is up here
Tim Abbott, Kaliya Franklin and Stephen Lee Hodgkins of Disability Lib had a roundtable discussion about organising the disabled community and looking to the future.
Non-partisan UK-based Disability campaign. Advocacy for people with invisible illness and/or physical & mental health conditions. Also Carers, their Families and Friends. Our individual voices are too quiet to be heard, but collectively we can shout loud enough to drown out this tide of abuse against us. Disability Hate Crime, lack of full legal protection, people in care homes costing too much to be let out and not one political party willing to fight for us.
Saturday, 30 July 2011
Friday, 29 July 2011
50 charities suggest Government is using 'dangerously misleading' statistics-From Disability Alliance
The Broken of Britain fully support today's press release from Disability Alliance.
50 charities suggest Government is using 'dangerously misleading' statistics
Government statistics [1] have fuelled claims this week that high numbers of benefits claimants are ‘faking’ [2]. But a coalition of over 50 charities [3] suggest this is dangerously misleading and contributing to hatred and violence towards disabled people by portraying them as cheats and scroungers. Hayley Jordan, from the Disability Benefits Consortium (DBC) and MS Society, says:
“Hours after an important committee of cross-party MPs condemned irresponsible and inaccurate portrayal of benefits claimants, DWP statistics led to more reports wrongly labelling people as ‘faking’. Disabled people are very disappointed that the Government is refusing to ensure accurate reporting and may be contributing to stigmatisation, victimisation and exclusion.”
The Department for Work and Pensions (DWP) released figures on Tuesday which suggest that only 7% of claimants for Employment Support Allowance (ESA), the new benefit that replacing Incapacity Benefits, were unable to do any sort of work. This led to claims that 75% of sickness benefits claimants are “faking”.
But the figures were released just as a report from a committee of MPs [4] decried misleading media coverage, and the false assumption that the tests are designed to ‘weed out’ benefits cheats:
“Media coverage of the reassessment is often irresponsible and inaccurate and we deprecate the pejorative language which some sections of the press use when referring to benefit claimants. Portraying the reassessment of incapacity benefit claimants as some sort of scheme to “weed out benefit cheats” shows a fundamental misunderstanding of the Government’s objectives.”
The committee report also highlights that the number of appeals is rapidly increasing, with people going to the Tribunals Service set to double over three years. 436,000 people will appeal in 2011/12 and this costs the taxpayer a staggering £50 million per year.
Independent reviews, charities, and the Work and Pensions Committee have all now told the Government that the figures for new ESA benefit claims mask the true level of capacity to work and that the assessment system used is ineffective, over-expensive and is denying many disabled people the support they need to get and keep work. But the facts are lost in ‘fakers’ claims which reappeared the same day the committee report was launched due to DWP publishing further statistics on the same day. This led committee chair, Dame Anne Begg MP, to write to the Minister [5] stating: “By what I assume was a coincidence…The coverage of the statistics in some newspapers, notably the Daily Mail and the Daily Express, was a particularly egregious example of the way they can be misused.”
Charities are also concerned that welfare reform is supposed to deliver help to disabled people to get/keep work but support appears to be rescinding. Government misleading statistics on claimants was also published the same day as it was revealed the number of disabled people using ‘Access to Work’ had sadly fallen [6]. Neil Coyle, of the DBC and Disability Alliance, says:
“The Government must ensure appropriate support is available to disabled people to get and keep work. It is very worrying that some support has dropped in the last year. Sadly, the language to describe disabled people needing support has become more offensive and this also contributes to barriers to work as employers suspect genuinely disabled people of faking or being ‘work-shy’.”
Notes:
[2] For examples please see:
· Only 7% deemed 'too ill to work' - Express
· 76% of those who say they're sick 'can work': Tests weed out most seeking incapacity benefit – Mail
[3] The Disability Benefits Consortium (DBC) is a national coalition of over 50 different charities and other organisations committed to working towards a fair benefits system For more information go to: http://www.disabilityalliance.org/dbc.htm
[4] Department of Work and Pensions Commons Select Committee letter to Employment Minister on release of benefit claimant statistics:http://www.parliament.uk/business/committees/committees-a-z/commons-select/work-and-pensions-committee/news/letter-to-chris-grayling-benefit-payment-statistics/
[5] For a copy of the full letter visit: http://www.parliament.uk/business/committees/committees-a-z/commons-select/work-and-pensions-committee/news/letter-to-chris-grayling-benefit-payment-statistics/
[6] Access to Work helps employers and disabled people with the costs of adapting work premises or providing accessible software for example and is a net contributor to the Treasury. For more information go to:http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes/DG_4000347
Neil Coyle
Director of Policy
Disability Alliance
Universal House
88-94 Wentworth Street
London E1 7SA
Tel: 020 7247 8776
Registered charity number: 1063115
Company limited by guarantee number: 2056801
Breaking the link between poverty and disability
Wednesday, 27 July 2011
Repeat
Thanks to Batsgirl for this excellent post, originally published here
I know this is ground we've covered before, but a look at today's front pages makes it necessary to go over it again.
