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.

** 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. 


  1. Would any of these suggestions help you?
    Yes, particularly the part about chronic, fluctuating conditions and not being able to commit to 'normal working hours. The government need to recognise this and pressure businesses into helping us more.

    What is your condition, How long have you had it for?
    Osteo-Arthrits, 9 years(from age of 33) Fibromyalgia 6 years, Depression 2 years.

    Do you have other suggestions that you think could work? Yearly work hours, being able to work when you feel able and stating how many work hours you could do in a year. Bit like flexitime and being able to make up the time you've had off when having a flare up and took time off ill.
    When did you last work?
    Oct 2011

    What did you do?
    worked for the NHS

    How long did you work for?
    Since I was 16, 25 years.

    Why did you have to stop working?
    was sacked due to the time I had off sick.

    Would you like to work, however little?
    yes, but would have to fit around my illnesses, enabling me to take time off when I am bad without loosing my job.

    Are you now totally unable to work? yes

    Does the benefit system hold you back from working?
    yes, because if I was sacked from a job again due to sickness absenteeism, there is now a time limit to claim ESA ad I would be out of the time limit and without any income at all.

    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 that they would just thrust any job at me to satisfy their figures. I want to study to become better qualified in the hope that one day there will be a job I can do and fit around my bad days.

  2. I have not been able to work since June 05.I was a community care worker and collapsed in a clients home.I have Fibromyalgia,Chronic Heart Disease,High Blood Pressure,IBS,Underactive Thyroid and all the other delights that Fibromyalgia brings into my life...I would LOVE to be able to work...but I cannot.I have constant pain,Mobility Problems,Problems sleeping,Extreme Fatigue etc,etc,etc.I DO have a few hobbies that I could make SOME money at....but not enough to live on and I am afraid to do ANY selling online or at craft fairs because if I am found out I will lose my benefits.

  3. Whilst this consultation is a good idea and some people might be able to work from home flexibly or with enough adjustttments,can I please just make the point that some of us are totally unable to work under any circumstances and should be granted the acceptance, ending of harrassement from the DWP and just be allowed to do the "work" of trying to cope with our conditions as best we can, improve if possible and not be made far worse by all the stress and anxiety of being called a fake, scrounger,liar, cheat etc.

    Some of us have lives that are barely worth living as it is with 24 hour medical problems. The fear and force of having to try and work on top is only making things worse and increasing the burden on GPs, NHS etc.

    Why is it there no longer seems to be an acceptance that some conditions just mean it is impossible to deal with the constant symptoms AND work. This has to be a fundamental priority to any proposals or it will force many, many people off the cliff.

    1. I don't disagree, Anonymous. Those who are the most sick and cannot do any work, however flexible the provision, should definitely be supported to live as well as they can, and with the appreciation that managing a chronic, disabling condition is, for some, a full time job in itself.

      Any conclusions we reach as a result of this project HAVE to include the acknowledgment that for some, no work is possible. If we deny that, we've done a major disservice to those who most need support.

  4. "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."

    Implement the beecroft reforms for any employee falling under the DDA (effectively removing DDA protections from employees with pre-existing conditions).

    Good or bad?

    Bad because it removes protection from individuals.

    Good because discrimination and lack of acceptance from business is rampant and needs to be acknowledged.

    If business has less concern about dismissing someone we might end up with more disabled workers - leading to an attitude shift in employers, who can then better adapt their processes as you have suggested above.

    This would be more effective than a tax break.

  5. I don't know where else to post this but I was just reading some pages about the assessments, and something that hasn't been mentioned occurred to me:

    Of the quoted 640,000 ESA claimants who withdrew their applications before assessment, and who are often touted as proof the assessments catch dodgy claims, I was one of those people – because Employment & Support Allowance is what substitutes for Statutory Sick Pay for self-employed people like me with less than £6,000 savings and, obviously, no employer who can pay SSP.

    Just like SSP for employed people on a PAYE payroll, you claim it for as long as you're sick, and for most of us thankfully that's nowhere near long enough to reach the assessment at 6 weeks.

    So when I was off sick for 3 weeks with a crippling but short-lived health problem, my ESA claim was a statistic, and then became another when I withdrew my claim (a more accurate description would be "ended my claim") and returned to work before they had time (or any need) to assess me for the higher rate or longer term payments.

    Sorry to reply off-topic, it's just that I’ve never seen this mentioned anywhere else and it must account for a fair number of “withdrawn prior to assessment” ESA claims. I feel this fact needs to be far more widely known.