Archive | October 2012

(Why We’re Not) Benefit Scroungers: About

Yesterday I published a post with extracts from my book that is coming out in December.  Today I realised I had put very little information about my book on this blog, and I should probably let my readers know what my book is about.

It’s called “Why We’re Not Benefit Scroungers,” and has the subtitle “Living with disability and chronic illness in modern Britain.”

The first of its two parts is about the current welfare system and the changes the government is making.  This part is fact-based, relying on data and publications from bodies such as the Joseph Rowntree Foundation, Citizen’s Advice Bureau and Department for Work and Pensions.  One chapter deals with Employment and Support Allowance and the facts surrounding its unpopular assessment process.  Another looks at Disability Living Allowance, how assessment for this currently works and what is happening with the changes to Personal Independence Payments.  Other chapters discuss common media misrepresentations – and sometimes government misrepresentations – and some of the costs associated with disability and chronic illness.

The second part features stories about people with different disabilities and illnesses.  These are written as memoirs, giving the experiences of these people as they recall them.  For some, ill-health and disability has interrupted or hindered education.  For others, illness came later in life and has forced a withdrawal from work.  Some disabilities or illnesses can be worked around with understanding from the employer; others require the purchase of aids and adaptations.

All these stories show the obstacles that face the chronically sick and disabled in this country.  From inaccessible public transport to incomprehensible instructions, this society is not prepared for the needs of some of its most needy people.  These stories show some of the realities of living with disability or chronic illness in this country today.

I will be publishing some extracts from the book on my blog over the next week so that you can get more of an idea of what it is about.  I haven’t got a planned publication date yet, partly because I’ve lacked the health to get on with it, but I intend to have it out at the beginning of December.  If I can sort out how to work my website, I will be making the book available to pre-order.  Keep watching or follow me on Twitter (@AidaAleksia) to find out more.


(Why We’re Not) Benefit Scroungers: Extract 1

This is an extract from my book, “Why We’re Not Benefit Scroungers”, coming out in early December.


“General saving is really important to us,” he says. “We are a nation that doesn’t save … We drifted into a culture where consumption was all, and you borrowed to spend … So we change the culture so that you save, you invest and you prepare for the worst. Like we insure our cars, this is basically insuring our lives.”[1]

Iain Duncan Smith, MP for Chingford and Wooding Green, and Secretary of State for Work and Pensions.

Which sounds great.  Insure your life, then if (when) bad times come, the insurance will pay out to keep you safe.  This is what National Insurance was introduced for.  It is what private health or life insurance contributes towards.  But life, unlike owning and insuring a vehicle, is not a luxury.  If you are poor, you can choose not to own a car (although this reduces job access, further contributing to your poverty).   But few people consider that the alternative to life insurance for the poor should be for them to choose not to live.

Most people don’t spend time reflecting on how they will manage if they fall ill.  Is the mortgage on the house affordable if you develop lupus and can no longer work?  Can you raise two children if you lose your sight?  Will you be able to care for your ageing parents if you have a stroke and become hemiplegic?  Should you avoid all holidays abroad, in order to save up money to ensure you can tide yourself and your family over when the tide goes out on your health?  Do you live in the smallest house you can fit your family into, live in the cheapest area you can, own the most economical car, deny yourself all luxuries – so that on the day when the stroke strikes, the heart attack attacks or your memory walks out and forgets to return, you have enough savings that you do not ever need to ask for support from a charity, friend or government? …

Living with disability or chronic illness is costly.  That is why support is needed.  Whether in work or not, disability brings additional costs to life that the disabled person may not be able to meet.  Disability and chronic illness can hinder education, employment and access, as well as bringing medical costs. …

Disabled people often want to work and aspire to work as much as any non-disabled person.  But their health, combined with lack of accessibility in society, effectively discriminates against them…

The Greater London Authority recognises disablism as a form of oppression.  “Medical and associated interventions should in no way be seen as substituting for ongoing work to challenge and deal with barriers faced by disabled people in mainstream society… ‘Equal opportunities’ does not mean that all people are treated the same, but rather that their diversity is recognised and accommodated to enable them to access services and opportunities.”[2]

The Joseph Rowntree Foundation said: “Much could be achieved if society was properly attuned to the needs of disabled people and effectively enhanced services could do much to reduce the costs carried by individuals. At the same time, additional resources directly for individuals are also required in order to facilitate the ‘level playing field’ that disabled people seek.[3]

[1] Iain Duncan Smith, MP for Chingford and Wooding Green, and Secretary of State for Work and Pensions.  In The Telegraph, Iain Duncan Smith: I’m not afraid to light the fuse on disability reform, 13th May 2012, Robert Winnett;

[2] Barer, Davies and Fitzpatrick. Review of the London Health Strategy high-level indicators, Section 3, 2003, London Health Authority

[3] Disabled People’s Costs of Living, 2004, JRF

Esther McVey and the Tipping Point

The Hardest Hit campaign recently brought out a report, the Tipping Point, about the impact of the welfare reform on disabled people.  Various papers ran an article on this report, including a statement from Minister for Disabled People Esther McVey, such as the one reported by the BBC:

Ester McVey said there were a lot of misleading stories about the impact of welfare reforms on disabled people.

“The truth is – as the Paralympics showed – the UK continues to be a world leader in the rights for disabled people.

“However, too often under the current system we are wasting money on overpayments where people’s conditions have changed, with £630m a year on DLA alone.”[1]

Are there any misleading stories?  Yes, but not the ones Ms McVey is implying.

Here are a few examples of what is implied or stated about fraud in the benefits system:

“Half a million people are set to lose disability benefits as the Government pushes ahead with plans to rid the system of abuse and fraud, Iain Duncan Smith says.”[2]

“The amount of money lost to benefit fraud and error has soared by a staggering £200million since the Coalition took office – despite repeated pledges from David  Cameron to fight the scandal.”[3]

“More than £1BILLION lost to disability benefit fraud and error – and that’s just the tip of the iceberg.”[4]

“Too much of what workers pay is wasted in a bloated welfare system where fraud and abuse is rife.” [5]

What about the ones McVey is implying?  From the rest of the article and what McVey says, I assume she is talking about articles discussing negative impacts of the reform on disabled people.  For example, the fact that the government is cutting 20% off the working-age Disability Living Allowance bill.  By definition, this means less money and less support for the disabled.

