in a similar way to the Microwriter. It costs £74. It should work alright when placed under my hand on a bed and allow me to type without moving my hand around. Unfortunately I will still have to move my hand to use the mouse.

CyKey chorded keyboard
CyKey
Twiddler 2 chorded keyboard
Twiddler 2

The Twiddler 2 (pictured on the right) has a few more keys than the Microwriter or the CyKey but the principle is the same. It has a thumb-operated pointer stick too so that it can replace both keyboard and mouse. The Twiddler is popular with designers of wearable computers because it can be used without sitting down and using a table. It is more expensive than the CyKey at $199 plus postage from the USA but looks to be the best option if I can find the money.

I am also planning to use a Raspberry Pi as my bedroom computer. The Raspberry Pi is a new tiny cheap computer intended for use primarily to encourage children to learn computer programming but it looks to have many other uses. It costs about £29 for the top model and runs Linux. I intend to use it as a Thin Client, to connect to my PC via Remote Desktop, meaning that it will show me what is on my PC in a different room, and my keyboard and mouse in front of me will control that PC.

All of this portable technology has given me some interesting thoughts. I could team up a Raspberry Pi with a Vuzix Wrap 920 display and a Twiddler 2 chorded keyboard. Add in my USB powerpack and a WiFi/Bluetooth adapter to connect to the internet, and I will have a complete wearable computer for use anywhere. I quite like that idea if I can possibly find the money. Now, about my early birthday presents…

Raspberry Pi
So new it hasn't got a case yet

Review: Tabtime Super 8 pill reminder

Tabtime Super 8 - closedI have been using this pill tray for a few weeks courtesy of Eleanor Independent Living Aids. The concept is simple but incredibly useful – it combines a pill tray  and alarm clock in one.

The Super 8 is a blue rectangular box made of two halves folded together in a clamshell format a bit like an older folding mobile phone. From the outside there isn’t much to see apart from a battery compartment on one edge and a red LED light on the front. The Tabtime is easy to open: the right edge has tabs with cutaway parts to allow easy opening with less-than functional fingers and the magnet which holds secures the Tabtime has just enough force to keep it shut but opens easily with minimal pressure.

Tabtime Super 8 - tabs for opening

The Tabtime opens to reveal a pill tray on the right with eight compartments and a large clock on the left. The pill compartments are again easy to open, with a tab protruding from the edge of the lid which can be lifted easily. For the most part the lids are secure, although I did find some becoming loose when opening the opposite compartment. This isn’t a problem when the device is closed as the compartments are kept shut by the folding of the two halves. I found the compartments are about the same size as my seven-day pill tray with enough room to hold quite a few tablets, or four of my huge Metformin tablets.

Tabtime Super 8 - open

Turning to the clock then, it has a nice large display which shows the the current time, and it has several buttons for setting the timers and a volume switch with options for Hi and Lo. Personally I have the volume always set to high as I have found that the low setting is not audible from the next room, or when the Tabtime is kept in a bag while outside. The high volume setting is loud enough most of the time but could do with being a little bit louder.

The Tabtime very usefully has a timer for every pill tray, eight in all. Used in this manner it is possible to have an alarm go off at the same time every day for each set of pills. On opening the Tabtime up after an alarm has sounded the screen shows a number along the top edge to indicate which alarm sounded and which compartment to take pills from.

If like me you don’t always take pills at specific times, painkillers, for example, there is also a countdown timer which I keep set to four hours. After taking my painkillers I can bring up the countdown timer on the screen – an action which unfortunately requires nine presses of the Mode button to cycle through the eight alarms – and press the Minute button to start the countdown to my next dose. Used in this way it does not give the benefit of indicating which pills to take, but that isn’t a problem if working through the compartments in numerical order.  The red light on the front of the Tabtime is very useful since it starts to flash when an alarm sounds and it will keep flashing until the Tabtime is opened, even if the alarm sound stops. That makes it easy for me to know when I can take painkillers by looking for the red light even if I miss the alarm.

