Unhelpful response to the #WOWpetition

I don't know if you're already aware of the WOW petition. It was started a little over 3 months ago by comedian Francesca Martinez, and is well on target to achieve 100,000 signatures by its closing date. That means it would considered for debate in the House of Commons.

WOW stands for War on Welfare. Because frankly, that's how it does feel. Like this soulless government has declared war on those of us forced to claim welfare benefits.

Let's say you're on Disability Living Allowance, and when that gets changed over to Personal Indepencence Payment you lose out. Well OK, that's just one thing (apart from the blue badge, and Motability car, and disabled railcard, and so on that it passported it you to). Maybe you can manage without the DLA. Maybe.

But you're also on contributory Employment and Support Allowance, and you've been on it nearly a year. So that's about to stop.

And that's before we get anywhere near the changes to Council Tax Benefit, and to Housing Benefit (the Bedroom Tax).

Tens of thousands of sick disabled people are about to go under financially. And this government just doesn't give a damn. Oh, they always have a soundbite:

There's a lot of misleading stories about the impact of our welfare reforms on disabled people, which could lead to unnecessary scaremongering. Our reforms will make sure the billions we spend every year give more targeted support and better reflect today's understanding of disability. Hundreds of thousands of disabled adults and children will actually receive more support than now with the combined effect of benefit changes under universal credit.

Targeted. Some people receiving more support than now. Well, as someone pointed out to me today (thanks Eggy!) all the NHS funds don't get allocated to intensive care: support is required at all levels of need.

So, returning to the WOW petition, what it asks for (among some other things) is a cumulative impact assessment, not looking at the effect of each benefit "reform" (*spit*) separately, but how people will be affected in real life. Real people are complicated. Lots of us claim more than one benefit (partly because the system's so complex!)

When a government e-petition gets 10,000 signatures, the department responsible for it gives a reply. It's taken a while for the WOW petition's reply to turn up: I only just noticed it, and the petition has over 27,500 signatures.

To summarise the reply, it seems to be:

• We're not avoiding you.
• This is hard.
• The policies haven't all been decided yet.
• There are impact assessments for individual benefits or for all tax, benefit and expenditure changes across households, but nobody's ever done what you're asking for, which is in between.
• Did we mention this is hard?

My reply to that would be, with the greatest possible respect (and as civil servants they would know what an insult that is!) pop down to Ryman's, buy a new scientific calculator and get on with it. These are people's lives you're messing around with (at the command of your political masters), and there is a clear case for a cumulative impact assessment to be done.

If you haven't already signed the WOW petition, would you take a look and consider signing it? The more signatures on the petition, the more pressure sympathetic MPs like Michael Meacher can put on the DWP on our behalf.

Thanks!

Edit: I'm all for avoiding unnecessary government expenditure, so I'm sure it would be fine for the DWP to use this cumulative impact assessment, which Scope and Demos have just done. It calculates that those disabled people most severely affected by the cuts will lose £4,600 each year from what are already low incomes. As Richard Hawkes the chief executive of Scope says:

At the moment there’s no place for disabled people in the Chancellor’s aspiration nation.

Sadly, that seems to be very true.

Labour doesn't represent me any more

I have voted Labour at every election since I gained my majority, and became a member of the Labour Party around 1990. I am now going to leave the party, and will not be voting for them at future elections. This is not a decision I've reached easily, so I wanted to explain some of my reasons. From conversations with other people, I know I'm not alone.

I have multiple sclerosis and other long-term conditions. I wish I was well enough to work, but I know I'm not. I don't think I'll ever work again, unless there's something I can do from home, for one or two hours each week, and entirely under my own control as and when I feel well enough.

That being the case, I don't think it's extreme to expect society to provide me, and other long-term sick and disabled people, with support. After all, we consider ourselves to be a civilised country, and as Mahatma Ghandi said:

A nation's greatness is measured by how it treats its weakest members.

According to its website, the first and second values on which the Labour Party stands are social justice and strong community & social values. So Labour must agree that sick and disabled people should be supported, right?

Well...it's hard to tell, really. It was the Labour Party which awarded the contract for the unfit for purpose Work Capability Assessments to the iniquitous Atos. They have not, until recently, spoken up against the Welfare Reform Act, which has forced so many genuinely disabled people into abject poverty, and the fear of which has caused many people, sadly, to kill themselves.

Party leader Ed Milliband has relied too much on "I met a man who..." rhetoric, rather than engaging with the issues and meeting those with first-hand knowledge of living with long-term sickness and disability. Was the party trying too hard to keep the support of the middle ground, poisoned as they were by media and ConDem stories of benefit scroungers?

Through all this, and other issues (that's just the one most personal to me), I kept my faith with the Labour Party.

As I write this, the House of Commons is debating emergency legislation brought in by the government so that they don't have to pay back benefit owed to jobseekers after the Poundland workfare ruling. It seems obvious how Labour would vote in this debate. Labour, yes? It's a debate about the use of people's labour. Whether people deserve to be paid for...their labour. The Labour party came out of the whole workers' rights movement. And think back to those values: Social justice. Community and social values.

Well, the Labour Party have told their MPs to abstain.Yep, not vote at all. I mean...what?

So, Labour Party, it's not me, it's you. You walked away from me. You don't represent me any more. I'll be resigning my membership. Ironically, it looks like I'll be abstaining in future elections, as there's no other party I could bring myself to vote for.

And that's the end of me and Labour.

