People send me their stories a lot. Some are fragile, some angry, some frightened, some defiant. But they all deserve to be heard. Today, Vanessa sent me her story. If any of you would like to add your voice to this blog, remember, alone we whisper, together we shout.
If you are healthy imagine this for a moment?
Stick a 5lb bag around each limb, add a tornique around one leg and an alternate arm. Dont forget to tie a band around your head and pull it really tight so it stops you concentrating at times. During the day feel free to put borrow your nans glasses and do some shopping. Oh and must not forget the final ingredient.. do all this after being awake for 40 hours!
I know this analogy is true because I was healthy once. I can compare
I worked up to 16 hours some days in my yrs as a delivery driver, I would load up my van at 6am, deliver my van by teatime. then collect back onto my van and empty it at the end it the day. All single handed.
At any delivery I might have a drop of 20 x 5kg boxes of paper up 3 flights of stairs, I did this for yrs.
I used to also work for a lighting company and had to climb onto cranes in helicopter hangers to change the bulbs! Or re-lamp the whole of Tesco's in an afternoon (the days of fluorescents!)
I was exhausted to the point of collapse some days. I remember it. But I also remember it got better after a good nights sleep. The feeling of MS fatigue is much the same, but it doesn't get better and comes on with something as simple as one household chore
So the point of the Atos assessment is what I can do? I can do most things but with the above. Does this mean Im just weak willed and can work really?
How do I explain to you that even though I can do it, I cant? I can only just manage my life. If I have to work I wont be able to live.
I dream I can, I hope of a cure, I want to follow my dreams, I want to carry on learning and contributing but I cant because my illness stops me,
Its a medically diagnosed neurological condition that has no cure, it is also degenerative so until a cure is found I wont get better. Why does that not void me from your test? can I have MS and be a cheat? really?
I know how the witches felt on their ducking stools now..Will I float or sink?
My mental health is affected and I can see how anyone with MH issues feels so frightened. This isnt assessment it is judgement.
What is the point in me living now, I am no longer allowed quality of life because I'm too sick to work and I have to appease all who view and judge my disability levels for the rest of my life? ? god forbid I should get on a rollercoaster ! Or find pleasure in a hobby like baking because then I might be deemed fit for work, or appear in the DM as a cheat!
The worst battle for me in all of this is my mental one.. Am I weak? Is it me not trying hard enough? I carry so much guilt about my failure as a human being to overcome my illness and be the person I am as if without it. As society seems to expect of me.
Since when was it morally decent for someone who has never spent even a day in a wheelchair decide that to be able to propel yourself you are not mobility hindered?
So when you ask me at the assessment Can I lift a jug of water? I want to answer that it is an irrelevant question and in noway an indication of the fact that I cant peel more than 3 potatoes with out going into spasm and therefore pretty useless! it applauds the fact I can raise a jug!
I would rather stand in-front of a judge and jury (or Mr Jay) and plead my reasons for not answering Atos questions than answer the questions in the first place?
And my other little rant is.. If I am under the eyes of the law 'disabled' (and I am because I had to prove I was in order to claim when I was sacked for incapability at work rather than letting me reduce my hours) why is someone else deciding my disability?
I also have no convictions of fraud and can pass an enhanced police check so why treat me like I am lying about my condition when I have the back up of medical science?
Monday, 18 June 2012
Wednesday, 18 January 2012
Elaines story #spartacusreport #spartacusstories
"I don't think I said what
the significance of the water in the bucket from the leaking roof was,
there wasn't a damp patch around it so I was very lucky it just leaked
that much...smiles Today I have been to anti-coagulant clinic and I am
very tired. I am also about to eat the baguette pizza, I nearly burnt
my hand, just stopped myself from picking up the tray fresh out of the
oven bare handed. I need to remember also to take my warfarin, which I
forget too often causing more clinic visits and less energy for my plan
to get batter and sort my immune system out, which has suffered after
the initial steroids attack on it through years of ongoing malnutrition
and added stress on top of other distress and stress from the DWP,
Atos and the JobCentre. I wrote this earlier to my MP, while I was
waiting for hospital transport to knock any minute. They were an hour
early today. So an extra hour in hospital I would have loved to spend
waiting for them instead!
I won my tribunal in March of last year after wrongly being declared fit for work in June 2009. I did mean to inform you at the time but life gets complicated at times. It took me a while to stop having flashbacks of all the trauma of the assessment process every day and every night as other serious concerns overshadowed it. When the ESA50 came through in October I got CAB to fill it in. They came to visit on the 4th November, the day after my heating system was condemned until made good and on the 5th I was in hospital due to living in fumes of an unserviced boiler and no funds to fix or service it. I was treated for suspected pulmonary embolism and now attend the anti-coagulant clinic usually twice a week. I have no heating apart from an electric heater until Nest install a new heating system, which was okayed in September. The ESA50 was due in on 15th November but I have heard nothing back yet. I have learnt to live with the uncertainty of my having funds to live on as well as grave difficulty in surviving ill health and unsuitable housing that as a home owner I am unable to get fixed by the council or do myself. I am fully expecting to be declared fit for work again even though I am in a far more untenable position to.
I have been informed that if the time limiting goes through I will no longer be entitled to ESA from April. I felt it makes the assessment process rather arbitrary and simply a further attack on my well being. I think you voted in favour of these reforms didn't you? How I will live then I have no idea. I already pay over half my mortgage interest due to the cuts to interest payments, £100 interest, £40.90 policy, both monthly, less than £20 a week from DWP*. I live in an uncertain future where it seems the government has absolutely no care if I live and would prefer if I died, as I am worth less than nothing due to being ill and unable to work. I am also held back from recovery with added stress and restrictive poverty.
That as my in brief individual story is not unusual, it is widespread in the devastation that the reforms are putting people through who are already stretched to their limits by their health.
I am writing to you now to bring this report to your attention and update you as to how this is personally affecting me. This report into Disability Allowance Reform has been written, researched and funded by disabled people. As one of your constituents, I am very concerned by its findings and the misrepresentation of disabled people that it exposes. Please will you read the report and support sick and disabled people in calling for a pause to Personal Independence Payments in light of this new research. I look forward to your response, http://www.ekklesia.co.uk/files/response_to_proposed_dla_reforms.pdf
MOV01850[1].MP4 Monday 9th January 2012"
* Monday 16th January 2012
My mortgage company rang me today about an extra £1 and a debt of 26p or something. They rang as I got back from this weeks clinic, I got confused. But, I did ask them how much the DWP pays and it is £79.76 every 4 weeks. I get £188.50 every 2 weeks ESA and £78.20 every 4 weeks DLA lowest care component. CAB talked about reapplying as I obviously (to them) should be on a higher rate. Seeing as my mobility is more impaired more often than it was when I got the full rate mobility I tend to agree but I couldn't deal with that and the tribunal at the same time. Renewal should be pretty soon.
(pause to get calculator)
If I add them up, the mortgage payments ~ £19.94 a week , ESA £94.25 a week & DLA £19.55 a week = £133.74 a week.
Mortgage (before the extra £1, including what they pay, I nearly forgot that) £52.54
Electric and gas £145 per calendar month £33.46 a week
So far I have £47.74 left...
Water £7.79 a week...
£39.95 left for frivolities like phone, food, transport...
You may guess it already isn't enough to live comfortably, if/when it is cut further....
I said I no longer have as many flashbacks but it is still on my mind far too often. The other night I put my socks on in bed, it wasn't as hard an activity as it can be but harder than most healthy people would find it, there are times it takes me an hour to put my socks on and regain composure, not always through difficulty breathing, not always through abject pain, sometimes due to sheer fatigue, sometimes a mixture of all those things. I consider what they ignore as barriers for fitness for work every time an activity is harder or easier. It is a psychological warfare on conscientious people, intended as so or not.
I would prefer the dignity of being able to wash and dress myself often enough so that I don't smell so often, be able to keep my house clean and maintained, be able to make use of my talents to sell my art and crafts, eat regularly, go for a walk, not need a wheelchair and hospital transport for clinic or the clinic itself. That is the way life is, I value the help I do get for all its inadequacies and I value my life. I value the lives of others in better or worse situations.
I said back in 2008 that we could do this and create more taxpayers, strengthen the economy for all. I felt the Jobcentre needs to be shown trade description laws, the only support from my Employment Support Allowance is the actual £94.25 a week. There could be a drive for training and implementing more practical and emotional care and support within the system. If I were actually supported I may not still be as ill as I am now, I may not have been subjected to fumes for so long.
Tuesday. Just been reading the pips descriptors, there are many times I can't walk 50 metres without it being life threatening and times when I can. There are many times that making a simple meal is too much for me to do, even reheating a meal can be a challenge but I have never qualified for help for cooking and it seems I wouldn't qualify for mobility on pips either. The longest I was unable to bathe myself for in the last 2 months was about 11 days, that was quite uncomfortable, I really stank. The good news is I can bathe again at the moment without it being a danger to my life, just to my energy levels. Sometimes I despair of the whole thing.
*Edit!*
After posting this I went to my email to send the link if I can concentrate long enough on a practical thing, writing is often easier...I had a reply from my MP and as you may see by my reply although he is keeping an eye on what is happening there was much of the rhetoric being churned out by those putting these 'reforms' through.
Dear
Thank you for your reply.
If you would like a real picture of how DLA works maybe speak to your constituents who claim it? I first claimed it in 2004 and was turned down after a very distressing medical in my own home where the doctor appeared to look at me and my messy surroundings with contempt and didn't understand the peak flow chart I presented him with. The decision was that I could walk unlimited with normal gait and with no danger. I didn't appeal, the whole process had been demoralising and upsetting. However, a few weeks later an ambulance was called and I was admitted to hospital after trying to get back to my sofa after visiting the toilet. The anger got to me and I wrote a letter saying how wrong the decision was from my hospital bed. It was decided it would go to tribunal. I was awarded higher rate mobility for 2 years from the date I applied, nothing for help for preparing food which I still regularly have difficulty for days or weeks at a time. I reapplied and got a further year award for higher rate mobility. When it came time for renewal I was too overwhelmed to go through the forms and the process again. My family had broken down by that point and I struggled to find hope or self worth.
Everyone I know who has claimed it has at some point gone through the tribunal process, I do not know anyone who has been given a lifetime award. If the assessments are anything like the ESA ones they will still be not going to the right people. When friends who had realised I qualified encouraged me to apply, they warned me I would be turned down and would have to appeal, that it is common knowledge, that is how it goes, as a matter of fact. I know people who have progressively got worse and have DLA cut. I've experienced it myself. The system needs improving not making even more difficult to get help through. I don't know if you realise how distressing it is to have to admit to oneself how little one can do and how debilitated one is. To write out all these details time and time again and have them dismissed. I apologise if I am irritating, it can be uncomfortable to read the words of a distressed person.
I applied again in 2008. I was turned down again I was overwhelmed and upset. I was struggling to come to terms with the way life was so curtailed. I was close to suicide and was having increased episodes of severe panic attacks. I wrote a poem about it and an angry letter to DLA which was taken as appeal and without it going to tribunal I was awarded the lowest rate of the care component for needing someone with me when I go to new places. It was ignored that I had malnutrition and mobility difficulties. I was too tired and too defeated to challenge it.
Forgive me if I don't trust the DWP, Atos or the government to implement a fair a decent working system, it is a system that needs to be improved not cut. There is not a good social care system, it is getting worse and as the man who assessed me in 2010 said I fall through the cracks as they have widened as my conditions got worse. He was concerned about my malnutrition but powerless to provide a support worker, which may have actually helped me sort my heating out so I hadn't been living in fumes for well over a year. I certainly don't trust the minister against disabled Maria Miller. The report may have had less people in it but it is still valid. Who knows maybe both reports are somewhat biased and the truth is somewhere between them but what is clear is that the report from DWP does not speak for disabled people nor does Maria Miller and others who vilify and add to the media assault against disabled, which makes us feel under constant threat. It is honestly worse than the PTSD after rape and more perverse in its infiltration into the feeling of none safety. I am working on this to attempt to stay stable and striving to recover so I may one day be able to earn my own living. Also that I may be able to do something about my living conditions. I have things going mouldy underneath my bed and rain coming in through my roof. I don't know if there is anything you can do to help my cause there?
The term, 'those who need it most' would that be only people who can't survive without someone doing everything for them but those who can barely exist don't count? That is how I feel and many more I know who are struggling daily to stay fed, warm and alive.
I don't know if you are aware but *x* stayed with us when she came back from *x*. I know you helped her and *x* who worked for you then with some of the difficulties they faced. I know they spoke very highly of you, which gave me the confidence to reach out to you. I am sure you appreciate that it is a very difficult thing to do, especially after being knocked back so many times.
Kind regards
Elaine.
I won my tribunal in March of last year after wrongly being declared fit for work in June 2009. I did mean to inform you at the time but life gets complicated at times. It took me a while to stop having flashbacks of all the trauma of the assessment process every day and every night as other serious concerns overshadowed it. When the ESA50 came through in October I got CAB to fill it in. They came to visit on the 4th November, the day after my heating system was condemned until made good and on the 5th I was in hospital due to living in fumes of an unserviced boiler and no funds to fix or service it. I was treated for suspected pulmonary embolism and now attend the anti-coagulant clinic usually twice a week. I have no heating apart from an electric heater until Nest install a new heating system, which was okayed in September. The ESA50 was due in on 15th November but I have heard nothing back yet. I have learnt to live with the uncertainty of my having funds to live on as well as grave difficulty in surviving ill health and unsuitable housing that as a home owner I am unable to get fixed by the council or do myself. I am fully expecting to be declared fit for work again even though I am in a far more untenable position to.