In the UK, we have a welfare system. The disability benefit side of it has been being overhauled for the last few years. Labour started it, the Coalition are continuing it, they're using the same company (Atos) to execute it and the same advisor (Lord Freud) to justify it. This is not a party-political issue - red, blue or yellow, to borrow a phrase, they're all in it together.
In summary:
Leaving aside all the arguments about whether the system is fair, how their fitness-to-work tests relate to what is required to perform a job in the real world, and so on... the Department for Work and Pensions released these statistics yesterday, about ESA applicants over the last two years:
Today, the Express have taken these numbers and decided that 1% (still in assessment phase) plus 7% (Support group ESA) plus 17% (WRA group ESA) equals 25% of applicants approved to receive some form of ESA. So far, so true. However, their headline screams that therefore the remaining 75% - those moved onto JSA, and those who drop out of the system entirely - are "faking".
This is simply not true.
The fact that a person has failed to score enough points to get ESA (yes, it really is a points-based computer system) does not mean that they scored no points whatsoever, or even that they're not disabled, just that they're not quite disabled enough to be Officially unfit for work. That's why we have the assessment process! To assess people!
To apply to be assessed is not "faking".
To have a level of impairment that falls just short of the ESA bar is not "faking".
There will also be quite a few applicants who suffered an acute injury or illness (for instance, they were in a car accident) and were advised to apply for ESA as a temporary or worst case scenario - but in the 13-week assessment period, they have recovered well so they have been moved to JSA or have returned to work.
To recover from an illness or injury does not mean that the illness or injury was "faked".
There are also the people who get placed onto Jobseeker's Allowance, and go to appeal, and win. The rate of people winning their appeals is around 40% and this increases to 70% where the appellant has someone to represent them. Regrettably, there are also a number of genuinely disabled people who simply don't have the wherewithal to fight an appeal, and have to attempt to survive without the benefits they need. I myself have been in this situation.
To be too ill to fight is not "faking".
There are people who, during their assessment period, are fortunate to find a suitable job which is prepared to make the necessary adjustments, or who, like myself, have enough personal support around them to enable them to be self-employed.
To return to the taxpaying workforce is not "faking".
A very few people will be fortunate enough to have other resources to fall back on. Perhaps an insurance payout of some kind, or a lottery win, or the sale of assets, will save them from the indignity of having to complete a process that treats them as the worst kind of fraudster from beginning to end.
To have alternative resources is not "faking".
Most significantly, there are those who die before the assessment phase is complete.
To die of a condition is perhaps the strongest possible indicator that the condition was not "faked".
I'd provide more concrete statistics, but we don't have them. Once you leave ESA, you're not monitored. We don't know how many of these people have got jobs, have died, have killed themselves, have left the country... no one cares. The Express just goes ahead and calls them all "fakers".
I know this is ground we've covered before, but a look at today's front pages makes it necessary to go over it again.
In the UK, we have a welfare system. The disability benefit side of it has been being overhauled for the last few years. Labour started it, the Coalition are continuing it, they're using the same company (Atos) to execute it and the same advisor (Lord Freud) to justify it. This is not a party-political issue - red, blue or yellow, to borrow a phrase, they're all in it together.
In summary:
- If you have a doctor's note stating that you are unable to work because of illness, injury or impairment, you apply for Employment Support Allowance (ESA). For the first 13 weeks of your claim you are paid the "assessment phase" rate of up to £67.50 per week.
- If the assessment classifies you as entirely unable to work, and unlikely to ever be able to work, for instance because you are bedbound and terminally ill with a life expectancy of less than a year, you are granted unconditional ESA at the "support" rate of up to £99.85 per week.
- If the assessment decides that, although your disabilities are substantial, you would be able to do *some* work at *some* point in the future with the right conditions/support/equipment/adjustments, then you are awarded ESA at the "work-related activity" rate of up to £94.25 per week. To continue to receive this you must attend regular work-related activities.
- If the assessment determines that your NHS-diagnosed conditions are not severe enough to substantially impair your ability to work in an office environment, or that you would only require minor adjustments, you are deemed "fit to work". You don't get ESA at all, and are placed on Job Seekers Allowance (JSA) which is a smaller amount of money with much higher conditionality attached. If you are fortunate, there may be a note on your jobseeking file excusing you from mandatory application for specific jobs that would aggravate or be incompatible with your condition (for instance someone with speech and hearing difficulties may be "fit to work" but excused from mandatory application for call-centre jobs).
