Monday, 8 October 2012

Work Consultation

As many of you may remember, I ran a consultation on this blog some time ago, asking about work with long term fluctuating conditions or disability. It received over 250 responses.

Most people said they would like to "work" but that they either could not possibly now hope to work at all or that "work" as understood in our society simply does not suit or accommodate people with mental or physical illness.

However, five ideas came up time and time again :

1) Working from home - In 2012, many commented that it is ridiculous that businesses don't do more to allow people with illnesses or disabilities to work from home. With email, Skype and video conferencing, intranets and disability aids, it is perfectly possibly - indeed cheaper for many businesses - to facilitate home working.

However, the concept of "part time" or "full time" work as understood by most businesses does not fit with long term, unpredictable conditions. Any work would need to be utterly flexible, allowing the employee to dip in and out as their conditions require. Some might work well very early in the morning but be useless by midday. Some might be able to work for an hour or two here and there. Some need work that they can do at night when symptoms make sleep impossible. Any work would need to be utterly flexible over a 24 hour period.

It was felt that many had great experience and expertise from a lifetime of work that was now going to waste.

Employers were as much a barrier to work as the conditions that make work so difficult. Much more had to be done to include businesses in any conversation about taking on sick or disabled employees.

A "Work Bank" allowing businesses to upload overflow work from peak times (ie data entry, paralegal, accountancy, design, etc) was suggested. Business could plan for busier times, and those looking for flexible work could log on, accept certain hours or chunks of work and "bank" hours towards an annual work goal.

2) Micro Businesses - Many felt that they had developed new skills since becoming chronically ill. Hobbies had become slightly more, but the benefit system simply didn't allow them to develop these into viable businesses. As soon as they started to earn any small income from these talents, they found themselves unable to develop them as they simply weren't confident enough to lose all benefits.

Many suggested a kind of small business co-operative, where those living with long term conditions wanting to develop small businesses could come together in an area and support one another. Some might be better able to take product to market, some might have great marketing skills, yet others might be creative but unable to physically participate.

A combination of small micro-loans, Access to Work, networking with others in the same position, business support and flexibility within the benefit system might allow these businesses to flourish. Might. But crucially, there needs to be a totally new approach to benefits and work that allowed space and accepts that those with significant barriers to work need a much less punitive benefit system with much less draconian marginal tax rates and sanctions.

3) Education and training - Often, when someone becomes chronically ill or their impairment means that their current job is no longer viable, they are simply thrown on the scrapheap. Every study shows that once someone with an illness or disability is excluded from the job market, it is many times harder to re-enter.

A real commitment to find other suitable work within an existing company, supported by Access to Work, re-training or further education where appropriate could mean that someone never becomes excluded in the first place. This should be a partnership between the person with barriers to work, employers and government. All too often it has been a lonely path between a supportive employer and a willing worker, but the business simply cannot carry these costs alone. A little early intervention from Government could save years of benefit payments in the future.

4) "Falling off a cliff" - For decades our benefit system has become more and more punitive with tougher sanctions and limitations. The more dependent on social security someone is, the more impossible it becomes to consider any kind of paid work. Earning disregards (the amount you are allowed to earn before losing huge chunks of support) are ludicrous - often as little as £20 a week. This, sadly, is unlikely to improve significantly under Universal Credit.

Successive governments were seduced by the idea that those with long term illnesses simply needed to try harder, yet at every turn, politicians created their own barriers to work within the very system supposed to enable and encourage.

If someone stands to lose £6,000 a year in benefits by working, they need to know that they can earn at least that amount - reliably -before they could have the confidence to "go it alone". If someone will lose £10,000 or even more, yet could only ever reasonably expect or hope to earn a few thousand, many are excluded from even trying.

Politicians must accept that :

A) Some will simply never be able to "work" again at all.

B) Some will never be able to work again in the way society expects.

C) Some will always be excluded from the workplace despite a willingness - even eagerness to work.

ALL work should be valued. Anyone with a significant impairment should get extra support. If they have a diagnosis that means they will always face difficulties sustaining consistent work or face barriers to working, any work they feel they can do should be supported.

If someone can only ever manage a few hours from home, or can only manage to volunteer for a few hours here and there, that effort should be rewarded too. If we truly want a "good society" or a "big society" or "one nation" then we must value all contribution.

Politicians should consider a "volunteer credit" - available to those discussed above, carers, parents who support their children's school, or any other volunteer who is for whatever reason unable to "work" traditionally. The credit could boost final pension levels.

5) Despite all of the above, many with long term fluctuating conditions asked what on earth they were supposed to do during very bad times. All of the above suggestions meant that there would be times when they were simply unable to "work" and would be left high and dry with no salary. The "rollercoaster" effect had led many to give up on the idea of work at all. One minute self sufficient with some salary, the next plunged into poverty and fear, faced with a welfare system almost impossible to re-enter, the stress of re-applications, tribunals, appeals. Ironically, the more sanction we have developed, the less likely those with long term illnesses are to feel they could even attempt to work.

Those with long term conditions that will always face a significant barrier to work should see some of the tax they pay go towards a "lifetime fund" - heavily subsidised by the employer and Government (just as a pension is) that they can dip in and out of when illness makes it impossible to work. It might go back to the employer to help them cover long periods of illness. It might provide a small extra income during very difficult times. It might pay for adjustments when they become necessary. For the relatively small cost to the employee, business and government, it would be vastly cheaper over the long term in wasted benefit payments and recruitment or lost work hours.

Business have been largely absent from these discussions for too long. However, there appears to be a real appetite to change this, just a lack of suggestions on how. Tax incentives could encourage business to take on more people who suffer from long term conditions. Targets for employing a certain % of long term ill or disabled people are used effectively in many other developed countries. Government effort could be channelled much more into supporting business to set up schemes such as those detailed above, or "cover" business against times when the worker simply cannot work, rather than decades of social security support.

So, with all of this in mind, could I ask you again, to leave your comments below? If you would like to answer the questions below, it might help to add a little structure, but if not, feel free to say as little or as much as you like and of course, make any further suggestions you have. 

Would any of these suggestions help you? 

What is your condition, How long have you had it for? 

Do you have other suggestions that you think could work?

When did you last work? 

What did you do? 

How long did you work for?

Why did you have to stop working? 

Would you like to work, however little?

Are you now totally unable to work?

Does the benefit system hold you back from working? 

What fears do you have about schemes that aim to do more to support those with long term conditions into work? What, if anything, interests or inspires you? 

The biggest problem has been politicians who conflated long term illness with worklessness. The two are not the same. Please, if you can spare a few moments, use this thread to explain to politicians why.

Many thanks.


UPDATE : Some have suggested that the list of questions at the end may make some reveal too much personal information. PLEASE don't feel pressured to reveal anything personal at all.



55 comments:

  1. As the son of someone with chronic health problems I can't fully participate with your process, but WOW!

    I am so thankful someone with more than half a brain is actually thinking about all this.

    It is a shame that it would appear that this level intelligence disqualifies you from ever working for the DWP!

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    1. Actually I think you could participate in this - as being the son of someone who is ill, what happens if they were to get really ill? What would happen to your job? Would you need some help with your caring responsibilities and where would it come from? I know from experience employers are not thrilled with employees who need to take a day off work a week to care for a family member, so maybe the flexibility is still a big issue; especially as an artist (I feels, I feels), gods knows many people don't see what we do as a job.

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  2. I am currently working, and receiving tax credits which has allowed me and child to live in relative comfort, considering. I've even managed to make a bit of money this year although it's always a bit of pins-and-needles waiting to see if a book gets sold. My main complaint with Universal Credit and the way self-employment is going to be reviewed under UC is it makes no sense whatsoever to be self-employed. Operating with a minimum monthly income requirement is completely useless to a person such as myself - it took six months to finish my book, then find a publisher, do the editing, and so forth. I didn't get any income from it, but I was still doing the work. Under UC, because I'm not bringing in any income, this would not be considered working. Why is that any good for me? Writing is all I can do these days - it works, it's at my own pace, and I'm rather good at it, thankyouverymuch. I enjoy it, which means I make the effort to try and keep doing it for as long as I can. Same with painting; I'm starting to apply for places in exhibitions and this means potential sales as well. But with UC coming down the wire, it's doubtful I'll be able to keep doing this. And if that happens, then there goes my ability to be employed. There really has be an understanding that work really is work. Don't say that I could be doing "anything" and getting paid for it therefore I need to be constantly monitored - I've worked in offices and firms, and I've had supervisors and tech guys playing WoW on their computers during office hours. So if I need to take a nap or have a rest between writing chapters then I jolly well do it, and shouldn't be penalised for "not being productive". Your productive isn't my productive.

