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Roberta Mackie
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# Posted: 20 Aug 2010 04:47
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In my view the new proposals are severely flawed and will inevitably cause chaos for all involved, but in particular for those who are already amongst the most vulnerable members of society.
I have M.E. which is a notoriously invisible illness. Outwardly I don't
look too bad, I am not in a wheelchair, (except occasionally) but this debilitating illness affects every level of my life and is extremely disabling. I am in severe pain all the time. This pain is not visible. I take 8 Paracetomol a day every day, plus stronger painkillers at night, just to get through the day. M.E. is also a fluctuating illness and quite unpredictable. So there are days when I cannot get out of bed or am so nauseous I cannot function or the pain is so great I cannot walk
at all, or my headaches are so bad I cannot bear any noise or light or movement.
These things, and many more, make regular employment impossible. No-one will employ someone who cannot say from day to day whether they will be able to function or be able to get out of bed, let alone out of the house! A great number, of Incapacity benefit and DLA claimants have \"hidden\" disabilities. They are in real danger of losing , not only money, but a reasonable standard of living, their independence and
their dignity - despite being genuinely disabled and sometimes more severely affected than a wheelchair-user. The symptoms of a variable condition can easily be overlooked in a medical assessment and I know people who have already had this experience and lost their benefit. They are now in very dire straits, in danger of losing their houses, living on extremely poor food and terrified about what will happen.
The idea that this new scheme is to \"reduce dependency and promote work\" is xtremely worrying and also insulting. Does the government think we are happy to be in the situation we are in and would not work if we possibly could? This illness has wrecked my life, I have lost my career, my house, my relationship, and a lot of friends because of it, not to mention my freedom and ability to live in the way I would want to live. It is made just about bearable by the fact that I have just enough money currently to pay for the help I need with housework, care, a car to get
me around when needed (mostly to Hospital and Doctors appointments.}
As I am alone I already have to ask friends and neighbours for help with a great deal, and they give it, but I often feel they are fed up or burdened by it. If I do not have the money to pay for the majority of the help I need then that burden will become even greater because of my needs, which are considerable.
People ask why the \"genuinely\" disabled are troubled by the idea of medical assessments for benefits, as we will surely qualify for them. This is why - medical assessments bring a great deal of stress and this stress exacerbates the symptoms of the illness. In my case, because of the nature of M.E., not only does it bring stress and a flare up of symptoms at the time , but it has a knock on effect days afterwards. One stressful hour , physically or mentally, and I can be bedridden for days, or even weeks, afterwards. Just writing this account has taken an enormous effort, staggered over several hours and I will be unable to do anything
for the rest of the day because of it.
There is also another reason - I have very serious misgivings about the WCA medicals' the knowledge, experience and understanding of those involved in assessments. The Work Capability assessment has proved to be a farce, with many, many genuinely ill people being told they are 'eligible for work' when they clearly are not. I have absolutely no confidence in the assessors ability to recognise the impact an impairment or health condition has on a disabled or ill person\'s life. I really fear that those who find their benefits taken away will most likely be those without obvious physical impairments.
Now it seems that seriously ill people are being made to undergo the work capability assessments whereas under the old system, if a person was deemed to be extremely unwell, information provided by their doctor would exempt them from an assessment.
I feel very strongly that it is vital to protect people with a diagnosis of a severe and enduring illness from having to undergo these assessments as well as from any kind of sanctions and undue pressure to find a job.
In my view, GP\'s are the one\'s who are best placed to assess a persons state of health as they have a long-term relationship with their patient and are aware of their background circumstances as well. These crucial, life altering decisions should not be made on the basis of a fifteen minute appointment with someone who knows nothing about the individuals in front of them and, in most cases, nothing about the complexities of the various conditions they are suffering with. M.E. is one of the complex illnesses which affects every system in the body and is still not
fully understood even by experts in the field of research. How then is a WCA assessor going to make a real and fair judgement based on a short interview and standard computerised questions, in most cases without even any reference to Doctors letters and reports? Until you have personally suffered with an illness of this kind or lived with someone who has it, you simply cannot have any idea of how it affects every tiny area of your life, and the lives of those around you.