Leaving aside all the arguments about whether the system is fair, how their fitness-to-work tests relate to what is required to perform a job in the real world, and so on... the Department for Work and Pensions released these statistics yesterday, about ESA applicants over the last two years:
- 7% were incapable of any work (Support group)
- 17% were able to do some sort of work given the correct support (Work-related activity group)
- 39% were deemed to be fit for work and were moved onto jobseeker's allowance
- 36% dropped out of the application process
- 1% of applications were still in progress
Today, the Express have taken these numbers and decided that 1% (still in assessment phase) plus 7% (Support group ESA) plus 17% (WRA group ESA) equals 25% of applicants approved to receive some form of ESA. So far, so true. However, their headline screams that therefore the remaining 75% - those moved onto JSA, and those who drop out of the system entirely - are "faking".
This is simply not true.
The fact that a person has failed to score enough points to get ESA (yes, it really is a points-based computer system) does not mean that they scored no points whatsoever, or even that they're not disabled, just that they're not quite disabled enough to be Officially unfit for work. That's why we have the assessment process! To assess people!
To apply to be assessed is not "faking".
To have a level of impairment that falls just short of the ESA bar is not "faking".
There will also be quite a few applicants who suffered an acute injury or illness (for instance, they were in a car accident) and were advised to apply for ESA as a temporary or worst case scenario - but in the 13-week assessment period, they have recovered well so they have been moved to JSA or have returned to work.
To recover from an illness or injury does not mean that the illness or injury was "faked".
There are also the people who get placed onto Jobseeker's Allowance, and go to appeal, and win. The rate of people winning their appeals is around 40% and this increases to 70% where the appellant has someone to represent them. Regrettably, there are also a number of genuinely disabled people who simply don't have the wherewithal to fight an appeal, and have to attempt to survive without the benefits they need. I myself have been in this situation.
To be too ill to fight is not "faking".
There are people who, during their assessment period, are fortunate to find a suitable job which is prepared to make the necessary adjustments, or who, like myself, have enough personal support around them to enable them to be self-employed.
To return to the taxpaying workforce is not "faking".
A very few people will be fortunate enough to have other resources to fall back on. Perhaps an insurance payout of some kind, or a lottery win, or the sale of assets, will save them from the indignity of having to complete a process that treats them as the worst kind of fraudster from beginning to end.
To have alternative resources is not "faking".
Most significantly, there are those who die before the assessment phase is complete.
To die of a condition is perhaps the strongest possible indicator that the condition was not "faked".
I'd provide more concrete statistics, but we don't have them. Once you leave ESA, you're not monitored. We don't know how many of these people have got jobs, have died, have killed themselves, have left the country... no one cares. The Express just goes ahead and calls them all "fakers".
Tuesday, 26 July 2011
Government launch new attacks even as select committee condemns propaganda
Cross posted with thanks to Latent Existence
The headlines today are screaming that a mere 7% of ESA claimants are fit for work. The Daily Mail says that "Benefits Britain marches on: Just one in 14 disability handout applicants are too ill to work" while the BBC claim "Tests claim few benefit claimants unfit to work" These figures are grossly misleading. They actually come from a Department of Work and Pensions press release, 26 July 2011 – Work Programme provides tailored support as latest figures show people are being found fit for work. The news stories haven't actually mislead about the contents of the press release too much, the propaganda comes from the DWP.
Lets start with the figures from the DWP.
For all new ESA claims from 27th October 2008 to 30th November 2010, the result of the initial WCA is as follows
- Support Group – 7%
- Work Related Activity Group – 17%
- Fit for Work – 39%
- Claim closed before assessment complete – 36%
- Assessment still in progress – 1%
These figures are true, but lie by omission. First of all, the figures given are for ALL that start a claim for ESA. As stated, 36% of people that start a claim drop out before they even get to their Work Capability Assessment. Some of these people will drop out because they perhaps shouldn't have applied in the first place. Some might even have been trying it on and then realised that they would be caught. Some recover enough to find work, some find work that fits around their disabilities. Some, however, drop out because they are so ill that they cannot face the application and testing process. We don't know, as no records are kept of reasons for dropping out, but I contend that many more than we know drop out because they are too ill to finish the process. Given that 36% of claimants are not tested, we cannot include them in the 'fit for work' category. That 7% of claimants is actually 11% of claimants who complete the process.
11% is still a very small number. That still casts 89% of claimants as cheats, doesn't it? Well no. No it doesn't. Not unless you are a tabloid writer. You see, 17% of total claimantss - or 26.6% of claimants that finish the process - are put in the Work Related Activity Group. Being put in this group DOES NOT mean that the claimant is fit for work! It means that there may be some job, as yet unknown, that the claimant could possibly manage to do, if they push themselves hard enough,possibly at high cost to their health, IF they receive the right support in terms of information, equipment, services and grants. People in this group must attend six interviews at the Job Centre over the course of a few months to try and determine just what this possible job could be, and the support that would be needed to do it. People in this group STILL RECEIVE ESA.