Or the fact that it is ending the Independent Living Fund.

Or that whilst the government is removing billions from welfare, all the cuts focus on just 1/3 of benefit recipients; i.e. on anyone who is not a pensioner.

Demos calculated that disabled people and their carers are £500 million worse off.  They report deteriorations in mental health, increasing isolation and increasing burden on informal care.[6]

These are just a few of the impacts.

Is the UK a world leader for disabled rights?  Well, the UK is below average for proportions of disabled people in jobs.  Although just over 90% of disabled people have an income from work, benefits or both (making UK the third best of OECD countries for this measure), the UK has one of the toughest tests for incapacity and one of the lowest rates of payments.  The personal income of disabled people, whether in work of not, is amongst the lowest of OECD countries.  So whilst many disabled people manage to get an income together from somewhere – whether work, disability benefits or other benefits – this income is low compared to both the income of disabled people in other countries and the income of non-disabled people in this country.

The Paralympics showed very little.  They did not show the increase in disability hate crime in this country, or the increase in pejorative language used by the media towards benefit recipients.  Transport for London did introduce ramps for 16 of its tube stations, but the number of accessible stations remains at 66 of 270.  Not all buses will take people in wheelchairs, even when there is a ramp available and working.  Small train stations remain inaccessible – I recently took a 2 hour detour when station staff forgot to get me off at the right station, and the station after did not have wheelchair access to the platform for trains going back to where I was supposed to be.

Are we wasting too much money on overpayments?  £630 million is a figure estimated by the previous minister for Disabled People, Maria Miller.  It refers to individuals where change in circumstances has been so gradual that a definite cut-off for no longer qualifying for DLA cannot be identified.  But Ms Miller did not also estimate how much is underpaid because people who gradually become eligible for DLA do not apply at the moment when they cross the boundary from not qualifying to qualifying.  Apart from this type of under- or over-payment, £180 million is overpaid due to errors and £310 million is underpaid due to errors.

Will we be proud of Universal Credit?

Some time ago Lord Freud (Minister for Welfare) published an article in the Huffington Post extolling Universal Credit as a benefits system we can be proud of an should embrace.  This is a quick critique of what he said.


“Universal Credit will be with us next year. There have been questions raised lately and it’s worth being clear about where we are, when it will come in, and how it will impact on people.

We are rolling out Universal Credit in Greater Manchester and Cheshire regions in April next year – six months before the start of the national roll-out in October. This is the start of a four-year process that will see eight million households move on to Universal Credit and benefit from it.”[1]

So far correct.


“Universal Credit will create a benefits system that will secure the safety net we are all proud of – with £2 billion a year more in benefits paid out and around 900,000 children and adults being lifted out of poverty – and ensure people are actively helped by the Welfare State into independence.”

The Institute for Fiscal Studies estimated that Universal Credit would, in the long run, cost £1.7 billion more than the current system of benefits.  By ‘in the long run’ they mean that they are ignoring transitional protection.  Transitional protection means that anyone currently on benefits who would be worse off with UC will receive the same amount as they currently receive, until a change in circumstances occurs.  At that point payments will drop to UC levels.  Including transitional protection, Universal Credit will cost £3.6 billion more, but this will not be the long-term cost as the number of people receiving transitional protection will decline over time as their circumstances change.

Lord Freud is therefore correct to say that UC will result in £2 billion more in payments under UC – as long as no other changes are made that would reduce welfare payments.  This isn’t the case, but as long as UC and only UC is considered, then it is true that welfare payments will rise by £2 billion.

UC will reduce relative and absolute poverty.  The IFS estimated that, without transitional protection, UC will result in 450 000 children and 600 000 working-age adults being taken out of relative poverty.[2]  The DWP estimated a lower number of children, which is why Lord Freud has given lower figures.  But he is correct that UC will reduce poverty.

“Currently the system actively holds people back from getting into work and we have a duty to stop this.”

Jobseekers Allowance is £71 a week if you are 25 or over, or £56.25 if you are aged 16-24.  If you are on JSA, then you can also get Housing Benefit and Council Tax benefit.

Housing Benefit has a maximum of £400 a month for four bedrooms, £340 for 3 bedrooms, £290 for two bedrooms and £250 for 1 bedroom or shared accommodation.[3]  Housing Benefit is available to those on low incomes as well as those on JSA. Child Benefit is paid regardless of other income or money received.  Other benefits are tapered off as work income increases.

To see how work incentives occur, let’s consider one case – leaving aside any considerations of why someone on such low income is living in such an expensive area as I have assumed here.  This person is single, over 35, has no children and works for minimum wage.  He rents accommodation for £250 a week and pays £2000 a year in Council Tax.  He has contracted out of the state second pension, is not paying into a private pension scheme and has no savings or assets.  The person is also looking for more work.  Because he has no children, he only receives Working Tax Credit once he is working for 30 or more hours a week.

  Housing Benefit Council Tax JSA or Working Tax Credit wages Total Extra
Unemployed 250 38.47 71 0 359.47 0
11 hours 250 38.47 5 71 364.47 5
16 235.03 33.87 0 99.04 367.94 8.47
24 230.02 24.02 0 148.29 375.33 15.86
30 162.57 11.57 52.08 173.53 401.75 42.28
40 134.62 2.97 52.08 218.53 408.20 48.73


This case shows that there is some incentive to work for this person.  If he went from no work to 30-40 hours of work, he would be £40-50 a week better off.  An extra £40 can greatly increase the quality of housing that is affordable, or be enough to own a car, or have a holiday abroad.

Working less than 16 hours a week may not be worth the effort – it’s not even £10 extra.  This may be a ‘passive’ holding back from work – I’m assuming that by ‘active’ Lord Freud means people who would be worse off working, rather than just not very much better off.


So how about a couple?  This couple has no children, and the partner does not work.