    Another point which I brought up last time the Alternative To Work conversation came up was abysmal child care options for special needs kids. I can't just pop round and get a teenager from down the street to watch my son. He's nine, built like he's 14 and he can get violent. He is ASD, dyspraxic, and hyperactive - he doesn't need a sitter, he needs a specialist. But specialist sitters don't exist - you can get respite now and again, but it isn't care. If anyone has just gone through the hell I just did trying to even get my son into a school, then there was a year where my son was pretty much not in school at all. Somehow, I still managed to publish but it was a nightmare. How would anyone else manage to work AND care for a special needs child, especially with no provision to do so? What happens during half term and summer breaks? There needs to be a lot more joined-up thinking. We're not talking about just focussing on a working person, we have to take the entire household into account and help on that score too. It is not so simple as just bunging a child into a school and then traipsing off to work.

    Those are my main issues at the moment, and for me the main problems. There is still no debate whatsoever about what parents of special needs children are supposed to do when their children are too ill to be in school or the school system is failing.

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  3. Would any of these suggestions help you?

    A work bank would be very useful as I don't see a time when my waking/sleeping hours fit into a normal 24 hour schedule.


    What is your condition, How long have you had it for?

    Post-traumatic stress, with complications. I've had it since I was 3, the complications mainly arose due to being forced through school and more abuse both at home and at school, with no support.


    Do you have other suggestions that you think could work?

    Retention of benefits for anyone going back into part-time training. The permitted work scheme of 16 hours a week would have allowed me to continue training for my career if I recovered partially as opposed to fully. So maybe a permitted number of hours or something similar to allow people to go into training without pressure to come off benefits and onto a student loan (a part-time student would have to pay council tax, whereas full time students don't, as far as I know).


    When did you last work?

    Was in training until November 2007. Last paid work: 2004.


    What did you do?

    Training towards a career in psychotherapy. Paid work was as a classroom assistant.


    How long did you work for?

    Paid work was on a supply basis. That was one year, before I went to university aged 17.


    Why did you have to stop working?

    Massive mental breakdown/relapse, followed by physical complications due to stress.


    Would you like to work, however little?

    Yes.


    Are you now totally unable to work?

    Yes.


    Does the benefit system hold you back from working?

    It will when I get to the point where I can consider it. I need absolutely no pressure whatsoever, everything has to be totally voluntary or I will get violent. I don't believe that a system based on voluntary attempts to return to work is unachievable.

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  4. Would any of these suggestions help you? Yes but I think work associated with a 'work bank' would in all likelihood be underpaid and what you are suggesting is a shift in the way work is perceived which has been a bug bear for many looking at issues of masculinity and crime for about 30 years. Patriarchy does not provide significant amounts of flexibility to truly maximise the potential of a diverse workforce.

    What is your condition, How long have you had it for? Fibromyalgia 6 years

    Do you have other suggestions that you think could work? Workers in the traditional sense need to work less so there is more work available and a higher degree of flexibility.

    When did you last work? Full time? July 2011. Part-time? Now but a tiny, tiny thing.

    What did you do? Senior Lecturer

    How long did you work for? I had worked since leaving school for 20 years.

    Why did you have to stop working? Various reasons.

    Would you like to work, however little? Yes

    Are you now totally unable to work? No

    Does the benefit system hold you back from working? Yes

    What fears do you have about schemes that aim to do more to support those with long term conditions into work? These things always objectify and are always punitive.

    What, if anything, interests or inspires you? Criminal Justice Policy, Gender, Healthcare Economics, Administration, Praxis, Cake.

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  5. Just a short one.

    I have mild Autistic Spectrum DIsorder, Dyspraxia, and now, Osteoarthritis in my hips & herniated discs. I have a lot of pain, sudden fatigue, and atypical migraines that behave a little like seizures, so for periods each week I am confused and groggy, not perceiving the world accurately.

    I found part time work (3 days a week) in an office that lives and breathes reasonable adjustments. I had DLA and Working Tax Credits which basically made up the difference between part and full time work - I could afford to work & live, and I wasn't working myself to illness.

    I moved in with my partner - who earns a good wage. I lost my DLA (still fighting that one), and my WTC as my partner earns more than the threshold.

    My partner now completely subsidises me - I don't have my own independent income for anything other than rent & bills. Our relationship is not equal as I rely on my partner for anything beyond essentials - he has to buy decent food - I can only offer the basics.

    So not only do I rely on my partner for care, and moan at him constantly because I'm in pain and feel shitty, I rely on him financially too.

    I would like to see a system that recognises people as individuals, financially. The sense of shame I have at living off my partner like this runs deeper than I realised it would, and makes me fear that he resents my presence.

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    1. I think that's such and important point. The push to make so many financially dependant is a horrible, horrible development in the system over the last decade or two.

      It does feel horrible and puts so much extra pressure on a relationship.

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  6. I am 46 years old. I was diagnosed, finally, with Fibromyalgia in 2004. But for my entire working life, and earlier, I have has the same problems. I found that after a while I couldn't do more than 2 days in a row because the third day hit me with exhaustion, pain everywhere and usually a migraine as well. For 11 years I was fortunate in that I worked for a government dpt in the country I resided in and I was able to arrange a part time schedule.

    After I moved to the UK, to get married, I tried to find a full time job but I invariably couldn't keep up with the hours required of me. After three or four years and six employers being disappointed (I had a great skillet and was a good employee, apart from the absences) I took the advice of a friend and started working for myself using my hobby as a base - taking commissions for artwork etc.

    That was ok for a few years, I even had a small shop for a while, but I was then hit by an additional condition making the pain a lot worse and leaving me unable to stand or sit for long enough to paint and my hands shaking too much anyway.

    I am now in post-op recovery after spine surgery - recovery takes a lot longer when you already have something like FMS. That has reduced my pain levels and I am hopeful that I will be able to start doing a little bit of art here and there once I can be upright for long enough in a single session.

    Employers will fight against working with disabled and chronically ill people because of the extra costs; the government in this country really do not want to understand how some illnesses vary, not to mention that they do not even consider how a commute also affects people (a 30-60 minute commute on public transport can leave me unable to move for an hour or more afterwards); and the benefits system in this country sucks - a better system would allow the first, for example, £40 a week earned to have no effect on benefit, the next £50 affects by 50p per pound earned, the next £50 affects by 75p per pound and anything beyond that affects pound for pound until there is no benefit (change the amounts to suit the total benefit - make it a week/fortnight/month system, whichever is best). That would remove more of the fear of losing benefits for earning few quid here and there - if you can declare any income earned each month in the confident knowledge of how much it will affect your benefit and that you won't lose it, it encourages more part time or casual working.

    I should stop here. Oh, I only receive DLA, and only since April this year because nobody told me that I could claim anything - I assumed that my husband's income precluded any benefit - so, now I can have someone come in once a week to help me, I can afford mobility aids etc. But I am only being paid this until April next year when, I think, I'll have to apply for PIP.

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    1. *argh* I hate autocorrect. I blame any spelling errors on that.

      "skillet" should be "skillset" for example ;)

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    2. Kayla - I totally agree.

      Something along the lines of allowing a person to earn up to their "benefit lost" amount, then keeping 50p of every pound after, tapering only once worker reaches base tax rate amount (ie 10k once this parliament over) would enable so many thousands more.

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  7. Great post. Shows how it's just not that simple to balance ill health or disability with the working world and the benefits system.

    I'm trying retraining from a job that required 14 hours a day on my feet and being incredibly confident and travelling to new places (which with ME/CFS, depression and agoraphobia) I just can't do. I'm moving into more structured work which can be done from home when fatigue allows.

    But to be in an office I need flexible start times as my bowel trouble means I often can't travel in the mornings due to diarrhoea. I also need somewhere to rest/nap and people not to freak out when I vomit (although i understand why they do!)

    On a wider level, the changes to benefits make me less likely to take the risk of coming off sickness benefits. I'm on LRC so will lose that and my 16 hour a week entitlement for WTC with it so it's 30 hours or broke. The 104 week has been abolished so I have to start again from scratch if I make a new ESA claim, leaving me broke and I'm scared that the way they are treating new HB claimants means I'll lose out there too and risk losing my house (which is a massive anxiety/agoraphobia trigger for me.)

