Anyone who has ever lived in rented accommodation will know how hard it is to get the land lord to do anything, however my landlord takes the biscuit. Not one tiny little rich tea either ohhhh no the whole contents of Burtons biscuits.
Over a year ago the woman who owns the flat downstairs came up and told us we had a leak, we called out the plumber who eventually found it under the bath, after much pulling humming and hawing and blaming my youngest kid saying she had flooded the bathroom during her bath. Erm NO SHE DIDN'T. I know she didn't cos she is still being supervised during bath time.
Its OK love (I hate being called love btw) its fixed, so the plumber said. The joiner however argued and said he had had the same problem and needed to replace the bit pipe going from the bath drain to the waste pipe outside, but no the plumber knows best so it was taped up.
Less than 2 months later knock knock at my door again we had flooded downstairs, but this time it wasn't a small leak drip drip dripping ohh no it was their whole bathroom ceiling being in their bath!!!!!!
Again we called them out again the plumber said he had "fixed" it again all he had done was tape up the join, this time however he admitted it would just cost £2 for a piece of pipe longer than the one there at present. Did he replace it?? Did he heck as like.
Guess what a short time later we heard the familiar knock knock at the front door. Again we were flooding the flt downstairs.
Now not being plumbers we wont attempt to fix the problem we could make it a whole lot worse. So every time we get the knock at the door we do as we are supposed to do and call out the housing association, who send out a joiner (to take the bath panel off) and a plumber (to re tape up the join where the pipe has moved) and every time we are told its not a temporary join its a permanent fix!!!
I got so peeved off with this happening, because we cant use the bath when I know we are flooding downstairs, which of course means my kids cant be bathed nor can I keep my HS areas clean which can mean bathing twice per day, I called out the housing inspector.
Trevor came out (not bear in mind he has never worked as a plumber or joiner he joined the housing assoc as a housing inspector with no formal training in housing repairs) he tells me the tape on the pipe is not a temporary repair it is a permanent repair. I know what the plumber told me, I also know what will happen again and again but what do I know I just live here wondering what will happen next.
Will one of my children be in the bath when it falls through the floor?? Will we end up staring down a gaping hole in the floor at the bathroom downstairs??
All I know is I am sick of the constant calls to the housing association with their lackadaisical attitude towards repairs.
As long as Trevor can't see the problem it doesn't exist. I have called them out about the windows rattling as they are opened, its OK Trevor can open and close them using brute strength that neither of my children nor I have, the heating "seems" to work when he is here so of course it does all the time. I have cupboard doors opening all by themselves, no problem there of course its because the flat was built in 1958.
Well I have lived in flats older than this and never had the problems. Could it be the fact that the housing association couldn't organise a drunken night out in a brewery?? Could it be the fact that they will pick the cheapest contractor not the one with experience of dealing with rented properties??
Then I call them up and ask when repairs are going to be done and I get told "we don't know what we are doing with the flatted stock" which basically means they couldn't care less as long as we pay them the rent each and every month.
Well here is a novel idea if you don't want to be held responsible for the repairs sell the flats back to the council, they at least made sure the flats were habitable and weather proof, ohh and they do repairs.
Maybe then we wouldn't keep flooding the guy downstairs meaning the housing assoc pays for a new ceiling for them, costing much more than a £2 piece of pipe!!!!!
Saturday 1 October 2011
Thursday 22 September 2011
Today I read in the guardian that the DWP are STILL harassing claimants of ESA (Employment and Support Allowance). They are doing this by sending out letters to contributory claimants, this is the benefit you would get if you have paid NI contributions through working but have either some savings (under £3000) or someone in your home who works earning over £6000 per year.
Now most single people are automatically put on contributory ESA if they have been signed off work due to an illness or medical condition which means they cannot work. It is up to the individual doctor how long they sign you off, there is no difinitive rule on how long someone will be signed off work for as each person will respond differently to different conditions and illnesses.
HOWEVER the DWP doesnt think that is right, ohh no the DWP thinks if you are ill for whatever reason then you are fit for work within X time frame simply because thats what the IT company they pay to do the "medicals" say.