I have been informed that if the time limiting goes through I will no longer be entitled to ESA from April. I felt it makes the assessment process rather arbitrary and simply a further attack on my well being. I think you voted in favour of these reforms didn't you? How I will live then I have no idea. I already pay over half my mortgage interest due to the cuts to interest payments, £100 interest, £40.90 policy, both monthly, less than £20 a week from DWP*. I live in an uncertain future where it seems the government has absolutely no care if I live and would prefer if I died, as I am worth less than nothing due to being ill and unable to work. I am also held back from recovery with added stress and restrictive poverty.
That as my in brief individual story is not unusual, it is widespread in the devastation that the reforms are putting people through who are already stretched to their limits by their health.
I am writing to you now to bring this report to your attention and update you as to how this is personally affecting me. This report into Disability Allowance Reform has been written, researched and funded by disabled people. As one of your constituents, I am very concerned by its findings and the misrepresentation of disabled people that it exposes. Please will you read the report and support sick and disabled people in calling for a pause to Personal Independence Payments in light of this new research. I look forward to your response, http://www.ekklesia.co.uk/files/response_to_proposed_dla_reforms.pdf
MOV01850[1].MP4 Monday 9th January 2012"
* Monday 16th January 2012
My mortgage company rang me today about an extra £1 and a debt of 26p or something. They rang as I got back from this weeks clinic, I got confused. But, I did ask them how much the DWP pays and it is £79.76 every 4 weeks. I get £188.50 every 2 weeks ESA and £78.20 every 4 weeks DLA lowest care component. CAB talked about reapplying as I obviously (to them) should be on a higher rate. Seeing as my mobility is more impaired more often than it was when I got the full rate mobility I tend to agree but I couldn't deal with that and the tribunal at the same time. Renewal should be pretty soon.
(pause to get calculator)
If I add them up, the mortgage payments ~ £19.94 a week , ESA £94.25 a week & DLA £19.55 a week = £133.74 a week.
Mortgage (before the extra £1, including what they pay, I nearly forgot that) £52.54
Electric and gas £145 per calendar month £33.46 a week
So far I have £47.74 left...
Water £7.79 a week...
£39.95 left for frivolities like phone, food, transport...
You may guess it already isn't enough to live comfortably, if/when it is cut further....
I said I no longer have as many flashbacks but it is still on my mind far too often. The other night I put my socks on in bed, it wasn't as hard an activity as it can be but harder than most healthy people would find it, there are times it takes me an hour to put my socks on and regain composure, not always through difficulty breathing, not always through abject pain, sometimes due to sheer fatigue, sometimes a mixture of all those things. I consider what they ignore as barriers for fitness for work every time an activity is harder or easier. It is a psychological warfare on conscientious people, intended as so or not.
I would prefer the dignity of being able to wash and dress myself often enough so that I don't smell so often, be able to keep my house clean and maintained, be able to make use of my talents to sell my art and crafts, eat regularly, go for a walk, not need a wheelchair and hospital transport for clinic or the clinic itself. That is the way life is, I value the help I do get for all its inadequacies and I value my life. I value the lives of others in better or worse situations.
I said back in 2008 that we could do this and create more taxpayers, strengthen the economy for all. I felt the Jobcentre needs to be shown trade description laws, the only support from my Employment Support Allowance is the actual £94.25 a week. There could be a drive for training and implementing more practical and emotional care and support within the system. If I were actually supported I may not still be as ill as I am now, I may not have been subjected to fumes for so long.
Tuesday. Just been reading the pips descriptors, there are many times I can't walk 50 metres without it being life threatening and times when I can. There are many times that making a simple meal is too much for me to do, even reheating a meal can be a challenge but I have never qualified for help for cooking and it seems I wouldn't qualify for mobility on pips either. The longest I was unable to bathe myself for in the last 2 months was about 11 days, that was quite uncomfortable, I really stank. The good news is I can bathe again at the moment without it being a danger to my life, just to my energy levels. Sometimes I despair of the whole thing.
*Edit!*
After posting this I went to my email to send the link if I can concentrate long enough on a practical thing, writing is often easier...I had a reply from my MP and as you may see by my reply although he is keeping an eye on what is happening there was much of the rhetoric being churned out by those putting these 'reforms' through.
Dear
Thank you for your reply.
If you would like a real picture of how DLA works maybe speak to your constituents who claim it? I first claimed it in 2004 and was turned down after a very distressing medical in my own home where the doctor appeared to look at me and my messy surroundings with contempt and didn't understand the peak flow chart I presented him with. The decision was that I could walk unlimited with normal gait and with no danger. I didn't appeal, the whole process had been demoralising and upsetting. However, a few weeks later an ambulance was called and I was admitted to hospital after trying to get back to my sofa after visiting the toilet. The anger got to me and I wrote a letter saying how wrong the decision was from my hospital bed. It was decided it would go to tribunal. I was awarded higher rate mobility for 2 years from the date I applied, nothing for help for preparing food which I still regularly have difficulty for days or weeks at a time. I reapplied and got a further year award for higher rate mobility. When it came time for renewal I was too overwhelmed to go through the forms and the process again. My family had broken down by that point and I struggled to find hope or self worth.
Everyone I know who has claimed it has at some point gone through the tribunal process, I do not know anyone who has been given a lifetime award. If the assessments are anything like the ESA ones they will still be not going to the right people. When friends who had realised I qualified encouraged me to apply, they warned me I would be turned down and would have to appeal, that it is common knowledge, that is how it goes, as a matter of fact. I know people who have progressively got worse and have DLA cut. I've experienced it myself. The system needs improving not making even more difficult to get help through. I don't know if you realise how distressing it is to have to admit to oneself how little one can do and how debilitated one is. To write out all these details time and time again and have them dismissed. I apologise if I am irritating, it can be uncomfortable to read the words of a distressed person.
I applied again in 2008. I was turned down again I was overwhelmed and upset. I was struggling to come to terms with the way life was so curtailed. I was close to suicide and was having increased episodes of severe panic attacks. I wrote a poem about it and an angry letter to DLA which was taken as appeal and without it going to tribunal I was awarded the lowest rate of the care component for needing someone with me when I go to new places. It was ignored that I had malnutrition and mobility difficulties. I was too tired and too defeated to challenge it.
Forgive me if I don't trust the DWP, Atos or the government to implement a fair a decent working system, it is a system that needs to be improved not cut. There is not a good social care system, it is getting worse and as the man who assessed me in 2010 said I fall through the cracks as they have widened as my conditions got worse. He was concerned about my malnutrition but powerless to provide a support worker, which may have actually helped me sort my heating out so I hadn't been living in fumes for well over a year. I certainly don't trust the minister against disabled Maria Miller. The report may have had less people in it but it is still valid. Who knows maybe both reports are somewhat biased and the truth is somewhere between them but what is clear is that the report from DWP does not speak for disabled people nor does Maria Miller and others who vilify and add to the media assault against disabled, which makes us feel under constant threat. It is honestly worse than the PTSD after rape and more perverse in its infiltration into the feeling of none safety. I am working on this to attempt to stay stable and striving to recover so I may one day be able to earn my own living. Also that I may be able to do something about my living conditions. I have things going mouldy underneath my bed and rain coming in through my roof. I don't know if there is anything you can do to help my cause there?
The term, 'those who need it most' would that be only people who can't survive without someone doing everything for them but those who can barely exist don't count? That is how I feel and many more I know who are struggling daily to stay fed, warm and alive.
I don't know if you are aware but *x* stayed with us when she came back from *x*. I know you helped her and *x* who worked for you then with some of the difficulties they faced. I know they spoke very highly of you, which gave me the confidence to reach out to you. I am sure you appreciate that it is a very difficult thing to do, especially after being knocked back so many times.
Kind regards
Elaine.
Kirk's story #spartacusreport #spartacusstories
-------------------------------------------------------------------------------
I am another one lucky enough not to be in a terribly bad way, yet bad enough that working is not possible or at least very unlikely. I had always been a competent and capable person in work and sport. I was accustomed to succeeding in anything I chose to do and at work had risen to quite a high level. Approaching the age of 50 though work stress started taking a toll and I became psychotic which led me to become suicidal. A friend had recently started treatment for cancer but he drank himself to death before the cancer got him. This seemed an easy way to go so I started drinking with a grim determination. Within 2 years I was close to succeeding but was persuaded to visit some friends for a break who made me go to see a GP and was booked in to a hospital.
I had to temporarily stop drinking and found I was no longer committed to killing myself so I stopped drinking completely and started getting better. 6 months later I had an attack of encephalopathy which is when fluid builds up in the brain and puts pressure on it. This the brain does not appreciate and some brain damage is inevitable.
The problem with having a damaged brain is the person affected does not feel as if there is anything wrong. I know that 1 year ago I was convinced I was thinking completely rationally yet when I look back at some of the plans I was making they were completely unattainable. Now I think I am perfectly normal but how can I be sure when I thought I was normal 5 years ago and I now know I was as crazy as a very crazy man indeed. Even when I was hearing voices I made what I thought at the time were perfectly rational explanations.
The encephalopathy resulted in short term amnesia and long term locomotor ataxia, poor attention span, poor sense of balance and chronically poor memory. I also find it very difficult to deal with stressful situations and avoid speaking to strangers on the telephone if at all possible. My friends all complain that I don't answer the phone and I normally manage to forget to take my mobile if I leave the house.
I used to be quite well off but when I got ill I spent all my savings. It never occurred to me to claim unemployment benefit until I was discharged from hospital. I was asked where I was going to live and I answered I did not know as I did not have any money. The CAB and local council helped me out for which I am very grateful. Now I live very simply and am quite happy.
My ESA and DLA claims were or course turned down after I had seen the ATOS doctor who scored me 0 and he thought I might get a job as a 'Red Driving School' instructor. He was not in the slightest concerned that I could only get down onto and up from my knees with the use of a chair and had not yet relearned how to write with cursive script but could only use block capitals. My CAB representative filled in the appeal forms ( I was incapable of doing it myself ) and luckily having been in hospital for 3 weeks I had no dignity left so didn't mind answering all those personal questions truthfully. I won the ESA appeal and was awarded Lower Rate Mobility on the DLA appeal although my CAB representative was disappointed I was not given the Higher Rate Mobility.
I still fall over most days, sometimes several times a day but normally at home where I fall against a wall, chair or bed so do not hurt myself. I have only had one bad fall outside when I had to go to the A&E. Of course I am worried about 2013 when I am due for a review and I am still unsure what being in the work related group for ESA will actually mean for me.
I am, of course, Spartacus
I am another one lucky enough not to be in a terribly bad way, yet bad enough that working is not possible or at least very unlikely. I had always been a competent and capable person in work and sport. I was accustomed to succeeding in anything I chose to do and at work had risen to quite a high level. Approaching the age of 50 though work stress started taking a toll and I became psychotic which led me to become suicidal. A friend had recently started treatment for cancer but he drank himself to death before the cancer got him. This seemed an easy way to go so I started drinking with a grim determination. Within 2 years I was close to succeeding but was persuaded to visit some friends for a break who made me go to see a GP and was booked in to a hospital.
I had to temporarily stop drinking and found I was no longer committed to killing myself so I stopped drinking completely and started getting better. 6 months later I had an attack of encephalopathy which is when fluid builds up in the brain and puts pressure on it. This the brain does not appreciate and some brain damage is inevitable.
The problem with having a damaged brain is the person affected does not feel as if there is anything wrong. I know that 1 year ago I was convinced I was thinking completely rationally yet when I look back at some of the plans I was making they were completely unattainable. Now I think I am perfectly normal but how can I be sure when I thought I was normal 5 years ago and I now know I was as crazy as a very crazy man indeed. Even when I was hearing voices I made what I thought at the time were perfectly rational explanations.
The encephalopathy resulted in short term amnesia and long term locomotor ataxia, poor attention span, poor sense of balance and chronically poor memory. I also find it very difficult to deal with stressful situations and avoid speaking to strangers on the telephone if at all possible. My friends all complain that I don't answer the phone and I normally manage to forget to take my mobile if I leave the house.
I used to be quite well off but when I got ill I spent all my savings. It never occurred to me to claim unemployment benefit until I was discharged from hospital. I was asked where I was going to live and I answered I did not know as I did not have any money. The CAB and local council helped me out for which I am very grateful. Now I live very simply and am quite happy.
My ESA and DLA claims were or course turned down after I had seen the ATOS doctor who scored me 0 and he thought I might get a job as a 'Red Driving School' instructor. He was not in the slightest concerned that I could only get down onto and up from my knees with the use of a chair and had not yet relearned how to write with cursive script but could only use block capitals. My CAB representative filled in the appeal forms ( I was incapable of doing it myself ) and luckily having been in hospital for 3 weeks I had no dignity left so didn't mind answering all those personal questions truthfully. I won the ESA appeal and was awarded Lower Rate Mobility on the DLA appeal although my CAB representative was disappointed I was not given the Higher Rate Mobility.
I still fall over most days, sometimes several times a day but normally at home where I fall against a wall, chair or bed so do not hurt myself. I have only had one bad fall outside when I had to go to the A&E. Of course I am worried about 2013 when I am due for a review and I am still unsure what being in the work related group for ESA will actually mean for me.
I am, of course, Spartacus
Rose's story #spartacusreport #spartacusstories
I don’t have a blog, in fact truth be told I’m only now really taking
part in Social Networking and finding it amazing. So bare with me for
my part in #spartacusstories.
I am a Polio Survivor, I was 18mths at the time. There are more Polio Survivor’s than there are people suffering with Parkinson’s Disease. During our rehabilitation we were given Physio to strengthen weakend muscles, with the aim of discarding crutches/sticks/calliper’s and wheelchairs wherever possible. We all worked hard, many like myself at age 16yrs were discharged from NHS with no ‘aids’ and told to go out and get on with it, forget your ever had Polio.
I did this, joined the workforce age 16, got married in my 20’s, had 3 children, continued to work throughout.
