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.
** 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.