Adding those two together and leaving out the people that dropped out, that means that 37.5% of people tested were not fit for work. That still leaves 61% that were receiving ESA who were found fit for work. Are they all cheats? No. Here's why.
The Work Capability Assessment takes place at the end of the assessment phase of the claim. That means the test can take place up to 14 weeks after the person started to claim ESA. 14 weeks is a long time, and it should also be noted that people are often sick for a long time before they even apply for ESA, either on Statutory Sick Pay for 28 weeks, or just unaware that they can claim. Those people could easily have been sick for 9 months before being tested. 9 months is long enough for people to recover or start recovering from many health issues, and so these people would have been correctly being given ESA while unable to work. Health issues change, and finding these people fit for work now would be correct, but does not invalidate their claim in the previous months. I think if the WCA correctly finds someone capable of work after many months of illness but heading towards recovery, this is usually a good thing.
Assuming that changes in health conditions account for a chunk of that 61%, let's say a third, that still leaves the rest. Here's the thing. The accuracy of the testing process has been found to be wrong, broken, inadequate, however you want to put it, by MPs, a house of commons select committee, many disability rights charities, and many many individuals and activists.Even a person involved in designing the test has said that it is not fit for purpose.
33% of people found fit for work between October 2008 and August 2009 appealed against that decision. 40% of those overturned that decision and were awarded ESA. That's 27,500 people who were provably found fit for work when they were not. Many more people did not appeal, for many of the same reasons that may have caused people to drop out of the claims process.
Today the Commons Select Committee on the Migration from Incapacity Benefits to Employment Support Allowance released its 6th Report - The Role Of Incapacity Benefit Reassessment In Helping Claimants Into Employment. Among other things, that report criticised media coverage and stated that government had a duty to take more care when engaging with media.
5. Sections of the media routinely use pejorative language, such as "work-shy" or "scrounger", when referring to incapacity benefit claimants. We strongly deprecate this and believe that it is irresponsible and inaccurate. The duty on the state to provide adequate support through the benefits system for people who are unable to work because of a serious health condition or illness is a fundamental principle of British society. Portraying the reassessment of incapacity benefit claimants as some sort of scheme to "weed out benefit cheats" shows a fundamental misunderstanding of the Government's objectives. (Paragraph 40)6. Whilst fully accepting that the Government, and this Committee, have no role in determining the nature and content of media coverage, we believe thatmore care is needed in the way the Government engages with the media and in particular the way in which it releases and provides its commentary on official statistics on the IB reassessment. In the end, the media will choose its own angle, but the Government should take great care with the language it itself uses and take all possible steps to ensure that context is provided when information about IB claimants found fit for work is released, so that unhelpful and inaccurate stories can be shown to have no basis. (Paragraph 41)
I disagree with part of this in that I think that consciously or not, Conservative ministers have an ideological motive to move people off of benefits, portraying them as cheats if necessary, with the help of special advisors. (SPADS.) I believe that ministers and SPADS have been feeding selected information to the press to create a national view that is biased against sick and disabled people that claim benefits, and the press have been only too happy to amplify this.
Related Links
- DWP: 26 July 2011 – Work Programme provides tailored support as latest figures show people are being found fit for work
- Daily Mail: Benefits Britain marches on: Just one in 14 disability handout applicants are too ill to work
- BBC News: Tests claim few benefit claimants unfit to work
- Commons Select Committee on the Migration from Incapacity Benefits to Employment Support Allowance
- 6th Report - The Role Of Incapacity Benefit Reassessment In Helping Claimants Into Employment
Our response to the Daily Mail's article (22.07.11)
In the past few days, The Broken of Britain has received many messages - via our email and Twitter accounts, expressing concern, outrage and hurt at the content of an article published by the Daily Mail (which can be read here).
This article is a continuation of the Daily Mail's campaign of aggression against the ill and disabled, perpetuating the wider social perception of those who claim benefits as scroungers, cheats and enemies to tax-payers throughout the UK.
Describing Incapacity Benefit and Employment Support Allowance as existing to "weed out the work-shy", the writer - Gerri Peev, the journalist behind previous Daily Mail articles targeting our community - deigns that the health problems cited are not justifiable reasons to be on benefits, unlike other "serious" conditions.
Of course, we all understand that the effects of the symptoms listed in the article, or the illnesses underlying them, can be incredibly debilitating; 'malaise and fatigue' is almost certainly a swipe at sufferers of ME and CFS, 'unspecified pain' a shot at those with Fibromyalgia, and 'sleep disorders' an attack on people living with Insomnia and Narcolepsy. We all know that just living with these, and the other conditions targeted, can be difficult enough, let alone attempting to hold down a job.
Once again, the Daily Mail have sought to isolate us from society as a whole, creating images of benefit claimants "taking home" swag bags full of tax-payers' money, swung over our perfectly healthy backs. The photograph of a "model" posing in a Mr Lazy t-shirt, surrounded by beer cans and cigarettes is an especially nice touch!