Thousands of disabled and sick people will be hit by new ESA/WCA changes #esaSOS

On 28 January 2013 the UK government is due to make a set of changes to the Work Capability Assessment (WCA). The WCA is the flawed ‘fitness to work’ test which assesses whether sick and disabled people can get Employment and Support Allowance (ESA): a benefit designed to help and support very unwell or profoundly disabled people into work.  

Although these changes have been advertised as small ‘amendments’, they will in fact have a huge impact on the way people’s illnesses and disabilities are assessed. Many vulnerable people’s needs will suddenly be able to be overlooked or ignored, meaning they could end up losing the support they desperately need to manage their conditions.

Hundreds of thousands of sick and disabled people across Britain need your help to fight these changes!

PROBLEM 1: FALSE ASSUMPTIONS
In the fitness to work test, your needs are assessed by a ‘healthcare professional’ employed by the French private company ATOS. This assessor doesn’t just need to look at your current difficulties. For example, they can also imagine how using an aid (e.g. a wheelchair) might improve your ability to work and make a judgement based on that – without even asking your opinion!

However, soon this “imaginary test” will be able to be used for many more aids (including guide dogs and false limbs!). This means that soon thousands more people could be judged as fit to work, without being consulted, on the basis of an “imaginary” aid they don’t own or may not be able to use!

It gets worse. Even if returning to work may clearly put you at risk, these changes will mean you can still lose your disability benefit – as long as the assessor believes that trying a new therapy or treatment might reduce that risk. There’s no need for evidence that the treatment will help: you will lose support either way, making it much harder to manage if the treatment doesn’t work as hoped – let alone if it ends up making things worse.

>>> Imagine Bert, who suffers from severe schizophrenia, but is found fit to work and made to take behavioural therapy in the hope of improving his condition. He will lose his disability benefit, without the assessor having to look at several vital questions: how hard it would be for Bert to contact a psychiatrist? How long would an NHS appointment take to organize? Are there private options in his area – and could he afford them if so? What if the therapy doesn’t work, or takes a long time to adjust to? If the government’s rule changes go through, people like Bert who are desperate to work will find it nearly impossible to get an accurate assessment, affecting the quality of their support and actively preventing their efforts to get back into work <<<.  

PROBLEM 2: SEPARATING PHYSICAL AND MENTAL HEALTH
The government is also trying to change the way people’s conditions are assessed by dividing health problems into two separate boxes: ‘physical’ and ‘mental’. So, for instance, when looking at what tasks people can do, only the ‘physical half’ of the test will apply to those with physical disabilities. The same goes for the effects of treatment: for instance., if you’re taking mental health medication, only mental health side-effects will be looked at.

This completely fails to understand the way that many disabilities and illnesses can lead to both physical and mental effects. This is also the case for many common treatments: such as those for schizophrenia, Parkinson’s disease and multiple sclerosis.

>>> Think of Emily, who suffers severe, chronic pain because of nerve damage to her leg. Emily is among the 49% of chronic pain sufferers who also suffer depression as a result of continuous pain. An assessor may see Emily as able to do some work as long as she takes strong painkillers for the rest of her life, meaning she could pass the ‘fitness’ test. Yet the painkillers may not deal with the depression caused by her condition. Painkillers have also often been shown to affect people’s wakefulness and decision-making. So taking the medication may affect Emily’s ability to do a job in a completely new way – yet because these new problems are cognitive, they would not need to be looked at by the assessor when making their decision. <<<

Pretending the effects of illnesses and disabilities can be separated in this way goes against all medical practice. Going even further, and using this method to ignore sick and disabled people’s needs, is at best hopeless policy, and at worst deliberate cruelty. We cannot let the government treat some of the most vulnerable people in British society in this way.  

HOW YOU CAN HELP
The main way you can help is by spreading the message about these changes to ESA. The government have tried to sneak them under the radar – the last thing they will want is people talking about them! 
1) Email your MP (you can search by name or constituency at http://www.parliament.uk/mps-lords-and-offices/mps/);
2) Share this blog post on twitter (using the hashtag #esaSOS), Facebook and other social media. Click on the buttons below this post to share on Twitter and Facebook.
3) Email your friends and family a link to this post – or simply talk to them about it! Again, the main way we can get the government to reconsider is by getting people to talk about the injustice of these changes.So please spread the word as far and wide as you can!

Thank you so much for reading this far. Now let’s make sure these unwanted, damaging benefit changes never see the light of day!  

If you want to do more, please sign #WOWpetition and call on the government to think again.  Ask all of your friends to sign too!

The full #Spartacus briefing on the proposed changes to ESA can be found here.

Pudsey Bear’s WCA

This is a guest post by Sarah Ismail, editor of the Same Difference blog.


Here’s what happened when Pudsey, the disabled bear, went for a Work Capability Assessment to the offices of ATOS.

ATOS Worker: Hello, please sit down.

(Pudsey sits, looking confused)

ATOS Worker: So, he can sit independently. How are you today?

Pudsey: Good, thank you.

ATOS Worker: Hold your arms out, turn your hands over. Straighten your fingers.

Pudsey: I don’t have hands, or fingers.

ATOS Worker: Hmmm... stand up on your tiptoes.

Pudsey: I don’t have toes... or feet.

ATOS Worker: Hmm... please remove hat horrible scarf from across your face. Open your right eye.

Pudsey: It’s not a scarf, it’s an eye patch. And I don’t have a right eye. One of the children pulled it off. That’s why I had to stop working. I’m partially sighted.

ATOS Worker: Children? You have children? You’re not disabled! Disabled people can't have CHILDREN!

Pudsey: They’re not my children... I’m a charity mascot... they’re the children I help.

ATOS Worker: A charity mascot? So, you already have a job. Disability benefit fraud... well well well.