I applied for DLA the first time about 12yrs ago, I was refused the first application. Despite knowing myself that my condition was deteriorating, it was another 2yrs before I re-applied, this time with the help of a friend who was also a WRO, she also had an aunt who was a Polio Survivor so fully understood that things were getting worse. I have now been in receipt of DLA for 10yrs, this is used to pay for a car, which I was dependant on then but am even more dependent on now. I was given it ‘indefinitely’ which I believe replaced the ‘for life’ award.
If I lose my DLA I will lose my independence, something I have fought for everyday for the past 50yrs. I will be trapped at home as walking any distance will bring on fatigue,brain fog, pain; public transport is also pretty useless because by the time I get where I need to go I am totally exhausted. Hospital appointments would take a 2 bus trip, but I can get there in 20mins by car avoiding much of the exhaustion and pain.
Polio has always been recognised as a neurological disease, but what many of us with polio know and many in the medical profession still have trouble knowing, is that many years after getting polio, something can trigger a condition very similar to ME or Chronic Fatigue Syndrome or even Fibromyalgia and includes the worst of those conditions including general fatigue, brain fog, memory problems etc.
It is known as Post Polio Sequelae or Syndrome. (PPS) On top of that, parts of the body that were apparently unaffected by the original polio, in my case your arms and other parts of your body, are now much weaker and attracting osteo-arthritis and getting worse every year
Can I just state, for the record, I am 52yrs old, I contracted Polio 1961, unusual but not unheard of, I was not fully immunised at the time. There are a few of us who are of ‘working age’ some will be migrating from IB to ESA. Me, I had to give up work 18mths ago as I could no longer cope, even though Access to Work had implemented all the aids they could for me. My ESA(CB) has run out and I have just been through WCA to see if I am ‘fit for work’ I am awaiting the results at this time.
As a community Polio’s have kept themselves pretty ‘closed off’, only speaking to other survivors for fear of ridicule and bullying which, sadly, happened a lot, especially to those of us in wheelchairs, using callipers/sticks etc. I feel that I have to speak out now, no-one else seems to be. As I have already said there are more than a few of us of ‘working age’, we have worked, we are now reaching a point when it is the body that is ‘giving up’ due to the overuse/misuse during our time we had our ‘normal’ lives. We are now having to accept the fact that we are disabled, the fact that was ‘drummed’ out of us as children that we were not and in fact ‘lucky’ we survived. It’s very hard to watch myself slip away like this, it’s the same for other’s. Myself and a couple of other’s have joined this campaign because we thought it was right, a real effort was made on our part to encourage other members of our community, did we succeed ? I have no idea as there was no response to our posting on forums/facebook/twitter.
So there you have it, it has taken me 3 days to write this down, it’s been an emotional rollercoaster, I am still coming to terms with what I am discovering is going wrong with me.
I am a Polio Survivor, I was 18mths at the time. There are more Polio Survivor’s than there are people suffering with Parkinson’s Disease. During our rehabilitation we were given Physio to strengthen weakend muscles, with the aim of discarding crutches/sticks/calliper’s and wheelchairs wherever possible. We all worked hard, many like myself at age 16yrs were discharged from NHS with no ‘aids’ and told to go out and get on with it, forget your ever had Polio.
I did this, joined the workforce age 16, got married in my 20’s, had 3 children, continued to work throughout.
I applied for DLA the first time about 12yrs ago, I was refused the first application. Despite knowing myself that my condition was deteriorating, it was another 2yrs before I re-applied, this time with the help of a friend who was also a WRO, she also had an aunt who was a Polio Survivor so fully understood that things were getting worse. I have now been in receipt of DLA for 10yrs, this is used to pay for a car, which I was dependant on then but am even more dependent on now. I was given it ‘indefinitely’ which I believe replaced the ‘for life’ award.
If I lose my DLA I will lose my independence, something I have fought for everyday for the past 50yrs. I will be trapped at home as walking any distance will bring on fatigue,brain fog, pain; public transport is also pretty useless because by the time I get where I need to go I am totally exhausted. Hospital appointments would take a 2 bus trip, but I can get there in 20mins by car avoiding much of the exhaustion and pain.
Polio has always been recognised as a neurological disease, but what many of us with polio know and many in the medical profession still have trouble knowing, is that many years after getting polio, something can trigger a condition very similar to ME or Chronic Fatigue Syndrome or even Fibromyalgia and includes the worst of those conditions including general fatigue, brain fog, memory problems etc.
It is known as Post Polio Sequelae or Syndrome. (PPS) On top of that, parts of the body that were apparently unaffected by the original polio, in my case your arms and other parts of your body, are now much weaker and attracting osteo-arthritis and getting worse every year
Can I just state, for the record, I am 52yrs old, I contracted Polio 1961, unusual but not unheard of, I was not fully immunised at the time. There are a few of us who are of ‘working age’ some will be migrating from IB to ESA. Me, I had to give up work 18mths ago as I could no longer cope, even though Access to Work had implemented all the aids they could for me. My ESA(CB) has run out and I have just been through WCA to see if I am ‘fit for work’ I am awaiting the results at this time.
As a community Polio’s have kept themselves pretty ‘closed off’, only speaking to other survivors for fear of ridicule and bullying which, sadly, happened a lot, especially to those of us in wheelchairs, using callipers/sticks etc. I feel that I have to speak out now, no-one else seems to be. As I have already said there are more than a few of us of ‘working age’, we have worked, we are now reaching a point when it is the body that is ‘giving up’ due to the overuse/misuse during our time we had our ‘normal’ lives. We are now having to accept the fact that we are disabled, the fact that was ‘drummed’ out of us as children that we were not and in fact ‘lucky’ we survived. It’s very hard to watch myself slip away like this, it’s the same for other’s. Myself and a couple of other’s have joined this campaign because we thought it was right, a real effort was made on our part to encourage other members of our community, did we succeed ? I have no idea as there was no response to our posting on forums/facebook/twitter.
So there you have it, it has taken me 3 days to write this down, it’s been an emotional rollercoaster, I am still coming to terms with what I am discovering is going wrong with me.
Tuesday, 17 January 2012
Steves story #spartacusreport #spartacusstories
I made a claim for DLA 6 years ago. This was based on my 32 years of agoraphobia .... now severe. My claim was totally dismissed by the DWP (simply by ignoring what my GP wrote and stating that I was okay) and after three unsuccessful attempts I appealed in 2008. When they first totally rejected my application I started to believe that the DWP must know what they are talking about, so maybe I was okay ... then I realised they had employed inexperienced people who knew nothing about disability (but were probably on targets to achieve refusals) or were lying.
The first stage of my appeal was a 'medical examination'. What a farce! I met a retired GP who knew nothing about agoraphobia, who spent a long time telling me about his career, asked me (an Honours Graduate) stupid questions such as who the Prime Minister was, did some arm wrestling and knee-jerks reactions (for agoraphobia?????) and reported to the DWP that I was okay because I was not scared when there was the sound of drilling from the next room! I cannot understand how a man of such low-intelligence became a GP but I can fully understand why the DWP employed him as a 'refusals man'. And I realised that he had a very nice retirement job and could not afford to lose it and the huge sum of money he no doubt 'earned' by allowing too many claims; he had to refuse most to retain his job, I assume. The system was designed to minimise the number of successful medicals.
I then appealed and went to a Tribunal. Literally a FEW minutes before I entered the Tribunal the representative for the DWP told the Tribunal that she had to leave on urgent business but that the DWP conceded I should be awarded DLA. So for three years they rejected me by telling lies but when faced with having to explain themselves in front of intelligent members of the Tribunal, they could lie no more. And could not face me either.
The whole process was a sham, with the sole intention of preventing me (and others, of course) from being awarded DLA. The Tribunal awarded me Mobility allowance (which I had claimed) and also Care allowance (which I had not claimed) and gave both indefinitely. I think they added the Care Allowance to demonstrate to the DWP that my case was serious and that the DWP's stupidy had resulted in a higher figure being paid out than if they had accepted my genuine and modest claim in the first place.
I had assumed I would never have
to go through that ordeal again but it now seems I will. And they will
make life Hell for those who dare to claim.
But I note that no similar ordeal has to be experienced by the bankers who caused the financial problems and have since been awarded billions in bonuses.
But I note that no similar ordeal has to be experienced by the bankers who caused the financial problems and have since been awarded billions in bonuses.
The ill, weak, vulnerable,
elderly and disabled (not friends of the Tories) need to stick together
to avoid being down-trodden by the government's desire to punish them
for the transgressions of the wealthy (the friends of the Tories).
Julie's story #spartacusreport #spartacusstories
Hello, here's our story to publish if it's any use to you:
My son was diagnosed with autism when he was two years old. At that point, he was only able to eat custard, because it was both yellow and smooth. He couldn't tolerate anything touching his lips, so I had to carefully feed him his drinks on a tea-spoon. Meal-times took between two and three hours.
He couldn't stand in queues, so going shopping was a nightmare. As a single-parent I had no choice but to take him with me. He would lie down on the floor and sweep his arms and legs around. That kept him calm, but if there wasn't any room for him to do that he'd have a melt-down, screaming and crying. I lost count of the number of times I was accused of being a bad mother by members of the public. Our local post-office banned us from the premises - when I tried to explain he was autistic they didn't believe me.
At bed-time everything in his room had to be just so, or he'd have a melt-down and be unable to sleep. The curtains had to be open two feet apart, no more and no less. All the drawers had to be shut tight. Each and every toy had to be in the right box and each box had to be in the right place. Several times I woke up in the night to him screaming like he was being murdered - but it was because his shoes were the wrong way round on the floor.
He was terrified of showers and couldn't cope with sitting down in the bath. He counted drains in the street obsessively, amongst other things. He was terrified of drills, sirens, and other loud noises. He was also frightened of dogs, other animals and insects. He had no sense of danger and struggled to communicate with others, especially children.
As he's gotten older, with the help of some fantastic teachers and therapists, things have improved. He eats and drinks normally, comes shopping, sits down in the bath and his room is a tip like any other child's his age. He's even in mainstream school now, and, with help, is doing well.
But he can't go outside on his own. He tells complete strangers his name, age, address and other personal details, not understanding why that's dangerous. He thinks the staff in the supermarket are his very good friends because they speak nicely to him.
He walks out in front of cars, 'performing' looking both ways rather than actually doing it. He's still so terrified of dogs and flies that he leaps out into the traffic to avoid them - I've pulled him out the way of an oncoming car more than once.
He's been attacked several times in the play park by kids who don't know he's autistic and think he's 'weird'. Since he moved to mainstream school he's had ongoing problems with bullies.
He needs a carer, and while he continues to get DLA, that carer is me. If the government's plans go ahead and we lose the DLA, we'll also lose my Carer's Allowance and our Income Support. I'll be moved onto Job Seeker's Allowance and will have to take the first job that comes up - even though there's no child-care.
The last time I was at the Job Centre (I have to attend Work Focused Interviews) I asked my advisor if there was any suitable child-care at all that she knew of, because I'd like to get off benefits and at least work part-time if I can. Yes, she said, there's lots! Then she pulled out her big file, opened it up and found...nothing.
My son is due to have his DLA reassessed this year. The doctor says he still needs it and will support our application. With the government's cuts though, who knows what's going to happen to us? I'm waiting in terror for that big brown envelope to come through the door.
My son was diagnosed with autism when he was two years old. At that point, he was only able to eat custard, because it was both yellow and smooth. He couldn't tolerate anything touching his lips, so I had to carefully feed him his drinks on a tea-spoon. Meal-times took between two and three hours.
He couldn't stand in queues, so going shopping was a nightmare. As a single-parent I had no choice but to take him with me. He would lie down on the floor and sweep his arms and legs around. That kept him calm, but if there wasn't any room for him to do that he'd have a melt-down, screaming and crying. I lost count of the number of times I was accused of being a bad mother by members of the public. Our local post-office banned us from the premises - when I tried to explain he was autistic they didn't believe me.
At bed-time everything in his room had to be just so, or he'd have a melt-down and be unable to sleep. The curtains had to be open two feet apart, no more and no less. All the drawers had to be shut tight. Each and every toy had to be in the right box and each box had to be in the right place. Several times I woke up in the night to him screaming like he was being murdered - but it was because his shoes were the wrong way round on the floor.
He was terrified of showers and couldn't cope with sitting down in the bath. He counted drains in the street obsessively, amongst other things. He was terrified of drills, sirens, and other loud noises. He was also frightened of dogs, other animals and insects. He had no sense of danger and struggled to communicate with others, especially children.
As he's gotten older, with the help of some fantastic teachers and therapists, things have improved. He eats and drinks normally, comes shopping, sits down in the bath and his room is a tip like any other child's his age. He's even in mainstream school now, and, with help, is doing well.
But he can't go outside on his own. He tells complete strangers his name, age, address and other personal details, not understanding why that's dangerous. He thinks the staff in the supermarket are his very good friends because they speak nicely to him.
He walks out in front of cars, 'performing' looking both ways rather than actually doing it. He's still so terrified of dogs and flies that he leaps out into the traffic to avoid them - I've pulled him out the way of an oncoming car more than once.
He's been attacked several times in the play park by kids who don't know he's autistic and think he's 'weird'. Since he moved to mainstream school he's had ongoing problems with bullies.
He needs a carer, and while he continues to get DLA, that carer is me. If the government's plans go ahead and we lose the DLA, we'll also lose my Carer's Allowance and our Income Support. I'll be moved onto Job Seeker's Allowance and will have to take the first job that comes up - even though there's no child-care.
The last time I was at the Job Centre (I have to attend Work Focused Interviews) I asked my advisor if there was any suitable child-care at all that she knew of, because I'd like to get off benefits and at least work part-time if I can. Yes, she said, there's lots! Then she pulled out her big file, opened it up and found...nothing.
My son is due to have his DLA reassessed this year. The doctor says he still needs it and will support our application. With the government's cuts though, who knows what's going to happen to us? I'm waiting in terror for that big brown envelope to come through the door.