Though acknowledging that WCA is a "controversial programme", they give no indication as to why it is, leaving the reader to infer that we are screaming about having to get off of our backsides and stop sponging.
Employment Minister Chris Grayling kindly says that the government are right to be re-assessing as they don't want anyone to be "left stranded on benefits", saying that we need to be challenged. Yes, Minister and Daily Mail, that's all disabled and ill people need - to be challenged into work!
A lot of you have asked how we are going to challenge this article, and, after discussing it, the answer is that we aren't going to. Why? Because The Daily Mail simply do not listen to our complaints. On a rare occasion, they make a small concession, only to reprint the scrounger-bashing story under a new heading, with new figures from the DWP, a day or two later.
As a result of continuing correspondence with the PCC, regarding a previous Daily Mail article, we know that progress with a complaint about the above article would be incredibly slow and limited, and we want to make sure that our efforts count. We want to concentrate on projects and pursuits where a difference can be made.
You cannot reason with the unreasonable, so we do not want to expend our limited energy and time attempting to, when we could be making progress elsewhere. This newspaper will never come around to our side, but others might.
At The Broken of Britain, we want to make all of our voices heard. As a community, we can disprove the lies and dispel the myths told and created by The Daily Mail and other areas of the media. Not to mention the government!
So please, raise your voices with us - blog, tweet, write, send letters - because, as we all know...
"Alone we whisper, together we shout"
Yours,
TBofB Team x
This article is a continuation of the Daily Mail's campaign of aggression against the ill and disabled, perpetuating the wider social perception of those who claim benefits as scroungers, cheats and enemies to tax-payers throughout the UK.
Describing Incapacity Benefit and Employment Support Allowance as existing to "weed out the work-shy", the writer - Gerri Peev, the journalist behind previous Daily Mail articles targeting our community - deigns that the health problems cited are not justifiable reasons to be on benefits, unlike other "serious" conditions.
Of course, we all understand that the effects of the symptoms listed in the article, or the illnesses underlying them, can be incredibly debilitating; 'malaise and fatigue' is almost certainly a swipe at sufferers of ME and CFS, 'unspecified pain' a shot at those with Fibromyalgia, and 'sleep disorders' an attack on people living with Insomnia and Narcolepsy. We all know that just living with these, and the other conditions targeted, can be difficult enough, let alone attempting to hold down a job.
Once again, the Daily Mail have sought to isolate us from society as a whole, creating images of benefit claimants "taking home" swag bags full of tax-payers' money, swung over our perfectly healthy backs. The photograph of a "model" posing in a Mr Lazy t-shirt, surrounded by beer cans and cigarettes is an especially nice touch!
Though acknowledging that WCA is a "controversial programme", they give no indication as to why it is, leaving the reader to infer that we are screaming about having to get off of our backsides and stop sponging.
Employment Minister Chris Grayling kindly says that the government are right to be re-assessing as they don't want anyone to be "left stranded on benefits", saying that we need to be challenged. Yes, Minister and Daily Mail, that's all disabled and ill people need - to be challenged into work!
A lot of you have asked how we are going to challenge this article, and, after discussing it, the answer is that we aren't going to. Why? Because The Daily Mail simply do not listen to our complaints. On a rare occasion, they make a small concession, only to reprint the scrounger-bashing story under a new heading, with new figures from the DWP, a day or two later.
As a result of continuing correspondence with the PCC, regarding a previous Daily Mail article, we know that progress with a complaint about the above article would be incredibly slow and limited, and we want to make sure that our efforts count. We want to concentrate on projects and pursuits where a difference can be made.
You cannot reason with the unreasonable, so we do not want to expend our limited energy and time attempting to, when we could be making progress elsewhere. This newspaper will never come around to our side, but others might.
At The Broken of Britain, we want to make all of our voices heard. As a community, we can disprove the lies and dispel the myths told and created by The Daily Mail and other areas of the media. Not to mention the government!
So please, raise your voices with us - blog, tweet, write, send letters - because, as we all know...
"Alone we whisper, together we shout"
Yours,
TBofB Team x
Monday, 25 July 2011
Urgent Appeal
**URGENT APPEAL**
Tomorrow, a terribly damning report will be released on ATOS. http://www.guardian.co.uk/politics/2011/jul/24/atos-faces-critical-report-by-mps?CMP=twt_gu
Our phones and emails haven't stopped ringing today with media requests and we simply don't have enough people to cover them all.
Most importantly, ITN want to do a piece for tomorrow on people who've HAD AN ATOS ASSESSMENT AND HAVE GONE ON TO A TRIBUNAL.
If you have I'm asking you a very big ask. Are you prepared to be interviewed? Will you tell them your story? Could you cope with TV cameras coming to your home today or tomorrow?
