ME and my ATOS test

by Ms. Humphrey Cushion (@humphreycushion)

Today I had my dreaded medical examination with ATOS in Luton. I arrived on time, thanks to The Mothership chauffering me. She couldn’t get parked anywhere near the centre (which has NO designated parking – what a massive fail that is) so she drove to a side street and I went in alone.

I was in a great deal of pain today, mostly due to my neck flaring up and so the receptionist let me sit down and she came out of her office to “book me in”. After a 15 minute wait, I was asked to walk down a long corridor to meet Dr D.K.Mallick. Dr Mallick was lovely, which really surprised me as the last “Dr” I saw there was extremely cold and defensive with me.

He began by asking me about my recent foot operation, moving on to cover my last employment, medication, Chronic Fatigue Syndrome, Home life, neck problems and Mental Health. This took over 3/4s of an hour. It should have taken half of that time.. The reason? The computer system for Luton and several other towns (names escape me but they were local), has had “issues” since December. Where they used to handle 10 claimants per day, now they are lucky to see 6. At one point he was so frustrated and embarrassed he threatened to walk out in protest. I am pretty sure it is a “sharing” issue as the form he fills in is online. Possibly the broadband speed needs increasing. Anyway, I’m not a computer expert but it’s pretty much fucked up borked.

Dr Mallick skipped through a few points (including the physical exam) as he was so stressed and could see I was in a lot of pain. He did have a look at both of my feet though and told me that I would probably be called back in 6 – 12 months. Luckily for me, I won’t have to go back as I have been offered a job working from home. My Fabulous New Bossman (FNB) knows all about my health issues and is happy for me to do what I can, when I can. I have, for once fallen *on* my feet instead of falling because of them!

Something struck me though during the process, he kept referring to CFS in a “mental” disorder, rather than a neurological condition. I called him out on this at the end of the session and he explained that the computer test is set that way.. However, this link from @latentexistence clearly shows that CFS is regarded as a physical condition for DLA claimants. I hope that when the current ATOS test is reformed, this is corrected.

Although my examination went well today and the good Dr told me that I should have passed with no problems, the ATOS test is badly managed. Claimants who should be exempt are still being called in, the current test is a “tick box” one which is simply not working.

Please sign the petition below if you care about this important issue.

http://www.gopetition.com/petitions/sack-atos-healthcare/sign.html

Want to make an FOI request about ATOS? Click this link: http://foiwiki.com/foiwiki/index.php/Main_Page

Behind The Scenes

My arch-nemesis is the common cold. My other disabilities are something I'm used to, and, frustrating as they may be sometimes, they are a part of me. But colds get me down. That said, my discussion of my virus-riddled body isn't (just) a symptom of abject self-pity.

There is a lot going on behind the scenes at The Broken of Britain this week. Left Out In The Cold has generated a lot of attention for the campaign against the Welfare Reform Bill, and most of the work has involved dealing with this.

The most interesting payoffs have come from consistently lobbying MPs of all political persuasions.The problem with this is that, sooner or later, successful lobbying will mean that you get invited to meeting under the Chatham House Rule, meaning that we could tell you what was said, but not who said it.

Accepting such an invitation would reduce us to the same standards as the big charities before the Welfare Reform Act 2007. When The Broken of Britain was set up, we decided to be a voice for disabled people but not an unelected spokesperson, like the big charities, making decisions for all disabled people.

On the other hand, going to the meeting is recognition of our very real concerns about the Welfare Reform Bill. There is a slim opportunity that we may be able to push forward our suggested amendments to the Welfare Reform Bill, and we can definitely discuss the "anti-disability" provisions and the failure of DLA.

So we have to ask the people who matter: do you want The Broken of Britain to go to the meeting? If so, what do you want us to say? This is for you to decide.

This is where the cold enters the picture. The decision is yours on principle. But I also have a cold and my head is fuzzy, so I'm delegating. I'm off to bed...

The Cost Of Living #TBofBTT

by Latentexistence (@latentexistence)

I have just started taking pregabalin (Brand name: Lyrica) to treat the neuropathic pain that I have been suffering from. When I was discussing it with some friends I discovered something that seemed quite shocking to me. In the USA there are people that need this drug, have been prescribed it by their doctors, but have been deprived of it because their insurance companies have refused to pay for it. This refusal could be because they do not think it appropriate, or do not accept the reality of an illness that is not necessarily detectable in tests, but the most common reason is expense.

It hadn’t actually crossed my mind that pregabalin might be an expensive medicine. My doctor has a nice flowchart of what drugs to try for my illness and what order to try them in, and this one was next on the list. In my blissful ignorance, I simply take the prescription from the doctor to the pharmacy, and walk away with the drugs. All costs covered by the NHS. Since I have long term chronic illness, I am exempt even from paying the £7.20 prescription charge that most people would pay for their drugs.

All of this got me thinking; what if I had to pay for my medicine? Would it even be possible? I currently have twelve medicines on prescription. If I were to pay even the standard prescription charge, with the NHS covering the rest, my medicine bill would come to £86.40 per month. At the moment we are struggling to even pay for our rent, bills and food, so this cost would be crippling. But without the NHS? My drugs would cost much much more. I did some research, and I present here what I would pay for my most important drugs.

