Back in the World of Work!

Quick post to say that I have started work part-time! It's fantastic to feel part of the world again. My employers have been very understanding about my health and have been telling me not to over do it. I am feeling very lucky to have found a job that is flexible enough to fit in with having M.E. It has been hard this week, after so long out of work/life it's been very tiring and a bit of a shock to the system. I've been working part-time but it feels like full time! Absolutely exhausted today. I have the day off tomorrow to catch up on some energy before Friday. I'm having to be very careful as I'm so tired and starting to feel a bit run down already. The next few weeks are going to be all about pacing myself and adjusting to a new routine.

I get very stressed very easily when tired, I am a terrible perfectionist too which is also exhausting as I'm constantly trying to push myself to do things to an unreachable ideal level. As far as work goes I have had to constantly remind myself that I am able to do my job well and I have to stop myself stressing out about things when I should be relaxing. Easier said than done but I am getting there. My confidence is growing slowly as a result of the projects I am working on. I will keep going and hopefully things will become natural to me and easier to cope with.

Going to spend the next few weeks resting as much as I can between working. If it weren't for my Mum cooking me dinner I probably wouldn't have had the energy to eat properly for the last few days. Thank goodness for understanding parents! I over-did it last weekend which has probably contributed to my exhaustion this week. I went to visit friends and family, I don't get to go out with friends much so it was great to see them and have a night out, but it also left me with very little reserve energy for the week ahead. It's so hard to juggle work and rest! In some ways though work has made me feel better, mentally I'm really enjoying being a part of something again and earning my own money. Even though it isn't enough to support myself on, it's still loads better for my self esteem than being on jobseekers allowance.

I still haven't had any formal responses to my complaint letter to the jobcentre/working links (reproduced in the post below). As there is a postal strike on, I am giving them the benefit of the doubt. I do hope it achieves some good and isn't just dismissed or ignored. I am currently considering applying for a DLA to help with my low income and lack of ability to support myself, I haven't yet mustered the strength to finish filling out the form. It's such a long form and anything to do with benefits instantly stresses me out and depresses me now. I still feel that people at this stage of illness get little or no support. I did meet a very kind person on facebook who has offered to advise me on completing the form which is a big help, as yet I haven't had time or energy to do it though. Hopefully I'll have it done by the end of the week.

"Flexible" New Deal - Working Links Debacle. Treating people like slackers

Below is a complaints letter (rather long as there was A LOT to complain about) which I am sending to the Jobcentre and Working Links people. I was treated to a hideous day which left me utterly exhausted for the rest of the week. The emotional and physical stress left me completely dead on my feet. I sincerely hope nobody else has to go through anything like this!

To Whom It May Concern:

I am writing to complain about the appalling treatment I recently received from the “Flexible New Deal” programme run by Working Links on the 13^th of October 2009 at the YMCA Leisure Centre in Scarborough. I am 26 years old, I have two degrees and have suffered from M.E/Chronic Fatigue Syndrome since I was 14, and have a past history of epilepsy.

A few days before, I received a phone call asking me to attend a compulsory workshop in Scarborough (23 miles from my home) as there was not one being run from my local Jobcentre in Malton. I was more than willing to attend this day, and even had some hopes that it would be useful to me. Although I did find the manner in which I was asked to attend quite abrupt and threatening, having been told repeatedly that I would lose my benefits if I did not attend.

Because of my health, early mornings are not easy for me, particularly if I have had a disrupted nights’ sleep, which often happens to people suffering from M.E. I can often wake feeling no more rested than when I went to bed. I arranged for my Mum to drive me to Scarborough as it is not safe for me to drive when very tired and there is no local public transport from my village. I had never been to Scarborough before so wanted to leave in plenty of time, to ensure I found the right building and was not late.

When I arrived there was no reception desk or anybody to let me know if I was in the correct place. I wandered round the building until I found somebody to ask. When I stated that I was there to attend the Working Links induction I was told that there was no Working Links happening that day and I must be there for the Jobcentre’s “Back to Work” session. Although sceptical about this I could only go by what I was told so was directed to wait in the kitchen as they were not ready. The meeting according to my letter was due to start at 9.30am. At about 9.40am we were asked to take a seat in the room provided for the “Back to Work” session. On entering the room and taking a seat I and two other people were told that we were not on the list for that session. We took out our letters, which had been sent to us instructing us about the day and showed them to staff. When the staff saw these letters they were stunned as they were apparently unaware that any Working Links session was supposed to be held that day!

I had made a lot of effort to attend this session, my Mum had to sacrifice her time to take me, and the people supposed to be running it were totally unaware that we were coming.

There were about six of us in total attending the session so we were sent back to the kitchen to wait whilst staff, understandably panicked and rushed to arrange a hastily cobbled together plan for the Working Links session. We did not start the session until about 9.55am.

The letter I had received before attending stated clearly that during the induction we may be asked to discuss “the skills and work related abilities you have and anything that might be stopping you get where you want to be, including medical conditions” I was very keen to do this as, having two degrees already, it is my medical history, and not lack of training that has prevented me gaining employment. However, whenever I attempted to raise the issue I was treated dismissively and it became clear that during the induction we were not allowed to discuss anything other than “the new government rules.” We were expected to blindly obey these rules in order to continue to receive Jobseekers allowance.