    I'm more likely to stay on benefits and use my limited energies fighting Atos because much as they are bastards, I know where I stand with them. Lack of security and uncertainty in the working world is actually harder for me to deal with so I'll avoid it and all my skills and potential tax paying gets wasted. Someone remind the Coalition about the poem 'for the want of a nail...' please!

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  8. It would be useful if a parallel currency could be developed that didn't affect claimant's receipts of the national one so they could be paid in that. Would someone working from home, on benefits, lose benefits if they were paid in, say, Bristol pounds or Lewes pounds? What if we had a currency that wasn't called a pound at all but something else? We could call them Marshians after Sue. Tee hee :-) What about if the disabled working from home all joined time-banking networks, where someone disabled working at accounts (or whatever, something computery) when they felt able might not be paid in any kind of money but with hours of labour, cleaning, cooking, caring, from someone else in the network? This would be a shadow economy, unnacountable to Osborne and his greedy grasping parasitic ilk, and its introduction might be entirely appropriate seeing as we're all being screwed by the banksters and their shadow banking system. Traditionally when times have got hard and money's got scarce people have got by through developing local currencies and trading using them. That tends not to be in the history textbooks because they're supplied and approved by the state and the state isn't too keen on people learning just how independent they can be from it. But it's the truth nonetheless.

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  9. Hi there

    Good discussion. However I think this looks at the issue too much from a single perspective - that of the disabled person. It would be useful to look at this from the employers' perspective. In other words how can one create incentives (other than financial ones through government subsidy) and make it somehow attractive for employers to be involved in these initiatives. At a time of high unemployment with a readily available workforce competing for jobs, there is no incentive for employers to take on staff that can be seen to create extra burdens. Financial incentives from government will likely not be sufficient because employers realize that they are unreliable and they never really make up for the extra load. So other attractions need to be created. This will never happen as long as the discussion is exclusively self-focused on 'how can we help the disabled' rather than adding the additional focus on 'how do we make it attractive to employers to get involved in all this?'.

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    1. This has also been brought up - but the response from many employers has been "not worth it, won't even consider it". And now, with the workfare programme, why would they want to? Getting employers to pay a living wage is nigh on impossible as it stands, so trying to convince them through "incentives" which they cannot even be bothered to consider is like talking to a wall. Employers want to make money, and give as little out as possible - while Workfare exists, we can't do anything to compete. Incentive has already been created by forcing people to work for nothing, and employers are all over that right now - it would take a huge step back and considerable legislation to change it...I can't see that happening any time soon, but I CAN see all us disabled people being told to work or starve.

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  10. Hi Sue,

    I am 39 years old. I last worked in housing as a sales executive until 1999 when I was forced to leave work. I had worked for six years. My employer threatened to stop my commission which made up the bulk of my income because I'd been signed off for two months due to anxiety and panic attacks. It was a sudden onset illness and it was horrendous. I was taken to A&E from work several times by ambulance. Often I couldn't physically get there and had to phone in sick from the motorway. Panic attacks became an increasing problem whilst driving and in front of customers.

    I didn't claim any benefits for about a year, until my bank account ran dry and I had no other option as I was not making any recovery, or offered any help to recover for that matter.

    What started out as panic attacks over a decade ago soon turned into panic disorder and eventually fully blown agoraphobia and clinical depression. I have not been able to work for over a decade.

    I am pretty desperate to work and have an income. I want to be able to live an independent life, have a home of my own. I am currently walled up in a bedroom at my father's house. I have been alone and isolated in this room every evening for the last seven years, without visitors too :(

    Ideally, if I could, I'd love to do an OU course which means I could study from home. I can't afford the course fees. I am very creative *blows own trumpet* and know how to market and sell products and my way around a laptop too. I could work very efficiently from home and am desperate to get the degree I missed out on earlier in life. Feeling unwell and frightened every day, the stigma and shame of a mental health condition, the stress of being found fit to work and having to appeal, isolation and frankly the boredom, have destroyed my self esteem. If I 'dare' to take any baby steps towards recovery I will be found fit to work again at the next work capability assessment. Stupid descriptors mean that if an agoraphobic can function at a very low level, ie buy a newspaper from a local shop but not be able to do that in a supermarket, they're rewarded with zero points! The barriers placed by ESA are very real. IB placed you on the scrap heap and ignored you, whereas ESA penalises you for attempting to make any progress that suits you as an individual.

    I'd like to believe that I'm reasonably intelligent, artistic, creative and that I could be an assest to the right employer, or even run my own business from home. If I had funding to study that would improve my self esteem and prospects hugely. I am TERRIFIED!!!!!!! of being placed on a work scheme. I would panic (because everything makes me panic, no exception) fall apart emotionally and most certainly not actually be able to get there in the first place. I can drive roughly a mile and no further. This isn't a 'workshy' convenience, this condtion is REAL! Perhaps with LONG TERM CBT over the course of months rather than weeks, individual tailored support including study, access to controlled social environments with a psychologist backing me, where I felt safe instead of threatened, and without this dreadful threat of losing benefits, I believe I could make significant progress.

    ESA demands your worst. It ought to free you to fill your individual potential within the limits of your illness.

    I must add this. I am single. I'm in the WRAG ESA and in January my contributory rate is being stopped. I will have to be means tested to claim again. If I was to start a relationship with someone, and they are working then they would have to support me if we lived together. I am reluctant to start any relationship and become dependent on that person from the onset. This system IS effecting my personal life. The lack of security and uncertainty about one's future being on ESA is an additonal terror I feel.

    I can't add any further suggestions because you have covered everything brilliantly. Have you considered being the new work and pensions minister? :)








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    1. hi CoffeeCup,

      Do you know that if you don't already have a degree, and you're unemployed (or have an income of less than about £18,000 a year) the OU will fully fund your courses, and give you around £200 a year toward study costs? Plus you have access to the Disabled Students Allowance to meet any study-related access need costs you may have?

      I am an OU student, and the only way I could study was through the OU as I was unemployed & couldn't cope with a bricks-and-mortar uni or regular & set study hours.

      Do get in touch with them and ask if there are ways you could be supported into OU education as it would be a shame to let your skills go undeveloped.

      Best wishes

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    2. Robin, I've only just spotted your comment. Thank you so very much for sharing this! I will certainly get in touch with them and discuss my current situation to find out more. This could be good news indeed. I'm so grateful to you.

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  11. I have Crohn's disease and have been unable to work 'traditionally' since a massive flare-up completely did me in 14 years ago. I did go back to work (nursing) part-time for around 18 months, but that was a near fatal mistake and ended up very costly to me and to the NHS.

    The ideas above show clearly how the labour market excludes people with long-term health conditions who want to work. But I’m not sure any are solutions for me.

    I spent 10 years obsessing over various schemes to get back to 'different' work and perhaps obsessing too little on looking after myself.

    What drove me to this was believing that I am defined by what I do - and "looking after my long-term health condition" was an unacceptable definition. I was also a victim of the Protestant Work Ethic - filling me with guilt for being out of work and fearing other people would despise me for it.

    I've not quite got over this, but I do tend to follow "do I want to work?" with "why do I want to work?".

    Now I am on a new treatment, my health allows me to do some volunteering and some occasional paid work. These are roles I really want to do, not just work for the sake of it. I have had bad experiences volunteering and I have walked away from them.

    My main pastime really should be 'looking after myself'.

    I am very much into the idea of 'giving back to society'. I owe the NHS my life and the DWP the security to focus on improving my health.

    However, I can 'give back' far more effectively by not working – by continuing my voluntary roles, but also by staying well enough to stay out of hospital and avoiding any further surgery.

    In that context, why not provide people living with long-term health conditions the opportunities of taking up high-quality training, higher education or other ways to develop ourselves as individuals?

    Sue, for one, could have access to a university department and post-grad courses to help carry out her research. I quite fancy doing a film-making course. Other people might like to do a creative writing course – we all have amazing stories to tell – but can’t afford to pay for education.

    This idea is about valuing people with long-term health conditions rather than despising us. I reckon that it will make us less stressed, help us look after our health better and save the NHS and social care services loads of money.

    Another spin-off is that a few of us might end up doing amazing things that have an impact across society.

    Whether some people get into work (and off some or all of their benefits) shouldn't be an issue.

