What now?
8 May 2017
When I turned around to look at something, that’s when my life changed forever. Something as simple as moving my head triggered a series of events that where to have a huge effect on me as a person and my way of life.
My eyes where the first things to go. They stopped behaving as they should. The right stuck in the corner. “That’s not right” I thought, and the next morning trotted off to the optician at the top of the road. He took one look and immediately phoned King’s College Hospital and told me to get there as soon as I could. Luckily for me it’s only a couple of stops on the train from where I live. About twenty minutes later I was seen by a doctor and admitted.
“We have to run some tests” I was told. Two days later I was told it could be MS. At the time I joked about it saying “Does that mean I have to stop shopping at Sainsbury's?”. it wasn’t until I got home and read through all the leaflets that the reality started to sink in.
Let me tell you I never expected to be treated the way I have. There are two stories here.
The NHS and the DWP. The National Health Service has supported me and been as helpful as they possibly can, from the doctors and nurses at my local surgery to the specialists and everyone at King’s. I have a specialist nurse who talks me through every procedure. And I cannot praise all of them enough for the work they do.
MS (or Multiple Sclerosis), is a serious progressive disease of the central nervous system, occurring mainly in young adults, and thought to be caused by a malfunction of the immune system. There is currently no cure. It’s a scary thing to have and, as it says on the tin, is progressively getting worse.
The DWP, on the other hand, is a completely different kettle of fish. The moment you walk through the door of the Job Centre you are made to feel as uncomfortable as possible. You are surrounded by security guards asking if they can help you. “No, I would like to speak privately to someone about my disability”. “You don’t look disabled to me” I am told. Security guards are now fully trained physicians, apparently.
Once upon a time disabled people used to be seen on the ground floor. Makes sense really. Now it’s on the third floor. “Is there a lift?” I ask one of the doctors dressed as a guard. “Yes, but you have to be accompanied, you can’t use it on your own”. The last time that happened was in the library when I was 12 - you couldn’t use the lift unaccompanied until you were 16. I'm 53 in a couple of months.
Eventually I get up there to meet someone clearly not interested as she was being laid off in a couple of days. I was told to come back three months later. This went on for many months until eventually they sent me to A4E, the work related program. Once there you are no longer on the unemployment register thus making the figures look good. You get the idea. Whilst there you are told to do between twenty minutes and an hour of job searches before being allowed to collect your travel fares to get home with.
After six months of that I had enough and signed up to a place called ‘Free to Learn’. This was to get a free fork lift license. Three months later, clutching my many NVQs, I left there with every intention of getting a job in a warehouse somewhere.
Back to the Job Centre. This time meeting someone on my side who couldn’t have been more helpful. She informed me then that for the past two and a half years their records had been incorrect and I was suffering with depression not MS. “You should be in the support group”. Great. Two and half years wasted.
Now, pardon me for being rude, but this is where things go tits-up or ‘FUBAR’, as the Americans call it. This is where you are introduced to a thing called ATOS. This is the organisation tasked by the Government to assess peoples’ disabilities to determine if they are entitled to what is now called PIP (Personal Independence Payment). This is to replace disability living allowance.
You receive a letter in the post and are told to report to one of their assessment centres. So off I went to Balham. As soon as you walk out of the station you are being watched. If you manage to cross the road unaided and walk through the door you are fit to work, according to them. This is before they even say a word to you. Next you receive another letter turning you down and explaining the appeal procedure. What they don’t tell you is that you then wait for over a year to get an appeal date.
After filling out what seems like a telephone directory-size form of stupid questions you sit and wait, being paid the bare minimum to survive. For that year you become a recluse. You don’t have money to go out and see friends anymore and if you’re not careful, fall into a deep depression. You’re not really living anymore, you’re surviving. If you don’t have a strong network of friends around you, you think about killing yourself a lot.
Finally, you get your appeal date after many months of mental torture. In less than an hour it’s all over and the trained professionals who should be doing the assessments and making the decisions agree with you. MS is a ‘serious permanent degenerative disease’. A quick tip for ATOS here: Ask Google.
So, after many months, it’s all over. They pay you all the money they owe you and you think to yourself: The End.