Pudsey: But I’m a partially sighted teddy bear with no fingers, hands, toes or feet...

ATOS Worker: Well, Mr Pudsey, if you’re fit to be in the same room as children, you’re fit to work. Close the door on your way out. NEXT!

Fighting in the disability movement

So, look. There are a lot of rucks going on inside the disability movement at the moment: arguments breaking out, people blocking other people on Twitter, not-so-subtle digs in articles and blog posts...the list goes on.

I don't know anyone who likes it like this. Most people I've heard from hate it, as I do.

Many things contribute, I think. But in happier times, when we weren't being assailed by the Coalition's attacks on the jobs, incomes and even lives of many disabled people, we wouldn't be trying to pull together in one movement. There are many of us within the anti-Coaltion, anti-WRB movement who would otherwise be fighting and leading our own campaigns. We like to be in charge. We find it difficult to be told we're wrong. (And yes, before you all tell me, I'm fully aware that I'm as guilty of that as anyone else!)

And many of us operate on a hair-trigger anyway: quite aside from the aforementioned Coalition actions, things like pain, fatigue, and other effects of our impairments can have a huge impact. Then there's family issues, again potentially so stressful and painful.

And if you're putting yourself "out there" on social media, you tend to attract trolls: no-marks with nothing better to do than hurl abuse, and who don't care that there's a real person at the other end. The sensible thing to do, of course, is to block them. But people like us don't like not getting the last word....

So what can we do? These are my ideas - grateful for any more (but no obscenities please ;-)

1. Try to remember who the common enemy is! Hopefully this will get a bit easier once the summer recess is over and they're back in session.
2. If you feel yourself losing your temper, take 10 seconds before hitting Enter. Could the person at the other end of the Twitterchute feel just as bad as you? Almost certainly!
3. Remember to disagree with the opinion, not the person.
4. It can be hard to tell somebody's mood in writing. Did they mean that as a joke? Sarcastically? Sod's Law says that inevitably we'll take things the wrong way!
5. Block trolls. Early and resoundingly. Don't let them wind you up.
6. Finally, we have to support each other, and pull together. We need everyone for this battle.

"Alone we can do so little; together we can do so much" ~ Helen Keller 

 Now, if I could only learn to take my own advice...

Edited to add: This excellent post by @markoneinfour looks at these issues from a specifically mental health perspective.

Spoon overdrafts and the #WCA

It's difficult. I'd love to blog more. I'd love to do so many other things more too! Go out with friends, go shopping, go on holiday, keep on with my voluntary work, hold down a job...

But I'm a spoonie. I'm dreadfully, cripplingly fatigued because of long-term illness - in my case multiple sclerosis. And not only am I short on energy in the first place, but it takes me ages to recover after doing anything.

This weekend is an example. My beautiful, much loved cat Bing died on Friday. It was very, very stressful. Then on Sunday I drove to Oxford for lunch. Before I took ill, I wouldn't have thought twice about driving 60 miles each way for lunch. Now, it's an expedition of Amazonian proportions.

Today is Tuesday. I've not been out of my PJs since Sunday night. I really need to go into town to the bank, but my body's having none of it. It is, in fact, my spoon overdraft that's stopping me dealing with my financial one until I've got that blasted spoon level back up again.

And that's just one of the many problems with the Work Capability Assessment, which decides whether - and at what rate - people should get Employment and Support Allowance (ESA). It asks nothing at all about fatigue. It asks whether you can do a task once, but not whether you can do it repeatedly. It doesn't ask how your ability to work is affected by stress. ("Sorry, Mr. Employer, I can't come in this week. I'm tired cos my cat died.")

It's no wonder that so many people and organisations, including GPs, have denounced the WCA as inadequate. Staff members of ATOS, the company which carries out the assessments, have expressed concerns that not enough time is allowed for each appointment, for what are often complex cases with multiple comorbidities.

Karen Sherlock had multiple comorbidities - basically a lot of bad shit going on - but in her WCA she was put into the "work-related activity" group. That means they thought she'd be able to do some work, eventually.

Well, she couldn't. After a year's frantic, terrified gathering of evidence, Karen's appeal was successful, and she was placed in the support group.

And this week, two weeks after that decision, she died.

Wouldn't it be a wonderful memorial to Karen if this bluntest of blunt instruments were to be consigned to the history books forever? Let's continue to do åll we can, for Karen and its other victims.

The Spoonie Creation: a parody

The Spoonie Creation

 
1. In the beginning God created the heaven and the earth.

2. And the earth was without form, and void; and darkness was upon the face of the deep. And the Spirit of God moved upon the face of the waters. But he did not realise that the Devil was chasing him, seeking mischief to perform.

3. And God said, Let there be light: and there was light.

4. And God saw the light, that it was good: and God divided the light from the darkness.

5. And God called the light Day, and the darkness he called Night. And the Devil said: Day, Night? Wait till I come up with Spoonies, for they will either sleep too much or not at all. And the evening and the morning were the first day.

6. And God said, Let there be a firmament in the midst of the waters, and let it divide the waters from the waters.

7. And God made the firmament, and divided the waters which were under the firmament from the waters which were above the firmament: and it was so.

8. And God called the firmament Heaven. And the evening and the morning were the second day.

 9. And God said, Let the waters under the heaven be gathered together unto one place, and let the dry land appear: and it was so. And the Devil said, Ah, that'll be good for Spoonies to fall onto. Nice and hard.

