Regular readers will remember how very hard I and others fought the Time Limiting of ESA proposed in the Welfare Reform Bill. For me, it was the most disgusting proposal of all. We won an amendment in the House of Lords that promised "AT LEAST 2 years". But the government simply overturned it using financial privilege.
The following real life story, beautifully written by Tricia Long, a supporter, shows why we were so right to fight and why the government MUST reconsider this terrible betrayal of sick and disabled people. For the 700,000 people estimated to be affected, just like Tricia, please share her story, it deserves to be told.
"I have epilepsy and experience 3-4 seizures a week which leave me tired, disorientated often emotional and quite vulnerable.
In between I attempt to maintain a “normal “ lifestyle but have obviously had to adapt this to take into account my seizures that have no real warning signals or particular triggers, although they are exacerbated by stress and tiredness.
About a year ago, my long term Incapacity Benefit, which I had been receiving for a number of years, became Employment Support Allowance.
At the time I didn't fully understand the implications of this, in particular the time limited aspect of it, although I did feel the language set the tone of what this benefit represents.
I filled in my form and was duly placed in the work related activity group (WRAG). This surprised many people who know me and understand that my condition does not really make me fit for conventional employment.
However I was already becoming upset by the process of having to give the worst case scenario of my condition in order to “justify” my benefit and bought into the idea that perhaps this new policy would be enabling rather than disabling - many of the previous disability benefits had been - maybe this would be a positive thing.
I decided not to appeal the decision but grasp the potential opportunity it might offer me to support me into some employment.
I was very let down and disillusioned by what happened next. The tone of the letters I received from DWP were aggressive and seemed to assume that I was not working through choice rather than disability.
I was referred to a private job agency, JHP, and my experience just got worse. I was by this stage becoming quite upset and angry by my experience but still felt that maybe it was not representative of the policy as a whole.
I was actually told by my support advisor that I was a bit of a “health & safety hazard”. It was obvious that JHP were still working on a job seeker allowance model.
At that time they certainly did not appear have anything in place to understand or help me with my individual barrier to work (mostly unconsciousness!).
They offered basic skills, basic computer work or a CV writing service. If these were all I needed then I would have been working already!
After some initial contact they seemed keen to emphasis the voluntary work I already do for AWP, our local mental health trust and encouraged me to put this down as self-employment. As I’m unpaid apart from occasional minimal expenses and coffee, this seemed unreasonable.
I have not heard from them more than a couple of times since and do feel let down; upset by the wasted opportunity and quite frankly the wasted public money.
I do believe that due to the “payment by results” model I have become one of the many “parked” as a difficult-to-place-in-employment ESA client.
I think I had been living in a state of slight denial, as I had become increasingly aware of the iniquities of the welfare system and so called “reforms”. I had used the anger this inspired get involved in social media and more mental health activities as and when my condition allowed. I heard many stories of people much worse off than myself and I forgot to worry about what was in store for me.
On the 12th March 2013 I received the dreaded brown envelope telling me that the new law (Welfare Reform Act, 2011) states I can only receive contributory ESA for 365 days - and mine were up on the 8th March 2013.
I was no longer entitled to this benefit. It is surely not beyond the ability of the DWP to send out these letters before payments actually stop or do they expect us to have a countdown diary?
The letter pointed out that if I live with someone who works 24 hours a week I will not qualify on income grounds.
Surely 24 hours at minimum wage would not be enough to be expected to support a disabled person as well as yourself? Who actually thought that bit of the policy out?
My condition has not changed so therefore I presumably would still qualify on medical grounds. I feel incredibly let down by this process.
How can it be justifiable to remove my support after an arbitrary number of days decided by a politician not a doctor?
I feel devalued and quite despairing that I am now being judged merely on my ability to work conventionally. It feels like this policy is “one size fits all” and takes no consideration of the wide range of disabilities included in the apparently “fit to work with support” WRAG group.
It takes no account of the unpaid contributions I have made to society despite my disability.
I have not recovered miraculously during this period or received any help to become ready for any sort of employment that might potentially support me - how can that be considered fair?
My husband runs his own business. He is also bi-polar and at times experiences the mental health problems that go with this condition.
Together we manage to maintain a balance most of the time, but he has had to be hospitalised several times in the last few years when his symptoms got out of control.
He has never claimed benefit for this condition and when well, he pays a considerable amount of tax back into the economy. He must now manage his business, his own mental equilibrium and care for me when I’m unwell and can’t do much for myself.
When the phone call comes from the paramedics that I’ve had a seizure, he must drop everything or organise a rota of friends to step in when he can’t. This he does willingly.
However added to this he is now totally financially responsible for me. In many ways I am lucky he is ok with this although I struggle with it very much as an individual. I feel it makes me dependant and not able to even contribute a little to my own living expenses.
I also worry it will add pressure on my husband’s mental state. His condition makes him very functioning with a great need to achieve. I hope this will not tip the balance we work hard to achieve and result in a mental health reaction.
Quite frankly the DWP letter made me cry and I am not a crier. I generally cope well with most things life throws at me but admit I now feel very stressed and anxious.
I feel insecure and slightly out of my depth with what to do next.
I’m trying to be positive but have not slept well for the last few days and have experienced more seizures than normal for me. Surely this is not the “enabling” experience the government profess to want for those with long term health conditions?
This - like so many things - is very short sighted thinking. It may only result in moving cost from one budget to another. If I have more seizures, it will cost the NHS more. If my husband becomes more unwell as result of the additional pressure of caring for me, then the cost will escalate still further as he will be unable to work and pay tax – possibly even needing more intensive mental health interventions.
And none of this even takes into account the non-financial but equally important cost to my self image as someone who is still living daily with a long term and quite frankly, disabling, condition.
I am quite resilient but do wonder about the effect it may have on my ability to continue to contribute to society in a positive way.
Surely this is not sensible policy? It seems to contradict the government mantra that “There is no health without mental health” and I feel strongly that the effect on many people will be profound and ultimately destructive.
The only people who have benefitted from this at all as far as I can see are possibly JHP (and other private job agencies) being paid to provide a “not fit for purpose” service.
I recognise I am so much luckier than some as I don’t at the present time have to worry that it may take weeks to move my benefit from one type to another or how I will manage to live on no income in between.
I’m not destitute, but I do feel strongly that I represent a group of people who this policy has left feeling more disabled and devalued than ever before.
I am quite frankly afraid for both my future and the type of society we are creating for the most vulnerable in it.