  Housing Benefit Council Tax JSA or Working Tax Credit wages Total Extra
Unemployed 250 38.47 71 0 359.47 0
11 hours 250 38.47 10 71 369.47 10
16 250 38.47 0 99.04 387.51 28.04
24 232.56 33.11   148.29 413.96 54.49
30 167.77 13.17 89.53 173.53 446.00 86.53
40 152.95 8.61 89.53 218.53 449.43 89.96


My couple now has two children under 20; one is over 10 and the other is under 10. Because one is over ten and they are of opposite sexes, they are entitled to separate bedrooms.  This means rent can be up to £340, although I am assuming Council Tax remains at £2000.  The partner is still not in work.  No childcare costs are paid for these children.  The family does not live in London.  Nor does it live in Leicester, Bradford, Black Country, Edinburgh, Lothian and Borders or Cardiff and Vale.

  Housing Benefit Council Tax JSA or Working Tax Credit Child Tax Credit Wages (40 hrs is post tax) Child Benefit Total Extra
Unemployed 340 38.47 111.45 113.68 0 33.70 637.30 0
11 hours 340 38.47 50.45 113.68 71 33.70 647.30 10
16 340 38.47 0 113.68 99.04 33.70 624.89 -12.41
24 307.26 28.40 74.34 113.68 148.29 33.70 705.67 68.37
30 279.68 19.91 89.53 113.98 175.53 33.70 712.03 74.73
40 264.85 15.35 89.53 113.68 198.34 33.70 715.45 78.15


As you can see, there continues to be a ‘passive’ deterrent to work when paid work is at minimum wage and is part-time.  Full-time work and work that is paid above minimum wage will generally be worth the effort.

There is an ‘active’ deterrent, but this occurs only in situations where a parent works between 16 and 24 hours a week.  This is because the entitlement to JSA is lost at 16 hours, but Working Tax Credit for parents does not start until 24 hours a week.[4]  This is a change brought in by the current government from 6th April 2012; if they had not brought this in then there would not be any ‘active’ disincentives to work.

Lord Freud is largely incorrect to say that the system actively holds people back.


“By bringing together six major benefits, people will be able to manage their claims much more simply. The current risks people face by moving into work, and the fears they will be worse off, will go.  Universal Credit will remove the barriers that we have under the current system where starting a job means switching from one set of benefits to another and informing councils, Jobcentre Plus and the HMRC.  This mountain of paperwork alone is now enough to stop many people from moving into work. Under Universal Credit, claiming will be much simpler and the one benefit will stick with people as they move from unemployment and into work.”

Having looked at the different benefits and what UC replaces, I can agree that UC looks simpler, although it is not as simple as it could be.  UC means that people need only apply to the DWP, and not also to the HMRC for tax credits.  It means that only one benefit is applied for, rather than several – although passported benefits may not be that much effort anyway.  UC means that there will be one tapering rate when a benefit recipient increases the number of hours worked, rather than the different rates that currently exist.

Paperwork in applying for benefits does put people off; whether this is important in terms of stopping people moving into work is questionable.  I have no experience of moving off benefits into work so can’t comment.  The government does however have a good website system for assessing what benefits a person is eligible for.  I have used it above to work out the benefits for different scenarios.  A person does not need to know the tapering rate of a benefit to be able to work out what benefits they will receive under a change in circumstances.  Nor does a person need an understanding of maths, disregards and tapering rates as percentages of extra income.


“Many of the new rules under Universal Credit are designed to mimic work -whether that is self employed or paid employment – with much more accountability for both individuals and households.

For the small businesses where people also claim benefits, a requirement to do simple monthly reporting will help people keep a closer grip on their accounts and to budget effectively. In many cases it will also help people to grow their businesses. And in fact, I am working the Chartered Institute of Taxation to simplify the system for small businesses.”

These new rules include being paid monthly in arrears.  What this fails to recognise is that many employers, especially at the low-end of the wage scale, pay weekly – only half of jobs paying £10 000 a year use monthly pay packets.[5]  Monthly payments only mimics higher end jobs.  Additionally, it could leave people without money for a month whilst employers and the DWP catch up with changes in employment status such as job loss.[6]

The government even seems to have recognised that some families may struggle to budget with monthly payments: “The Government is seeking providers who can supply products with extra budgeting functions to support claimants as they move to the new benefit Universal Credit.”[7]  Whilst this may well be very helpful for many clients, it is odd that the government first claims that monthly payments will ensure budget responsibility and then claims a need to spend £80-145 million on developing schemes to manage people’s budgets for them.[8]  This need was also picked up on by the thinktank Social Market Foundation in their report, “Sink or Swim,” although they encourage an opt-in approach by individuals rather than the government identifying those whom they deem vulnerable.

The government plans to make all benefit recipients report any income at the end of every month.  But the Chartered Institute of Taxation has ruled that these extra burdens include deadlines that many businesses may be unable to meet.  According to the CIT, “ rule preventing losses from one assessment period being carried forward to the next ‘shows fundamental misunderstanding of how businesses operate.’”[9]  These monthly transactions would be calculated using different methods and criteria from those determining self-employment.  There seems to be little foundation for Freud’s comment that this will be helpful for small businesses.  however, it is good to note that he is still in consultation with the Institute on this matter.


“Most importantly of all, under Universal Credit people will know they are better off in work than on benefits.”

Well, yes.  But the same is true for the majority of people under the current system, and where it is not true it is because of changes made by this government to Tax Credit eligibility.  So UC is only an improvement if the incentives to work (i.e., more money is kept) are greater than the current incentives.  Work incentives are largely better under UC, but not always.  They are better for:

  • single, no children: up to 30 hours
  • single, 2 children: up to 16 hours
  • couple, no children: 2nd earner less than 10 hours
  • couple, 2 children: always better off under UC

Work incentives under UC are the same as the current system for:

  • single, no children: 40+ hrs

Work incentives under UC are worse than the current system for:

  • single, no children: 30-39 hours
  • single, 2 children: over 16 hours
  • couple, no children: 2nd earner works over 10 hours


“We are working closely with Councils too as they introduce localised Council Tax support schemes. The speculation that these will undermine the work incentives in Universal Credit is misguided. It fails to take into account the increased earnings disregards in Universal Credit – the amount that someone can earn before their Universal Credit starts to be reduced.”