10. And God called the dry land Earth; and the gathering together of the waters called he Seas: and God saw that it was good. And the Devil said: But let's have some more fun with the Spoonies, and make the dry land sometimes like unto the waters of the sea, raging even as a tempest, but let not the Spoonies know from one hour to the next which it shall be, and verily our mirth shall be great.*

11. And God said, Let the earth bring forth grass, the herb yielding seed, and the fruit tree yielding fruit after his kind, whose seed is in itself, upon the earth: and it was so.

12. And the earth brought forth grass, and herb yielding seed after his kind, and the tree yielding fruit, whose seed was in itself, after his kind: and God saw that it was good.

13. And the evening and the morning were the third day.

14. And God said, Let there be lights in the firmament of the heaven to divide the day from the night; and let them be for signs, and for seasons, and for days, and years:

15. and let them be for lights in the firmament of the heaven to give light upon the earth: and it was so.

16. And God made two great lights; the greater light to rule the day, and the lesser light to rule the night: he made the stars also.

17. And God set them in the firmament of the heaven to give light upon the earth,

18. and to rule over the day and over the night, and to divide the light from the darkness: and God saw that it was good.

19. And the evening and the morning were the fourth day.

20. And God said, Let the waters bring forth abundantly the moving creature that hath life, and fowl that may fly above the earth in the open firmament of heaven. And the Devil said Foul? That'll be the Conservatives.

21. And God created great whales, and every living creature that moveth, which the waters brought forth abundantly, after their kind, and every winged fowl after his kind: and God saw that it was good. And the Devil said, I see,they have to be able to move. That'll count out some of these Spoonies I have planned.

22. And God blessed them, saying, Be fruitful, and multiply, and fill the waters in the seas, and let fowl multiply in the earth. And the Devil did ensure that all politicians multiplied.

23. And the evening and the morning were the fifth day.

24. And God said, Let the earth bring forth the living creature after his kind, cattle, and creeping thing, and beast of the earth after his kind: and it was so.

25. And God made the beast of the earth after his kind, and cattle after their kind, and every thing that creepeth upon the earth after his kind: and God saw that it was good. And the Devil said, Let the things that creepeth upon the earth be named The Coalition.

26. And God said, Let us make man in our image, after our likeness: and let them have dominion over the fish of the sea, and over the fowl of the air, and over the cattle, and over all the earth, and over every creeping thing that creepeth upon the earth.

27. So God created man in his own image, in the image of God created he him; male and female created he them .And the Devil created Spoonies, who were in the image of God and looked so well but had bits that did not work properly. And the Spoonies had dominion over nothing.

28. And God blessed them, and God said unto them, Be fruitful, and multiply, and replenish the earth, and subdue it: and have dominion over the fish of the sea, and over the fowl of the air, and over every living thing that moveth upon the earth. And the Devil said, Apart from Spoonies, who are clearly not interested in being fruitful and multiplying, and shall be the lowest of the low.

29. And God said, Behold, I have given you every herb bearing seed, which is upon the face of all the earth, and every tree, in the which is the fruit of a tree yielding seed; to you it shall be for meat. And lo, certain of the Spoonies did say, Herb? Where?

30. And to every beast of the earth, and to every fowl of the air, and to every thing that creepeth upon the earth, wherein there is life, I have given every green herb for meat: and it was so. And the Devil suggested the Welfare Reform Bill and the NHS Bill to the creeping things that were the Coalition.

31. And God saw every thing that he had made, and, behold, it was very good. And the Devil also rejoiced in that which he had made. And the evening and the morning were the sixth day.

32. And on the seventh day Spoonie Jebus necked some Oramorph and had a nap to build up his strength. For verily, there was a hell of a mess to sort out.

*Devil section by Meg Morrigan

Doctor Doctor, can't you feel I'm burning burning? #braveheart

Doctors do, in the main, appreciate that the symptoms of MS can include dreadful pain. It can be burning, stabbing, shooting, like an electric shock, pins and needles, or - my personal favourite - like your limb is being sawed through. Lovely.

When this pain is bad, it really stops you in your tracks: but the DWP don't seem to see it as relevant to whether you can work or not.

If you're claiming Employment and Support Allowance, you're likely to be called to a Work Capability Assessment, carried out by the private company Atos. Incidentally, Atos is getting these assessments spectacularly wrong - and that's if you can get into their offce, if it's not one of the ones that's inaccessible to people in wheelchairs.

The assessments are done by "healthcare professionals" - doctors, nurses, physiotherapists or occupational therapists - who may have no knowledge at all of your condition. They complete a computer questionnaire based on your answers.

The questions are all about your ability to perform physical tasks. There is no recognition of pain, fatigue, or the fact that you might be able to perform a task once, but not repeatedly.

Never mind us not being fit for work. The Atos tests aren't fit for purpose.

So it's great that Scotland's GPs have called for an end to Work Capability Assessments.We, sick and disabled people, have known about the problems with them for a long time, but it's great to have recognition  from the medical world. Dr Steven Carty, an Edinburgh GP, said:

This sends a ray of hope to some of the weakest and most vulnerable in society.

It also sends a clear message to other representative bodies including the General Medical Council (GMC) of the significant concerns shared by many GPs across the country.

In my opinion the current contractual arrangements between the DWP and General Practice are unsustainable. The WCA as performed by ATOS is not an effective or safe method of determining "fitness to work" and this must be addressed.

All doctors are duty bound by the GMC to report any system or process that may be harmful to patients. The WCA is a harmful process. Scottish GPs have spoken: the GMC cannot remain silent on this matter any longer.

Let's hope the BMA and GMC respond to this call and also condemn the WCA (so many acronyms!)

We certainly can't go on with this flawed system, which doesn't recognise symptoms which are such a major part of sickness and disability for so many people.