Carol's Story #spartacusreport #spartacusstories
I am a Mam, Gran-ma, Sister, Friend, Mischief maker, Auntie
and a whole host of things ( even a tw@t at times) I am 55 years old, though to
be honest Ive never really grown up, and thats the way that I like it. Right,
thats the meet and greets done, OH , hang on , I forgot to say this also, I am
disabled and I am most certainly Spartacus.
I was born disabled , with club foot in both feet ( the posh name being Bi-lateral Talipes ) and with one leg shorter than the other ( allthough now , the dispute now , is which leg is the shorter as Ive lost at least an inch in height ( sorry I still do old English measurements, except strangley for drill bits where metric does just as well).
I wnt to school throughout the 60s and early 70s bumbling along as you do and getting by. I got married and had two gorgeous kids, best thing I ever did. I stayed at home to look after them , and went back into education, to get study for a degree, to improve my employability ( I graduated in 2000 ) Throughout that time I recieved no state support of any kind, then I applied for the relatively new benefit called DLA ( introduced by the Conservatives) I was granted HRM because of my mobility issues , but not granted and personal care, and was even turned down at two other applications, so I left well alone, and generally bumbled along in life, trying to find work, and either being told that I was far too qualified, or didnt have any experience. Ho, hum.
Anyhow, I joined a cardmaking forum, oh maybe 5 years ago ( bear with me people the good bit is coming honestly) and made plans to visit a friend in Hull for a few days. So off I went to meet my friend. Everything went well, I was due to come home on the Tuesday ( 7th April) , so we went as my friend put it " Strolling along Hessle Road ". . . . . .
BANG - Down I went. My foot had caught the footplate of an oncoming chair being pushed by the incumbents carer. I had steped sideways to let them pass. My walking stick went heaven knows where, and Im lying outside a pharmacy in Hessle Rd, experiencing the most excruciating pain ( apart from the day I had my children, sorry kids).
The ambulance was called. I was xrayed, examined and admitted to Hull Royal Imfirmary (btw, I live 192 miles away from Hull in Cumbria) . Doped up to the eyeballs, to try and stop the pain, a Doctor came to the bed and explained that I had fractured my left neck a femur ( or as my friends say snapped her hip) and it would need at the very least 2 large Thomson screws to keep the bones together . ( oh and my friend ? The one I visited - She worked in the damn hospital !!)
My mobilty ? HAHAHAHAHAHAHAHAHA! My personal care ? Has gone to rat-crap. I now cannot walk down the stairs as I used to. I have to walk one step at a time. It takes me twice as long to get dressed. I cannot take my own boots off, by meself , I need help. Im cannot safely carry my Grand-baby ( and that hurts a lot). I use crutches, sticks and have an NHS tank, that has probably blown my left shoulder. I cannot do any of the things I used to do outside , and I live in one of the most beautiful parts of the country. My medication ? The side effects are amongst other things incontinence and unexplained diarohhea, and it can and takes you be surprise. You cannot stop it. ( The afforementioned tasks etc is just a miniscule amount of what I can no longer do)
I now get HRM and HRC . Maria Miller and the powers that be, want to take that away from me. They brand me a criminal, they tell lies about my compatriates and friends, what did we do , except survive ? And what for ? To be vilified, and harrased and deemed scum . Now, before oh gentle reader, you say " No, not in this day and age" I am sorry to say that the answer is " YES SADLY " and the main protagonists are the very people we would hope that would make the rules to keep us safe.
Thanks for reading, I do witter on, however remeber this I AM SPARTACUS ONE OF MANY.
Much Love Robomam aka Mewsli aka Carole
I was born disabled , with club foot in both feet ( the posh name being Bi-lateral Talipes ) and with one leg shorter than the other ( allthough now , the dispute now , is which leg is the shorter as Ive lost at least an inch in height ( sorry I still do old English measurements, except strangley for drill bits where metric does just as well).
I wnt to school throughout the 60s and early 70s bumbling along as you do and getting by. I got married and had two gorgeous kids, best thing I ever did. I stayed at home to look after them , and went back into education, to get study for a degree, to improve my employability ( I graduated in 2000 ) Throughout that time I recieved no state support of any kind, then I applied for the relatively new benefit called DLA ( introduced by the Conservatives) I was granted HRM because of my mobility issues , but not granted and personal care, and was even turned down at two other applications, so I left well alone, and generally bumbled along in life, trying to find work, and either being told that I was far too qualified, or didnt have any experience. Ho, hum.
Anyhow, I joined a cardmaking forum, oh maybe 5 years ago ( bear with me people the good bit is coming honestly) and made plans to visit a friend in Hull for a few days. So off I went to meet my friend. Everything went well, I was due to come home on the Tuesday ( 7th April) , so we went as my friend put it " Strolling along Hessle Road ". . . . . .
BANG - Down I went. My foot had caught the footplate of an oncoming chair being pushed by the incumbents carer. I had steped sideways to let them pass. My walking stick went heaven knows where, and Im lying outside a pharmacy in Hessle Rd, experiencing the most excruciating pain ( apart from the day I had my children, sorry kids).
The ambulance was called. I was xrayed, examined and admitted to Hull Royal Imfirmary (btw, I live 192 miles away from Hull in Cumbria) . Doped up to the eyeballs, to try and stop the pain, a Doctor came to the bed and explained that I had fractured my left neck a femur ( or as my friends say snapped her hip) and it would need at the very least 2 large Thomson screws to keep the bones together . ( oh and my friend ? The one I visited - She worked in the damn hospital !!)
My mobilty ? HAHAHAHAHAHAHAHAHA! My personal care ? Has gone to rat-crap. I now cannot walk down the stairs as I used to. I have to walk one step at a time. It takes me twice as long to get dressed. I cannot take my own boots off, by meself , I need help. Im cannot safely carry my Grand-baby ( and that hurts a lot). I use crutches, sticks and have an NHS tank, that has probably blown my left shoulder. I cannot do any of the things I used to do outside , and I live in one of the most beautiful parts of the country. My medication ? The side effects are amongst other things incontinence and unexplained diarohhea, and it can and takes you be surprise. You cannot stop it. ( The afforementioned tasks etc is just a miniscule amount of what I can no longer do)
I now get HRM and HRC . Maria Miller and the powers that be, want to take that away from me. They brand me a criminal, they tell lies about my compatriates and friends, what did we do , except survive ? And what for ? To be vilified, and harrased and deemed scum . Now, before oh gentle reader, you say " No, not in this day and age" I am sorry to say that the answer is " YES SADLY " and the main protagonists are the very people we would hope that would make the rules to keep us safe.
Thanks for reading, I do witter on, however remeber this I AM SPARTACUS ONE OF MANY.
Much Love Robomam aka Mewsli aka Carole
Marks Story #spartacusreport #spartacusstories
A Personal Story
I’ve never
before described my disability. I consider my problems to be much less
disabling than those of the truly courageous campaigners that produced
“Responsible Reform” (otherwise known as The
Spartacus Report). But that’s what we do as disabled people; we try
so hard to get on with our lives despite the pain and frustration, commonly
saying “of course I’m grateful that my problems are nothing like as bad as
those endured by X, or Y or Z”. It is a form of stoicism or maybe denial, but
it’s part of that mental armoury that gives us our determination and optimism,
even when we are in pain and we have to wait another 3 hours for our next dose
of analgesia.
For years (since my 30s) I’d battled with painful joints. Initially mainly my neck hurt, but I was told it was down to bad posture. 10 years and masses of physio/osteopathy and painkillers later, after a battle with a totally unsympathetic GP, I had an MRI scan. Well, well severe osteoarthritis resulting in bony spurs that were pressing on the nerves exiting the spinal column.
I continued to manage this into my 50s. However a whiplash injury had aggravated it considerably and I was struggling with the fine movements in my right hand. This was crucial to my work as a nurse as it was making it impossible to draw up injections. I was forced to take ill health retirement following a long battle with my employer. Subsequently I have had considerable deterioration in knee and ankle joints and lumbar vertebrae, due, apparently, to the years I had kept fit by running!
Trainers that absorb the shock hardly existed 30 years ago.
The painkillers hardly have any effect! I can no longer use low dose amitriptyline or anti-inflammatories because of either the cardiac risk or gastric bleeding, which is a shame as they were remarkably effective.
I have seen a remarkable, lovely, pain relief pain consultant who has tried everything in his considerable armoury including quite scary nerve blocks which have failed to work.
All I want is to be able to walk a hundred yards without pain or get downstairs in the morning without the use of a walking stick.
I can only imagine what an unbroken, pain-free night’s sleep must be like.
I would love to be able to cook fresh food pain-free and not have to rely on the disgusting slop that is microwave meals.
For this I receive DLA Low Rate Care but I’d much rather be able to cook, and walk to the pub!
For years (since my 30s) I’d battled with painful joints. Initially mainly my neck hurt, but I was told it was down to bad posture. 10 years and masses of physio/osteopathy and painkillers later, after a battle with a totally unsympathetic GP, I had an MRI scan. Well, well severe osteoarthritis resulting in bony spurs that were pressing on the nerves exiting the spinal column.
I continued to manage this into my 50s. However a whiplash injury had aggravated it considerably and I was struggling with the fine movements in my right hand. This was crucial to my work as a nurse as it was making it impossible to draw up injections. I was forced to take ill health retirement following a long battle with my employer. Subsequently I have had considerable deterioration in knee and ankle joints and lumbar vertebrae, due, apparently, to the years I had kept fit by running!
Trainers that absorb the shock hardly existed 30 years ago.
The painkillers hardly have any effect! I can no longer use low dose amitriptyline or anti-inflammatories because of either the cardiac risk or gastric bleeding, which is a shame as they were remarkably effective.
I have seen a remarkable, lovely, pain relief pain consultant who has tried everything in his considerable armoury including quite scary nerve blocks which have failed to work.
All I want is to be able to walk a hundred yards without pain or get downstairs in the morning without the use of a walking stick.
I can only imagine what an unbroken, pain-free night’s sleep must be like.
I would love to be able to cook fresh food pain-free and not have to rely on the disgusting slop that is microwave meals.
For this I receive DLA Low Rate Care but I’d much rather be able to cook, and walk to the pub!
Dombeds Spartacus Story #spartacusreport #spartacusstories
I am Dombed and I would like to ask for the reform of
Disability Living Allowance into the Personal Independance Payment to be
paused. The government need to get this right and at the moment its looks like
they aren't, and if you read on I will explain why.
It was just after my daughters 2nd birthday that it was noticed that something was wrong. She was put on multiple waiting lists and Autism Spectrum Disorder was indicated as the prime candidate, and we were told that we should claim for DLA for her. I duly rang up and asked for a form, filled it out and sent it back. That was the beginning.
After not hearing anything for 2 months I contacted the DWP, to be told that they had decided her claim almost 2 months ago - after having the claim form for less than 24 hours - but had not sent my a decision letter. They had turned her claim down as she was 'too young' to have extra care needs. I appealed as I did not agree - she could not communicate, had self-injurous behaviours like PICA and a lack of sense of danger that meant she had to be closely supervised the entire time she was awake, which is sometimes more than 20 hours at a time, which is a very long time to be hyper-vigilant. She is totally exhausting, as much as I love her. As far as I am concerned that is way above that that you would expect with a 2 year old. You normally get to do housework, you don't have to remove foreign objects from their mouths or rescue them from shelves 6 feet off the ground 30 times a day. You don't have to have stairgates that are 5 feet tall in order to get any sleep at night.
We sat and waited and waited. I was doing my best to juggle caring for her, my disabled partner, our other child and work full time. It got the point that I was made very ill by all the stress and had a large amount of time off work, and in the end I had to temporarily reduce my hours at work because there were just not enough hours in the day. Eventually we got an appeal date which was 14 months after the date of the claim - the problems with ESA and the Work Capability Assessment have had a large knock on effect on all benefit appeals.
At the tribunal they also felt my daughter was 'too young', but the chairperson instructed me to apply again immediately because they (the tribunal) would not turn the claim down again, even if the DWP did. At that point I was very close to giving up completely - the thought that we would win and finally be able to balance our family life was the one thing that kept me going for that year - it was the light at the end of the tunnel. More forms were ordered that day though, and filled in by our Speech and Language Therapist (who got quite indignant and sweary about the claim not being allowed).
This time they took several weeks over the claim. It was a very nervous few weeks. In the end they finally awarded her DLA - with care needs the same as they were a year before. All in all it took 16 months. 16 months to get assistance.
Now we have DLA for her we have been able to arrange life so it fits everything, and we also have a formal diagnosis of Autism Spectrum Disorder and developmental delay. Because the DLA passports to extra allowances of Tax Credits and Housing Benefit I have been able to reach a permanant agreement with my employer over my hours. I can still work and I can now fullfill my side of the contract, whereas before I could not due to my caring responsibilities and was risking disciplinary action. Her DLA has helped with things like her nappies (as she is unable to be potty trained), clothes and shoes (due to her behavioural problems she goes through them really quick) and sensory equipment and toys to try to help her to reach her full potential. In the future I am envisaging using it to buy her a special buggy, as at nearly 4 years old she is too big for a normal one, but there are times when she just will not walk.
If we were to lose her DLA at her reassessment (in 2013) we would be in severe dire straits. We would lose the passport allowances which means we would not be able to make ends meet - we would have to start deciding whether to eat or to pay the bills and rent., because eventhough I do not earn enough to live on, its too much to claim most means-tested benefits. And if PIP is brought in I feel there is a very real danger of that happening. PIP is missing some assessment criteria that is currently in DLA, which is needing supervision to prevent harm to yourself and to others. The removal of this criteria is of massive importance to my daughter, and many claimants with Autism, because its an area that people with Autism often have trouble with. Autism is not alone in this - brain injuries and things like premature dementia can also cause people to need supervision to keep themselves safe. Removal of this criteria will lead to people having their DLA withdrawn, eventhough their care needs have not changed, and the people affected will be some of the ones least equipped to cope with an appeal or loss of income.