As far as I am aware, concerns that the new Council Tax system will undermine UC is not due to lack of consideration of the increased earnings disregard.  As the above bullet-points show, UC does not uniformly improve work incentives.  Nor does UC mean everyone wins.  And UC tapers at 65%, which is higher than the taper rate for tax credits.  The Institute for Fiscal Studies said that, “It is difficult to see how a localised form of CTB could work alongside Universal Credit without undermining the government’s aims of a simpler benefit system with more transparent and stronger incentives: a fully localised CTB could lead to a complicated and opaque benefit system, if the hundreds of authorities that currently administer CTB each have their own rules for its replacement; and giving local authorities the ability to determine the withdrawal rate of CTB (or its replacement) could undermine any strengthening of work incentives that might arise when Universal Credit is introduced.”[10]  There is no reason to believe that Lord Freud is correct in saying that increased earnings disregards will be sufficient to counter any negative effects of localised CTB.


“As well as helping people to move into work, Universal Credit will get people online and closer to the jobs market.  Independent research carried out by Ipsos Mori, reveals that 78 per cent of working age benefit claimants say they use the internet already – clearly demonstrating that being online is suitable for most claimants.  However, we recognise that not everyone is ready to use online services and we are making sure that there will still be face-to-face and telephone support in place for those who need it.

We are working now with councils across Britain to have this support in place – and to ensure the skills people gain from learning to claim online also help them to look for work online.”

Whilst 78% use Internet, 10% of these (7.8% of the total) did not use it at home, meaning that overall 30% did not have internet access at home.  People on JSA were particularly likely to not have access to internet where they lived.[11]

But the information that matters most comes out later.  People were asked about their use of technology, specifically using self-service tills and various uses of the internet.  At best, only 51% of respondents used and were happy to continue using internet for searching for jobs online, and a further 10% had never done so but would like to try.  The possible negative responses were ‘I have done this but am not interested in doing it again’ and ‘Never done and not interested/doesn’t apply to me/never use service.  For using the internet for social network sites, 47% selected one of these responses.  For online shopping it was 47%; online banking was 51%; finding out about government services, such as entitlement to benefits, was 43%; and claiming benefits online was 58%.

Only 14% of people had previously used the internet to make a claim for benefits.  Only 43% had ever used the internet to find out about government services.

So the majority have not used the internet to access benefits, despite this being the recommended route, and the majority do not want to claim benefits online; 43% also do not wish to find out about benefits online.

These figures were for ‘main claimants’, defined as the member of the household that receives the largest amount of benefits.  When all claimants are considered, 62% responded positively when asked if they would be willing to make an application for a benefit or Tax Credit online.  45% said they would need help or support.  Reasons against online use included lack of skills (32% of respondents) and low literacy (9%), fear of making a mistake (21%) and cost (13% cited cost of computer, 10% cited cost of internet).

Evidence submitted to the DWP by the Centre for Economic and Social Inclusion suggests even worse figures:[12] “Universal Credit will also serve to reduce the channels through which individuals can claim benefit. As the draft regulations make clear, online claiming will be the only option available to claimants unless they fall “within a class of case for which the Secretary of State accepts telephone claims or where he is otherwise willing to do so.” On the latest data just 19.6% of new JSA claims were made online,[13] while ONS figures show that almost a quarter of households have no internet access and that the rate of internet use decreases in line with income.”[14]

Overall, these are not figures that suggest an on-line service of benefits is something that will work well or easily for benefit claimants.


“Our IT programme for Universal Credit is on time and, in fact, and is already being tested by claimants. Rather than a big bang approach we will be rolling out Universal Credit gradually. Nor are not starting from scratch, we are using existing IT systems and building the extra capacity and capability as we need it.”

But BBC News quoted Labour’s Shadow Work and Pensions Secretary Liam Byrne as saying, “Universal Credit is overdue and over budget and now everyone from the chancellor to charities, the CBI to local councils is warning this is a car-crash about to happen.  We’ve been warning of this for months and we’re summoning Iain Duncan Smith to the Commons for a full scale debate.”[15]  Liam Bryne led an opposition day debate on this topic.[16]  He has said that UC is £100 million over budget, nine months late and in danger of becoming a car crash.[17]  Leaked documents showed that part of the welfare reform – real time information on finances – has been rated as having significant risk of failure.[18]

“We are working with other Government departments, councils, housing associations and community groups across the country to prepare people for the change. We will even establish a hotline for MPs as the benefit comes in to answer their questions.”

Well, I hope they are, although DPAC might point out that the DWP sometimes claims to be in discussion with groups with whom it has not had any discussions.

“Universal Credit is about to become a part of the lives of millions of people across Britain. It will simplify their benefits and ensure their path into work is much easier and clearer. I want everyone to embrace that.”

It is unclear if UC will make paths into work easier and clearer.  Until it is shown that UC is a success, I have no intention of embracing it as such.

[1] Freud, 4th October 2012, Universal Credit will create a benefits system we are all proud of, Huffington Post.

[2] Brewer, Browne and Joyce, 2011, Child and working-age poverty from 2010 to 2020. Institute for Fiscal Studies.

[4] If a couple has children, together they must work at least 24 hours and one of them must work at least 16 hours.  In this hypothetical example, only one adult works so this adult must work 24 hours.

[5] Sink or Swim, Social Market Foundation

[6] ibid., IFS Brewer, Browne and Wenchao, 2011, Universal Credit: A Preliminary Analysis. Institute for Fiscal Studies

[7] Freud, 17th September 2012 New financial products to help Universal Credit claimants manage their money, DWP

[10] Brewer, Browne and Wenchao, 2011, Universal Credit: A Preliminary Analysis. Institute for Fiscal Studies

[11] Tu and Ginnis, 2012, Work and the welfare system: a survey of benefits and tax credits recipients. Ipsos Mori All figures in this section come from this report.

[13] DWP (2012) Proportion of new claims to Jobseeker’s Allowance submitted online

[14] Office of National Statistics (2012) Internet Access Quarterly Update, 2012 Q1 , 16 May 2012

[18] Kirkup, 9th Apr 2012, Tax reform project running into trouble, say experts. Telegraph.