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  12. Hi Sue
    Great to see intelligent debate on this subject and hopefully “the powers that be” will start to get it into their heads that a policy based on forcing sick and disabled people to touch their toes, carry empty cardboard boxes or push buttons is never going to work. Only by tackling all the barriers causing worklessness and including a focus on what employers can do and designed with disabled people will deliver proper reform.

    I’m currently in work and apart from a period on incapacity benefit for depression about 15 years ago have so far retained my job, however there are times I have to battle to keep it and fight very hard for reasonable adjustments, without which I couldn’t work. This year, I’ve developed a new condition, on top of my existing impairments; as a result, I’ve been on long-term sick since February 2012. I just required some adjustments to go back to work. (Fairly minor, in my view, & no cost)

    Unfortunately, I faced a manager that I felt was keen to just write me off and medically retire me. Luckily, I knew my rights and had the support of my union, GP and occupational health. However, my employer have dragged their heels in agreeing the adjustments, and so it became a long drawn out battle, which then triggered my mental health problems. The process made me ill and it scared me how easily I descended into further ill-health. The end is in sight and hopefully I’ll be back at work soon.

    However, It brought home to me, forcefully, and especially after reading your blogs Sue and comments from regular readers over this year. (twitter and blogs been a lifeline whilst I’ve been off work poorly), just how easy it is for sick and disabled people to fall out of the workplace in the first place. Once it goes past 6 months, 12 months etc the difficulties and barriers become more complex and entrenched. I’ve been off work for 7 months now and counting, my confidence is shattered, I’m now visually impaired as result of new condition, have anxiety & stress on top of existing chronic pain. Although I want to go back, the process of negotiating adjustments and trying to gain support has itself made me ill and risked me not being well enough to return. That is crazy! I’m sure many of us have similar tales.

    Therefore, I firmly believe, that whatever policy is devised, it must include prevention and retention to be truly strategic. Investment there will save money further down the line, when someone’s health & circumstances have become so complex. Employers mindest, about supporting their staff who develop ill-health or disability must change, most adjustments are minor in nature, and even those that are not, can be done with the right flexible attitude.

    I love the ideas of workbank, microbusiness and flexibility around homeworking, in my view, work should be something that you do, not be some place that you work from. Embracing new technologies is the key to this way of thinking; we are a 24 hr global economy now so a 9-5 office workplace is over. Unfortunately, we still have organisations and managers within them who cannot see past the traditional ways of working. I think that disabled people and modern, flexible working practices make an ideal partnership.

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  13. I have ME so am quite limited in what I can do without feeling rubbish and needing to hide away. Work has been out of the question for over 9 years - I can potter along with self management and do some voluntary work using my skills as a voluntary sector manager - but only from home at my time of choosing. I doubt I could do enough hours to earn my living so try to stick with benefits. Anyhow, I'm 62 so have given up the idea of viably returning to any kind of work. However, I'm currently miraculously deemed fit to work as I was able to get to the ATOS office and stay conscious - they didn't see me for the 5 or 6 days it took me to recover to my relative normality afterwards! Appeal pending!

    Reading your great blog, Sue, the idea pushed through from some recess in my mind about the Citizen's Wage campaign - I can't remember when it was but not so long ago. It seems to have vanished, now. Somehow the term "Universal Benefit" sounds like it should be a guaranteed basic income for all - though I know that's the last thing IDS has in mind. But with a Citizen's wage, sick and disabled people could use it as a platform, when they were well enough, to earn a little extra money, or to fall back on when they were unable to work. It would free up a lot of creativity for everyone. But it's obviously too radical for the times. Just thought I'd mention it, as it's certainly a potential solution to the problem of fluctuating ability to work.

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  14. Would any of these suggestions help you?
    Quite possibly

    What is your condition, How long have you had it for?
    Chronic Fatigue. Originally diagnosed 21 years ago, recovered fully before relapse 9 years ago

    Do you have other suggestions that you think could work?
    I like the idea of people with complementary skills working together, eg a network of professionals of various kinds who could share their work

    When did you last work?
    Last full time work, 2003. Currently doing a PhD with some part time/casual work for the University (teaching and exam supervision)

    What did you do?
    Academic Researcher, Consultant Transport Planner, then since the relapse have tried working as an independent consultant, running a web shop and providing home/office IT support. Now studying for a PhD “full time” (but actually part time). I am also a volunteer officer for a Professional Institute

    How long did you work for?
    My professional career only lasted about 2 years after my Masters degree

    Why did you have to stop working?
    Originally my employers let me go. Depression likely contributed, but I was very happy to leave. However, after a few months looking for work and finally starting my own business, I relapsed into CFS

    Would you like to work, however little?
    Yes. The reason I took on a PhD was to help me to be able to work again. It's only partially succeeded, and I'm currently 2.5 years behind, with a possibility of “failing to complete” because the system doesn't want to wait for me.

    Are you now totally unable to work?
    I think I can work about half time

    Does the benefit system hold you back from working?
    Yes. First the assertion of being “Unfit for Work” hurts quite a lot, especially being put on the scrapheap at 25. With a variable condition there is no way to join the professional workplace again, except perhaps doing the occasional bit of teaching. Secondly, the system is unable to cope with:

    • being unable to work is not the same as being unskilled
    that conditions vary, so being able to work full time for one week doesn't mean you can do it every week
    • people who can only work part time and face losing their benefits safety net completely will really only be interested in as highly paid work as they can get – so I want to fix computers for £40 an hour (or perhaps work on railway planning projects for somewhat more than that...), not stack shelves in Poundland for less than minimum wage, not because of greed, but because I need to earn enough money to be able to eat and pay the rent when I can't work...

    However, I feel we're getting the worst from both sides, because the way professional workplaces are structured also holds a lot of people back from working. Part time jobs are very difficult to find unless you can find a jobshare partner yourself (has anyone ever done this?). Having said that, my University is great, and supports a number of staff with various disabilities.

    What fears do you have about schemes that aim to do more to support those with long term conditions into work? What, if anything, interests or inspires you?
    In principle, the idea of a “Work Related Activity Group” is a good one, recognising that not everyone is either completely able to work full time or completely unable to work at all. However, my concerns with this are:

    • the one year cut-off, as if everyone suitable for this group will be better in a year's time and able to work full time
    • that it is being implemented in a time of high unemployment, which suggests there is no demand from the wider economy to bring more people into the workplace
    • that the support which people with long term illnesses and variable conditions need to work is not actually going to be there
    • the assertion that people just need more skills and education, and they will magically find work. This is still all-pervading, for some reason

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  15. I love all these ideas Sue, especially the co-operative one (which would probably need to be combined with the issue you raised about what happens when you are long-term completely unable to work?)

    My personal feeling is that benefits should be more flexible for those unable to work properly. By this, what I mean is, when you work your benefits are not taken away completely, but reduced, so you end up still able to take care of yourself but the amount you are being paid by the government is reduced.
    So if you are provided £400 a month, and that month you managed to earn £90 from working. The £400 would be reduced (probably not by as much as 90; lets say 2/3 of that, by £60, to provide incentive to work and also to account for the fact that you probably aren't being given enough to live off on benefits). This would mean
    - if you were able to earn a small amount you would not be cut off
    - you would be fully able to work as much as you were able to
    - we would be able to support ourselves to an extent (which is nice)
    - if you suddenly could not work, you would still receive that £400, as you would still be in the system for

    The amount received in benefits seems generally below the amount you earn as a full time worker on minimum wage. So I would suggest that sickness benefits not be removed entirely, until you are able to provide yourself with that amount of money (hence the if you earn £90, your benefits are reduced by £60 thing) - and as a chronically ill person you would stay on that system, so when you encountered a time where you suddenly couldn't work full time, or work at all, your earnings would once again be topped up.

    Actually, this basically is the idea of the guaranteed minimum income but just for the sick/disabled - population wide it would probably solve a lot of problems too. (I've only ever heard one practical study of this, in the US, and it was immensely successful... but it was ignored, presumably due to it being a bit too left wing for america to stomach)

    I realise that that idea requires a lot of administration, but frankly we have a lot of crazy systems already, I doubt this is any worse than the calculation of tax credits or w/e.

    The one thing of course would be that it would need to be month by month or week by week, not year to year (as tax credits are) or people would be cut off due to overpayment.

    Anyway that's just my foggy thinking of the moment.
    The rest of the questions!