I, for one am very fearful for my future. I live alone and am totally reliant on
paid for outside help. If I am unable to pay for this - what will happen to me? I simply cannot cope on my own. I have only got through the many years of debilitating illness, loss, and isolation because of this help. Without it I truly feel my life will not be worth living.
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ADW
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# Posted: 21 Aug 2010 18:14
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You have summed things up so well, I can only agree with you. Sometimes, because you cannot see that a person is disabled, be it physically or mentally, the assumption is that you are fit as a flea. Well, that is so far from the truth. Goodness knows how they would "get me back to work", then they retired me on ill health in the first place. A constant battle with the DLA has resulted in a rise in my care component and full mobility, but, it has been the most draining and stressful time, for the past year. I gave up fighting, for several months, but then thought, no, I will not give in, I am ill, long term, progressive and need care from my partner for way over 35 hours a week. I won, but, for how long?
Also, my ICB, as was, is now in perpetuity, as I meet all the scores and more besides and am unfit for work, do not require any further medicals, drs reports etc, but, will that change?
It hangs, like a cloud, will I and many others have to re-fight our corner, yet again, jump through hoops, to prove the same things? Shame on the Government for forcing this extra burden upon us, when we struggle enough in our daily lives. Turn the tables and I am sure they would not be so eager to move the goal posts so much.
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Anonymous
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# Posted: 25 Aug 2010 09:49
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i totally agree with everything you have said ....we cant let the government label us all as workshy scroungers ...we are ill and we need help to get an equivalent standard of living to a non disabled person
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GT
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# Posted: 6 Sep 2010 16:09
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I have fibromyalgia - not unlike M.E. I'm a qualified gasfitter, driving instructor, pc technician and have worked as a telecommunications tech yet I struggle to get by on benefits. I've been this way for 2 decades.
My illness has cost me 2 marriages, my home and another relationship. I should be earning between £30k and £40k but I get nowhere near a third of that and people call me lazy.
I've had benefits stopped 6 times and 6 times gone to appeal and won.
Isn't it time there was a limit on the number of times benefits can be stopped? Surely 6 appeal wins says something?
Why would I want gto stress myself by suffering divorce, losing my home and loss of personal esteem if I could be working, earning what my qualifications could get me?
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Sue
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# Posted: 20 Oct 2010 07:24
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I am totally baffled as to how the esa system works.
I have severe hearing loss & fibromyalgia which also brings severe pain, IBS, mobility problems,brain fog etc etc .
I had a medical for esa & told the guy i had been diagnosed with fybromyalgia. He made a sarcastic comment "what just like that" i informed him i had been having problems & diffrent tests for at least 3 years prior to being diagnosed. He chose to ignore this & put in his report that the doctor was wondering if it might be fibromyalgia.
That was all ignored & i was given 9 points for hearing loss ( cannot hear someone talking in a normal voice in a quiet room, sufficiently clearly to distinguish the words being spoken).
Due to this problem i opted for a paper hearing as i get very stressed & upset during appointments etc, I now have to take my partner to doctors with me so he can explain later what was said as i miss so much conversation.
My appeal was disallowed & i asked for a statement of reasons which i just received, it states that it deprived thbe tribunal of the opportunity to question me about issues that were of concern relative to the frequency of the problems i suffer from.
I feel i was deprived of my rights to a fair appeal because of a disability that made it far to difficult for me to attend. Surley this is discrimination?.
I contacted the CAB who say i cant appeal to the upper tribunal as it can only be done on a point of law & i should have attended the hearing.
The issues were about my condition not my hearing that had already been made clear by the 9 points awarded for it, so if i could not hear how could i have cleared up issues..... it would have just led to panic, stress & upset for me.
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