You will NEVER take away my shoes

Guest post again (saves me so much effort!), this time from the amazing lady Sue Marsh. Her blog is
We all know it who have posted here. We all know that by writing too well, or too often or too scathingly, we put ourselves at risk. Some of us will be or are being “investigated”. Some of us will simply lose our sickness or disability benefits, which could mean losing our independence or even our homes.
Despite this culture of fear we are living in, just look at these stories! Could you honestly read through them all without feeling astonished at the state of our care of and attitudes towards the sick and disabled?
If you are one of the mercenaries hired by the ATOS monopoly to prove we’ve all been cheating all along, you can watch me if you like. Take your pictures, twitch the curtain, send me forms and summon me to assessments. Doubt me, judge me, even try to take away my dignity, but you will NEVER take away my shoes.
If I have to use a wheelchair, then surely it’s time for the 8 inch hooker heels? (Electric-blue satin with never ending chrome spike heels. If I can’t walk anyway…) If I feel like wearing fake-fur and ripped leggings I will. I will wear red lipstick and paint my nails gold. If I want to go to dinner with friends and sip cocktails and nibble tapas and pretend, just for once, that I won’t pay for it dearly later, then I will. I don’t do hair shirts and self-denial.
If I have a rare good day, amongst the searing pain and endless vomiting and I want to dance, then I will dance. Joyously, because I know that joy is fleeting. If it puts me on the floor, I will still dance, because I am free. You can’t tell me never to dance.
If you follow me walking my kids home from school one day you might see me chase them, giggling until we fall in the crunchy piles of autumn leaves. Will you see the wince I try to hide as we carry on home? Will you notice my six year old take my arm because he’s already learnt what giggle-chases cost me? But I vow to chase my kids whenever it might not kill me.
If I see your hypocrisy clearly, I will write about it with scorching fire.  I will tweet from a hospital bed, with my drips and my bleeps and my needles and tubes. Read it if you like, you might learn something. Writing is all I have then – did it ever occur to you I can dictate?
At weddings, I will wear a hat. An enormous, wide brimmed, floppy hat, with freesias stitched into the brim. I will hold my head high, push my shoulders back, paint on a dazzling smile and sip champagne. Life and soul for the hour or two life and soul is required. But will you see me when the mask slips? When my soul can’t cover for my life any longer?
I can transform, butterfly-like with expensive skincare and will-power. The grey, clammy, puffy little face you know will emerge, glowing and radiant, my eyes sparkling, my hair shiny. Like Cinderella, the sheen will fade by midnight, but you might not notice, busy as you are marvelling at “how well I look.”
One warm, summer afternoon, when the breeze feels like silk, I will take a motorbike ride with my husband, racing through hazel lined lanes across the rolling South Downs. I will gulp in pleasure and live a year in those few, adrenaline-fuelled hours. I will pull off my crash helmet, shaking my hair and laughing at life. I wonder if you’ll remember how little my life normally gives me to laugh at?
So, whatever money, or security or comfort you try to take from me, all those other things are mine. Chronic illness takes away almost everything you ever took for granted – ambition, spontaneity, careless energy, dreams, independence – sometimes even love. When any of those things come fleetingly within my grasp, I will grab them.

Wearing an Elvis print mini-dress with pink polka dot Jimmy Choos.

**Once again, please share/link/tweet – I don’t care where, the more people read these One Month Before Heartbreak posts, the better. Yes, you can copy and paste it into emails, yes you can send it to your MP. In particular, perhaps I can ask you to send this to high profile women via Twitter and Facebook? On Twitter with the hashtag #ombh. We need friends in high places who are prepared to support us.

(Not) Coping with the ESA assessment process

This is a guest post from @IHaveaBoomstick, used with permission.


This morning two large envelopes from the ESA dropped through my door. One for me, one for my Mum. There they still sit, waiting for Mum to come home.  I am simply too stressed, too afraid, and too afraid of being stressed by them to open them until she gets home.  You see, I’m one of the many sufferers of a mental illness who’ve been somehow targeted by the government as part of their budget cutting process and put through the ATOS-led ESA assessment process.

From February to May this year I was filling out their poorly-designed forms, paying for GP support letters, being refused a letter from East Bristol Mental Health Trust because they stopped treating me in 2008 (referring me back to the GP as no more they could do) and reckoned “the GP can do it,” realising how flagrantly ill-equipped their ‘classification’ system is to cope with mental illness, trying to explain to numerous ESA advisors (or one with a rotating name) how WRAG is a joke and will create massive stress for people like me while serving no purpose, being put into WRAG, having them forget to review it, having them review it and stick by the decision while simultaneously sending me through their own assessors report clearly stating this person is unfit for work for at least 2 years if not more (alongside all the medical reports), chasing the Employment Service about my WRAG appointment, chasing legal aid people only to find out that the system in England is such a mess compared to Scotland that they won’t even represent you at an appeal tribunal …

… well, it’s fair to say that for someone with a chemical imbalance in the brain that fails to regulate stress and anxiety and suffers from major obsessive thinking, mental exhaustion, some depression, some paranoia and all the other things associated with an anxiety disorder it was not fun. Without the support of My Mum who organised and chased the case (herself a working pensioner) I would have utterly crumpled. As it was, it triggered an anxiety spell so major that I took months to fully recover from it. And, as someone who is also a diabetic, the stress dropped my resistance to illness so low that the GPs believe I became ill repeated times as a result.

Then, after sending the written appeal 5 months ago and the Employment Service backing off, it all went silent …

… until the envelopes dropped through my letter box. I’ve not even opened them. Yet, as someone whose disorder needs little to trigger it, they’ve pressed all the buttons anyway.


The following is what I tweeted this morning in response – it gets a little sweary and occasionally rambling. But it’s how I feel.  This has been edited to be more reader-friendly.  140 character restrictions make for jerky reading.

My mum and I both had two big letters from DWP drop through the door. Probably another ESA appeal failure. Not going to open it. Already stressing me.

It’s been months and months so I am guessing it’s the written appeal verdict.  Mum took over dealing with it as I pretty much blew a mental fuse.  All one massive disorder trigger. They couldn’t seem to ‘get’ that going there once a month and being judged unfit for at least two years was still both a pointless verdict and actually stressful. I can’t tell WHAT I’m going to be like day-to-day, without having a monthly appointment to stress me

Two big envelopes, one for me and one for Mum.  I’m tensing up now and I haven’t even looked at it yet.  It has just made me immediately mentally tense up so I have no choice but to avoid it and let Mum check it later.