How wrong you are.
A year later they want another assessment. This time Deptford.
Turned down again.
Appeal again.
Win again.
That was 2015, and here we are, two years later, and guess what? They want another one.
Am I missing something here? I don’t know how many people heard or saw the Victoria Derbyshire Show only last week where the minister responsible for all of this said these wonderful words. Here is the full transcript of the exchange:
Victoria Derbyshire: "There are plenty (of people) who are still being reassessed with permanent degenerative conditions”
Richard Graham: "Yes, some conditions do degenerate, some stabilise, occasionally some do get better. It's a mixed situation"
VD: "Which permanent degenerative condition gets better?”
RG: "Victoria, I'm not going to try and get into an argument about specific conditions here"
VD: "It's not an argument. You just said some get better and I'm asking you which permanent degenerative conditions get better?"
RG: "Let's get back to the overall facts…"
VD: "Is that because there isn't a permanent degenerative condition that gets better? Quote, unquote."
RG: "They key thing about PIP is that actually more people are getting the top level and more of them are getting help with mobility, more of them are getting help with their daily allowance than used to be the case with DLA (Disability Living Allowance).
So there you go. if the people who are supposedly in charge don’t know, how are the people at ATOS supposed to? I can’t help but think it’s called that because they don’t give a-tos[s].
The whole system is designed to make you give up. And to make the unemployment figures look good. That’s only my opinion, but there are other people who are struggling through and still alive. Believe me, many have given up and killed themselves. If you asked them they would have similar stories.
The mobility scheme, set up to give people their independence back, has just been scrapped. People are having their cars taken away. The Conservatives want the NHS privatised. One of my medications is £1000 a box. How is that going to work?
If you are disabled and need help where do you go? Who do you talk to? I will never give in.
I used to have a great life and that all stopped five years ago. A system that wrecks peoples’ lives and is designed to make you give up is not the medication needed when you've just been diagnosed with something that’s not going to get better. The medication and side effects are bad enough without all the crap they pile on top.
Sean Ryan
98 Brockley Grove London SE4 1EQ
07482 988 316
8 May 2017
When I turned around to look at something, that’s when my life changed forever. Something as simple as moving my head triggered a series of events that where to have a huge effect on me as a person and my way of life.
My eyes where the first things to go. They stopped behaving as they should. The right stuck in the corner. “That’s not right” I thought, and the next morning trotted off to the optician at the top of the road. He took one look and immediately phoned King’s College Hospital and told me to get there as soon as I could. Luckily for me it’s only a couple of stops on the train from where I live. About twenty minutes later I was seen by a doctor and admitted.
“We have to run some tests” I was told. Two days later I was told it could be MS. At the time I joked about it saying “Does that mean I have to stop shopping at Sainsbury's?”. it wasn’t until I got home and read through all the leaflets that the reality started to sink in.
Let me tell you I never expected to be treated the way I have. There are two stories here.
The NHS and the DWP. The National Health Service has supported me and been as helpful as they possibly can, from the doctors and nurses at my local surgery to the specialists and everyone at King’s. I have a specialist nurse who talks me through every procedure. And I cannot praise all of them enough for the work they do.
MS (or Multiple Sclerosis), is a serious progressive disease of the central nervous system, occurring mainly in young adults, and thought to be caused by a malfunction of the immune system. There is currently no cure. It’s a scary thing to have and, as it says on the tin, is progressively getting worse.
The DWP, on the other hand, is a completely different kettle of fish. The moment you walk through the door of the Job Centre you are made to feel as uncomfortable as possible. You are surrounded by security guards asking if they can help you. “No, I would like to speak privately to someone about my disability”. “You don’t look disabled to me” I am told. Security guards are now fully trained physicians, apparently.
Once upon a time disabled people used to be seen on the ground floor. Makes sense really. Now it’s on the third floor. “Is there a lift?” I ask one of the doctors dressed as a guard. “Yes, but you have to be accompanied, you can’t use it on your own”. The last time that happened was in the library when I was 12 - you couldn’t use the lift unaccompanied until you were 16. I'm 53 in a couple of months.