    Would any of these suggestions help you?
    - I think they all potentially could, but frankly I'm so sick right now I couldn't even earn to the £20 threshold

    What is your condition, How long have you had it for?
    - ME, 7-8 years

    When did you last work?
    - Dec '11

    What did you do?/How long did you work for?/Why did you have to stop working?
    - I was studying at university, where I taught undergrads occasionally. I had jobs over summer though. I was studying/working as a software engineer. I was originally doing under a full-time week, but had to increase to full time hours (due to working fulltime over summer, and then due to coursework loads) which caused me to crash. Didn't help that my doctor at the time insisted that more activity would make me better (ha ha ha)

    Would you like to work, however little?
    Yes!

    Are you now totally unable to work?
    I could... maybe do one or two hours a week... if it was a good week, and I was working from home, and it required very little physical or mental effort. So, um, yep :(

    Does the benefit system hold you back from working?
    Right now no, because I don't get any benefits - it holds me back from being able to eat properly though ;)
    I think it would if I started to improve (and the government actually believed I was sick); if I could work maybe 4 hours a week, that would be above the £20 threshold, so they would be all "congrats! you are fit to work full time!" and cut me off. Woo.

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  16. Would any of these suggestions help you?

    Yes, being able to work from home with totally flexible hours would be great.
    Also the idea of companies posting work that could be done from home as piece work.

    What is your condition, How long have you had it for?

    Industrial Accident. Major Spinal surgery on my neck which has had a negative outcome.
    60% disabled for life, with severe loss of motion in neck and left arm, severe nerve damage to the Ulna Branch and all that entails.

    Do you have other suggestions that you think could work?

    When did you last work?

    Jan 2007.

    What did you do?

    Close Protection Officer.

    How long did you work for?

    From 16 to 45.

    Why did you have to stop working?

    Industrial accident left me severally disabled.

    Would you like to work, however little?

    Yes!

    Are you now totally unable to work?

    Within the current system I will never return to any meaningful work.

    Does the benefit system hold you back from working?

    It doesn't hold me back from working as I can't work, but it definably effects my condition, caused by the stress of jumping through there hoops and lies.

    What fears do you have about schemes that aim to do more to support those with long term conditions into work?

    That if I am seen to be trying to actually improve my situation through my own efforts I will have my benefits stop as I am obviously fit for work, despite the fact it takes me 5 times longer to complete anything once I start it and I don't know what days I can actually do anything, as the pain is to bad.

    What, if anything, interests or inspires you?

    The On Line Game “World of Warcraft” has helped keep me sane, shut in my house every day. Through the game I have expanded my knowledge of programming and have learned to write LUA code and am the Author (unpaid) of three Game Add On's.
    I also am working on a Patented project directly related to my disability which also effects thousands of others with similar problems. I can't say more than that at this point.

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    Replies
    1. I forgot to include that because I am currently in the WRAG group (Under Appeal)That I will magically be better in 28 days, which is when my one year is up.

      Delete
  17. These are all amazing ideas. I am in the enviable position of being able to do some of 1) already, as before I got too sick I worked full time for a very inclusive organisation. Now I get 'overflow' work from them. The thing which makes this work is trust - they know me and the quality of my work very well indeed; and they know that I can still produce quality work when I'm ill.

    When the same organisation offers 'overflow' work to people it doesn't know, the process is much less flexible, and everything has to be booked up much more rigidly in advance. Often work doesn't get allocated out at all, because the business can't always plan and may need someone who can do it in the next 2 days. But if they don't trust that someone, they won't give them the work, so it will be allocated to a poor in-house person to do that night in their free time (on the basis that this is a cheaper, if poorer quality way to get the work done; if you're going to pay extra to get urgent work done, you will want very good quality).

    Building trust with employers to take on 'overflow' capacity from sick and disabled people will therefore need careful effort - some kind of benchmarking scheme, some kind of guarantee that businesses can ask if particular people who've worked for them before are available; very good mechanisms for seeking feedback; money-back or discount guarantees possibly.

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    Replies
    1. This is one of many niggles that keeps me awake.

      How does the employer know to trust the employee and vice versa? You're right I think, that it could work with a simple feedback system, but how do you start to build up positive feedback, if you have none to begin with? That old chicken and egg thing.

      I'm sure there could be some way round it though.

      Delete
    2. I think there would have to be a pilot scheme with 'investor in people' type companies/local authorities who wanted to show their social conscience and win awards for being good eggs. People without amazing CVs already could build up 'points' by doing 'free trial' work for these companies - for a very short period; and then would be guaranteed paid work with the same companies if they did well.

      Once those people had got some big name companies on their CVs, other companies would be much keener to join the programme and take those people on.

      The type of work that might need to be outsourced could be editing, crosschecking, producing Powerpoints and spreadsheets, doing research, collating data in other ways, data entry and so on. This brings up some security/commercial confidentiality issues. There would need to be contracts already in place with 'member companies' and with 'time bank members', ensuring that commercial information wouldn't leak across companies. Companies may also need to decide to what extent 'time bank members' would be given access to their IT systems, and what type of clearance would be needed.

      But those things can easily be sorted out - the key thing would be how to persuade enough companies to sign up to it. I guess the selling point would be that, unlike consultants or temps, spoonie 'time bank members' wouldn't be doing anything else. So the USP is to guarantee to have someone good available at very short notice, and they wouldn't turn round and tell you they were already booked up. Companies wouldn't have to go trawling round lots of consultancies or temp agencies, which is a real pain - they could just think 'eek we have x urgent overflow work coming up in the next 1-2 days, I will ask the Amazing Spoonie Agency to provide someone and they will do that in just a few hours!'

      - I know temp agencies do all this in theory, but most temps are inexperienced with v limited skills, so any company with urgent needs that go beyond basic admin is going to take quite a gamble with a temp agency.

      Delete
  18. Would any of these suggestions help you?
    A work pool where i could work at random times for random amounts with random length breaks and get something back in return could possibly work.

    What is your condition, How long have you had it for?
    CFS. I've had it about 15 years of which only 5 or so have actually had a diagnosis.

    Do you have other suggestions that you think could work?
    A benefit group between the current esa and the current jsa is needed. The idea of a tier where you get to work part time and get a guaranteed minimum income would work for me. Right now its very easy to be too well for ESA and to sick for JSA. This results in regular periods of no income usually followed by back payments after difficult periods of time.

    When did you last work?
    A few months a couple of years ago

    What did you do?
    Originally I did quality assurance in a food factory. Retrained to administration at doctors suggestion.

    How long did you work for?
    Started working part time at 16. Full time from 18 to 21ish when I had to quit. Couple of full time jobs since then maybe 4 years worth.

    Why did you have to stop working?
    My absence rate gets beyond what my employer will/can manage. Sadly this period where the employer attempts to retain me and I try to cling to employment by my fingernails actually causes more financial hardship than its worth.

    Would you like to work, however little?
    Very much so. The longer i'm unable to work at all the harder and less likely I am to work again.

    Are you now totally unable to work?
    I'm totally unable to work within the current employment frameworks. In theory there are types of work (but not employment) I could do which I simply do not have sufficient talents or opportunities to do such as writing or art. These are also all types of work with irregular incomes and workloads which would cause financial stresses I no longer have the resources to deal with (there is only so much you can borrow off friends and family before the well dries up)

    Does the benefit system hold you back from working?
    Yes. To even contemplate working I have to be able to bounce on and off benefits as my condition changes. If this was possible and with help from a temporary employment agency of some sort it might be feasible to work occasionally. Certainly not regularly enough to meet a living wage though.

    What fears do you have about schemes that aim to do more to support those with long term conditions into work? What, if anything, interests or inspires you?
    They all seem to stop as soon as you achieve work and the problems are all in maintaining work rather than getting work for me.

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  19. Some great ideas, but isn't it frustrating that governments can't come up with the same quality of thinking. I actually wrote to Tony Blair when he was PM suggesting that people could volunteer and earn pension credits, but got no response other than an acknowledgement.
    I am unemployed and looking for work, but unfortunately am now with the work programme. This means I am under pressure, which is unhelpful, and of course getting no help at all. My previous recent work was mainly around user involvement, which I got into after suffering a breakdown. I suffer from depression which is partially linked to Aspergers. I have no friends and spend most of my time alone in a small flat. My job (and possible replacements) disappeared in the cuts. At 55 I am struggling to get interviews. I also have been through some bad experiences recently and I have lost my trust of people which could make it difficult for me in work, but the fact is I don't get close enough for it to become an issue. The Work Programme and Jobcentre are worse than useless as they tend to make my job hunting less effective. The problem is that they (and government) have no understanding of the issues and no interest in helping. They believe their own propoganda and demonisation of all unemployed (and the poor) and have therefore adopted a policy of bullying people to get non-existent jobs.