It was the attitude of one of them on the phone saying “what’s the problem, you’re in the same category as cancer patients,” that really upset me.  They’re not quite getting that their whole category system is fucked and cancer patients with no chance of recovery should no more be expected to turn up to monthly appointments which have no purpose whatever then me. They don’t get that a disorder fuelled by having a chemical imbalance which means my stress regulation is f*cked means putting me in a situation like that on a monthly basis is not only likely to kick me off but also damaging in general.  It makes me very angry.   This is a joke system.  Let alone people far worse off and less functional then me still being expected to do it. It isn’t just those people being deemed fit being screwed over by this ridiculous assessment system, but the people further down the ladder being screwed over with pointless stress and discomfort as well, given needless hoops to jump through even when the system acknowledges they’re ill!


Ok, let’s treat you to some comedy from the Government. There are 3 benefit groups with ESA – first is “Limited Capability to work.” At the other end of the spectrum is the ‘Support’ group for those people for whom getting back to work probably is never going to happen AND SUPPOSEDLY for if “it is decided that you have a limited capability for work-related activity.” Now here comes the middle group: the “work-related activity group.” This is for all those deemed not well enough to do some work but not fucked enough to count as having “a limited capability for work-related activity.” Said activity being appointments where a back-to-work plan is figured out and you have monthly appointments with an adviser.

Unfortunately EVERYONE is being put in that middle group. Getting into the support group? Impossible.  Suffering from a progressive disease and consequently your death can reasonably be expected within six months – work-related activity group.  So if you’re probably going to die within 6 months? – you’re still expected to attend appointments planning to get you a job. Have a mental disability where you can’t cope for days/weeks at a time, is random when it hits, random when it goes and the NHS have TOLD  you that there’s nothing the psychiatrists can do and medication is barely effective and it ain’t getting better? – work-related activity group.

Now the WRA group says: You cannot be required, as part of a work related activity, to apply for a job, undertake paid work or voluntary work, or undergo medical treatment.  And then it has a “personal adviser who will try to help you back into work.” So, no pressure apart from this member of staff whose job description is to pressure. And, according to many, the whole scheme has incentives for employees to get bonuses by getting people back to work. Which doesn’t encourage pressure at all, I’m sure.

The Jobcentre staff themselves? Not their fault whatsoever. The Government, DWP and ATOS have made a glaring fuck-up of contradictory terms in the categories for people, making the support category too hard to be placed into EVEN FOR THE TERMINALLY ILL!!! And thousands of people who, like me, have serious mental illness, physical illness or disabilities fall between the cracks and get screwed.  Thousands of people who aren’t utterly fucked but are not likely to be work-fit functional indefinitely/forever are hounded, harassed and frankly f*cking TERRIFIED that they’ll be forced back into situations that caused some of them to become ill and/or lose control of their disability to begin with

My life is now about balance and routine, trying to avoid stress, input, any mental stimulation that’ll trigger me off. It’s not great and even with that control it doesn’t work well and I regularly have ‘events’ that pretty much consign me to my room for days/wks. But I’ve fought to get that level of stability. I’m unable to work because of it, rarely go out because of it, rarely socialise due to it.  I have gone through the GPs, psychiatrists, psychologists, meds etc. and after all of it have found this equilibrium for managing day to day.  So when the DWP and ATOS try to fuck that over and give me ½ a page of A4 to respond while ignoring ALL medical evidence, including that of their own f*cking assessor? That, my friends, is a system that is utterly, utterly screwed and will get no better atm. Rant over.


If it wasn’t for the fact that I live back at home with Mum and she was supporting me, I’d have been in real trouble I think.  DWP has been quiet for 3-5 months and just that one unopened letter this morning has pressed the buttons. Thing is, they don’t get the complexity of mental illnesses. Due to the nature of mine, I spent years massively damaging my health pushing myself through university and then working for 7yrs because not only didn’t I understand it but I’d got into the mind-set of “it’s all in my head” and used that as a real obsessive trigger. So whenever this kicks off with places like them, I immediately start questioning myself: “is it that bad?,” “you worked with it before” etc. etc. despite EVERYTHING I’ve been through medically with the psychiatrists & GPs since. It’s a mental illness and they just trigger it with their actions even more. I think people in general don’t realise how much many of us manage to f*ck ourselves up mentally before we get diagnosed


Ironically that rant will/is probably going to contribute to a spell kicking off and me needing to step away for a bit. 100% worth it.  It took me months to recover from the stress of all this at the start of the year, and one unopened letter is enough to spin me out again.  This is why a lot of people don’t fight it. It is exhausting. Without my parent supporting me, I’d just have meekly let it go.  Whole system is screwed.  Irony is I could open the envelope and it’ll say “appeal won, yay” but I’m just too stressed to do it.


The telephone advisor’s words are a bit more difficult to post, though my mum and I were so surprised by their attitude that we felt like recording future conversations just to be sure we didn’t imagine it!


I have no problems with clamping down on people cheating the system but the way the categories are judged is purely to deny people access to the support group and I would guess to massage the figures hugely.

The whole process is a rushed job. And a money-maker for the government. They may pay ATOS but they changed regulations so you don’t officially need a GP letter of support. Which means the Government don’t have to pay for one as in the past but, if you don’t get one yourself, they won’t check any details with your GP or hospital etc. it seems. And given the amount of panic there is about being assessed and the knowledge now that the system is so terrible, people being assessed feel getting a letter of support is essential. So you pay the £15+ for it. Which goes back into the NHS coffers no doubt, and then seems to be completely disregarded anyway.


So my mum is home, and the envelopes are opened. It’s the appeal papers and the answers DWP/ATOS are giving at it. I’m letting Mum read it first as it’s liable to send me off the deep end again but her initial glance through suggests that, yet again, they’re rigidly sticking by their point-based system whilst completely ignoring medical evidence and what was actually written down. Sad thing is, don’t think we can easily get someone to represent me at the tribunal. Unlike Scotland, legal aid here only gives you brief phone advice on if you have a case but won’t represent you.


Ok, I’ve read through their ‘side’ of the case. Basically they’re saying, “by our descriptors, we’ve done nothing wrong” and they’re heavily quoting legal cases. Very much seems as though they’re so intent on going by their points-based descriptor system that they ignore what the person is TELLING them. Joke.