My daughters Autism Spectrum Disorder also does not lend itself well to a face-to-face assessment. There is no way 20 minutes in an office with a doctor, who may or may not have any knowledge of Autism, will be able to verify the diagnosis, let alone her care needs.
This type of assessment is totally inappropriate for Autism. Its a called a spectrum disorder for a reason, and its a very broad spectrum. No two people with autism will present with the same characteristics - some will speak while others are non-verbal, some will stim others won't, some will avoid eye contact others won't. Unless the health professional has considerable indepth knowlegde of all aspects of Autism and all the characteristics that may or may not be present they WILL NOT be able to make any judgement on the level of impairment an Autistic individual has. For example, if you ask my daughter the 'right' questions she can fool you into thinking she can communicate. If the health professional did not ask her the same question 5 times they would not notice they fact she uses the same intonation every time - that it is a learned response to that question and that question alone, and she cannot answer if its phrased slightly differently because she has not learned how. The chances of her exhibiting her self-injurous behaviours or stimming during the 20 minute snap-shot are not favourable either. A face-to-face assessment will be inaffective at helping the decision process at best and at worst, very damaging to a persons claim.
Her own health professionals (all of which are very experienced) have, and will continue to, provide accurate evidence of her impairments to the DWP decision makers, and they are far better placed to than anyome else.
Please pause the reform to PIP before massive hamrful mistakes can be made.
Dombed
It was just after my daughters 2nd birthday that it was noticed that something was wrong. She was put on multiple waiting lists and Autism Spectrum Disorder was indicated as the prime candidate, and we were told that we should claim for DLA for her. I duly rang up and asked for a form, filled it out and sent it back. That was the beginning.
After not hearing anything for 2 months I contacted the DWP, to be told that they had decided her claim almost 2 months ago - after having the claim form for less than 24 hours - but had not sent my a decision letter. They had turned her claim down as she was 'too young' to have extra care needs. I appealed as I did not agree - she could not communicate, had self-injurous behaviours like PICA and a lack of sense of danger that meant she had to be closely supervised the entire time she was awake, which is sometimes more than 20 hours at a time, which is a very long time to be hyper-vigilant. She is totally exhausting, as much as I love her. As far as I am concerned that is way above that that you would expect with a 2 year old. You normally get to do housework, you don't have to remove foreign objects from their mouths or rescue them from shelves 6 feet off the ground 30 times a day. You don't have to have stairgates that are 5 feet tall in order to get any sleep at night.
We sat and waited and waited. I was doing my best to juggle caring for her, my disabled partner, our other child and work full time. It got the point that I was made very ill by all the stress and had a large amount of time off work, and in the end I had to temporarily reduce my hours at work because there were just not enough hours in the day. Eventually we got an appeal date which was 14 months after the date of the claim - the problems with ESA and the Work Capability Assessment have had a large knock on effect on all benefit appeals.
At the tribunal they also felt my daughter was 'too young', but the chairperson instructed me to apply again immediately because they (the tribunal) would not turn the claim down again, even if the DWP did. At that point I was very close to giving up completely - the thought that we would win and finally be able to balance our family life was the one thing that kept me going for that year - it was the light at the end of the tunnel. More forms were ordered that day though, and filled in by our Speech and Language Therapist (who got quite indignant and sweary about the claim not being allowed).
This time they took several weeks over the claim. It was a very nervous few weeks. In the end they finally awarded her DLA - with care needs the same as they were a year before. All in all it took 16 months. 16 months to get assistance.
Now we have DLA for her we have been able to arrange life so it fits everything, and we also have a formal diagnosis of Autism Spectrum Disorder and developmental delay. Because the DLA passports to extra allowances of Tax Credits and Housing Benefit I have been able to reach a permanant agreement with my employer over my hours. I can still work and I can now fullfill my side of the contract, whereas before I could not due to my caring responsibilities and was risking disciplinary action. Her DLA has helped with things like her nappies (as she is unable to be potty trained), clothes and shoes (due to her behavioural problems she goes through them really quick) and sensory equipment and toys to try to help her to reach her full potential. In the future I am envisaging using it to buy her a special buggy, as at nearly 4 years old she is too big for a normal one, but there are times when she just will not walk.
If we were to lose her DLA at her reassessment (in 2013) we would be in severe dire straits. We would lose the passport allowances which means we would not be able to make ends meet - we would have to start deciding whether to eat or to pay the bills and rent., because eventhough I do not earn enough to live on, its too much to claim most means-tested benefits. And if PIP is brought in I feel there is a very real danger of that happening. PIP is missing some assessment criteria that is currently in DLA, which is needing supervision to prevent harm to yourself and to others. The removal of this criteria is of massive importance to my daughter, and many claimants with Autism, because its an area that people with Autism often have trouble with. Autism is not alone in this - brain injuries and things like premature dementia can also cause people to need supervision to keep themselves safe. Removal of this criteria will lead to people having their DLA withdrawn, eventhough their care needs have not changed, and the people affected will be some of the ones least equipped to cope with an appeal or loss of income.
My daughters Autism Spectrum Disorder also does not lend itself well to a face-to-face assessment. There is no way 20 minutes in an office with a doctor, who may or may not have any knowledge of Autism, will be able to verify the diagnosis, let alone her care needs.
This type of assessment is totally inappropriate for Autism. Its a called a spectrum disorder for a reason, and its a very broad spectrum. No two people with autism will present with the same characteristics - some will speak while others are non-verbal, some will stim others won't, some will avoid eye contact others won't. Unless the health professional has considerable indepth knowlegde of all aspects of Autism and all the characteristics that may or may not be present they WILL NOT be able to make any judgement on the level of impairment an Autistic individual has. For example, if you ask my daughter the 'right' questions she can fool you into thinking she can communicate. If the health professional did not ask her the same question 5 times they would not notice they fact she uses the same intonation every time - that it is a learned response to that question and that question alone, and she cannot answer if its phrased slightly differently because she has not learned how. The chances of her exhibiting her self-injurous behaviours or stimming during the 20 minute snap-shot are not favourable either. A face-to-face assessment will be inaffective at helping the decision process at best and at worst, very damaging to a persons claim.
Her own health professionals (all of which are very experienced) have, and will continue to, provide accurate evidence of her impairments to the DWP decision makers, and they are far better placed to than anyome else.
Please pause the reform to PIP before massive hamrful mistakes can be made.
Dombed
Janes story #spartacusreport #spartacusstories
The first
time I claimed DLA, I was so damaged by the process and upset by the refusal, I
just did not have the courage to go on, and it was my sister who finally encouraged
me to reapply. Even then, it had to go to appeal before I got an award,
and that was below what I felt I was eligible for under the current
legislation. But, when you are ill, and bearing in mind how the whole
process had impacted on me, making me much more unwell to the point of being
beddbound, I could not bear to take it further. Be thankful for small
mercies.
That award was for two years. It had taken a year to get through the process, so the following year I had to reapply. I filled in a long, long form with all the gory details of my disabilities, and was called to a medical at the same place ATOS do their WCA assessments. This time the award was 'indefinite' - not lifetime, but until such a time as I improve or worsen, or the rules change, or they decide randomly to have another look at me.
Because I have very limited mobility, I saved up my DLA to buy a mobility scooter. I only have space to safely keep a very small, foldable one, and they are expensive, but it has meant I can get to the doctors and other appointments now without the damage to my health I used to suffer before I got my travelscoot.
Because the NHS does not prescribe any useful medications for my condition, I also use my DLA to buy the supplements and medications that support my health to the point of being virtually self caring. Without these various pills and potions, I would be a lot sicker, as I am reminded every time I test this theory by doing without one or other element of my protocol.
There are other additional costs to being disabled, of course. As I am still virtually housebound and at home all day, my heating bills are higher, and as I rely on internet shopping, I don't get the bargains or the choices an able bodied person has, and then of course there are delivery charges. I have to rely on prepared food, which costs more. I do miss going to the shops!
I have a very strong feeling that the 20% reduction in spending that the transfer from DLA to PIP represents will be the greatest mistake in the long run, as disabled people no longer have the wherewithal to look after themselves by buying the help they need, and thus we become more disabled, and may well end up to going into care or hospital.
The government are making it sound like DLA is easy to get, and people who are not eligible are claiming successfully. I refute this. The fraud rate in DLA (by the DWP's own figures) is 0.5% - one half of one percent. That has to be one of the lowest rates of fraud ever, in any benefit. DLA works. It is well targeted. Changing to PIP will cost money in the reorganisation, and later, in increased bills to social care and the NHS.
That award was for two years. It had taken a year to get through the process, so the following year I had to reapply. I filled in a long, long form with all the gory details of my disabilities, and was called to a medical at the same place ATOS do their WCA assessments. This time the award was 'indefinite' - not lifetime, but until such a time as I improve or worsen, or the rules change, or they decide randomly to have another look at me.
Because I have very limited mobility, I saved up my DLA to buy a mobility scooter. I only have space to safely keep a very small, foldable one, and they are expensive, but it has meant I can get to the doctors and other appointments now without the damage to my health I used to suffer before I got my travelscoot.
Because the NHS does not prescribe any useful medications for my condition, I also use my DLA to buy the supplements and medications that support my health to the point of being virtually self caring. Without these various pills and potions, I would be a lot sicker, as I am reminded every time I test this theory by doing without one or other element of my protocol.
There are other additional costs to being disabled, of course. As I am still virtually housebound and at home all day, my heating bills are higher, and as I rely on internet shopping, I don't get the bargains or the choices an able bodied person has, and then of course there are delivery charges. I have to rely on prepared food, which costs more. I do miss going to the shops!
I have a very strong feeling that the 20% reduction in spending that the transfer from DLA to PIP represents will be the greatest mistake in the long run, as disabled people no longer have the wherewithal to look after themselves by buying the help they need, and thus we become more disabled, and may well end up to going into care or hospital.
The government are making it sound like DLA is easy to get, and people who are not eligible are claiming successfully. I refute this. The fraud rate in DLA (by the DWP's own figures) is 0.5% - one half of one percent. That has to be one of the lowest rates of fraud ever, in any benefit. DLA works. It is well targeted. Changing to PIP will cost money in the reorganisation, and later, in increased bills to social care and the NHS.
Sarahs story #spartacusreport #spartacusstories
MY SPARTACUS STORY (abridged)
I am writing this now because I have a physical disability
and am relying on DLA and soon probably other benefits too as I face the loss
of my job. I did however, have experience of the welfare system as a young
adult, and so have included my earlier experience of mental health problems. If
you wish to skip that part and go directly to my current circumstances, and
fears, then go straight to paragraph 6.
As a teenager I suffered from mental health problems. I
began self-harming at the age of 11 and by the age of 13 teachers, and
subsequently parents, found out. I was seen as an outpatient and given Prozac;
this gave me terrible panic attacks. I was admitted to an adolescent
psychiatric ward in January 1997 for 2months, where I was put on seroxat, no
panic attacks, but first ever suicide attempt followed soon after. I returned
to school, but the ridiculing at the hands of others at my difference and
unusual absence was too much to bear and I took an overdose not long after
being back. Not to mention, the school had not let me be part of normal lessons
contrary to what they had promised the hospital at the discharge meeting. After
this overdose I was unofficially expelled, just wiped off their records and
asked never to step foot on the premises again. The year book produced just
under 2years later lists ‘those who left us early’ and includes those expelled
for drug dealing, bulling and other atrocities, but none so serious as mental
health issues, for which I was inexplicably deleted from the memory of the
school.
In October of that year, now 14years old, I was readmitted to the same hospital for a 2week assessment. This two weeks became a year in total. In the February I was detained under the Mental Health Act on a Section3 (6months) due to repeated attempts to take my life. The next October, 1998, I was transferred to a secure unit, where it became apparent that this could easily be my life for the next few years unless I did something about it. I appealed against my section, and won, much to the dismay of the consultant who had said “You definitely won’t get off at this one or the next one, you could win an appeal at the one after that, but I wouldn’t support it” – they were 1year sections by that point too. So he had his idea of my life bagged up, secured up even, having met me for probably less than 3hours in total, for the next 3years. I was still very ill, but not as ill as those who sat alongside me in the smoking room. I had a supportive family, and a place to be looked after by loving parents, which is more than most the other patients had.
In October of that year, now 14years old, I was readmitted to the same hospital for a 2week assessment. This two weeks became a year in total. In the February I was detained under the Mental Health Act on a Section3 (6months) due to repeated attempts to take my life. The next October, 1998, I was transferred to a secure unit, where it became apparent that this could easily be my life for the next few years unless I did something about it. I appealed against my section, and won, much to the dismay of the consultant who had said “You definitely won’t get off at this one or the next one, you could win an appeal at the one after that, but I wouldn’t support it” – they were 1year sections by that point too. So he had his idea of my life bagged up, secured up even, having met me for probably less than 3hours in total, for the next 3years. I was still very ill, but not as ill as those who sat alongside me in the smoking room. I had a supportive family, and a place to be looked after by loving parents, which is more than most the other patients had.
I left the secure unit in May 1998, moved back in with my
parents, and attended a therapeutic community day centre. After 6months, I
moved in to a supported living hostel. Despite all the love and support my
parents gave me, I had become institutionalised and used to the structure
provided by anonymous staff rather than loving parents. I also wanted to live
in the town and not have to do the the 2hours bus journey every day to get to
the day centre from my parents village. Hear began my journey with the welfare
system. I put in a claim for income support, as I was still attending the
therapeutic community daily for 6hours, and so there was no way I could work.