Eventually I get up there to meet someone clearly not interested as she was being laid off in a couple of days. I was told to come back three months later. This went on for many months until eventually they sent me to A4E, the work related program. Once there you are no longer on the unemployment register thus making the figures look good. You get the idea. Whilst there you are told to do between twenty minutes and an hour of job searches before being allowed to collect your travel fares to get home with.
After six months of that I had enough and signed up to a place called ‘Free to Learn’. This was to get a free fork lift license. Three months later, clutching my many NVQs, I left there with every intention of getting a job in a warehouse somewhere.
Back to the Job Centre. This time meeting someone on my side who couldn’t have been more helpful. She informed me then that for the past two and a half years their records had been incorrect and I was suffering with depression not MS. “You should be in the support group”. Great. Two and half years wasted.
Now, pardon me for being rude, but this is where things go tits-up or ‘FUBAR’, as the Americans call it. This is where you are introduced to a thing called ATOS. This is the organisation tasked by the Government to assess peoples’ disabilities to determine if they are entitled to what is now called PIP (Personal Independence Payment). This is to replace disability living allowance.
You receive a letter in the post and are told to report to one of their assessment centres. So off I went to Balham. As soon as you walk out of the station you are being watched. If you manage to cross the road unaided and walk through the door you are fit to work, according to them. This is before they even say a word to you. Next you receive another letter turning you down and explaining the appeal procedure. What they don’t tell you is that you then wait for over a year to get an appeal date.
After filling out what seems like a telephone directory-size form of stupid questions you sit and wait, being paid the bare minimum to survive. For that year you become a recluse. You don’t have money to go out and see friends anymore and if you’re not careful, fall into a deep depression. You’re not really living anymore, you’re surviving. If you don’t have a strong network of friends around you, you think about killing yourself a lot.
Finally, you get your appeal date after many months of mental torture. In less than an hour it’s all over and the trained professionals who should be doing the assessments and making the decisions agree with you. MS is a ‘serious permanent degenerative disease’. A quick tip for ATOS here: Ask Google.
So, after many months, it’s all over. They pay you all the money they owe you and you think to yourself: The End.
How wrong you are.
A year later they want another assessment. This time Deptford.
Turned down again.
Appeal again.
Win again.
That was 2015, and here we are, two years later, and guess what? They want another one.
Am I missing something here? I don’t know how many people heard or saw the Victoria Derbyshire Show only last week where the minister responsible for all of this said these wonderful words. Here is the full transcript of the exchange:
Victoria Derbyshire: "There are plenty (of people) who are still being reassessed with permanent degenerative conditions”
Richard Graham: "Yes, some conditions do degenerate, some stabilise, occasionally some do get better. It's a mixed situation"
VD: "Which permanent degenerative condition gets better?”
RG: "Victoria, I'm not going to try and get into an argument about specific conditions here"
VD: "It's not an argument. You just said some get better and I'm asking you which permanent degenerative conditions get better?"
RG: "Let's get back to the overall facts…"
VD: "Is that because there isn't a permanent degenerative condition that gets better? Quote, unquote."
RG: "They key thing about PIP is that actually more people are getting the top level and more of them are getting help with mobility, more of them are getting help with their daily allowance than used to be the case with DLA (Disability Living Allowance).
So there you go. if the people who are supposedly in charge don’t know, how are the people at ATOS supposed to? I can’t help but think it’s called that because they don’t give a-tos[s].
The whole system is designed to make you give up. And to make the unemployment figures look good. That’s only my opinion, but there are other people who are struggling through and still alive. Believe me, many have given up and killed themselves. If you asked them they would have similar stories.
The mobility scheme, set up to give people their independence back, has just been scrapped. People are having their cars taken away. The Conservatives want the NHS privatised. One of my medications is £1000 a box. How is that going to work?
If you are disabled and need help where do you go? Who do you talk to? I will never give in.
I used to have a great life and that all stopped five years ago. A system that wrecks peoples’ lives and is designed to make you give up is not the medication needed when you've just been diagnosed with something that’s not going to get better. The medication and side effects are bad enough without all the crap they pile on top.
Sean Ryan
98 Brockley Grove London SE4 1EQ
07482 988 316
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