A really Dark day for the Disabled.
darkjedimaster
Posts: 18,621 Forum Member
✭✭
My Story
Since 1998 I have been of poor health & haven't worked since 2001. Towards the end of 2002 I was diagnosed with a rare brain condition called Arnold Chiari Malformation, which makes me suffer daily dizziness & pressure headaches which make me very disorientated. The most risky part of the condition is that I do suffer from drop attacks & blackouts & so therefore have never been allowed to drive due to posing an extreme risk. There is no cure for my condition, only treatment in the form of Brain surgery.
In 2006 I was finally given brain surgery in the form of a VP shunt to treat the symptoms of the condition, the surgeon wanted to go down this route instead of going straight for the riskier decompression operation. Keeping in mind that both surgeries are only treatments and not a cure, as there is no cure. Unfortunately the shunt didn't treat the symptoms for me as I still suffer with the same symptoms that I did in 1998, but with more of a risk if I hit my head when I have a blackout.
Over the last few years I have attempted to get the riskier surgery done as I hate the way my health is, but due to the local surgeons being in denial over the condition as they haven't obtained the knowledge for it. However due to local area health cuts implemented by the government, a patient no longer has the choice of an out of area hospital for possible treatment, only a neurologist or neurosurgeon are able to do a referral. This I find sickening as I have found a hospital in another part of the country that has experts in the condition & are willing to take me on as a patient, but cannot do so unless they have the referral from someone at my local hospital.
I have inquired into a private referral, but the cost is so extreme, that even if I sell everything I have & went without the few good things that I have in life, it still wouldn't be enough to raise the money. I have also developed a self harm act called Trichotillomania (Hair pulling) over the years from the depression caused by not having a normal life and sometimes being housebound as my condition does vary throughout the day, on a day to day basis.
A few years ago I saw the idiots at ATOS & even tho I went in there with a shaved head, so that the assessor could see that I had a shunt, he still had the nerve to state that I had a heart condition as that is what my condition is in the medical field. However anyone that has seen my MRI scans, can see that my brain isn't normal. Luckily I passed the assessment and that my benefits wasn't stopped. Even tho I am on DLA for an indefinite period, I know that from October this year I will be assessed for PIP, so am hoping that the company doing the medical is more competent than those tools at ATOS.
I hate being on benefits, but the money I get pays for the care that I often need, as well as the ability to do a little bit of amateur photography now and then which makes my life a little bit better & refrains me from wanting to do the self harm. I haven't worked since 2001 & I am almost 39 years old, with the same health that I had in the late 90's. I would love to return to work meet new people & have a bit more meaning in life, but as no company is willing to take the risk employing someone that has blackouts, I am pretty much stuck in a viscous circle. I would love to do office work, but it would have to be a sit down job only tho as I cannot go on ladders &am unable to take stairs to different floors.
I won't give up my fight in getting the surgery done, even if it means going to the press with my story to change the mind of the staff at my local hospital. I know that I am classed as a no good sponger by some Tory loving people on this forum, but those that think that, can go and f*** themselves for all I care. I want to come off benefits and I want to work, but the government cuts are going to make life harder for people like me.
Sorry for the long winded story, but really felt that it was important to tell it, I feel for everyone that has poor health & know what they are going through with today's result.
Since 1998 I have been of poor health & haven't worked since 2001. Towards the end of 2002 I was diagnosed with a rare brain condition called Arnold Chiari Malformation, which makes me suffer daily dizziness & pressure headaches which make me very disorientated. The most risky part of the condition is that I do suffer from drop attacks & blackouts & so therefore have never been allowed to drive due to posing an extreme risk. There is no cure for my condition, only treatment in the form of Brain surgery.
In 2006 I was finally given brain surgery in the form of a VP shunt to treat the symptoms of the condition, the surgeon wanted to go down this route instead of going straight for the riskier decompression operation. Keeping in mind that both surgeries are only treatments and not a cure, as there is no cure. Unfortunately the shunt didn't treat the symptoms for me as I still suffer with the same symptoms that I did in 1998, but with more of a risk if I hit my head when I have a blackout.
Over the last few years I have attempted to get the riskier surgery done as I hate the way my health is, but due to the local surgeons being in denial over the condition as they haven't obtained the knowledge for it. However due to local area health cuts implemented by the government, a patient no longer has the choice of an out of area hospital for possible treatment, only a neurologist or neurosurgeon are able to do a referral. This I find sickening as I have found a hospital in another part of the country that has experts in the condition & are willing to take me on as a patient, but cannot do so unless they have the referral from someone at my local hospital.
I have inquired into a private referral, but the cost is so extreme, that even if I sell everything I have & went without the few good things that I have in life, it still wouldn't be enough to raise the money. I have also developed a self harm act called Trichotillomania (Hair pulling) over the years from the depression caused by not having a normal life and sometimes being housebound as my condition does vary throughout the day, on a day to day basis.