As soon as I moved in to the hostel, I put in an application to the council for
accommodation as there was a 3year time limit on staying at the hostel so it
was standard procedure to apply as soon as you moved in. Due to my mental
health history, they put me in a high medical needs band and I got a flat of
‘my own’ within a few short months. By August 2000, a couple of months after
turning 18, I had moved out and in to totally independent living. I had
expected to be staying in the supported living hostel for at least 2years, so
it was a bit of a shock. I was still attending the therapeutic community daily,
still self-harming, still suicidal, battling an eating disorder, but doing
everything I could to get better and stay out of hospital. I was receiving DLA
by this point, it was, if I recall correctly, set at £200 a month & helped
me in my move to independence. In Sept 2001 I got a boyfriend, he wanted to
move in and as he was working, he couldn’t do this legally with me claiming
benefits. So after a while, I ditched everything and got a full time job, at a
nursing centre. Having not particularly worked before save for the odd pub
shift, I called up the benefits office, proudly declaring my intentions to work
and that I no longer needed their help. I lasted 3weeks in the job before
meltdown. I went crawling back to the benefits office, admitting defeat, asking
for help again but because my boyfriend was living with me, his earnings, of
about £10,000 a year, were considered enough for us both to live on. He
paid all the bills, rent etc. I lived on my DLA, trying to get over the
humiliation and set back I had put myself through of going in to work and
failing after such a short time. After a few months, I applied for a part time
job, just 2 days a week, I did this for a few months before the job became full
time. I was by no means ‘well’ at this point, there were still many incidents
of self-harm which remained secret from loved ones and employer alike. Such was
my determination to work and be part of what is considered normal and accepted
in society, that I managed to carry. Sometime during this period, my DLA was
turned down at renewal, I forget why but it was, and that was the end of my
journey with the benefit system for some time.
In 2003 I applied for a job working for a large public
sector organisation and was lucky enough, somehow, to be successful. During my
time working there, my mental health has been far from perfect. Up until 2005,
I was still having weekly therapy sessions with my key worker from the day
centre. In 2005, this service was shut down due to budget cuts at the Primary
Care Trust. A particularly serious attempt on my life followed, leaving me in a
coma for several days with the doctors unsure if I would wake up (I had two
weeks off work in total). After that, I could no longer cope with the job
I was doing (having been made redundant due to centralisation from the first
one) and I put in another claim for DLA, this was awarded for 1year.
Due to being awarded DLA, I could apply for a part time job
that came up in a department I had always wanted to work in, it kept me in work
and off full benefits, I was still paying all my rent, still paying tax and
national insurance, and still had the dignity of being in work. During that
year, I really took time for myself, I saw a brilliant psychiatrist who put me
on new medications being very forward thinking that he was. Most psychiatrists
in adult services see you ever 6months and prescribe medication, but no therapy
would be involved. I was lucky enough to get this lovely doctor on his 1year
rotation, his special interest by my diagnosis.
Being part time at work meant I could start new medications
on the days I wasn’t at work. Take one day a week to have therapy. One of the
medications had to be increased every two weeks due to the risk of a fatal rash
developing if it was increased too fast. Every time I increased it, I became
suicidal, I knew it was down to the medication but it didn’t make it feel any
less real at the time. I could time all this to not miss work, and to stay in
my part time job, having DLA enabled me to do that. After a year of working and
having time to finally stabilise things whilst being largely ‘out of the mental
health system’, I was ready to go full time and a position came up so I didn’t
attempt to renew the DLA, not feeling I needed it anymore, and along things
plodded, in stability and relative happiness. I got a boyfriend (the last
relationship ended in 2005) and we were so happy, and in love (and still are).
Then there was the fateful summer of 2010.
I woke up on July 9th 2010, one of the hottest days of that
year so far. I got out of bed and the room was spinning, I felt like I’d had
about 8pints of cider. I stumbled about, exclaiming to my boyfriend as I
staggered about how odd this feeling was. I put it down to the heat, but
feeling rather weak, got on a bus instead of cycle, and got the train to London
for a hen do. I stayed sober throughout, not drinking much at all, no longer
dizzy, but slightly not right still the same. I stayed at my friend’s house in
London, waking up to the phenomenon that is double vision, or diplopia as it
became on my medical notes, along with the room spinney dizziness that had
returned. I kept rubbing my eyes, blinking, assuming this would go away, that I
just hadn’t woken up properly yet. I walked about and waited, still no
improvement, laid back down, my two friends still fast asleep. Skip forward a
few days, couple of GP appointments, and a diagnosis of labyrinthitis, I was
told by a GP I needed to get to A&E, I was rather shocked at this
suggestion, A&E for an ear infection, surely not?! Anyhow, I managed to get
a lift to the hospital and waited together with my boyfriend for hours in the
waiting room. Eventually, they started mentioning brain scans, and I started
getting scared. All this time, however, I didn’t believe myself. All the years
of having mental illness, physical illness was always blamed on stress, or
something I’ve done to myself, I didn’t believe there could be anything really
wrong with me. It must be all in my head I thought. They did a CT scan, which
came back clear, and stuck me on a ward by about 4am, about 15hours since I’d
got there. The next days are all a bit of a blur, but the included the starting
of going numb down my left side, getting woken by severe stabbing pains in
between my shoulder blades, losing the ability to walk. I had a brain MRI
which showed lesions, patches of demyelination. I had no idea what this was,
but was told it was a one off, probably as a result of a gastric bug I had
picked up when I visited a friend in Ukraine a month before. After a week, I
was discharged, using two crutches for short distances and a wheelchair for
anything more, which was unavailable on the NHS so I went to the Red Cross who
loan them out on a temporary basis. Over the coming weeks, my walking gradually
improved, the feeling slowly returned and the pain in the shoulders eased. My
walking however did not improve completely, the sensation did not return to
normal sensation and the pain did not completely disappear. In September, I
returned to my job on reduced hours, where I continued to try and build them up
to get back to full time. By early November, I could walk probably over a mile,
I was back on my bike, I was going great guns. Still getting tired, still not
back to ‘normal’ but so much better. Then suddenly one day, I just couldn’t. I
had no idea why, nothing I could put my finger on as such, I just couldn’t walk
as far and could no longer balance on the bike. I had a follow up scan and a
neurologist appointment on 20th December, where they confirmed that I had new
lesions (oh so that’s what the suddenly being able to do less was) and gave me
the diagnosis of Relapse Remitting Multiple Sclerosis, and gave me some
steroids for the relapse.
In February 2011, I had another relapse, more steroids.
Still not over the first two, but was told that it can take up to 6months for
the healing to fully occur, but that after 6months any symptoms are permanent.
So that pain between my shoulders that stops me sitting on certain chairs,
sitting for too long? Yes, permanent. That seeing double on looking to the
left? Yes, permanent. That weird sensation down my left torso where I can’t
tell if something is hot or cold and it feels like I’ve been slathered in tiger
balm? Yes, permanent. Getting so tired I can’t do anything? Yes, permanent. I
was still not able to work full time, and considering my job was meant to be
covering a shift pattern and because of budget cuts the office was already
running at 25% less than it should be, I was worried I was going to lose my job
as it became apparent I wasn’t going to be relieved of the symptoms that were
stopping me being there, working full time and working shifts. I was there, but
not in my full capacity. I got in touch with a disability charity, who helped
me put in a claim for DLA which I was awarded for two years, until February
2013.
After another bout of steroids, and all the fun this brings
-side effects include sleeplessness, constipation, bitter taste, feeling like
you have a second skin, frequent urination. The side effects are okay though,
it’s the withdrawal symptoms where you feel like every joint is sprained, can’t
walk, can’t use crutches, just have to stay in bed for 2days until it passes. I
started daily injections of Disease Modifying Drugs (DMDs), to try and slow the
progression of the M.S. I got horrible site reactions, each one swelling up to
the size of the biggest mosquito bites I’ve ever had, itchy like crazy and hard
lumps, some of which still remain. The site reactions however, feel like
nothing to deal with compared to the possibilities of the alternatives.
Basically with DMDs for M.S, you initially have two choices, the Interferon’s
or Copaxone. I was directed to the M.S decisions website by the M.S nurse, and
my decision was based mainly on what I read on there, and other reputable
online sources. Interferon’s, although generally don’t give site reactions,
have the common side effect of having flu like symptoms for 24-48hours after
injecting. Depending on which interferon you go for, this is anything from one
to three times a week. Interferon’s are also not recommended for people with
a history of depression. I was, and still am, trying to desperately cling
on to my job, so for the stability that Copaxone felt it could provide by
comparison, I decided that daily injections and site reactions were much easier
to deal with than flu symptoms and depression.
So on 1st March 2011, I began Copaxone, full of hope that it
would stave off what appeared to be rather regular relapses. In July 2011,
another relapse hit, I also got very depressed. Was it a symptom of the
relapse, or a natural response to dealing with having been diagnosed with a
degenerative illness? Who knows, not me, but it was what it was. I stayed at
work, but just felt so bleak. In the September, I had a routine appointment
with the MS nurse, who wanted me to see the neurologist as things still hadn’t
improved, I informed him of some of my newer, more embarrassing symptoms (let’s
just say there were of the bowel) and he confirmed it was a relapse and gave
more steroids. Too early to consider Copaxone a treatment failure for him, and
too early for me to give up on it given the alternatives, we carried on with
it. I have expressed my fears of going on to an interferon to the neurologist
and to the MS nurse, that I would lose my job if I had to have more time off to
get used to it, and also my fears with depression. The flippant response has
always been “oh well, we’d just treat that”. They have no idea that it is not
that easy. They say they would monitor me, would they? Of course not. Unless,
by monitor, they mean carry on with the 3monthly appointments that I have now,
and leave it up to me to call if I feel depressed and if I do refer me to the
GP for some jolly old Prozac. Little do they know, I can’t take Prozac,
seroxat, citalopram, sertraline, venlafaxine, lofepramine, amitriptyline or
anything other tricyclic or SSRI. The only anti-depressant I’ve ever responded
to is moclobemide, one of the newer MAOI’s, with which, one can’t take any cold
& flu remedies, which if was to be on a drug which makes me feel I have flu
3times a week, ain’t gonna be much fun and ain’t gonna make for staying in a
job for very long. All of that aside, the flu, the depression, I could probably
cope with if it wasn’t for the fear of losing the job. I could also maybe cope
with the depression, if I had some kind of back up or offer of help from the
mental health services. Remember those budget cuts I mentioned from 2005? The
ripples are still being well and truly felt. After the bout of depression in
summer 2011 I asked my GP if there was any chance of getting some Cognitive
Behavioural Therapy, as I had responded well to a short course of that as a
young teen, and it is recommended for dealing with M.S. She referred me for an
assessment, which came up a blank. There is no mental health support for
someone who has a history of mental illness and is newly diagnosed with a
degenerative illness. I can cope with this, but understand it does make me
somewhat nervous to try a drug, or new situations, that might push me to the
point of not being able to cope.
Oh, yes, this is probably the point where I should explain a
bit about the job situation. After all that timing of the drugs, choosing the
DMD partly based on work, taking steroids so the withdrawal symptoms are at the
weekend, I am losing my job anyway, due to the centralisation of the office yet
again. As well as centralising, meaning a commute that I couldn’t manage, the
job itself is changing, meaning shifts I couldn’t manage. Even if I could get
there, the setup of the new office will be such that it would be too much back
ground noise for my poor concentration levels to cope with. The job itself
requires too much cognitive function which I feel I have lost. So my only
option is to ask for medical retirement, or redundancy. Obviously redundancy
would be a one off payment that might see me through 2months, 3 at a push, and
then I’d be stuck. So medical retirement and a pay-out of the pension I’ve been
paying in to for the last 8.5 years, seems like the best option, to keep the
metaphorical welfare wolf from the door as much as possible.
Once I found all this out, and it became apparent I was losing the only job I’ve ever felt safe working in, ever enjoyed, the environment I’ve known for the majority of my adult life, I was rather stressed, and as much as I tried not to be, I was. Thus, making symptoms worse. This, coupled with the death of a family friend (who sadly lost his battle with his own M.S journey), meant my being signed off for a month over Christmas. I was due to return this Monday, today, but sadly, after toiling away online last Tuesday, reading about the Spartacus report, and trying to do my bit, I’ve had another relapse and am on another course of steroids. This relapse bought fatigue like I’ve never experienced before (able to be awake for about 5hours a day if I did nothing), both legs buckling when I walk, head spinning, nausea.
Once I found all this out, and it became apparent I was losing the only job I’ve ever felt safe working in, ever enjoyed, the environment I’ve known for the majority of my adult life, I was rather stressed, and as much as I tried not to be, I was. Thus, making symptoms worse. This, coupled with the death of a family friend (who sadly lost his battle with his own M.S journey), meant my being signed off for a month over Christmas. I was due to return this Monday, today, but sadly, after toiling away online last Tuesday, reading about the Spartacus report, and trying to do my bit, I’ve had another relapse and am on another course of steroids. This relapse bought fatigue like I’ve never experienced before (able to be awake for about 5hours a day if I did nothing), both legs buckling when I walk, head spinning, nausea.
I am gutted I can’t go back to work; I want to go back not
just fade out. The office is moving at the end of April, so I have to be gone
by then anyway. I am filled with fear as to what I will do.
It seems the Copaxone is not working, so I need to consider interferon (Oh, did I mention, after interferon’s is another option a monthly infusion, which has the lovely side effect of sudden death), but if I take that, am I going to be able to hold down another job? Is a new employer, if I’m lucky enough to find one willing to take me on, really going to tolerate the level of sickness that taking an interferon could bring? So do I push for this change now, & try and be stable by the time I need a new job? Or do I not take the risk of depression in an already stressful time, and ask to jump straight to the one with sudden death as a risk?
It seems the Copaxone is not working, so I need to consider interferon (Oh, did I mention, after interferon’s is another option a monthly infusion, which has the lovely side effect of sudden death), but if I take that, am I going to be able to hold down another job? Is a new employer, if I’m lucky enough to find one willing to take me on, really going to tolerate the level of sickness that taking an interferon could bring? So do I push for this change now, & try and be stable by the time I need a new job? Or do I not take the risk of depression in an already stressful time, and ask to jump straight to the one with sudden death as a risk?