Of course eight compartments isn’t enough to replace my seven day pill tray. I tend to use my larger tray as usual, but keep painkillers in the Tabtime where I can make use of the alarm. When I go out I can fit my painkillers and all the other pills that I need for a day in the Tabtime and keep it in my bag.

Seven day pill tray full of pills

The Tabtime isn’t perfect. It could do with a louder alarm, and perhaps an extra button to access the countdown timer in a less tedious way but it is very useful as a reminder while at home and for carrying pills when I am out. It serves its purpose very well and if you have to take a lot of pills then I can thoroughly recommend that you get one.

You can obtain a Tabtime Super 8 from Eleanor Independent Living Aids for £20 including postage.

Benefit guilt

I recently wrote about my income in detail. I did so partly because the benefits that I receive were listed in a newspaper (My own fault) without actually explaining them, and the amounts caused a few negative comments.

Since making my income public one thing that has been bothering me is that while my wife and I now receive enough money to live on and DLA to provide for the extra costs of my care and mobility, a vast  number of my friends do not. And I feel sort of guilty about that. I know that I shouldn’t, I am getting the proper benefits for my circumstances, but I feel horrible that other people – many with greater need than me – don’t get the help that they are supposed to get.

I went through a Work Capability Assessment with Atos and I was placed in the support group. I know that I am sick enough to merit ESA and DLA but it was always in doubt whether Atos would recognise that. I can’t help wondering what would have happened if my journey to the assessment centre hadn’t been so awful. (You can read about that travesty on a previous blog post.) If I hadn’t arrived shaken, stressed and exhausted perhaps my assessment would have gone quite differently – Atos have been criticised for ignoring variable health problems and could easily have judged me differently if I had appeared well that day.

Perhaps it is chance that I ended up in the Support Group for ESA rather than the Work Related Activity Group or even found fit for work. But then my DLA was awarded on the basis of the Work Capability Assessment too, even though that isn’t supposed to happen until PIP is introduced. So is that two benefits received by pure chance? Being awarded ESA helped me to get DLA and getting DLA has increased the amount that I get from ESA, and both of those ensure that I get housing benefit too. At some point I may get carers allowance although that might lower the amount that I get from ESA.

The point is, I now have enough to live on without being in poverty and always struggling to pay the bills. Many other people are not so lucky. What I really want is for access to these benefits to be available to all the other people that need it. I have so many friends who haven’t got the benefits that they so desperately need. Friends who can’t walk, or can’t get out of bed, or can’t cook for themselves. Friends who have been through the assessments by Atos and refused on absurd grounds. Friends who are in hospital near death and don’t get benefits. I was really terrified that I wasn’t going to get my ESA, and the form filling for benefits and the assessment process itself made me more stressed which led to me being more physically ill too.

Even when people have managed to get all the benefits to which they are entitled it isn’t always enough. I need relatively few adjustments to live. A wheelchair, a shower seat. Some people need hoists and lifting equipment and wet rooms and stairlifts and bigger rooms to fit it all in… and the list goes on. Of course some of that can be paid for in other ways such as from council funds or (until now) the Independent Living Fund but many people end up sorting out their own adaptions. I talked to my GP about getting an NHS wheelchair yesterday and she suggested that it would be quicker and easier to buy one for myself. (Not that I can’t try to get an NHS one.) That happens a lot with costlier items too.

Clearly the benefits system isn’t great at the moment. It’s obvious that it needs reform to solve these problems. But – and this is an important but – the Welfare Reform Bill doesn’t solve these problems. It makes them far worse. It abolishes multiple sources of funding, it cuts the DLA / PIP budget by 20% and it restricts who can get help and who will receive PIP. Government ministers have told us that those most in need will get more help. What they are less keen to tell everyone is that the extra help for those most in need is being snatched away from those who are only quite in need. If you need help but not loads of help, that’s tough. Because the government says you’re not going to get any help at all.