I am not very confident at all to be honest. We’re a working-class family.  We don’t know the legal system and someone who does is unavailable/unaffordable here.  Also humorous how they’re quite happy to find their own medical report from 8 years ago but not pay for one from my GP or psychiatry team. This has moved beyond equal, fair treatment now. To me, this just looks like they want to enforce their system regardless of the person.

No allowance for the fact that “your descriptors are f*cked.”  And actually state a legal case in their appeal to make a point that “in this case, something MIGHT happen isn’t good enough.”  Um, your monthly appointments blowing my stress levels through the roof? That WILL happen. But my testimony due to 15+ years of experience as a sufferer clearly isn’t enough as evidence. Tbh, if all this doesn’t work out, I’d imagine the first person I see for this WRAG thing is going to throw their hands up in despair. And now I’m wound up again.

I can only pray that the tribunal actually takes the time to read everything. But I doubt they will. No-one else on that side has so far.  Sorry for all this ranting folks – it’s just that it feels like all the stress from April that was put on hold has come back.  It is just so depressing. Attending monthly WRAG meetings is both pointless given my future diagnosis and is likely to actively aggravate my disorder. How is that so difficult for them to see and allow for?

Only hope is reading that the tribunal is independent of DWP.  I hate Mum getting stressed about going there but not sure I’d be much use tbh. And if I went there and was present? Can guarantee that the stress would retroactively trigger a spell that’d floor me for weeks. Can’t bloody win.

Saving the welfare state from misguided opinion

The folowing is a quick response to an article by Max Wind-Cowie entitled “Iain Duncan Smith: Saving the Welfare State From Misguided ‘Kindness.'” I wrote this very quickly, am now very tired and my hands hurt from typing.  So apologies for any inappropriate statements, I generally try to stay evidence-based but sometimes my emotion gets away with me, especially when I’m too tired to regulate it.  And apologies for any typing mistakes.


“Anyone who genuinely, seriously wants to protect our welfare state should be full-square behind Iain Duncan Smith’s latest ideas for reform.”

That’s a huge conclusion to reach.  No arguments are made to support this conclusion.  Off the top of my head, I can think of several against it:

  • Universal credit is not simplifying the benefits system; monthly payments will make life harder for many; online management will  be difficult for many
  • DLA is being replaced with a harsher benefit that is planned to cut 20% from working-age recipients.
  • ESA has a heavily criticised assessment process
  • More and harsher sanctions are being introduced, with no evidence to their effectiveness
  • Out-of-work benefits are amongst the lowest in the developed world and do not meet subsistence levels of income


“A Daily Mail article has trailed the idea of using smart-cards to restrict what certain individuals spend their benefits on.”

It was Iain Duncan Smith who trailed the idea, and he has asked his department to come up in one month with a solution to the impacts of drug addiction and poverty on children.


“Apparently there’s some moral principle that demands taxpayers fork out money to help addicts fuel their alcoholism.”

Taxpayers are required to provide a form of social insurance because it would be hugely costly and inefficient for individuals to take out private insurance against all possible dangers.  Because it is a form of insurance, welfare payments are not a form of charity.  For this reason there is no more dictation on how the money is spent than a private insurer would place restrictions on the money it pays out.

Dividing people into ‘taxpayers’ and ‘non-taxpayers’ is rarely possible, except for those who are still in or have only just left full-time education.  The majority of adults have paid tax; whether this covers what they receive in benefits at a later date is a separate issue.  Most adults receiving out-of-work benefits have paid tax in the past.  They are therefore, for at least some period of time, buying alcohol and tobacco out of their own taxes.

Mothers who stay at home whilst the father works yet still claim child benefit may not have ‘paid’ their ‘tax’ to ‘deserve’ this benefit.  Pensioners who have worked little (particularly current pensioners, for whom it was more common that the mother/wife did not work) or only on minimum wage but then live for several decades may get more in pension, and other benefits such as housing benefit, winter fuel allowance, TV licence, free bus pass, Disability Living Allowance/Attendance Allowance, Carer’s Allowance, than they paid in tax/National Insurance.  Given all the benefits we all receive from the government – education, health, transport networks, defence – it becomes very difficult to say who has the right to what.

The risks that National Insurance provide against include the possibility of addiction to nicotine and alcohol.  Such addictions may start in childhood through peer pressure and difficult home lives; when carried on into adulthood these people need extensive support not enforcement into further poverty, stress and chaos.  Or the addictions may have started as a response to stress in the adult life; 3-5% of professionals are alcoholic, with another 25% at risk of becoming alcohol dependent.[1]

As a slight aside, taxpayers currently subsidise the MP’s bar.


“I want there to be a safety-net for folk who fall on hard times. The good news is – as the British Social Attitudes survey and a flurry of recent polling shows – so, in principle does almost everyone else. But, in common with my compatriots, my support for a welfare system does not equal support for this welfare system. We need social security in this country – not social dependency.”

I think most people agree that we want a safety net and social security.  The difference is, Wind-Cowie implies that the current system promotes dependency (and presumably also a safety net and security, otherwise there would be nothing to become dependent on), whilst the new system will provide safety and security only.  Wind-Cowie provides no evidence for dependence; indeed there is very little.  There is, however, a large body of evidence published by reputable organistations such as the Citizen’s Advice Bureau and Joseph Rowntree Foundation that the current system is not a safety net and does not provide social security.  Unfortunately the changes that the government is bringing, and Wind-Cowie is advocating, are changes that work to make the system harsher.  The aim is to stop welfare dependency; but if there is little dependency then the result will be an even hole-ier net.


“Last week, Demos released the findings of a poll, conducted on our behalf by Populus, looking at attitudes to how people spend their benefits. Coming on the back of the BSAS (which, while showing in-principle support for welfare also found high and growing levels of concern about how our benefits system works – or fails to work) this polling highlights the need for further and more radical reform.”

Unfortunately, the public aren’t necessarily making informed decisions.  With a wealth  of media and government output using pejorative language and discussing fraud, dependency and ‘problem families’ as though these are widespread issues, it is unsurprising that many believe there is a culture of welfare dependency that needs to be addressed.  But important decisions need to be based on fact, not on opinion that has been formed from biased and all-too-often sensationalised media reports.