At the moment, I am still lucky enough to be being paid full
time, however obviously when I lose this job, I will look for a part time job,
as I just can’t manage full time. I can’t work enough to support myself, living
in the cheapest accommodation I can, a one bed council flat. I am not in a
mansion, I am not asking for the world. I am asking to be able to manage my
life in the best way I can, taking as little from the state as I can in the
process. DLA enables me to do this, without it, I'd be out of work altogether,
thus claiming housing benefit, council tax benefit, employment support
allowance, not paying income tax and not paying national insurance. Aside from
all that nonsensical ridiculousness of it all, I don’t want to be sat around
the house all day, my GP doesn’t want me to be sat around the house all day,
and this will do no good for my physical or mental health. I NEED DLA to be
able to work, to be able to pay income tax, national insurance, council tax and
rent. I NEED DLA to have my dignity, health and happiness. I could go in to the
ins and outs of what else DLA pays for, but I think that you should be able to
imagine that now, with the rather lengthy history I have provided, and after
all this isn’t a DLA application, it is a piece of writing from the heart. Needless
to say there are many other ways in which DLA helps me, but what can make more
sense than being able to stay in work, costing the state less and making a
contribution?
I am so scared for my future. To summarise the fears I feel
I face are, losing my job in April this year, hopefully getting medical
retirement, but this is a whole battle I have still to face. Once I am gone
from this job, I will look for part time work; I may or may not find an
employer willing to take on a disabled person with an erratic and unpredictable
illness. If I am lucky enough to find a new job and get settled, I then have
the DLA renewal to face early next year. With PIP being introduced in April
2013, I really can’t imagine a DLA renewal being awarded 2 months before. If this
is turned down, how do I live? I will have to quit the job I might have just
started settling in to. And when do I fit in the change of medication to all
this? The change of medication that isn’t to manage day to day symptoms, but
something that needs to be done to try and slow down the progression of this
beast that is M.S. Every month this is put off, is potentially a month taken
from my future. I am scared, I am scared of M.S, scared of not knowing how long
my body will hold out, scared of not knowing with each relapse what symptoms
will remain with me forever, scared of depression, scared of feeling suicidal,
scared of dying at my own hands, scared of dying of M.S, scared of how this is
affecting my loved ones. However more than all of those fears, I am scared of
David Cameron and his Welfare Reform Bill and the ability that one small group
of people with no experience of life on the bread line, has to make all the
things I, and millions of other disabled people and their carers, have to face
anyway, so much harder.
None of these things in my life can be helped, they are the
hand I was dealt and I don’t proportion any blame or expect special treatment
or sympathy because of it. But I do expect to be able to LIVE, ideally,
with some dignity, although in the current climate maybe dignity is just too
much to ask, but living? Surely not.
catherines story #spartacusreport #spartacusstories
Has enabled
me to be a proper mother to two children, both with physical or mental disabilities who have gone on to University and are now wage earners in their own right. Now I need my DLA just to keep alive and the house clean. My condition has got so bad that I can no longer walk due to breathlessness nor care for myself. Before all the 'disability bashing' started I regarded myself as an equal to people I mixed with. No I have no self esteem and am receiving psychiatric
treatment as well as a panoply of drugs and regular checks. My condition will eventually kill me. And I shall die feeling less than human, a creature, a burden, a sponger, not the pretty disabled young woman I used to be.
treatment as well as a panoply of drugs and regular checks. My condition will eventually kill me. And I shall die feeling less than human, a creature, a burden, a sponger, not the pretty disabled young woman I used to be.
Davids story #spartacusreport #spartacusstories
I don't get DLA, my walking difficulties mean I may well be eligible, but
after the ordeal that was my Work Capability Assessment for ESA, I simply
can't face putting myself through another assessment, and in fact I am
struggling with my ESA renewal for the same reason.
We hear ministers bleating that DLA is unassessed, and yes, a lot of people
are on lifetime awards, but really, when was the last time a missing limb
grew back? If DLA is unassessed, why do my friends who do receive it fear
their renewals so much? Might it be that certain ministers are being
conservative with the truth?
They tell us that PIP will have more rigorous assessments than DLA, let me
tell you about my ESA Work Capability Assessment, and you decide if that is
what you want to put DLA recipients through (and remember, unlike ESA which
is an out of work benefit, DLA recipients include children and pensioners).
I became unemployed just after ESA and the WCA were introduced, but
initially elected to claim JSA, in large part because of the stories already
coming out about the way the WCA system was failing disabled people. But ESA
wasn't that easy to avoid and it rapidly became clear that JCP were utterly
incapable of dealing with someone who was either disabled or highly
qualified, and god help you if you were both. The end result was a complaint
to ministerial level, abject apologies from JCP, and a request that I
transfer onto ESA.
My first WCA assessment was scheduled for May 6th, 2010 at the local ATOS
Assessment Centre, and what an ill-omened day that turned out to be! The
building is located in the centre of town and has no on-site disabled
parking, so is utterly unfit for purpose before you even get to the door.
There is a public disabled car park some 150m away, but that regularly
requires a wait of over 30 minutes to find a space in it and like many
disabled people I cannot walk even 50m without experiencing significant
pain. The next nearest disabled parking is 350m away. If you can manage to
get to the building access at the door is via intercom, so how someone deaf
and/or without speech is supposed to manage is a mystery. The DDA and the
Equality Act both require service providers to make provisions based on the
likely needs of their clientele, so a building whose entire clientele is
disabled should make a significantly greater degree of access provision than
most, yet the vast majority of ATOS assessment centres, even new ones, fail
to meet even the most basic standards of accessibility.
I had informed ATOS in advance via the ESA50 form that I would require
adjustable seating because of the difficulty in sitting that results from my
disability, which is in fact the core of my problems regarding working, so
pretty much fundamental to the whole assessment process. None had been
provided. The tattily-dressed individual who checked my ID led me into a
waiting room filled with cheap, non-adjustable seating completely
inappropriate to the needs of a client population containing a high
proportion of people with musculo-skeletal and pain and fatigue based
disorders. Within seconds of trying the seating I had realised that I was
completely unable to sit on it in any comfort, only by rolling sideways onto
my hip was I able to tolerate it at all. By the time I was called through,
something over 10 minutes later (despite apparently being the only client in
the building), I was in considerable distress, which only deepened when I
reached the examination room and found that the seating there was actually
worse. It was at this point that I discovered the tattily-dressed individual
was actually the doctor who was supposed to assess me, not the caretaker as
I had first assumed. I pointed out that I had told ATOS I needed an
adjustable seat and his reaction was 'Oh, you'll just have to book another
appointment'. He then admitted that this was not the first time this problem
had occurred, that they had asked for adjustable seating to be supplied and
that they had been told by their regional management to 'make do with what
you have'.
I returned home having wasted my time and experienced major amounts of pain
as a result. That pain triggered a massive flare-up in my condition and I
spent the following week on the floor of my bathroom as I was wracked by one
muscle-spasm after another, not knowing even what day it was. I eventually
managed to get to my GP, who doubled the strength of my opiate painkillers,
which brought the flare-up under control, but at the cost of my wandering
around in a daze for several months. The loss of control in this kind of
flare-up is extremely distressing both physically and mentally and I was
completely unable to deal with mail during this period, simply the thought
of a letter from ATOS or DWP being sufficient to send my pain levels
sky-rocketing. Ultimately it took me six months to completely catch up with
my mail, at which point I discovered a letter from ATOS dated a week after
my initial WCA date and calling me for another WCA a few days later, which
needless to say I had not attended, being barely conscious at the time.
In late-August 2010 I received a letter from DWP stating that my ESA
payments had been stopped, from the week before my initial appointment,
owing to my failure to attend the WCA. I called the office the letter had
originated with and the person I spoke to was perhaps the only DWP employee
ever to have impressed me with competence and common sense. She immediately
accepted my inability to attend a WCA I was not aware of and noted that ATOS
had made no mention of their failure to provide a required reasonable
adjustment, but had simply stated that I had not completed the initial WCA.
When ATOS set out to deliberately portray their own error as a failing by
the victim of that error, and a failing with fiscal consequences, then there
is no way to interpret their actions as anything less than actively and
deliberately dishonest.
Thanks to an unusual outbreak of common sense at DWP, my claim was
eventually reinstated and a further WCA was arranged for mid-October, again
at the local assessment centre. This time I was met at the door with an
adjustable chair. Unfortunately I could not even raise the seat of the chair
to an appropriate level, nor did the seat angle adjust, the only hope I have
of a usable position if the seat isn't high enough. Again I was reduced to
rolling sideways onto my hip. This time the delay was not 10 minutes, it was
something over 45 minutes. By the time I was called through (with the
receptionist bringing the useless adjustable seat through after me) I was
physically shaking. It was a different doctor to my first appointment, but
again he was scruffily dressed in a tatty anorak. It is impossible to
conclude that this reflects anything other than a profound lack of respect
for their clientele on the part of ATOS medical staff.
My pain-management consultant has told me that is almost impossible to get
doctors who are not specialists in pain-management to comprehend just how
disabling pain is, and I was therefore concerned about how much of a
background the assessor had in chronic-pain based disabilities,
unfortunately his manner instantly convinced me that any question would be
interpreted negatively and I did not feel able to make my point. As the
session started I rapidly became aware that I was in so much pain that I was
not answering effectively and was making a case for myself that was not as
strong as it should have been. It also became rapidly apparent that the
doctor was profoundly irritated by my refusal to give yes or no answers. He
may have found it irritating, but any understanding of my condition required
that he listen to the details and I would not be swayed on this, though
undoubtedly many people who are less able to express themselves will have
been browbeaten into less than complete answers by his manner. It was also
extremely apparent that he was reading from a computer-based script, his
eyes fixed on the screen, and less than pleased with answers that did not
fit the format its questions mandated. As a result of this there was an
almost complete refusal to make eye contact, destroying any sense that he
was truly engaging with me.
More disturbingly, he chose to take umbrage at certain of my points. I do
not expect automatic complete agreement, but I do not expect to be told that
I am wrong to have tried to search out information on the assessment
process, particularly when his subsequent conduct proved the correctness of
that information, nor do I expect to be criticised for the way I have
described the effects of my disability on my walking, particularly when
later events demonstrated that I was being absolutely accurate.
Some 20-odd minutes into the assessment I reached my limits on my pain
tolerance, either I had to stand, or vomit. I spent the rest of the
assessment balanced on one leg and crutches and it was only at this point, a
cynic would say at the point he started to fear being found negligent in my
treatment, that the doctor finally broke script and started to treat me as
an individual. He asked several times whether I was able to continue, but by
that point I just wanted the WCA over with, I certainly wasn't about to put
myself through the process for a third time. He completed the physical part
of the assessment, but even then he criticised me for being unable to bend
my leg so he could tap my knee with his hammer.
WCA thankfully over, I made it back to my car on one leg and crutches, and,
even though it is a bare 5 minutes drive home, my pain levels were so high,
never mind the opiate painkillers, never mind the TENS machine, that I had
to give serious thought to pulling over. I spent the rest of the day in bed,
the first hour physically shaking.
In late-November 2010 I finally received the notification that I had been
placed into the Work Related Activities Group, which is where I believe I
should be, together with back-payment of all the ESA payments I had been due
since May, but the process had taken 10 months and caused me a considerable
amount of pain and physical distress, actually worsening my disability. The
treatment I received has convinced me that ATOS have a complete and utter
contempt for the needs of their clients that adds up to institutional
disability discrimination and that their medical assessors are happily
compliant in this. Sadly DWP is little better, my experience has been that
the system only works when you complain.
I got through the system because I am too bloody-minded to give in when
people erect barriers in front of me and because I am too articulate and
persistent to easily dismiss; but many people aren't as bloody-minded,
aren't as articulate, aren't as persistent and the system will be far more
of a nightmare for them than it was for me. And as I say, I am struggling to
deal with the fact I need to do it all again.
There are several million people in receipt of DLA, some of them are
children, some of them are elderly, some of them are vulnerable. Is this
really what we want to subject them too?
after the ordeal that was my Work Capability Assessment for ESA, I simply
can't face putting myself through another assessment, and in fact I am
struggling with my ESA renewal for the same reason.
We hear ministers bleating that DLA is unassessed, and yes, a lot of people
are on lifetime awards, but really, when was the last time a missing limb
grew back? If DLA is unassessed, why do my friends who do receive it fear
their renewals so much? Might it be that certain ministers are being
conservative with the truth?
They tell us that PIP will have more rigorous assessments than DLA, let me
tell you about my ESA Work Capability Assessment, and you decide if that is
what you want to put DLA recipients through (and remember, unlike ESA which
is an out of work benefit, DLA recipients include children and pensioners).
I became unemployed just after ESA and the WCA were introduced, but
initially elected to claim JSA, in large part because of the stories already
coming out about the way the WCA system was failing disabled people. But ESA
wasn't that easy to avoid and it rapidly became clear that JCP were utterly
incapable of dealing with someone who was either disabled or highly
qualified, and god help you if you were both. The end result was a complaint
to ministerial level, abject apologies from JCP, and a request that I
transfer onto ESA.
My first WCA assessment was scheduled for May 6th, 2010 at the local ATOS
Assessment Centre, and what an ill-omened day that turned out to be! The
building is located in the centre of town and has no on-site disabled
parking, so is utterly unfit for purpose before you even get to the door.
There is a public disabled car park some 150m away, but that regularly
requires a wait of over 30 minutes to find a space in it and like many
disabled people I cannot walk even 50m without experiencing significant
pain. The next nearest disabled parking is 350m away. If you can manage to
get to the building access at the door is via intercom, so how someone deaf
and/or without speech is supposed to manage is a mystery. The DDA and the
Equality Act both require service providers to make provisions based on the
likely needs of their clientele, so a building whose entire clientele is
disabled should make a significantly greater degree of access provision than
most, yet the vast majority of ATOS assessment centres, even new ones, fail
to meet even the most basic standards of accessibility.
