Sunday, 4 October 2009

Jobseekers Allowance, benefits of job seeking

Unlike many people with ME I am currently able to be looking for part-time work. I have over the last 2 years since my complete burn out been slowly but surely getting back on my feet. However even if you are lucky enough to be in this situation there is still little or no help available. I still have to have long sleeps most days to stay well so this makes finding paid employment which fits in with having ME almost impossible. When my incapacity benefit was taken away (at a time when I could not work) I went to citizens advice to seek help. They informed me that due to the government/benefits department unwillingness to acknowledge ME as the debilitating illness it is, there was no point in putting myself through the horribly stressful appeal process. I even had a letter of support from my local MP but citizens advice informed me that the benefits department would have no interest whatsoever in it. By this time I was so depressed by the treatment I'd already received I did not have the strength to fight them any more. The Citizens advice bureau did however come up with an alternative and they told me that if I registered for jobseekers allowance with the provision of only being able to work part-time due to my health I would actually receive more money than I had been getting on incapacity anyway.

I decided to go with this option and have been receiving jobseekers allowance for nearly a year now. However I have tried to be pro-active in seeking work now I am more healthy but have had little or no help from anyone to do this. I picked up a leaflet at the jobcentre about helping people with illness or disability back into work. This leaflet said all the right things but when it came to it, was just another dead end. I made an appointment as instructed by the leaflet to meet with the relevant person at the jobcentre yet was told that none of the options applied to me as it was more focussed on helping people with "sever disability" (as if ME is not severe) or to help people keep their jobs once they had one! The only option available was to register my interest on the placement scheme they ran in collaboration with an outside organisation. I did this about 6 months ago and have to date received no placement and the people supposed to be organising it have stopped communicating with me altogether. I complained of this to the jobcentre and was met with rolled eyes and the answer that basically there was nothing they could do. I am going to contact the placement organisation again to seek an update but don't expect to receive a reply.

Obviously yet more dismissive treatment is a depressing symptom of the way people with ME, no matter what stage they're at, are treated in society. It seems there is just no place for it and nowhere to go for help or support. I currently do some voluntary work at a local museum and have been enjoying it, just to get out when I can is a big boost to my esteem. If I was able to arrange such a placement at a museum myself, why weren't the people who are paid to arrange one able to? I think all it comes down to seems to be that if you have ME then you are on your own as far as trying to get your life back together is concerned. Another ridiculous side of things became apparent when I received a terse letter from the jobcentre interrogating me about my voluntary work so they could make sure it wasn't affecting my "actively seeking work" status. I was being pro-active and getting myself some work experience but was made to feel like I was somehow breaking the rules even though there were/are absolutely no jobs available to me.

Another set-back typical of the way people like me are treated was when, having been ill after a minor surgery, my jobseekers allowance was taken away with no notice given to me or no prior warning. I received 2 letters in one day from the benefits dept both saying different things, when I made yet another lengthy call to them (being on hold for 20 mins goes with the territory) I was then told that my benefit had stopped as when I was ill I had not been "actively seeking work"! This was so ridiculous it was almost funny, not only had I had surgery but had then been ill for 3 days after and to top it all off I was punished for it. Having made a complaint to the benefit people my benefits were restored (grudgingly) and back pay was given to me, I never expected any kind of apology despite one nice man telling me on the phone that my benefit should never have been stopped. Merely dealing with the benefits department can make a person with ME (or any other debilitating illness) feel worse and cause them huge ammounts of undue stress and fatigue. During my incapacity battles and jobseekers battles I have become so stressed out by it I have been in tears, there seems to be no niche in society for people suffering from ME.


  1. Benefits are a nightmare. I have had a battle to gain every single penny I 'earn' from this awful government. My ME is severe and I need a high level of input just to be able to live independently. Work isn't even an option for me sadly.

    Wanted to clarify though. ME is a registered disability under the Disability Discrimination Act. You seem to have been advised otherwise??!!

  2. I was advised that due to my recovering health and the fact I was no longer bed ridden I no longer qualified as having a disability. Its a case of "not disabled enough" but not yet healthy enough to support myself. Outrageous that anyone with ME gets treated badly but they even seem to punish you for getting a bit better! Sorry to hear you've had such a struggle I hope things get easier for everyone one day. I no longer live independently and had to move home with my parents as I have no means of paying rent or earning enough to support myself but at the same time not "disabled enough" to be eligible for support.
    I'll put a link to your blog on this page if its ok with you