“The fact that government currently exercises little to no control over how benefits are spent – while the vast majority of us wish that it would – should bring home the growing gulf between our expectations of what is reasonable in relation to welfare and the policy responses on offer.”

It also brings home the growing gulf between the reality of welfare and poverty, and what many of the rest of the public thinks is the case.


“In my view, there are two possible justifications for limiting what benefits can be spent on. The first is in the case of alcohol and drug dependent claimants – whose addictions are ruining their lives and often the lives of those around them. These are people whose illness is all-too-often being enabled by the payment of cash-benefits, which allow them to fuel a destructive habit and makes recovery all the more difficult. By giving this group smart-cards, that could only be used to buy groceries and essentials, and by targeting treatment, we could do a lot of good with minimal harm. This is not about punishing the sick – it’s about enabling their recovery.”

There are many reasons to argue why smart-cards is not going to get addicted people off drugs and aid recovery with minimal harm.  The biggest one is that lack of money has rarely, if ever, been a reason why someone ended a long-term addiction.  On the other hand, it will restrict choice as market-stalls and small shops may be unable to take the cards; it may encourage a black market as people trade items to get desired drugs; it provides no help or support to people who are already suffering the effects of poverty and addiction; it may serve only to force these people into greater poverty and more chaotic lives.


“The second group we should look at are the non-disabled, non-contributors. People who’ve never had meaningful work and have never made a meaningful contribution – through NI – to the safety-net the rest of us pay for. There are too many in our society who walked out of the school-gates and onto the dole queue without so much as a glance at the workplace.”

This is a very small group of people.  Or at least it was, until a recession hit and many graduates were unable to get a job – over-qualified and under-experienced being the story of many graduates attempts to find work – whilst many school-leavers struggle to find training or apprenticeships that pay a livable wage, or even one that adequately reimburses the cost of commuting and time spent in training.


“We’re a civilised country, we don’t let people starve to death in the streets. But the lack of recognition for contributors – who, on the whole, will get pretty much the same out of the state as those who’ve put nothing in – is a damaging and corrosive theme of our welfarism. We can’t afford to give contributors substantially more. But we could give them more freedom and flexibility over how to spend their benefits than those who’ve added little to the pot. After all, for those who have worked and paid-in their welfare is a right and an insurance policy they should expect to enjoy when times are hard. For those who have failed to pay-in, welfare is the privilege of being born to our generous and caring society. It’s right, proper and – if the attitudinal evidence is to be believed – necessary to start making that distinction. Smart-cards for those who could have contributed but have not done so would be a step in the right direction.”

Somewhat sadly, the first link I found when I searched ‘people starve on streets UK’ was this one:

Another story explained the existence of starvation and malnourishment in our capital city:

Other pages explained the role of food banks, a charitable provision and not a government policy of aid.  I’m delighted to live in a country where the citizen’s care, but the government should care too.

Wind-Covie’s lack of data on who pays what in and gets what out undermines his argument about what freedom people should have in spending benefits.  The government, as I have said, pays for many things for the citizens of this country.  A rough calculation I made some time ago suggests that anyone who does not earn an average salary of £41 500 a year for fifty years will receive more from the government than is paid in tax.  Separating into National Insurance contributions vs any other form of tax becomes nonsensical when the welfare bill is well above NI receipts.  Unless the government is going to make other restrictions, it is inconsistent to restrict alcohol and tobacco purchases by people on certain benefits.

It is not right, proper or necessary to make the distinction between those who ‘have’ and ‘haven’t’ paid in. The very concept of ‘paying in’ is rife with problems.  Age is one big factor in what has been paid in.  Caring duties are another.  ‘Paying in’ can also occur through voluntary work, or simply the presence of a friend or relative helping a healthy adult to stay on top of things in an often stressful world.

Then there’s the question of what the government has paid out.  State schools vary in quality.  Healthcare varies in quality.  Public transport varies in quality.  Maybe these ‘problem families’ or people with addictions have these problems at least in part because of inadequate or improper provision on the part of the state in the first place.  So maybe what should actually be happening is that the state should invest more in helping these people, not simply restrict their freedom in the hope that this will somehow sort out all the struggles they are having in their life.  And the state should do this because it failed to help these people in the first place, before the use of alcohol and tobacco became an addiction.


“What’s more, it would add more nuance to the ‘conditionality’ framework. At the moment, the only real penalty we have for folk who refuse to play by the rules is to remove their benefits for a short time. So if you refuse to apply for a job we can stop payments – but only for a little while because, as I say, we’re a civilised country. Under a smart-card regime we could use flexibility as a reward and greater control as a punishment. That gives us a better range of tools to use in the battle to get people back to work.”

By short time, Wind-Covie means complete cessation of benefits for a minimum of four weeks (only for the first failure at a low or intermediate level) up to 156 weeks, that is 3 years.[2]  Not a short time for anyone trying to live on nothing.  By better range of tools, Wind-Covie appears to mean an increase in punishments.  Flexibility isn’t a reward when it’s what most people have, it’s simply the status quo with loss of freedom as a punishment.   It shouldn’t be a battle to get people back into work, and if it is then it may be more helpful to look at the state of the job market and what can be done to improve that.


“I want a welfare state that accords with the moral intuitions of British people. To continue with what we’ve got would be to dangerously derange benefits from the beliefs, attitudes and opinions of those who pay for them. We need to listen to those who pay the bills, not denounce them. Exercising more control over how benefits are spent – to differentiate between contributors and non-contributors and to enable the recovery of addicts – would be a kindness both to individuals and to our welfare system itself.”

I want a welfare system that works and is based on evidence: evidence of what the problems are; evidence of what is needed; evidence of what is successful.  I’m not interested in intuition when people’s lives are affected.  To separate between contributors and non-contributors, those who pay and those who don’t, is complex to the point of impossibility.  In some ways we all contribute and pay; in many ways we all take.  The ones with the money aren’t necessarily the ones who know what is best to do with it.  And the recovery of addicts has never yet occurred on a large and permanent scale by forcibly removing access to cash.

[2] These are the sanctions for Jobseeker’s Allowance.  As many other benefits such as Housing Benefit are passported from JSA, a loss of JSA frequently means a loss of all benefits and therefore may be loss of all income.