* Metformin (Glucophage) £12.28
* Gliclazide £1.86
* Olmesartan Medoxomil £10.95
* Bendroflumethiazide £0.91
* Pramipexole £35.66
* Sumatriptan nasal spray (Imigran) £35.39
* Naproxen £4.20
* Pregabalin capsules (Lyrica) £64.40
* Codeine £5.39
* Paracetamol £1.62

Total cost: £172.66 per month.

In the USA it would be even worse. Here are the best prices that I could find. (Via www.pharmacychecker.com)

* Metformin (Glucophage) $50.40
* Gliclazide $17.22
* Olmesartan Medoxomil $18.20
* Bendroflumethiazide – no price found
* Pramipexole $29.68
* Sumatriptan nasal spray (Imigran) $114
* Naproxen $11.76
* Pregabalin capsules (Lyrica) $161.28
* Codeine – no price found
* Paracetamol (Acetaminphen) – no price found

Total cost: $411.54 (£255.68)

That is an astonishing difference between UK and US price.If I had to pay all of it myself, I would have to go without many of my medicines, which would basically leave me unable to control my diabetes and my migraines. Apart from the Lyrica, my pain medication is actually very cheap and I would still be able to afford that. Without diabetes medication I would be practically unable to eat and would still have hyperglycemia. Without sumatriptan, my painkillers would not help and the other symptoms of migraines would keep me firmly in my bed. Fortunately the NHS covers my costs and I have some chance at recovery and leading a relatively normal life. Some people will no doubt argue that it is unfair for me to drain so much money from the NHS. They have failed to understand how this system works. When Aneurin Bevan launched the NHS in 1948 he gave the NHS three aims:

* That it meet the needs of everyone
* That it be free at the point of delivery
* That it be based on clinical need, not ability to pay

Treatment for any given individual may very well be expensive, but it all works out in the end. I have paid National Insurance whenever I have been well enough to work. I receive my medicines without paying when I need them. With those medicines, I may well improve enough to work again and pay more National Insurance. The NHS provides for both people that will one day repay their healthcare costs, and people that might not. Even those that will never be able to work and contribute financially will still contribute something to their society by their very existence. And regardless of future financial contribution, would you really want to live in a world that simply leaves the sick to die?

I am very glad that we have the NHS and I will fight as hard as I can to keep it.The government must not be allowed to ruin what we have.

Where Do We Go From Here?

During yesterday's session of their spring conference, the Liberal Democrats passed a motion to keep the mobility component of Disability Living Allowance for those in residential care. The Government's proposal of stopping payment of the mobility component to those in residential care has been one of the most visible issues of DLA reform, and we should be glad that the Lib Dems will now oppose it and we can only hope to keep the pressure and get them to support other amendments to the Welfare Reform Bill that will undo more of the 'anti-disability' proposals.

This is what The Broken of Britain will be doing in the next few weeks - consolidating the real gains made during the Left Out In The Cold. Most obviously, there is the issue of the Labour party. Having shown their loyalty to Ed Miliband in the Second Reading, many Labour MPs are keen to amend the Bill on many fronts, and not least on the issue of disability. There is obviously some real room for discussion here.

The Liberal Democrats have also shown, by accepting the motion above, that they are open to discussion on this issue. Until the Coalition showed up the Lib Dems had a reasonably good disability policy and a number of disabled supporters.

Finally we come to the Conservatives. The obvious division is between their frontbench members and the 1922 Committee of backbenchers. A good number of backbenchers may be sympathetic to arguments, and could be persuaded to accept some, if not all, of our suggested amendments.

And all of this means that we need to keep pushing the same arguments we've been making since last December, indeed since the issue of DLA reform was first raised by George Osborne in June. The argument must be made far and wide - and especially in the places where we can talk to a largely Conservative audience. We must tell them that:

1) the Government has already stated the intention of a 20% cut even though fraud is estimated at 0.5% - this equates to 620,000 genuinely disabled people thrown off the benefit.
2) the Government lacks evidence for their case for reform - only two pieces of DWP research support limited reform. There is certainly no evidence to support Maria Miller's claim that DLA "is almost a case study in how not to run a benefit."
3) the way the reforms are designed could mean a million or more losing out - either being reclassified or disallowed from claiming

More generally,an argument that has not been made anywhere is that this Government's aims for DLA are not only unclear, but are actually contradictory. Individualization of service and standardization of service are both reasons offered by DWP, even though they are incompatible aims. You can't ensure that payment is personalized according to each individual's need if you also want to standardize payments and make sure that everybody gets the same. There is no way to set up an objective, standardized test which treats all claimants the same if you also want the test to be responsive to each individual's needs.

Individualization and standardization are mutually exclusive, and pretending otherwise is ludicrous, This is the message we must keep hammering home, anywhere and to anyone. If you have any ideas about how to get this message into the mainstream, please e-mail me with your suggestions at: rhydian@thebrokenofbritain.com