We were told that to continue to receive benefits, we would have to be completing 30 hours of work related training and activities per week. I was understandably concerned by this because I am only supposed to be looking for part time work until I am strong enough to increase this. It has been recommended by my GP that I begin with working about 16 hours a week and build up gradually, to avoid having another set-back. When I tried to raise this problem I was aggressively and abruptly told that “those are the rules and if you don’t comply you will lose your benefits.” J**** T****, who was delivering the un-planned seminar, did not want to hear of any problems or issues I may have, and there was an attitude taken towards me which implied I was just finding excuses. No matter how calmly or how many times I tried to clarify certain issues, and ask for advice on my individual needs, I was answered dismissively and very unsympathetically. I was reduced to tears of frustration in the seminar, in front of a room full of strangers, and was made to feel absolutely miserable. I felt I was being treated like a second rate citizen who could not be bothered to find work.

I was at the time of the seminar already doing voluntary work at a local museum and had arranged this for myself with no outside help and have gained a huge amount of work experience. I had for some time tried to organise a work placement through the Job Centre but despite many phone calls and emails, the people who were trying to arrange this (RR of YH Training services Ltd) had ceased to contact me and no work placement ever materialised. Being desirous to work and gain experience I arranged one myself.

During the seminar we were told that in order to comply with the “Flexible New Deal” rules I would have to attend a session in Scarborough once a fortnight. Again this worried me as it is not exactly local or easy for me to get to. When I tried to ask a question about this, discussing my ability to get to Scarborough in relation to my health difficulties, I was again met with an aggressive response and threatened with having my benefits taken away. I live in a rural isolated location and there is no public transport within easy reach (the nearest bus stop being a mile away at least). I was horrified by the prospect of having to get to Scarborough once a fortnight, especially if it was morning appointments as it had been that day. There is no guarantee I would be able to drive myself and could not expect my mother to drive me there and back every time as she had done that day. I only recently passed my driving test (only having taken it recently due to a history of Epilepsy) and cannot drive when tired as it can be dangerous, I suffer cognitive dysfunction and myoclonic jerks due to my M.E. Again I tried to question the sense of forcing me to go to Scarborough once a fortnight when my local Job Centre in Malton allowed me to sign on by post, as according to them the distance from my home was far enough to warrant this. I asked if there were any sessions run nearer to where I was living or if some could be run in the Malton Jobcentre. Again and again I was aggressively answered that I had to attend or I would lose my allowance. J***** T**** at one moment even sarcastically asked “well if you can’t get here, how are you going to get a job?” It was clear she wanted to assume that I was only out of work due to laziness, even though she knew absolutely nothing about my personal history. I spent much of the seminar in tears and felt totally humiliated by her responses to my concerns.

J***** T**** was completely unprepared for the seminar and her behaviour towards me was unprofessional.

The day was physically and emotionally exhausting and I felt ill and drained of all self-esteem. I have battled this illness since I was 14 years old and never once have I given up, I am proud of what I have achieved culminating in gaining my Masters degree. However during the seminar I was treated like a waste of time. I had gone to a lot of effort to prepare for the day and nobody was a bit interested in listening to what I had been doing to find work. It was only after the event that I realised the letter I had received informing me of the day and stating what I should do in preparation was actually signed by J***** T****. It is somewhat confusing that the letter informing us about the seminar was signed by the woman who on the day, claimed to have had no prior knowledge that we were due to attend.

The letter stated in the “what we expect from you” section, that I should: “tell us what you’ve done to find work. It’s easier if you write this down and bring letters from employers and anything else that shows us what kind of jobsearch activity you’re doing so we can be sure you’re getting the right support.” I did this and had prepared copies of my CV, records of jobs applied for locally, records of my voluntary work etc. but on the day J***** T**** was not the least bit interested in any of this and was merely going through the presentation and laying down the rules. The presentation itself heavily implied that we were out of work due to being “happy as we were” and not wanting to find employment.

The rest of the session was spent filling out various forms including basic knowledge tests etc. Even this seemed slightly degrading and we were not given any explanation as to the purpose of these forms, by that time I had lost all my strength and was just trying to fill them in as fast as I could so that I could go home. At one point in the “presentation” an image was put onto the screen which appeared to be some kind of optical illusion. Because of my history of epilepsy and cognitive dysfunction resulting from M.E I found this difficult to look at as such things often make me have involuntary jerks or spasms. When I mentioned this I was impatiently told by J***** T**** “well don’t look at it then”. What was baffling about this episode was that no explanation at all was given as to why we were supposed to be looking at it anyway. It seemed like yet another pointless exercise and, like the rest of the day, an utter waste of time.