I know it's absolutely terrifying. I understand with all my heart how many of you are so frightened by the DWP and ATOS that you daren't even leave your names when you comment here, but this is a big chance. It is our chance to tell our stories, a chance to show the public how real people are made to suffer every day by these reforms.
If you think you might just be able to do this, please get in touch at suey2yblog@hotmail.co.uk and I promise, I will do everything I can to make it as painless as possible.
It means taking a personal risk, but it might also mean that you help to save millions from going through what you had to go through.
Thanks,
Sue& Kali
Disability benefit reform: is the government hiding behind Atos errors?
Disability benefit reform: is the government hiding behind Atos errors?
Righteous anger by disabled people over Atos incompetence in assessing benefit claims should also be directed at the government
Open Letter To Iain Duncan Smith
By Sue Marsh
The day you get that diagnosis is the day the blood runs cold in your veins. Everything stops. Sound is muffled in your ears, shock runs through you and you know in that moment that nothing will ever be the same again.
Life, that always seemed so ordered and full of potential becomes precious. A gift greater than any you ever appreciated. A privilege, not a right. Your own mortality comes crashing in around you, redefining love and hope and dreams for the future. Everything will change forever in that one horrifying moment.
If the unthinkable happens to one you love, the sense of impotence and fear is worse. You want it to be you. You'd give anything to change things around, to take away all the pain and suffering. You want to take on every invasive test, every painful procedure. You want it to be you laying there, pail and weak, vomiting endless traces of chemo or morphine into a grey carboard tray.
You want to be there. All the time. Every minute of every day. You want to protect the person you love most in the world, to fight for them, to arrange the very best care available. Suddenly work and meetings and focus groups are forgotten - irrelevant even - when contrasted with the battle for life.
Money won't save them. It might make things easier, speed up care or assure access to the most innovative treatments, but the battle is yours and yours alone. Together.
You grieve. Grieve for the carefree days, the easy confidence that good health brings. You grieve for the future, so cruelly and randomly threatened. You grieve for the love and support that always came first. You grieve for your children and the spectre that now hangs above their heads every minute of every day. Youngsters become carers and you grieve for the easy innocence they will never know again.
The luckiest of all might be able to leave work that very moment, rush home and gather up family in strong, caring arms. The luckiest will only have to face a battle with the disease now tearing their family apart, with little thought for other practicalities.
Most are not that lucky.
Most will find that just as their world falls apart, they must still pay the mortgage, still feed the children, still keep working hard. They will suffer endless, unimagined agonies as they try to keep all the balls in the air, desperate to fight side by side with their soul mate but unable to do so.
They might lose a wage. Suddenly and without warning their income may half just as they need it most. They may have no choice but to watch in terror as their modest savings drain away, placing fear of poverty side by side with the fear of death.
Is there anything worse? Could there be anything worse than finding your life turned upside down in every area? Job under threat, home at risk, ambitions and dreams destroyed? As your children's faces become etched with fear, do you tell them Mummy will be OK? Do you keep your financial fears to yourself? Do you take on every burden until the pressure gets too much? Do you try to do the work of 10 men? Superman at work, loving support at the hospital bed, devoted father and capable housekeeper? Can you bear the pressure or do you crack yourself?
There is something worse.
Finding that there is no cure.
Finding that there are no magic chemo bullets to stamp out the darkness, no dazzling operations to cut out the contagion. Treatments are patchy - the doctors tell you if you're lucky they can "manage" your condition, but from this day, life will be about survival. Forever.
The treatments won't stop in a month or a year, but they will still make you vomit or send shooting pains through your skull or make you so sensitive to sunlight that you can no longer go outside. No longer take your children to the park or dig sandcastles in the hazy summer sun. They might make you weak, or angry or depressed. They might cause more symptoms than the disease itself, but they keep you alive and "alive" is all those who love you need. Do anything Mummy, but don't die.
The boss who's been so supportive can't support you forever. 6 months, maybe even a year, but in the end, even the most caring boss will have to draw the line. What do you do? Who will care for your family while you work? Is you child old enough to call an ambulance if she has to? Would she know where the special pills are kept in case Mummy won't wake up? Can you teach her your work number or do you fret and worry through every day, never knowing what you will return home to?
Things won't improve. A grey faced doctor might tell you gently that they will only ever get worse. Functions will fail, dignity will crumble, every previously automatic task will need thought and support. There will be wheelchairs or oxygen tanks or feeding tubes. You will have to learn to change incontinence-bags or give injections or rig up sterile feeds. You will have to find money for a hoist or a voice recognition system.
One day, Mummy might not be able to answer. She may not be able to walk or leave her bed. Birthday parties will have to move upstairs to a fetid room that smells of the end, but you will smile brittle smiles and put up bunting, pretending that nothing has changed. You will all laugh a little too shrilly, jump just a little too nervously, but you will pretend. When the kids are safely tucked up and your partner is finally sleeping a tortured morphine sleep, you will cry great heartwrenching sobs into a cushion so nobody hears.