I had informed ATOS in advance via the ESA50 form that I would require
adjustable seating because of the difficulty in sitting that results from my
disability, which is in fact the core of my problems regarding working, so
pretty much fundamental to the whole assessment process. None had been
provided. The tattily-dressed individual who checked my ID led me into a
waiting room filled with cheap, non-adjustable seating completely
inappropriate to the needs of a client population containing a high
proportion of people with musculo-skeletal and pain and fatigue based
disorders. Within seconds of trying the seating I had realised that I was
completely unable to sit on it in any comfort, only by rolling sideways onto
my hip was I able to tolerate it at all. By the time I was called through,
something over 10 minutes later (despite apparently being the only client in
the building), I was in considerable distress, which only deepened when I
reached the examination room and found that the seating there was actually
worse. It was at this point that I discovered the tattily-dressed individual
was actually the doctor who was supposed to assess me, not the caretaker as
I had first assumed. I pointed out that I had told ATOS I needed an
adjustable seat and his reaction was 'Oh, you'll just have to book another
appointment'. He then admitted that this was not the first time this problem
had occurred, that they had asked for adjustable seating to be supplied and
that they had been told by their regional management to 'make do with what
you have'.
I returned home having wasted my time and experienced major amounts of pain
as a result. That pain triggered a massive flare-up in my condition and I
spent the following week on the floor of my bathroom as I was wracked by one
muscle-spasm after another, not knowing even what day it was. I eventually
managed to get to my GP, who doubled the strength of my opiate painkillers,
which brought the flare-up under control, but at the cost of my wandering
around in a daze for several months. The loss of control in this kind of
flare-up is extremely distressing both physically and mentally and I was
completely unable to deal with mail during this period, simply the thought
of a letter from ATOS or DWP being sufficient to send my pain levels
sky-rocketing. Ultimately it took me six months to completely catch up with
my mail, at which point I discovered a letter from ATOS dated a week after
my initial WCA date and calling me for another WCA a few days later, which
needless to say I had not attended, being barely conscious at the time.
In late-August 2010 I received a letter from DWP stating that my ESA
payments had been stopped, from the week before my initial appointment,
owing to my failure to attend the WCA. I called the office the letter had
originated with and the person I spoke to was perhaps the only DWP employee
ever to have impressed me with competence and common sense. She immediately
accepted my inability to attend a WCA I was not aware of and noted that ATOS
had made no mention of their failure to provide a required reasonable
adjustment, but had simply stated that I had not completed the initial WCA.
When ATOS set out to deliberately portray their own error as a failing by
the victim of that error, and a failing with fiscal consequences, then there
is no way to interpret their actions as anything less than actively and
deliberately dishonest.
Thanks to an unusual outbreak of common sense at DWP, my claim was
eventually reinstated and a further WCA was arranged for mid-October, again
at the local assessment centre. This time I was met at the door with an
adjustable chair. Unfortunately I could not even raise the seat of the chair
to an appropriate level, nor did the seat angle adjust, the only hope I have
of a usable position if the seat isn't high enough. Again I was reduced to
rolling sideways onto my hip. This time the delay was not 10 minutes, it was
something over 45 minutes. By the time I was called through (with the
receptionist bringing the useless adjustable seat through after me) I was
physically shaking. It was a different doctor to my first appointment, but
again he was scruffily dressed in a tatty anorak. It is impossible to
conclude that this reflects anything other than a profound lack of respect
for their clientele on the part of ATOS medical staff.
My pain-management consultant has told me that is almost impossible to get
doctors who are not specialists in pain-management to comprehend just how
disabling pain is, and I was therefore concerned about how much of a
background the assessor had in chronic-pain based disabilities,
unfortunately his manner instantly convinced me that any question would be
interpreted negatively and I did not feel able to make my point. As the
session started I rapidly became aware that I was in so much pain that I was
not answering effectively and was making a case for myself that was not as
strong as it should have been. It also became rapidly apparent that the
doctor was profoundly irritated by my refusal to give yes or no answers. He
may have found it irritating, but any understanding of my condition required
that he listen to the details and I would not be swayed on this, though
undoubtedly many people who are less able to express themselves will have
been browbeaten into less than complete answers by his manner. It was also
extremely apparent that he was reading from a computer-based script, his
eyes fixed on the screen, and less than pleased with answers that did not
fit the format its questions mandated. As a result of this there was an
almost complete refusal to make eye contact, destroying any sense that he
was truly engaging with me.
More disturbingly, he chose to take umbrage at certain of my points. I do
not expect automatic complete agreement, but I do not expect to be told that
I am wrong to have tried to search out information on the assessment
process, particularly when his subsequent conduct proved the correctness of
that information, nor do I expect to be criticised for the way I have
described the effects of my disability on my walking, particularly when
later events demonstrated that I was being absolutely accurate.
Some 20-odd minutes into the assessment I reached my limits on my pain
tolerance, either I had to stand, or vomit. I spent the rest of the
assessment balanced on one leg and crutches and it was only at this point, a
cynic would say at the point he started to fear being found negligent in my
treatment, that the doctor finally broke script and started to treat me as
an individual. He asked several times whether I was able to continue, but by
that point I just wanted the WCA over with, I certainly wasn't about to put
myself through the process for a third time. He completed the physical part
of the assessment, but even then he criticised me for being unable to bend
my leg so he could tap my knee with his hammer.
WCA thankfully over, I made it back to my car on one leg and crutches, and,
even though it is a bare 5 minutes drive home, my pain levels were so high,
never mind the opiate painkillers, never mind the TENS machine, that I had
to give serious thought to pulling over. I spent the rest of the day in bed,
the first hour physically shaking.
In late-November 2010 I finally received the notification that I had been
placed into the Work Related Activities Group, which is where I believe I
should be, together with back-payment of all the ESA payments I had been due
since May, but the process had taken 10 months and caused me a considerable
amount of pain and physical distress, actually worsening my disability. The
treatment I received has convinced me that ATOS have a complete and utter
contempt for the needs of their clients that adds up to institutional
disability discrimination and that their medical assessors are happily
compliant in this. Sadly DWP is little better, my experience has been that
the system only works when you complain.
I got through the system because I am too bloody-minded to give in when
people erect barriers in front of me and because I am too articulate and
persistent to easily dismiss; but many people aren't as bloody-minded,
aren't as articulate, aren't as persistent and the system will be far more
of a nightmare for them than it was for me. And as I say, I am struggling to
deal with the fact I need to do it all again.
There are several million people in receipt of DLA, some of them are
children, some of them are elderly, some of them are vulnerable. Is this
really what we want to subject them too?
A Spartaci Tale #spartacusreport #spartacusstories
A Spartaci Tale
Can I start by saying I spent over ten years in retail management before seeking a change and starting from scratch as a packer in a factory. Worked my way up to Warehouse Manager, trained to operate every machine in the factory, keyholder, used to doing 12hr nights when needed and watching my second wife leave because I was a workaholic. So stick your scrounger labels in a tight dark place and we'll begin.
Originally misdiagnosed, thankfully, with Motor Neurone Disease. After waiting three months inside a vodka bottle I got to see a consultant who told me I had a trapped Ulner Nerve and the beginnings of Osteoarthritis in my spine. Where my Doc had got MND from was a mystery. So, at this point, partial paralysis in left hand, intermittent severe pain in lower spine, beginnings of problems with alcohol and depression, Doctor with a broken nose, me with a new Doctor.
Can't use opiates so finding painkillers that worked was an ongoing game until a friend introduced me to cannabis. ( A whole other story. ) Physio brought some success with the hand although still weak and suffers loss of feeling. But time brought the worsening of the arthritis, as it always does, and a re-diagnosis of Degenerative Spinal Disease. It also brought my first heart attack, diagnosis of cardio-vascular disease and a statement that changed my outlook on life. I was taken straight in to surgery after the heart attack and the surgeon told me he didn't expect my heart to last longer than five years. This was Feb 2008.
In the last six months I've also been getting abdominal pain and loss of control of bladder and bowel. Doc wants to stick a camera up there again but being quite honest if I can sort the bladder/bowel control out I see little point. I can handle pain and if they find what they probably will my heart won't take the treatment required and I'm not willing to spare the time.
So, Monday 16 January 2012, cat snoring, sat quietly, feel bloated and uncomfortable due to bowel problem, hiatus hernia making my reflux worse, reflux bile causing me to hack and wretch, spine pain about a 7 - like toothache in a molar. Usual first steps out of bed told me I'd be able to walk today which was a plus as I needed groceries. All three pain inspired dashes to the toilet hadn't produced blood from anywhere, another plus, bum should be secure while out. Half a dozen layers and a stick assisted tortoise impersonation to the bus stop. Lovely spine juddering bus ride ( I bet all disabled ppl love speed bumps as much as me. ) Little stage whispered moan about arseholes walking three abreast on the pavement as if everyone should make way for them. Pleasant smile from a lady in Tesco, every little helps, then home again. Totally fucking knackered.
Roll up Employers. Cameron's Health Gestapo Atos keep calling me back for assessments so there must be hundreds of you out there who want a complete liability who will puke, piss, shit, curl up in a ball in pain or just plain fucking die at any moment on your payroll. What! No?
All MPs and Lords should feel utterly ashamed at what they are allowing to be done to the UK sick and disabled. Stop the Welfare Reform Bill. Now!
Responsible Reform 'Spartacus' Report << Read it and come chat at #spartacusreport
Denise's Story #spartacusstories #spartacusreport
Every time I hear the media or the general public refer to people who claim benefits as "scroungers", their ignorance and lack of empathy saddens me. To me, being in receipt of benefits is most definitely not a lifestyle choice and this is why...
My name is Denise Stephens, I'm 32 years old, I live in London and I happen to have a highly active form of relapsing remitting multiple sclerosis (MS). After numerous years of unexplained symptoms, I was finally diagnosed in 2003, at the age of 24, and my life changed forever.
My name is Denise Stephens, I'm 32 years old, I live in London and I happen to have a highly active form of relapsing remitting multiple sclerosis (MS). After numerous years of unexplained symptoms, I was finally diagnosed in 2003, at the age of 24, and my life changed forever.
Having been fascinated by the world of forensic science since college, I set out to pursue a career in this highly competitive field. I was lucky enough to secure a position as a forensic toxicologist, working for a well known London University. Just over two years later I was offered a position with another organisation, where I would train as a court reporting officer. Little did I know that all of my dreams; independence, career, lifestyle, long-term relationship and so many more, would all be lost within a five year period.
At the beginning of 2004 my health took a turn for the worse, I had a disabling series of relapses which left me barely able to walk, manipulate objects with my hands or see out of my right eye. While my friends were focusing on climbing the career ladder and going out clubbing, I was finding it difficult to do even the most mundane of things, such as hold a knife and fork to feed myself. To say my self-esteem took a battering is an understatement.
Time went by and I was gradually able to build myself back up, with the help and support of physiotherapists, occupational therapists and other health care professionals. But this isn't the end of the story, the following years were divided between periods of illness, hospital admissions and rehabilitation.
I was forced to give up my career, which badly knocked my confidence. I come from a background with a strong work ethic, so without a job I felt worthless. I desperately wanted to return to work, if not my original career, something else even. I'd always worked throughout my education; paper round, shop assistant, waitress, bar work and administration, no job was below me. If only my health would allow me to do any of one of these things, I would have done it.
I reluctantly applied for benefits and slowly felt my independence, and self-worth slip away, only to be replaced by the feeling of isolation and loss. Nobody would be interested in speaking to me, what was I supposed to say when people ask "what do you do?"
I desperately tried to return to work, but attempts were either, at best, short lived due to a deterioration in health and hospital admission or, at worst, a complete and utter false start.
Despite having a first class degree at a red brick university, it appeared that I was unemployable. Looking for part-time work to meet my needs, was easier said than done. I would apply for general administration positions that required GCSE grades and despite the two ticks disability symbol, previous admin experience and a first class degree would receive no offer of an interview. I repeatedly visited the Jobcentre Plus for advice and was told to dumb down my CV. This definitely wasn't what I envisaged when studying so hard for my degree.
Being stuck at home with little to occupy my mind was slowly driving me up the wall, so I decided to go back to university. I was extremely frank about my condition and what it meant I could and couldn't do, but when push came to shove I received very little support, being told that the disability advisors were far too busy dealing with the undergraduates to be able to help. Yet again within a few weeks, I'd had another relapse and was back in hospital.
After years of what felt like hitting my head against a brick wall, the number of hospital admissions well into double figures and deteriorating health, I finally gave up trying to fit into the employment "norm". I just didn't and couldn't fit in and reasonable adjustments were rarely seen as important or necessary.
Slowly the Denise Stephens I and others knew disappeared, I felt useless and lost without the sense of purpose that comes from having a focus in life. Compounded by this, as well as mounting financial pressures which made me feel like a burden, my long-term relationship broke down and I became homeless. Not quite the stuff that fairy tales are made of...
So why am I telling you all of this, I hear you ask?!? Well, it's in the hope that you'll realise that no-one is guaranteed an easy and straightforward life. Health is something that many of us take for granted, but when it's gone there's little that can be done about it. There is no cure for MS, there is no walking away from this and I will have to manage my condition the best I can from day-to-day for the rest of my life. I did not ask to have my world turned upside down, it just happened as it could to anyone else. I did everything that society expected of me; studied, worked, paid my taxes, but now I feel like I'm a second class citizen because I have to claim benefits as my health doesn't allow me to hold down a typical 9 'til 5 job.
The proposed cuts to disability related benefits and services, feels like yet another kick in the teeth for those whose health and disability has already affected their lives and aspirations immeasurably. To carry out these cuts is irresponsible, as they will destroy the very support framework designed to keep the most vulnerable people in society safe and well, contrary to promises made by the government.
This is NOT a lifestyle choice! Do not treat it that way...
Originally posted here
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