 

Back on the chain gang: the WRAG and #workfare

There's been a lot of indignation on the internet this week.It was partly down to an error by Tesco, who advertised a "work experience" job as if it was a normal vacancy, but paying only Jobseeker's Allowance plus expenses. I have no doubt that their advertising mistake was genuine, but it highlighted the practice of big companies increasing their already huge profits by using taxpayer-funded labour.

This type of social welfare system is known as workfare. Under the system that previously operated in the UK, receiving benefits was conditional on things like searching for work and being available for work. Under workfare, you are expected to undertake training, work experience or community work. If you do not complete these satisfactorily, your benefits are reduced.

Workfare became a political headline-grabber in the UK about a month ago, after geology graduate Cait Reilly refused to take up a placement at Poundland, because it was unpaid: she argues that young people need jobs, not fake "work experience" schemes.

Now, the latest. The Guardian has received documents revealing secret DWP plans. If you're on Employment and Support Allowance (ESA), in the Work Related Activity Group (WRAG), it's been decided that you might be able to work at some time in the future. The documents reveal that those in the WRAG, too, may be placed on workfare, even though it's acknowledged that at that point in time they are not fit for work. For some of us, fitness to work may be years or decades away, while others of us will never be fit for work.

So, will we be forced out to work when we're not fit? Forced back to the chain gang?

Well, many issues have been raised about the policy since the Guardian's story. Here are a few thoughts of my own.I'll talk about "I", though I've not been transferred onto ESA yet.

• Suppose I agree to take part in a workfare scheme. What happens if (when) I'm not well enough to go? What happens if I arrive late, or have to leave early, due to my disability? Or have a medical appointment? After all, the DWP have acknowledged I'm sick and/or disabled by putting me in the WRAG in the first place.
• My doctors may have said it would be dangerous to my health to work. Where do I stand? (Or, more probably, sit)
• According to the Guardian documents, the "host employers" have to make "reasonable adjustments", as with the Disability Discrimination Act. Is this really likely if I'm only there for a few weeks? Funding under Access to Work is no longer available, having been withdrawn by this government.
• The Health & Safety at Work Act is still in force, and protects me, all other employees, and any members of the public visiting the workplace. Could be expensive for the "host employer" if anything goes wrong.
• The Employers' Liability Act also applies. As long as I'm certified as "not fit for work" by my doctor, I will not be covered by an employer's insurance.

At the time of writing, several large companies have dropped out of the workfare scheme for people on JSA, including Waterstones, Sainsbury's, TK Maxx, and Matalan. Hopefully workfare for people in the WRAG will be quietly dropped before the government shows itself up yet again.

Reply to email to my MP re the #WRB (with comments)

I emailed my MP, James Clappison, with some of my concerns about the Welfare Reform Bill. I'm going to copy out his response below, with some comments by me in brackets. It's long, and addresses both the points I raised and some I didn't. I therefore believe it to be a form letter. Mr Clappison is a Conservative.

Dear Ms Milne,

Thank you for contacting me about the Welfare Reform Bill.

 I believe the bill makes the tough decisions that will restore fairness to the benefits system, support the vulnerable and provide the right incentives and support for people to find work. This is why the Government overturned the amendments that the House of Lords made. Having read your concerns about the legislation, I would like to take this opportunity to reassure you about aspects of the Bill which you have raised.

(Oh, so they didn't oppose the Lords' amendments because they had financial implications then? Well just fancy that!)

The one year time limit on the length of time that people can receive contribution-based Employment & Support Allowance (ESA) is an important measure designed to ensure that people make the journey back towards work. It strikes the right balance between restricting access to contributory benefits and allowing those with longer-term illnesses to adjust to their health condition and surrounding circumstances, and it is double the time allowed for contribution based JobSeeker's Allowance in recognition of that fact. The one year time limit is not an arbitrary time limit. It is in line with similar limits in other countries around the world including France, Spain and Ireland. It should also be noted that it is only the contributory element of ESA that will be time-limited, not income-related ESA.

(You could double, triple, or multipy by ten the JSA time limit. Many with sickness and disability would still not be fit for work. The Government's own figures show that people with learning difficulties, for instance, take over 2 years to gain employment. Those of us with progressive conditions know that if we're not fit for work now, we never will be again.)

Members of the House of Lords also rejected Government plans to remove the automatic qualification that children with disabilities receive to contribution-based Employment & Support Allowance 'Youth'. However, this change was not made with the intention to reduce the support available to children with disabilities when they progress to adulthood.

The three principal reasons why the Government has instituted this change is because it simplifies the benefit system by abolishing a category where the majority of claimants would be entitled to income-related ESA. This is paid at the same or a higher rate for many people. Second, this measure aligns the treatment of ESA 'Youth' with other groups claiming contributory ESA to create a consistent system in the run up to the introduction of Universal Credit. Third, entitlement to income-related ESA will help ensure those recipients automatically qualify for passported benefits, such as free NHS prescription charges, instead of having to make a separate claim.

(Now, it's entirely possible I've misunderstood this second paragraph completely. But it seems to me they're saying income-related when they mean contributory, and vice versa. And, of course, these individuals won't be entitled to income-related ESA, to passport them to things like free prescriptions, if they're still living with their parents, or with a partner who's earning. They'll have no income of their own at all.)

One of the other measures that Peers voted on was a proposal to exempt cancer patients from any time limit on contribution-based ESA, which is unnecessary as the vast majority of cancer patients would be placed in the ESA support group and or choose to be in work.

(With recent decisions including a man in a coma being found fit for work (due to a clerical error), and a terminally ill man with dementia being called to a Return To Work interview, I wouldn't be so sure.)