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  20. Just to add to my previous post:
    I think that we need to go back to the quota system of having a certain percentage of employees with a 'disability'. DDA has been pretty ineffective and the quota model would be a better match for a system looking to target disabled people for employment.

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  21. What is your condition, How long have you had it for?
    I have had a complex neurological disease with a vestibular disorder for 32 years. It affects my co-ordination, vision, balance, thought processes, hearing etc.

    Do you have other suggestions that you think could work?
    Home working,strengthening the DDA for more protection in the workplace, allowing those with chronic fluctuating conditions a period of time in which they can try a job without penalties. That may be allowing them to work for 2 months and deducting the wages like for like from their benefit, but not penalising them if they find they are not well enough or able to work in this way. If they fail in their attempt to work their benefit should be available to them without going through the claim process again.

    When did you last work?
    March 2012

    What did you do?
    Executive Assistant/PA, though I have worked in a variety of roles/sectors in the past.

    How long did you work for?
    I have worked for 27 years, since leaving school.

    Why did you have to stop working?
    My illness became chronic and I became sick and disabled.

    Would you like to work, however little?
    Yes I would.

    Are you now totally unable to work?
    Yes.

    Does the benefit system hold you back from working?
    Yes.
    I'm too scared to take on a job to try, even for a few hours a week right now as I have a chronic but fluctuating condition. I generally only have around 7 better days a month so taking on a job would be risky and potentially very stressful. What employer in their right mind would take me on whilst I'm this ill at this current time?

    What fears do you have about schemes that aim to do more to support those with long term conditions into work? What, if anything, interests or inspires you?
    My fears are that there will not be 'support' other than leaflets and an equalities helpline to call and that employers will cherry pick the lowest risk sick/disabled if they take part in any government scheme. My illness falls under the DDA and yet over the years, when I was better than I am now and worked full time with it, I have been systematically discriminated against in the workplace over and over again as soon as I've fallen ill. I have always declared the illness.

    I started work at a union, with a 1 year probation period some years ago. 4 months into my employment I had to take 2 weeks off sick, this was an extreme example of my illness and generally happened every 2 years or so. I was hauled into HR with my boss at the end of the probation period and asked to 'promise' that I wouldn't have this illness and time off again. I said that I couldn't promise that as it was linked to my chronic illness and reminded them it was covered by DDA. I told them that I mostly made up for the time I took off by working out of hours and I was happy to do so when I could.I was then asked if the specialist couldn't 'just give me a tablet to cure it', and told that they'd been 'caught out before'. They then told me that my employment was terminated and sent home that day.Shocking experience. Nobody could get me my job back, though I did appeal to the union and unsurprisingly failed. An employment tribunal would have been too distressing at the time and I felt completely unemployable when that happened. It was traumatic and I thought then that I never wanted to go through that again, and yet I did, in different guises over and over again. The government have never helped me in the workplace and is unlikely to ever do so in the future.

    Now I am incapable of working due to the severity of my illness, I can only see situations like that repeating in the future if my illness did improve to allow me to work again,that's if I could get anyone to take me on without trying to hide my illness.

    I feel the only way forward is for me to be self employed and work from home.

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  22. I have ME (diagnosed in 2008)and chronic depression and anxiety. I stopped working in 2007 after 29 years of employment. I had spent the last 19 years working in the civil service and the stress of my job certainly contributed to my illness. In fact I was so traumatized by my place of employment that it wasn't feasible to consider returning there on any basis. I have been on incapacity benefit since 2008 and been through 2 appeal hearings (both successful) and numerous Atos exams. I am now in receipt of ESA and this will cease in Feb 2013. I will have no income after that date and will be totally reliant on my husband who earns a very modest wage.Certainly not enough to support myself and our 2 sons.We have been steadily accruing debt since I had to stop work. I would love to be able to work again but my illness in complex and unpredictable. I could possibly undertake a couple of hours work at a time but then I would be exhausted and have to rest for several hours if not the rest of the day. My anxiety condition makes social interaction very difficult and exhaustion is always the result.I can never plan any activity without being prepared to have to change plans at any time.I have severe IBS so even leaving the house can be impossible on a bad day.
    I do volunteer work for an animal charity occasionly and I really love it.It feels good to be part of something it only for a couple of hours. I have a feeling of real grief when I think of what I have lost in not being able to work and also a fear of the future with no financial support of even acknowledgment of my situation.What I have been through with the benefit system these last few years has been nothing less than torture and I know most people reading this post will know I am not exaggerating. It has diminished me profoundly and my condition has deteriorated due tho the fear and stress. I feel shame that I am ill and shame as a benefit claimant. I have decided to give up the fight for further benefit applications as the harm it has caused me has been too great a price to pay. I would never have been able to believe or understand how a person can be so beaten by such an inflexible and cruel system had I not been through it myself. TO BE ILL OR DISABLED IN THIS COUNTRY IS A CRIME AND UNLESS YOU ARE IN THE FORTUNATE POSITION TO BE ABLE TO SUPPORT YOURSELF YOU WILL BE PUNISHED. I realise I have strayed away from the subject here so apologies. I would really like to be helped back into some sort of work by people that really understand what it is like to have to cope with the limitations that chronic illness brings. Working from home and at the hours I choose and a great deal of flexibility would be essential.

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  23. For many people working from home and being self employed with their own company (that is the best way to work as a contractor) is a no no as the banks will not lend to able bodied people with healthy bank balances and certainly will not lend to those with illnesses etc. Until money is made available (say about £50k interest free loan over 25 years) to start such businesses then I think the "work from home" idea is a non starter.

    ReplyDelete
  24. I am blind and like many blind or Visually Impaired, (partially sighted people) we want to work, we would love the opportunity to work,
    When I still had some sight and lost my Executive job, I took a van drivers job on the simple basis that £250 a week was better than £75 of the job center.

    The Govt boasts that 33% of Vi are in work, and thats great but it also means that 66% who are of working age are NOT working but could and would given the chance.

    To employ "us" requires an employer installing technology, for which they get help and tax breaks so its to their advantage.
    Its common that if when applying for a job we "omit" the fact that we are blind our qualifications get us interviews, if we declare it , we dont get interviews.
    At the interview HR and the company dont see and or talk about what we CAN do, they see only the issues, the problems, things we cant do.
    there isnt a problem , its just a challenge we have not yet met or resolved.

    By cutting DLA for long cane users(not guide dog users) under the PiP regulations coupled with the access to work fund its even harder to get to work.

    50 years ago the Blind were trained to make baskets (basket weaving) operate switchboards, or tune pianos. the Chinese now make the baskets, there are no switchboards of note, and who owns a piano any more? Its a sad reflection that the DWP has failed to recognize that there is a lack of knowledge withing the Job center Plus / DEO staff with regards to blindness, we are often sent on a course, only to find on arrival, either they do not have software to support us, or staff trained to work with us.
    The Government in its latest actions and proposals, sees a short term issue not a long term opportunity & solution where the blind are concerned.

    Disabled quotas were cancelled many years ago, to prove OUR worth it might be of interest if Councils and Government had a quota system so we could prove that the disabled have a value, we have a lot to offer in so many fields instead we are scrapped off far too early and left to rot with diminishing resources.
    what I think we need is FAIRNESS we can and are productive with much to offer our society.

    Mike Hughes
    @blindmike47

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  25. What is your condition, How long have you had it for?

    I was retired due to ill health in 1999 following a motorcycle accident at work in 1996, which resulted in serious spinal, disc damage, peripheral eye damage with only 50% peripheral eye sight in each eye, and nerve root damage to the spine.
    Over time I have associated Arthrosis, Chronic Obstructive Pulmonary Disease, Fibro/ME symptoms, chronic pain and relapses of moderate to severe depression. A wheelchair user now most of the time with poor concentration due to the management of medication etc.

    Do you have other suggestions that you think could work?

    I think it is dependant upon the person itself and only if the govt were to put considerable help into helping someone find their potential.
    I.E If a severely disabled person required an assistant to help them, who would pay for this? If a disabled person required considerable time off from a workplace would there be a back up to take over, who would pay for this?
    If a disabled person trying to go back into the workplace required returning back to university/ technical college etc, would there be a provision to financially assist this in as much as ESA/DLA etc not being cut and in fact providing more finances to cover the cost of the courses involved and to stay in further education regardless of age etc?