The last few years have been a huge struggle for me, and it has been incredibly hard to get myself back on my feet and into a position where I am able to work part-time. I have had little or no help from anyone other than G.P. and my parents and am therefore proud of my achievements. The Working Links session made me feel like an utterly useless member of society. I left in tears, very shaken by the treatment I had received and so exhausted that I forgot the “Working Links” information pack that I had been given. For someone struggling to live with a chronic yet invisible illness the day was detrimental to my health and wellbeing. The effort involved to arrive on time was exhausting and the treatment I received left me in physical pain, emotional exhaustion and despair. The thought of ever returning filled me with dread but I was forced to arrange another appointment before leaving.

I wonder why, once I had explained my situation, I was not referred to the Specialist Disability Employment Programme, which I discovered existed when I looked at the Flexible New Deal information published on the DWP website. This programme’s web page states that: “The aim is to provide a tailored, coherent range of specialist employment services which can respond more flexibly to the individual needs of disabled people”. Surely this may have been a more appropriate programme for me, yet nobody even made me aware of it despite my asking about disability programmes on several occasions both at my local Job Centre and at the Working Links induction? I would also like to quote the Disability Discrimination Act which states that: “it is unlawful for an employer to discriminate against you if you are disabled: by dismissing you, or subjecting you to any other negative treatment”. Perhaps Working Links should refer to this in the future to prevent them subjecting anyone else to the awful treatment I received.

To end on a positive note I can report that the day after the Working Links debacle I received a telephone call from the museum where I volunteer, asking me to begin part time employment with them. I do not want to be positive statistic for Working Links as my employment is nothing to do with their programme but is a result of my own hard work. The Museum that has hired me has, and is, being wonderfully flexible and understanding even though they are under no obligation.

The Jobcentre/Working Links programme were not in the least bit supportive. Part of my joy in hearing that I had secured paid employment was that I would no longer have to be treated like an employment evader by the Job Centre/Flexible New Deal.

On hearing of my ordeal my employers instantly offered to write in support of my case and show their own displeasure that “a hard working and conscientious” person could be treated so badly. Please ensure that this complaint is taken seriously as I do not wish anybody else recovering from, or trying to live with, a chronic illness to be treated the way I was.

Yours Faithfully

A Hopeful Day and a Wasteful Day

As I am sure anyone suffering from M.E knows, new research has discovered a possible cause/common factor in those suffering from the disease. I won't go into this too much as more information than I can provide can be found online and in other M.E websites. It is promising news though, that break-through's may finally be being made, and excellent to see that this has become national and international news. The findings were on the front page of today's Independent. I will put one link for anyone reading this who wants to know more - The Whittemore Peterson Institute who conducted the research have a useful Q and A section on their website all about the XMRV virus which is a possible cause of M.E/Chronic fatigue syndrome. You can also donate straight to them to continue their important work.
http://www.wpinstitute.org/index.html
I would get tested right now if I could (if only out of curiosity).

Other news of my M.E life, aside from the above excitement, is that I've had a typically frustrating and exhausting week of dealing with the incompetence of the Jobcentre. I requested information a long time ago as to whether there were any training courses available that perhaps I could attend whilst biding my time as an unemployed person. I have two degrees so was only looking for a basic computer/Microsoft office course or something to make it easier to get an office admin job. I was met with a non-commital answer which led me to the eventual conclusion that despite all the government spiel about a "new deal" to get people back to work, and to offer lots of exciting new options for the unemployed it was just more empty words. Once again any support on offer seemed irrelevant to my case/situation. However I was told that once I had been unemployed for more than 6 months I could contact a local college, based in the nearest large town, to get some free "work focused training." I was given a phone number for the college and told to call them.

Pathetically hopeful about this, partly for the chance to meet some people and get out the house, I rang the college to make an appointment to arrange said training. After several confused phone calls involving being hung-up on by accident, and met with confusion over who to refer me to within the college, I was also told that I should not have been calling them direct as it should have been the jobcentre arranging it. I did finally manage to arrange an actual appointment to "discuss options." As anyone with M.E knows, making an hour long journey to keep an appointment is in itself tiring at best, and exhausting at worst. I am still recovering from a recent cold so I was already having a rough day. Despite this, I arrived at the college and met the person who was to discuss the "work focused training" with me. However (and I am not making this up!), he literally sat me down for a minute or so and asked me about myself etc, he then 'ummed and 'ahhed and told me that basically, the college were no longer running subsidised courses through the Jobcentre. Those few that were still running were all full! I didn't even get to look at courses or discuss attending any. He did have the grace to apologise for this and admitted that my being there was a complete waste of time.

Once again the Jobcentre/powers that be have completely let me down and failed to take into account my individual needs. Why was I sent on an hour long journey to a college that had absolutely nothing to offer me?! Why could the college not have told me over the phone what they told me in person? Why did the Jobcentre refer me to a college that was no longer supplying any Jobcentre related courses? When I asked why I wasn't told over the phone of the problems/lack of courses running the college representative replied that it was the Jobcentre's responsibility. Talk about a lack of communication in the system! All this sadly resulting in a waste of my precious energy, not to mention leaving me once more feeling depressed and hopeless. The whole tiring day resulted in nothing productive whatsoever, I am so annoyed I may write a formal letter of complaint to the Jobcentre regarding this most recent incident. As usual there just seems to be nowhere for me to go for a little help.

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.