The evidence put forward by various oncologists and other experts shows that for some people, being able to continue working or getting back into work after diagnosis is an important part of the recovery process. People should not be confined six months out of work if that is not appropriate for them. Similarly, there is also a need for some patients to have full financial assistance at what is a very difficult time for them and their families. In those cases, the Government has been quite clear, people shall continue to receive all the help that they need. You should also be aware that the Government's changes to the criteria for the support group mean that more people will be able to access the support because the (sic) certain treatments, including oral and chemo-irradiation therapies are now recognised.

(I know that for some people work is an important part of their recovery. For some, not all. And I don't believe that anyone is suggesting sick leave should be compulsory, except in the rare situations where healthcare professionals believe that returning to the workplace could cause danger to yourself or others.)

I realise you are concerned by the Government's proposal to place a cap of £26,000 on the amount of benefits that a workless household can receive but I believe that the cap has been set at an appropriate level. It is right to include Child Benefit in the cap disappointed by the decision in the House of Lords to exempt Child Benefit (sic). This is because the cap would be set so high that it would become meaningless as well as undermining the key principles of fairness that our welfare system is based on.

There has to be a limit on the amount of money benefit claimants can receive and Minimsters believe that the limit is currently set at a fair rate of £26,000, which it is worth noting, is the equivalent to someone earning £35,000 before tax. This is a salary that many working families would be happy to receive and underlines the point that hard working people should not pay their taxes in order to support people who refuse to work.

(The benefit cap has received much of the media attention over the WRB, in spite of affecting far fewer households than other provisions of the Bill. Those it does affect mostly live in central London, with the bulk of the benefit concerned being paid to rapacious landlords. The figures quoted are not comparing like with like: another example of Government misdirection. This excellent post by Declan Gaffney explains in detail. And "people who refuse to work"? Again, the government pushes its "scrounger" rhetoric. Over half the households which will be affected by the benefits cap contain at least one disabled member. And in the current economic climate, to be jobless most certainly doesn't mean you "refuse" to work!)

With regard to the under occupation of social housing, I believe that when there are 250,000 social housing tenants living in overcrowded accommodation and over 5 million people on social housing waiting lists, it is unacceptable for the Government to subsidise people to live in accommodation that is too big for their actual needs. Many ordinary people are not in a financial position to be able to afford to have a spare room. There is also a fundamental misallocation of resources in that there are over 1 million spre rooms that are paid for by the taxpayer.

(Wow. If only there was more social housing. If only some Government hadn't sold it all off and banned councils from using the proceeds to build more social housing. Uh, what Government was that again? By the way, we don't seem to know yet what'll happen about disabled people who need a second bedroom for equipment storage, or to allow a carer to sleep over.)

I know that the issue of charging has alarmed people but it should be recognised that this is a principle that all parties support and was originally set out in Sir David Henshaw's review of the CSA in 2006. The charge itself will act as an incentive for parents to establish their own arrangement. The £100 charge will cover only a proportion of the costs of an application and those on out of work benefits will pay only a (sic) £50 with an upfront charge of £20.

It should also be noted that 50 per cent families (sic) believe that with the right support, they could develop their own arrangements. The Government is spending £20 million improving support to families at this stage and it should also be noted that some people will be exempted from charges if for example, they are the victim of domestic violence.

(Only £50. Only. There speaks someone who's never been on benefits. And frankly, I don't care if this policy is supported by the Dalai Lama. I believe it's discriminatory.)

I hope this clarifies why the Government is making the changes that it is and that it reassures you that this will not undermine the support available to the disabled and people who genuinely need support.

(Well, frankly, no. And calling us "the disabled" doesn't help.)

Thank you again for taking the time to contact me.

(My pleasure)

Yours sincerely

(Love and kisses)

James Clappison

(Margo xx)

Defining doctoring

The General Medical Council wants to find out what is good medical practice today, and what makes a good doctor. They ran debate and discussion throughout 2011, and now they're having a public consultation.

They want to hear from everyone - doctors, organisations, and members of the public.There are separate online questionnaires for each, and you can type in comments as well as ticking boxes.

One subject they ask about is whether doctors should be encouraging patients to return to (or take up) work - interesting in view of the current welfare reforms!

All the links you'll need are here. The consultation closes on 10th February.

Please do take part. This is an important subject, that will affect us all.

Looking Under The Lid - The BioPsychoSocial Model

This was originally posted as a guest blog at Benefit Scrounging Scum.

Like many others, I've been anxiously watching what's been going on in the House of Lords with the Welfare Reform Bill. After all, it affects my future, very directly. I couldn't help but notice Lord Freud, the WRB's sponsor in the Lords, referring to a document he'd shown to "certain" of the Lords. He was using it as the justification for the Government's change from the social model of disability to the biopsychosocial model in drawing up the Bill. I wrote a post recently about the differences between those two models.

Anyway, it seemed a bit unfair to me, if they got to see it and we didn't. With the help of Twitter, I managed to get a pdf of the document in question. It's Models of Illness and Disability, by Gordon Waddell and Mansell Aylward - both from the Centre for Psychosocial and Disability Research at Cardiff University. The Centre is funded by Unum Group, whose relationship with the DWP has long been - well let's just say "interesting". A good place to start in learning more about that is here.

Now, there's certainly a lot I disagree with in the report. But it might surprise you to learn that there are things I agree with too. There's only space here for me to point out a few of the things I found, so I'm sure you won't be surprised if I concentrate on the things I disagree with!