    When did you last work?

    In 1999, retired medically as unfit to participate in any form of work by Local Authority and the Jobcentre disability section.

    What did you do?

    Environmental Health Officer.{EHO} (Degree in 1992-1995 & then to Local Authority as an EHO)
    Previous to that I was in Dentistry for over 20 years.

    How long did you work for?

    Dentistry 20 years
    EHO for 4 years, before being medically retired without a pension from work.


    Why did you have to stop working?

    Retired due to ill heath by Human Resources at Local Authority on the say so of the Disability section of the Jobcentre in 1998 who said I was medically unfit for any work along with the Occupational Health Consultant employed from the Local Authority. They did look at other modes of work/training etc but deemed my disability to severe to undertake any mode of activity in either direction and informed me that it would be preferable to have Incapacity Benefit along with Industrial Injury at 50% and Disability Benefit both in care and mobility increasing to higher rate as my mobility/ health decreased over time. I was informed this would be the best route rather than having an occupational pension.

    (How wrong is that now with the current form of welfare benefit changes!!)

    Would you like to work, however little?

    If working was a feasible prospect I would be in it by now, and my chosen profession with my disabilities would be teaching or research for HoL/C to utilise my Science Degree.

    Are you now totally unable to work?
    Yes

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  26. OOps forgit the rest, here goes.

    Does the benefit system hold you back from working?

    When on IB etc I was informed I was not able to work or undertake further training etc as listed above. Now that the Welfare Changes are in practice it is becoming increasingly difficult to meet the new criteria set out to be in the Support Group and DLA care/ mobility components in the high rate category will be almost impossible to reach when PIP comes into force.

    With this in place where does it leave people such as me who were told ‘no work, no training’ etc, and stopped in effect from taking up any work/training etc.
    Now I am 55 (yes that means my retirement age has been increased from 60 to now 66!!!!) how am I supposed to find any form of meaningful employment with my restrictions of disability in place.
    I would dearly of loved to become a teacher when I became disabled, as to me it seemed a suitable profession to undertake but it was then a no go situation. My health has obviously deteriorated since 1999 and cannot now see a way out that would be effective.
    If it means things have changed to help me work in this field, then fine, however I feel I should sue the govt for not allowing me to take up the profession when I tried to back in 1999 when Jobcentre disability people said no.

    It doesn't hold me back from working as I am unable to work, but it definably effects my condition, caused by the stress of jumping through the hoops and lies that are now in place.



    What fears do you have about schemes that aim to do more to support those with long term conditions into work? What, if anything, interests or inspires you?

    My fears are that there are no positions for those who are disabled out there from an Employer’s prospective as they cannot afford to employ someone with ongoing health problems, the finances do not stack up favourably for either the employer or the employee.
    With the onset of help being given to the employer ceasing from the govt next year for aids to help a disabled person in work, the employee will then have to pay for a suitable work station, ergonomic keyboard etc, which will not be provided by the employer as the govt will stop this disability aid package.
    This will put increasing pressure on a disabled employee to fund disability aids to assist them in the work place, who have no income in the first instance to purchase such aids. With this in practice no employer will take on a disabled employee or will a disabled person want to work if they have to fork out lots of money in order to try and stay in work to ultimately fail if their health lets them down.

    ReplyDelete
  27. Would any of these suggestions help you?

    The main word here is flexibility. If businesses could allow for fluctuating conditions then I'd love to do a few hours a week. If you look on the internet there are companies offering call center work at home, but they are very strict about how you work, which is no use to someone who never knows how ill you'll feel from one day to the next. I'm afraid that business cannot allow the slack needed for disabled people.

    What is your condition, How long have you had it for?

    Ill for 17 Years

    Do you have other suggestions that you think could work?

    The DWP needs to build flexibility into the UC next year, but all it seems focused on is people finding 35 hours a week. Chronically disabled people should be able to dip in and out of work as they can without having to go through a complex claim process. If the DWP offered that, I think many disabled people would take the chance and try to work. I can't do it now, but I used to have to work for a year then take a year off and then try again. I couldn't do that now though due to the severity of my illness, but I could do something for a few hours a week.

    When did you last work?

    2009

    What did you do?

    Music/Film workshop leader and private tutor

    How long did you work for?

    Had the odd year off since being ill, but basically starved back into work due to not being able to claim disability benefits during the first 9 years of the illness.

    Why did you have to stop working?

    Stopped working in the end due to experiencing massive spasms and the deterioration of the fatigue and my cognitive skills, which meant that I couldn't remember student's names or physically fulfill my duties

    Would you like to work, however little?

    Most definitely


    Are you now totally unable to work?

    No, but I'm either bad or much worse than that, sometimes I'm totally unable to work for 6 weeks at a time, and the process of leaving the house for an appointment or anything else leaves me incapable for days after, so I wouldn't be a reliable employee.

    Does the benefit system hold you back from working?

    Previously, after taking time off I was able to build up my work gradually with the support of the income support team, but now because I'm so ill and because it took so long to obtain any disability benefits I would worry what would happen if I crashed again and then couldn't obtain the benefits I needed to survive. I am not confident that the current support available is appropriate or helpful in truly supporting disabled people's needs in the workplace.

    What fears do you have about schemes that aim to do more to support those with long term conditions into work? What, if anything, interests or inspires you?

    I am really scared about being put into the WRAG. Just traveling to see an adviser would exhaust me, and as for being put on the Community Action Programme, after one day of attending I would be in serious trouble physically and would probably collapse. Nothing inspires me with regard to the programmes on offer!

    ReplyDelete
  28. Well, that's a capitalist society for you. Valuing the "professional" (ie paid) over the amateur (unpaid) in everything except sex.

    If you look deeper, of course, things aren't that straightforward. When I visited Germany in the mid-80s, the village had a "volunteer fire brigade" which was celebrating some kind of beer fest. I was a little startled at there being a volunteer fire brigade, but is that any different than using volunteers in the emergency services and judiciary? Eg special constables, ambulance workers who are St John Ambulance volunteers, (non-stipendary)magistrates, RNLI volunteer crew members?

    So typical of the Tories that volunteers are celebrated if they have jobs (or are supported by spouses), but still classed as a drain if they are on benefits. But, sadly, Labour are the same. That is part of the reason I vote Green. I don't know whether the Basic Income/Citizen's Income Scheme will become a reality, but I think the idea has a lot going for it.

    ReplyDelete
  29. Would any of these suggestions help you?
    Yes, they are amazing!

    What is your condition, How long have you had it for?
    I have M.E and EDS. Have had chronic pain since the age of 11 (but managed to get to university although it made me much worse) and the ME for 7 years.

    Do you have other suggestions that you think could work?
    Not sure

    When did you last work?
    Never have (but have always wanted to, hence doing the degree in the hope I could work)

    Would you like to work, however little?
    Yes, yes, yes!! So much. It would give me some dignity, self esteem, pride, eradicate guilt. I have started volunteering one hour a week and love it. If they could pay me just for that one hour I’d feel amazing.

    Are you now totally unable to work?
    Yes, but would love to do, say, an hour of admin work from home 2-3 mornings a week (although of course am one of those people who wouldn’t be able to do it some weeks)

    Does the benefit system hold you back from working?
    If I’ve thought of starting a craft business I’ve been very scared of making enough steady income and scared that the dwp will say ‘oh there you go, you’re well enough to work, no more help from us!’

    ReplyDelete
  30. Just need to drop this reference in here so it doesnt get forgotten - i think the report it refers to could be very relevant: http://www.neweconomics.org/blog/2012/10/11/disabled-people-don%E2%80%99t-cause-welfare-dependency-%E2%80%93-they-are-the-solution-to-it

    ReplyDelete
  31. You ask:

    Would any of these suggestions help you?

    I am desperately trying to develop a co-operative Social business that could roll out nationally but do need support to get is off the ground - so yes

    What is your condition, How long have you had it for?

    I have a variety of conditions - Fibro; Sjorgens; Carpel Tunnel and nerve entrapment; Spinal displacment - differing levels & spondylitus


    Do you have other suggestions that you think could work?

    Employers need to focus on the output and quality of work and not perceive disability as the problem

    When did you last work?

    2009

    What did you do?