There are legions of us Iain. Probably millions. We fight great battles every day. We find resilience and love we never knew existed. We find pride in the face of indignity, hope in the face of despair. Our relationships are tested every day and every day we have to whisper "but I love them". Every day, that love has to win. Every day, love is all we have left to get us through.
We pretend the poverty doesn't matter and when faced with life or death, it's funny, but it doesn't seem to matter so much. An afternoon in a park at the beginning of spring, watching the children climb steps to great slide-summits, their joyous eyes flashing in the watery sun is almost too much pleasure to bear. The poignancy of knowing it could always be the last time makes the simplest things precious.
We pretend our ambitions and dreams were not important. Strange, but when your ambition becomes surviving to see your children married, it's true, they don't matter so much.
We pretend we're strong, but we only have the strength we all have, buried deep inside us. We just have to dig deep down to find it. Every day. Forever.
****************
This is why you cannot decide, randomly, that after a year, our families must struggle on alone. A year?? Why Time Limit ESA to a year? Why remove all support from these vulnerable families after one year? Why not 6 months or 3 years or a day? It bears no relationship to the real world, it is policy designed by Dali.
This is why you cannot make us wait 6 months for Disability Living Allowance. Why 6 months? By then we may be bankrupt, we may have lost our homes. We may be dead. The state may end up paying much more through picking up the pieces than in supporting us fairly from day one.
This is why more people must qualify for long term support and go into the Support Group of ESA. Because at the moment, you are failing people with lives like mine. People with Parkinson's and Arthritis and MS. Mothers and sons, daughters and fathers. People with lupus, schizophrenia, bowel disease, kidney failure, epilepsy, personality disorder, heart disease, COPD and thousands of less well known conditions that destroy lives. Countless things as devastating as cancer and some more so.
This is not "welfare." Welfare means to fare well. It is the mark of compassion and evolution in a democratic society. It means no-one should be left in absolute desperation. Your policies are causing this total desperation and I'm sure it is not what you want to do or set out to do.
By all means reform. Goodness knows the system does need to change, but the great myth is that it needs bigger sticks to beat us with and stricter reasons to ensure we do not qualify. Please Iain, listen to me today. You have all beat us hard enough for many years. There is nothing more to squeeze or remove or deny. We live in poverty and uncertainly already, and we have reached a tipping point. Labour's ESA was disastrous enough and already failing. Time limiting, tightening the descriptors yet again and leaving a lengthy qualifying period for DLA is going to cause real hardship and suffering.
Please listen. Please think again.
*************
Please do all you can to help me share this today. You can link to it, share it on Facebook, Twitter or Google+. If you have a Conservative MP, then PLEASE can I ask you to send him this today? You can do it in just a few moments here http://www.theyworkforyou.com/
Thank you.
The day you get that diagnosis is the day the blood runs cold in your veins. Everything stops. Sound is muffled in your ears, shock runs through you and you know in that moment that nothing will ever be the same again.
Life, that always seemed so ordered and full of potential becomes precious. A gift greater than any you ever appreciated. A privilege, not a right. Your own mortality comes crashing in around you, redefining love and hope and dreams for the future. Everything will change forever in that one horrifying moment.
If the unthinkable happens to one you love, the sense of impotence and fear is worse. You want it to be you. You'd give anything to change things around, to take away all the pain and suffering. You want to take on every invasive test, every painful procedure. You want it to be you laying there, pail and weak, vomiting endless traces of chemo or morphine into a grey carboard tray.
You want to be there. All the time. Every minute of every day. You want to protect the person you love most in the world, to fight for them, to arrange the very best care available. Suddenly work and meetings and focus groups are forgotten - irrelevant even - when contrasted with the battle for life.
Money won't save them. It might make things easier, speed up care or assure access to the most innovative treatments, but the battle is yours and yours alone. Together.
You grieve. Grieve for the carefree days, the easy confidence that good health brings. You grieve for the future, so cruelly and randomly threatened. You grieve for the love and support that always came first. You grieve for your children and the spectre that now hangs above their heads every minute of every day. Youngsters become carers and you grieve for the easy innocence they will never know again.
The luckiest of all might be able to leave work that very moment, rush home and gather up family in strong, caring arms. The luckiest will only have to face a battle with the disease now tearing their family apart, with little thought for other practicalities.
Most are not that lucky.
Most will find that just as their world falls apart, they must still pay the mortgage, still feed the children, still keep working hard. They will suffer endless, unimagined agonies as they try to keep all the balls in the air, desperate to fight side by side with their soul mate but unable to do so.
They might lose a wage. Suddenly and without warning their income may half just as they need it most. They may have no choice but to watch in terror as their modest savings drain away, placing fear of poverty side by side with the fear of death.