The report starts by describing the medical and social models, and some of the limitations of each. Unfortunately, the authors seem not to have understood the social model in the first place! They describe it as applying best to those with permanent physical impairment, learning disabilities, and severe medical conditions. In fact, many people with learning difficulties and medical conditions (as well as those with mental health conditions) have argued that the social model, with its emphasis on societal barriers rather than personal experience of impairment, fails to represent their experience of disability.

The authors also, when talking about the social model, use the term "disability" interchangeably with "impairment". The social model sees impairment as an actual physical, sensory, mental or intellectual variation from the norm, and disability as the as the exclusion that arises through society failing to respond to those variations. They are not synonymous.

Waddell and Aylward then attempt to apply the social model to mental health. They have said earlier, however, that "mild to moderate" conditions often have symptoms without objective findings, which would mean there is no impairment. It's necessary to have an impairment to be disabled.

Aylward and Waddell speak constantly about "health conditions" and "healthcare". There seems to be no recognition that many people on disability benefits have disabilities (that are not also illnesses), and have no more contact with health professionals than able-bodied members of the public

They also talk about free will and personal responsibility, and point out (and this is fair enough, in my opinion) that if sick and disabled people receive benefits, they have to fulfil their side of the bargain by deciding if it is reasonable for them to return to work.The corollary is, however, that benefit decisions must be made with "understanding and compassion".

With recent decisions from Atos including finding a man in a coma fit for work, and requiring a terminally ill man with dementia to attend a "Preparing For Work" interview, it could surely be said that the government has breached this contract.

Fairness demands that rights and responsibilities work both ways, say the authors.The onus is on society to provide the necessary opportunities and support before imposing responsibilities on sick and disabled people. Well, those opportunities and support are certainly not in place as yet.

The biopsychosocial model (which I'll refer to as the BPS model from here on in) was only ever intended to deal with about 2/3 of people on ill-health benefits, with what they refer to as "common health problems" - things like mild to moderate mental health problems, musculoskeletal problems, or cardiorespiratory problems. Waddell and Aylward argue that such problems are very different from the severe medical problems and permanent impairments for which the sickness and disability system was originally designed.

A key underpinning of the BPS model is that work is good for you, and for your health. Now, I do agree (I AGREE WITH THEM ON SOMETHING!) that being out of work is bad for your health, but it's not quite as simplistic a relationship as they suggest. Just about every illness is more common the lower down the socio-economic ladder you slide, and benefit claimants are right at the bottom footing the ladder for everyone else. People working in unskilled jobs have very slightly less risk of getting the majority of conditions than benefit claimants.

The beneficial effects of returning to the job market generally outweigh the risks, say the authors, as long as there is a realistic chance of obtaining a "good" job from the perspective of promoting health and well-being, preferably locally.

In the present economic climate, even able-bodied candidates with "clean" sickness records cannot find work.What chance do we, as sick and disabled people, have? Pretty much zero.

The authors argue that medical treatment for "common health problems" focuses on symptoms rather than treating the cause. I would reject this claim. Depression, for instance, is now treated with medications that correct biochemical imbalances in the brain.

They discuss mental health problems specifically as being BPS disorders. Severe mental illness is the minority: the majority of sickness absence for mental health issues, they say, is for mild to moderate conditions like depression and anxiety. This bit made me rather angry! Having had severe depression and anxiety in the past, I can confirm it's no walk in the park..

So. Conclusions. I'm not over-impressed by the report - it's slack in its use of language, and its understanding of the preceding models it discusses.We can also see how the Government has cherry-picked from it, used the bits that serve its ideology (working is good for your health, etc) while ignoring the bits that don't suit (benefit decisions must be made with understanding and compassion, society must provide opportunities and support before imposing responsibilities on disabled people, etc). And the BPS model was only ever supposed to apply to 2/3 of "health problems" anyway, not all. Overall then, a resounding Fail, I'd say. Must try harder.

Oh - and must stop trying to apply this nonsense to the millions of distressed, vulnerable people up and down the UK who will be affected if this blancmange of a Bill goes through.

Modelling disability #spartacusreport

Models. Not glamorous young men and women. Not scale representations of trains. But understandings of disability.

Models are simplified ways of describing systems: they help us understand what's going on, in a way that can influence social policy and public debate, and can also enable new and potentially more effective insights and methods of intervention,

So why am I telling you about them? Well, they've become very important in the welfare reform discussion.

In the Committee stages of the Welfare Reform Bill, the Government committed itself to the use of the social model of disability in the Bill. In the social model, disability arises from society's response to people with impairments. Physical, mental and sensory differences or impairments don't have to lead to disability unless society fails to react to them and include people regardless of their individual differences.

That puts the onus on society to make work, education etc accessible for disabled people. Disabled young people have just as high aspirations as their able-bodied peers, but are 2½ times as likely to be out of work, and those in work earn 11% less.

But earlier this week, when the Bill was being discussed in the House of Lords, Lord Freud announced that the Government had decided that the Bill should be based on the biopsychosocial model of disability instead. This model claims that biological, psychological and social factors all play a part in human functioning, in the context of disease or illness.

The biological component of the theory comes, clearly, from within the individual's body. The psychological part encompasses thoughts, emotions and behaviour, and looks for potential causes of a health problem such as lack of self-control, emotional turmoil, and negative thinking. The social part investigates how different social factors such as socioeconomic status, culture and technology can influence health.

A lot of its application is in illness behaviour. When someone becomes ill, they get certain rights (eg they don't have to work) but also certain responsibilities (eg they have to do what their doctor says and do their best to get well).

All sounds very sensible. Things worth taking into account. So what's the problem? Why am I writing a blog post about it all?