    Qualified & time served Community Worker, Adult Tutor (community work & Equalities) Counsellor

    How long did you work for?

    30+ years

    Why did you have to stop working?

    Combination lack of understanding from management which deteriorated into Harassment this had a further detrimental impact on my already poor health

    Would you like to work, however little?

    Yes

    Are you now totally unable to work?

    It is impossible for me to ever try to work again within a traditional work set up under a 9-5 Mon-Fri type contract

    Does the benefit system hold you back from working?

    The difficulties with in work benefits and transitions do


    What fears do you have about schemes that aim to do more to support those with long term conditions into work? What, if anything, interests or inspires you?

    I fear anything the current Govn claims is for my benefit


    ReplyDelete
  32. We talked about balancing benefits and work for the whole day at benefits camp last winter. Lisa Ellwood and I think someone else (@claireOT perhaps?) wrote about it online.

    ReplyDelete
  33. I've read your blog many times, very inspiring. Never been tempted to post before, but I hope my comments will be useful.

    Would any of these suggestions help you?
    I would love to work from home, but my previous employer wouldn’t consider it and now I’ve been out of work for a while I wouldn’t know where to start.

    What is your condition, How long have you had it for?
    I have Crohn’s Disease and Fibromyalgia. For about five or six years now I think. Both controlled now with drugs, but the tiredness remains and I can only manage two to three hours a day of activity (standing up, traveling on buses/trains, walking about a classroom/library) for three days before I need a day of proper rest to recover. I can work at the computer for hours though – unless it’s a bad day …

    Do you have other suggestions that you think could work?
    I’m currently doing OU (last chance as the fees have gone up enormously if you already have a degree) and enjoy interacting with people online. So some kind of work where you can advise/help people online maybe.

    When did you last work?
    August 2010

    What did you do?
    IT systems development, maintenance and training in a University Student Records department.

    How long did you work for?
    Only nine years really due to bringing up two children as a single mother after divorce.

    Why did you have to stop working?
    Ill health, I could work for a day or so then I had to have a week or more off and work were just getting fed up with me. I used to be worn out from just the commute, it took an hour to recover in the mornings. They tried to terminate my contract, they wouldn’t give me early retirement (not ill enough according to the pension authority doctor) but after advice I held out until a chance for redundancy came along.

    Would you like to work, however little?
    I would love to work – I hate being dependant on my husband for every penny. My ESA was stopped in April this year as I had already had my year’s worth and because he works I get nothing. We still have to pay for my prescriptions and can’t see how I can get new glasses or go to the dentist any more. Just can’t afford it. I even applied for a part time job in our local co-op but they didn’t even respond to my CV. Over qualified I guess.

    I currently attend a local history group (mostly elderly people) two hours twice a week, giving IT help and advice. I spend one morning (three hours) transcribing documents at the local archives and the rest of the time I spread out the domestic stuff so it all gets done without completely tiring me out.

    Last year I did some volunteering, another two hours a week, at a local Adult Education Centre, teaching older people how to use the Internet and send emails etc, but the staff there are now desperate for work themselves and under threat of redundancy and there’s nothing for me. Mostly due to the government removing the subsidies for classes unless people are on JSA or ESA, so many of our clients, pensioners and women whose husbands work, now can’t get cheap or free classes so of course they don’t enrol.

    Are you now totally unable to work?
    By the official definition of ESA no – but the woman at the Job Centre that I had to see every month didn’t bother trying to send me for jobs or any other kind of “work support”. She knew no-one would set me on, not with my sick record (off 18 months before getting redundancy). If there was a job that was 6 hours a week, 2 hours over 3 days, well yes I’d have a go!

    Does the benefit system hold you back from working?
    No, not now I have no income at all. When I was a single mum I didn’t work for ten years because of the benefit system. You were allowed to keep the first £15 in those days – I once earned £25 covering a couple of shifts in a pub for a friend and the DSS asked for my benefit book back even though they paid me around £90 a week. I sent them a cheque for the £10 and kept my book!

    I would be happy to earn a pittance for a bit of work – that £25 a week I didn’t dare earn when the children were little would be nice now.

    ReplyDelete
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  35. Would any of these suggestions help you?

    A) Working from home yes. this would cut down the stress of travel, which let's face it, even healthy people are stressed out before they even start work.

    What is your condition, How long have you had it for?

    A) Various but the main one is ME/CFS (which is an umbrella for a myriad of issues that interfere with life no end). Just taking basic care of myself is a full-time job. Also have mental issue ie, depression and anxiety, history of PTSD

    Do you have other suggestions that you think could work?

    A)I don't have the energy to think about that!

    When did you last work?

    A) 10 years ago.

    What did you do?

    A) Worked in public sector in various roles, the last one in IT

    How long did you work for?

    A) 6 years with the last job.

    Why did you have to stop working?

    A) Had a breakdown due to bullying/victimisation. Should have claim constructive dismissal, but could not face it.

    Would you like to work, however little?

    A) Yes

    Are you now totally unable to work?

    A) Hard to tell, under "normal" circumstances, yes. Would not be able to sustain a 9-5 pattern.

    Does the benefit system hold you back from working?

    A) Yes, and the tax system.

    What fears do you have about schemes that aim to do more to support those with long term conditions into work? What, if anything, interests or inspires you?

    A) the schemes are probably window-dressing. Like a glamour model, all front, no substance.

    Nothing inspires me anymore, I only have energy for surviving.

    I am considering becoming a prostitute as there does not seem to be any other way. Can work from home in short bursts (sorry to put it like that!)

    ReplyDelete
  36. Dear Sue I think this consultation is a fantastic idea and I would like to see the outcome. Here's my input:

    WOULD ANY OF THESE SUGGESTIONS HELP ME?

    Yes, working from home as an employee (as opposed to self-employed) would help to some extent. I recently attempted a part time internship in a voluntary sector organisation. Policies for flexible working, including sometimes working from home existed and were promoted but I was shocked to discover they were aimed at parents and employees with caring responsibilities but not people with disabilities or chronic illness. Im sure this was an oversight. This was an organisation that wanted to provide equal opportunities and encourage a diverse workforce. It had never occurred to them that access to work for people with disabilities might include flexible and home working.
    My supervisor was very accommodating about my need to work flexible hours and from home. But given it was an unpaid internship they had little choice but to accept that my attendance at work was unpredictable. The bottom line was that I got the work done on time.
    However, I could see there were limits to which the organisation could accommodate home working. In my experience the culture and the dynamics of organisations makes face to face interaction essential. Not just at scheduled meetings but in the “corridors”. Employees could sometimes work from home when they needed to but when I had a relapse and ended up working more from home than in the office, I got left out of initiatives and felt excluded from not having a reliable presence in the office.
    If I were able to work say 75% of the time from the office and 25% from home with flexible hours I would argue my right to flexible working practices. But I don’t think an organisation is able to include and accommodate a co-worker who cannot work in an office environment for the majority of the time.

    WHAT IS YOUR CONDITION? HOW LONG HAVE YOU HAD IT?
    ME/CFS for 24 years!

    WHEN DID YOU LAST WORK?
    I’ve been ill all my adult life so never been able to work, although gained a degree from part time study. Improvement in the last few years has led to me attempting the part time internship mentioned above

    WOULD YOU LIKE TO WORK, HOWEVER LITTLE?
    Yes, I can put in about 12 - 15 hours per week (that’s during a good patch). I use it to serve on the management committee of a small local charity. This gives me all the understanding and flexibility I need from fellow committee members. But of course it will never be paid and I feel I lack support in developing skills that might eventually lead to paid work.

    DOES THE BENEFIT SYSTEM HOLD YOU BACK FROM WORKING?
    I don’t know. Since I don’t have the prospect of paid employment given my limitations I haven’t even looked into whether it would work financially.

    What fears do you have about schemes that aim to do more to support those with long term conditions into work?
    I fear my forthcoming Jobcentre interview and WRAG requirements. Not only because they won’t have the solutions in terms of finding an employer able to accommodate my barriers to work, but also because it will prevent me from being able to carry out my voluntary work as a trustee of a local charity, as well as impacting on my ability to care for my children as a lone parent. The requirement for regular interviews and any other mandatory activity will simply drain the limited energy I have for participating in my community and being a good parent to my children.

    I particularly support your suggestion for a “volunteer credit” which could boost pension levels and should excuse claimants in the WRAG groups from having to participate in the Work Programme.

    ReplyDelete
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