Is there anything worse? Could there be anything worse than finding your life turned upside down in every area? Job under threat, home at risk, ambitions and dreams destroyed? As your children's faces become etched with fear, do you tell them Mummy will be OK? Do you keep your financial fears to yourself? Do you take on every burden until the pressure gets too much? Do you try to do the work of 10 men? Superman at work, loving support at the hospital bed, devoted father and capable housekeeper? Can you bear the pressure or do you crack yourself?
There is something worse.
Finding that there is no cure.
Finding that there are no magic chemo bullets to stamp out the darkness, no dazzling operations to cut out the contagion. Treatments are patchy - the doctors tell you if you're lucky they can "manage" your condition, but from this day, life will be about survival. Forever.
The treatments won't stop in a month or a year, but they will still make you vomit or send shooting pains through your skull or make you so sensitive to sunlight that you can no longer go outside. No longer take your children to the park or dig sandcastles in the hazy summer sun. They might make you weak, or angry or depressed. They might cause more symptoms than the disease itself, but they keep you alive and "alive" is all those who love you need. Do anything Mummy, but don't die.
The boss who's been so supportive can't support you forever. 6 months, maybe even a year, but in the end, even the most caring boss will have to draw the line. What do you do? Who will care for your family while you work? Is you child old enough to call an ambulance if she has to? Would she know where the special pills are kept in case Mummy won't wake up? Can you teach her your work number or do you fret and worry through every day, never knowing what you will return home to?
Things won't improve. A grey faced doctor might tell you gently that they will only ever get worse. Functions will fail, dignity will crumble, every previously automatic task will need thought and support. There will be wheelchairs or oxygen tanks or feeding tubes. You will have to learn to change incontinence-bags or give injections or rig up sterile feeds. You will have to find money for a hoist or a voice recognition system.
One day, Mummy might not be able to answer. She may not be able to walk or leave her bed. Birthday parties will have to move upstairs to a fetid room that smells of the end, but you will smile brittle smiles and put up bunting, pretending that nothing has changed. You will all laugh a little too shrilly, jump just a little too nervously, but you will pretend. When the kids are safely tucked up and your partner is finally sleeping a tortured morphine sleep, you will cry great heartwrenching sobs into a cushion so nobody hears.
There are legions of us Iain. Probably millions. We fight great battles every day. We find resilience and love we never knew existed. We find pride in the face of indignity, hope in the face of despair. Our relationships are tested every day and every day we have to whisper "but I love them". Every day, that love has to win. Every day, love is all we have left to get us through.
We pretend the poverty doesn't matter and when faced with life or death, it's funny, but it doesn't seem to matter so much. An afternoon in a park at the beginning of spring, watching the children climb steps to great slide-summits, their joyous eyes flashing in the watery sun is almost too much pleasure to bear. The poignancy of knowing it could always be the last time makes the simplest things precious.
We pretend our ambitions and dreams were not important. Strange, but when your ambition becomes surviving to see your children married, it's true, they don't matter so much.
We pretend we're strong, but we only have the strength we all have, buried deep inside us. We just have to dig deep down to find it. Every day. Forever.
****************
This is why you cannot decide, randomly, that after a year, our families must struggle on alone. A year?? Why Time Limit ESA to a year? Why remove all support from these vulnerable families after one year? Why not 6 months or 3 years or a day? It bears no relationship to the real world, it is policy designed by Dali.
This is why you cannot make us wait 6 months for Disability Living Allowance. Why 6 months? By then we may be bankrupt, we may have lost our homes. We may be dead. The state may end up paying much more through picking up the pieces than in supporting us fairly from day one.
This is why more people must qualify for long term support and go into the Support Group of ESA. Because at the moment, you are failing people with lives like mine. People with Parkinson's and Arthritis and MS. Mothers and sons, daughters and fathers. People with lupus, schizophrenia, bowel disease, kidney failure, epilepsy, personality disorder, heart disease, COPD and thousands of less well known conditions that destroy lives. Countless things as devastating as cancer and some more so.
This is not "welfare." Welfare means to fare well. It is the mark of compassion and evolution in a democratic society. It means no-one should be left in absolute desperation. Your policies are causing this total desperation and I'm sure it is not what you want to do or set out to do.
By all means reform. Goodness knows the system does need to change, but the great myth is that it needs bigger sticks to beat us with and stricter reasons to ensure we do not qualify. Please Iain, listen to me today. You have all beat us hard enough for many years. There is nothing more to squeeze or remove or deny. We live in poverty and uncertainly already, and we have reached a tipping point. Labour's ESA was disastrous enough and already failing. Time limiting, tightening the descriptors yet again and leaving a lengthy qualifying period for DLA is going to cause real hardship and suffering.
Please listen. Please think again.
*************
Please do all you can to help me share this today. You can link to it, share it on Facebook, Twitter or Google+. If you have a Conservative MP, then PLEASE can I ask you to send him this today? You can do it in just a few moments here http://www.theyworkforyou.com/
Thank you.
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