Well, for one, the biopsychosocial model is about health and illness, not about impairment and disability. It has nothing to say to the situation of someone who was, for instance, born with cerebral palsy. Even for the majority of us with long-term illnesses, "illness behaviour" is mainly irrelevant: we're not going to get better, no matter how hard we try.

Obviously some of us are going to recover, go back to work, lead normal lives again. That's wonderful. But many of us are not. I have progressive MS. I'm not going to be getting better - I'm going to get worse, and there is absolutely no way I'm fit to work at present.

But because the government has chosen the biopsychosocial model, there's a very real risk that after a year I'll be forced onto Jobseeker's Allowance: and face having it removed if I don't turn up for interviews because I'm unable to get out of bed. Or even, maybe, get a job, somehow (given the current climate), and get sacked because I fall asleep uncontrollably at my desk.

So, models. They're useful things, but they're kind of like jigsaw pieces. You can't just ram one in where you'd like it to go, and hope nobody'll notice - a bit of sky in the middle of the green grass, that sort of thing. The model has to fit. And the biopsychosocial model just doesn't.

PS I didn't want to make this post too long, so I'm stopping there, with models. It's very much worth your time reading up on the dubious nature of the DWP's links with the Unum Research Centre at Cardiff University, though. This is a good place to start.

Getting DLA #spartacusstories #spartacusreport

In 2003, I took really poorly with what turned out to be MS.My condition progressed from there. It took two years for me to get a diagnosis.

After a while, when I was really becoming restricted badly, I decided to apply for Disability Living Allowance. I could only walk very short distances - less than 40 metres or so - and my fatigue and balance issues restricted me badly in what I could do. I was using a wheelchair for longer distances.

I filled in the hugely long and complicated form myself: a mistake, as I later discovered. There are certain ways of wording things that are "understood" by the decision makers at the DWP.

It's depressing filling in a form like that. When you're trying to stay positive and focused on living your life, suddenly having to list all the things you can't do, write about your problems with washing, dressing, going to the toilet, doesn't really help.

A doctor came to my house to give me a medical. He asked me lots of questions, and confused me. When I finally saw his report, some time later, I didn't recognise it as relating to what I'd said. Apparently I could walk for about quarter of a mile without needing to stop, and had few problems with self care.

The DWP sent me their decision. They'd awarded me low rate care, and nothing for mobility. I didn't think that was right, so I appealed against the decision. At the appeal hearing, I was called a liar to my face and had the low rate care removed as well. Now I was getting no DLA at all.

I decided to take it further. I appealed the tribunal's decision to the Commissioner for Social Security. He decided I hadn't had a fair hearing, and that I should have another one.

At the new hearing, I was awarded high rate mobility and middle rate care. The award is indefinite, because my MS is progressive. Sadly, it's not going to get better!

The media is full of stories about scroungers who get DLA. I genuinely don't know how these people do it. Considering all I went through to get DLA, with a genuine condition...

Anyway. Please. Support Responsible Reform, the #spartacusreport. Yes, some reform is needed in the benefits system, but not the manic rolling-eyed machete-wielding currently on display from the Coalition.

Rick Edwards, TV presenter, supports the principles behind the #spartacusreport

Disabled people can achieve as much as anyone else, but only when society supports them and listens to them before making any major changes affecting them.

Rick Edwards, TV presenter (T4, That Paralympic Show etc)

Annabel Giles supports the principles behind the #spartacusreport

Why, after all we should have learned over these past centuries, are we returning to survival of the fittest? It is bad enough to be born or become disabled; not to be consulted about the best way to be helped by those in the position to offer it is just wrong.

Annabel Giles, TV presenter and writer

Doctors support the #spartacusreport

The NHS Consultants’ Association believes that ill thought out reform to the DLA, with reduction of financial support to some of the most vulnerable members of society is not only unjustified, but also a false economy which will result in cost implications for carers and additional use of NHS services and resources.

Clive Peedell, on behalf of the NHS Consultants’ Association

It is important that in the quest to support employment in everyone, abled or disabled, that we do not underestimate the problems that many people with long term disabilities have in  carrying out even simple day to day functions. Insensitive assessment of disability and failure to understand the complexity of their problems might inadvertently result in removal of their benefits, causing more problems in an already vulnerable population.

Clare Gerada, Chair of Royal College of GP's

Boris Johnson quote from the #spartacusreport

The government proposes imposing penalties if disabled people do not inform the government in changes in their circumstances. However, the Department of Work and Pensions statistics give the overall fraud rate for Disability Living Allowance as being less than 0.5%. For those with fluctuating conditions asking them to report every change to their condition would prove very stressful.

Boris Johnson, Mayor of London

Christine Hamilton supports the principles behind the #spartacusreport

Most of us are lucky enough to take the basic functions of mind and body for granted, give or take the creaking of age.  But, equally, many of us know someone who is not so fortunate, either within the family or as a friend, or even a friend of a friend. 

To enable the most vulnerable people in our society to reach their full potential, we, as a community, must give them the support they need.  Changes will always need to be made to adapt to different circumstances, but we must never lose sight of the fact that those who will be affected by any change (or their immediate carers) must be consulted at every stage.

Christine Hamilton, author and media personality

Hardeep Singh Kohli supports the principles behind the #spartacusreport

The definition of a civilised society is one that makes it a priority to support the most vulnerable. Any major changes which affect the lives of sick/disabled people should not be made without their support and advice. The main issue for these groups is that they have been continually overlooked and seldom respected.  Now is not the time to overlook them. Now is the time to listen and act.

Hardeep Singh Kohli, writer, comedian and broadcaster