A few years ago I saw the idiots at ATOS & even tho I went in there with a shaved head, so that the assessor could see that I had a shunt, he still had the nerve to state that I had a heart condition as that is what my condition is in the medical field. However anyone that has seen my MRI scans, can see that my brain isn't normal. Luckily I passed the assessment and that my benefits wasn't stopped. Even tho I am on DLA for an indefinite period, I know that from October this year I will be assessed for PIP, so am hoping that the company doing the medical is more competent than those tools at ATOS.
I hate being on benefits, but the money I get pays for the care that I often need, as well as the ability to do a little bit of amateur photography now and then which makes my life a little bit better & refrains me from wanting to do the self harm. I haven't worked since 2001 & I am almost 39 years old, with the same health that I had in the late 90's. I would love to return to work meet new people & have a bit more meaning in life, but as no company is willing to take the risk employing someone that has blackouts, I am pretty much stuck in a viscous circle. I would love to do office work, but it would have to be a sit down job only tho as I cannot go on ladders &am unable to take stairs to different floors.
I won't give up my fight in getting the surgery done, even if it means going to the press with my story to change the mind of the staff at my local hospital. I know that I am classed as a no good sponger by some Tory loving people on this forum, but those that think that, can go and f*** themselves for all I care. I want to come off benefits and I want to work, but the government cuts are going to make life harder for people like me.
Sorry for the long winded story, but really felt that it was important to tell it, I feel for everyone that has poor health & know what they are going through with today's result.
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Comments
Conservatives, the party only for the super rich!
If you're among the unluckiest, you get nothing.
When you find the amount out take into account the extra costs of bring disabled, incontinance pads the extra laundry from bed changes and clothing changes...the extra to keep warm the extra to have help around the home....its about balance
Extra electric to charge a mobility scooter ..forgot to add that one in
We live in a country where nastiness dominates politically. It is a real shame, but we can still fight for the fair society we want.
Don't give up OP things are always darkest right before the dawn.
Nice post
you should look at the gov.uk website. there you will find details of benefits, allowances, credits and pensions that people can apply for. some are based on national insurance contributions and some are based on the amount of money coming the household. there is no average figure. the only way to find out what your entitlement is, is to apply.
I think they like me are in a Tory stronghold.
Yes and they stated that nothing could be done due to the cuts. I also spoke with a local Labour MP a few months back and he said that if Labour got back in, then they would return patient referral back to the GP, so that the Patient can choose which hospital they have treatment at. So I voted for them as I did have the shunt fitted at an out of area hospital, whilst under the Labour government, so voted for them again this year, in the hope that it would happen. Back to the drawing board now, today has put a downer on my fight, but I won't give up.
From the DWP tabulation tool
Average ESA award - £105.39 pw
Average DLA award - £82.81 pw
Many disabled people do not get housing, let alone "free" housing.
Less than 1 in 3 disabled people qualify for even the lowest rate of DLA.
Many people who are genuinely ill do not qualify for ESA.
DLA is designed to help towards the extra costs of disability that disabled people face.
she's in her mid 50s now and against her GPs advice still works part time, because, in her words, she has always been a worker and for as long as she can draw breath she will try to work,
doesn't stop her being classed as a scrounger though, despite relating my story several times and sometimes in greater detail, the only response I ever get from Tory supporters is to call us names and to tell us to "try working for a living" I am 62 and have worked hard for the vast majority of my adult life and in heavy dirty manual industrial jobs, and have been self employed but a low earner since 2007/8,
It matters not to Tory supporters that people like us try hard to do our best, they refuse to accept anything other than the Tory propaganda of "on benefits" = lazy scrounger,
My honest advice to you OP is to not relate your personal details on this forum,
(it's too late for me, because lot's of the Tory supporters here already know it and waste no time in using it against me)
Because one thing you certainly will NOT get is any sympathy or understanding (or very little) they will only 'file it away' to use against you at a future date, and from today onwards it's going to get a hell of a lot worse.
all the best.
...and for those who knew it would happen... there's one now.
Seconded. The OP is like the overwhelming majority of chronically ill and disabled people who would love to be able to work and have the good health, that most people take for granted, back. It is sad that some on here obsess about how much in benefits people receive whilst forgetting all the things that these people have lost in order to satisfy the very tough eligibility criteria for these benefits.
Thanks everyone and am so sorry to hear about that Old Hippy Guy, it is sickening how those who have worked their entire life are being treated like they don't matter. Yes I know that I won't get hardly any sympathy on here and am normally quite private about my personal health, but today I had to let it all out, despite what consequences it may have in the future.
sickening but expected sadly.
but sometime I have to admit I have to bite my tongue and count to 10 before responding.
Most people start on £71 for the first 12 months. So that figure is slightly misleading.
That's a sweeping generalisation. A lot of the electorate, that is you and I and our families, have people we know who are disabled, sick or poor. It isn't them and us at all. We all have problems.
And we all have a right to vote. Not every Conservative voter is rich. We're just ordinary working people - the working people that Labour say they represent. No they don't.
It's not just the disabled and poor who need help - there's a lot of issues. Everyone thinks their problem is important - and of course it is - to them.
So 11.5 million people are "super rich" ?