So just like manyother people with Chiari / Syrinfomyelia I am having a battle with the DWP (Department of Works and Pensions - Or social security as they used to be referred to as)

You can get their information by clicking here

So, I was made redundant in April 2008 and struggled to find a new full time job. Then the credit crunch hit and things became worse. I was claiming JSA (Job Seekers Allowance) whilst looking and applying every day for anything between 5 and 20 jobs per day. (They ask you to apply for a minimum of 2 jobs per signing on period) I had no real luck - a few interviews but I was either over experienced / qualified or not enough relevant experience.

I started to work part time as part of the DWP's allowed hours scheme. I was using the part time work as a vehicle to perhaps gaining full time employment. Well I was really, because the amount of forms that I had to fill in for the DWP declaring such hours each week meant that my hourly rate was effectively halved because of the amount of paper work to be done, and then they decreased my benefit on top of that!

It was in July 2008 when I started to feel symptoms, but worked through until just before Christmas 2008 when I was unofficially diagnosed.

I started to claim ESA (Employment Support Allowance) from 20th January 2008 when I was officially diagnosed. The symptoms had worsened somewhat anyway and I found my part time work exhausting, painful and was unable to safely drive myself around anyway.

All was going well until it came to the 12 week period when they are supposed to increase your benefit but first they send you on a work related health check.

I was due into hospital on 8th April 2009 and they sent me an appointment date of around the 14th or 15th. Well I had expected to be in hospital still, so asked for it to be re-arranged. There was also a work related interview to re-arrange also. But they told me that they would contact me again in 6 months time as I was going in for major surgery.

The health related interview was not so caring - I was given a date 8 weeks later, just 8 weeks after surgery? The typical recovery time is 3 months anyway or up to 12 months dependant upon who you speak to?

I attended anyway to show promise - partly also to relieve the boredom of being stuck in the house. My wife drove me there and waited for me.

The Doctor was very nice, although she admitted that she had no knowledge of Chiari Malformation or Syringomyelia and that she would examine me based upon my Current symptoms. I did inform her that I was still recovering from major surgery - this didn't bother her as it would not have any impact upon her assessing my current conditions....... amazing a doctor that can see in to the future?

The tests were all quite fair, apart from when she asked me to bend down to touch my toes - I told her that I could not possibly even attempt that at the time of the assessment as I had been suffering with severe sciatic pain, when I bent down any way I always had a headache and became dizzy and nauseous. She then marked me down (unbeknown to me until weeks later)as having either refused or having "full movement and capability" therefore they did not allow me any points for that level of activity. Totally unfair and not a representative assessment of my condition and ability.

I received a summary report a few weeks later, listing all the issues that I had received points for and a recommendation that I could return to work within 6 months and would benefit from further training.

I then received a letter from them a few days later telling me that my benefit had been stopped from the 12th June as I had been found fit for work!

I rang the DWP and was told that it was a clerical error and that they often get complaints about how they word the replies. They also told me that I could appeal against the decision and sent me a form.

I filled this in and sent it off with a little background information about my symptoms and situation.

They stopped my benefit again so had to ring to get it reinstated - it appears that there had been an administration error at this point.

However they did write to my GP who was supplying me with Sick Notes at this time, and told him that he no longer had to give me one as they had found me fit to work!

I was absolutely out-raged!

They were however allowed to give me one if I had appealed against the decision. The DWP however, were not prepared to confirm to my GP that they had received an appeal from me.

I could use a few choice words to describe how I felt about the DWP at that point - and still do. There are 4 Doctors at my surgery, 3 of them brand new and who wouldn't not give me a sick note because they could not understand the letter properly. There is something wrong about a foreign doctor that cannot read a letter or understand the written English language. Luckily my old Doctor had no problem, he knows and understands my symptoms even though he does not understand my condition.

I was absolutely out-raged!

Not once had I been told what type of work that they expected I could do, and was left to think that they meant my previous career? Well, there was no way and there still is no way that I could ever return to retail management and development driving 30k to 40k miles per year, staying away from home as I used to.

The level of information from the DWP has been absolutely diabolical at best. The tool that they have is withholding money - and that is a joke in itself.

I was eventually asked to go in for a work related interview - great, the guy that interviewed me was not a medically trained person and it was just an entry level chat before he passed me on to the third party company that does the DWP interviews (The Shaw Trust) My letter told me that the interview was to last an hour. I was trying to get across and discuss all the things that I had to - and reached the half hour stage when he started to make noises about seeing other clients and other appointments. The interview slots were only a half hour long now - but nobody had thought to inform the client? Why was I surprised at all? Left hand a right hand - efficiencies of the DWP versus clients needs and arrangements? Who always comes out first? yes....not you and me for sure.

So the interview was concluded prematurely without me having the opportunity to ask most of the questions that I had prepared.

I was passed onto the Shaw trust and spoke to a very nice lady who talked about "barriers" that I had to get over about returning to work - someone else who was not medically trained, although fairly sympathetic - well at least until I learned that she was financially targeted and rewarded against how many people she could get off benefit each month - she is not going to be on my side is she?

I had as usual prepared for the interview and had done lots of background research. Not the usual slacker that she usually see's day in and day out.

I had come to the conclusion that I could not guarantee to an employer that I could be in work, every day, every day before 8 or 9am, actually be able to last the whole day or even complete any type of work load in between the hours due to my range of current and developing symptoms. I was not independently mobile, and public transport tires and exhausts me. If I am to get back to working for a living then I need to be able to do something from home, that I can pick up and leave during the day, is not physical and can allow me to manage around my current capabilities.

So I have decided that web design and related stuff will now be my focus. I can work as self employed, can work early doors, late evenings, weekends etc etc to work around my symptoms, good days and bad days. All I need is training.

Guess what? They can only offer me MS Word and Exel and basic PC course run by local schools and colleges. I have been manipulating these MS packages for years and drawing up sales presentations, training presentations and the like for about the same amount of time. I am not an expert user, but can pretty much do anything that I would need to without the basic training.

They cannot offer me any specific training as they do not have the budget. They could however find me a junior place in a company for them to train me, they could get someone who is aware of my needs, and will make certain allowances? Were they not listening?

I have been in management for the last 20 years. I know for a fact that I would be subject to disciplinary procedures in relation to any companies sick policy or lateness policy within a matter of weeks. They told me that I could "try it" and if it didn't work out then I could bodge my CV to explain it away as "training".....basically lie on my CV! Cool- thank you for your expert advice.

I guess that this is really going nowhere and that I will have to fund myself somehow?

In the mean time I am waiting for my second appointment and am waiting for my appeals tribunal.

I have already written to the tribunal offering my concern about the expertise of the Doctor that assessed me back in June. I have also raised concerns that at the time I was still recovering from the operation, and that now I have "recovered from surgery" I am now left with residual nerve damage in my spine as well as many other debilitating symptoms which do seem to be worsening with time.

I have not yet put to them that I know that Chiari and Syringomyelia are not listed within their references, therefore they cannot legally make any decision upon mu case. I have also begun to collect lots of information about Chiari and Syringomyelia that they would find useful.

Nor do they really understand that all of the assessment forms that I have filled in, that the refer to as evidence and other information that they have is now very much out of date, irrelevant and of no practical use.

In the mean time they are getting away with paying me my full benefit entitlement - maybe I am cynical but is all this rubbish about saving themselves money at the expense of my well-being?

Where would they be if we all withheld our taxes and NS contributions and made them work harder for it and prove that they needed as much? hmmmm...........