Now ATOS for anyone wishing to do their own research as I have had to do, is easily googled and well to be quite frank take a note pad and pen because it will leave you confused and befuddled. There is much anicdotal evidence of people who have taken their own lives due to ATOS and the DWP threatening them, not to mention the Tribunal Services having to employ many more people to deal with the hundreds of thousands of appeals. The cost of the appeals is somewhere in the £400 million range at present.
Now the article does say contrabutery ESA not income. Now for the very interesting quote see if you can spot the mistake and it is quite glaring:
"We must ensure that the benefit system has to be fair to taxpayers as well as disabled people."
Hmmmmmm isnt the very fact that its contrabutery not income related means its UNFAIR to the taxpayers????
Also to be noted is the DWP rule that terminal means death within 6 months, now anyone who has ever seen a doctor will be able to agree that sometimes they dont have a flying figs idea of what is wrong with you and therefore cannot give a proper diagnosis, or in the case of some cancer patients telling them they have less than one year to live could mean less than 3 months but then again could mean 10 years. Its often down to how someone responds to treatments and how early the cancer was caught.
Another thing to note is the letters being sent out are telling people their benefit will be stopped soon possibly within 6 months. HOWEVER the DWP are still in consoltation with the public so it has NOT passed as law as yet.
No matter how much the DWP and Mr Iain Duncan Smith wishes it to be true the government cannot arbitrarily stop peoples money when they are ill.
Now anyone can say "ohh but I know someone on the fiddle" of course you dont you just think you do. Its easy to point the finger at someone and say "look at them they don't look disabled or ill" when you dont have access to all the facts.
I have lost count of the times I have been asked why I'm not working, why dont I just get a job because I dont "look" disabled.
Well anyone is welcome to swap places with me for the day. I will be generous and even make it a good day when I can do *some* things for myself such as walk myself to the bathroom. I wont make it a bad day when I scream in pain and cant move because every movement makes me cry out and lash out at my family for trying to help me.
Remember that next time you see someone "faking" an illness, also remember that a lot of medical conditions are NOT DWP sanctioned a fair amount are not on their tick box system and thats before I even get to the debunkle that is ATOS Origins.
I am waiting on my letterbox rattling with another letter from the DWP telling me that since I have no savings (we used them all to get me back and forward to various doctors and specialists at many different hospitals) and ATOS say I'm fit for work, that I will have to find a woefully unsuitable job, which will make me much worse than I am at present.
Anyone know of a job where I can do little and get much re-numeration??? ohh wait I do MP . . . . I couldnt do a worse job than this lot could I??
Actually I would probably do a much better job since I feel threatening ill people (whatever the illness) is wrong and quite frankly bang out of line, someone needs to give government a reality check.
Remember Mr Camerons pledge that disabled people were safe with him?? Yeah O.K. then Mr PM you lied then and are still lying now.
What about all the "we will look after the most vulnerable in society" claptrap because that's exactly what it is claptrap, rubbish said to get him into number 10 Downing Street.
If terminally ill people aren't the very most vulnerable of society who are?? If we cant look after them who honestly thinks anyone will give two hoots when you become ill??
Better make sure you look both ways when crossing the closed road just in case a drunk driver doesn't see the signs and drives up the road and runs you down, better not go outside in case a bird drops half a sausage roll and it causes you to slip and fall breaking your hip, better not stay inside the home either since 60% of all accidents are done there, don't drive drink smoke walk run jog breath air polluted with car exhaust fumes the list goes on and on of things we shouldn't do because they "could" make us ill maybe not now but later in life when there will be NO help for us.
As for me I'm waiting on my next appointment with ATOS to prove I'm well and healthy as they said I would be 18 months after my first so called medical with them, even though I'm worse than I was then and now use a walking stick to get around. But of course who cares I am a faker who is putting it on so I can claim ESA and DLA, which will also be gone within the next 4 years to be replaced by PIP (personal independence payments) which will not allow most of the people presently on low rate for care and / or mobility to claim.
Think I'm scaremongering???
When all the "fakes" like me have been tortured to death by the system who will be there to fight for you and yours???
Use the brain you were born with Messers Cameron, Duncan Smith, and Grayling see what you are doing is NOT good for the economy but more likely to bring it to a stand still.
Of course if the DWP pull millions of people off benefits there will be more money to swan around taking many holidays while Britain crumbles around us.
Maybe you should take up the fiddle then you can really go down in the history books just like Nero . . . . .
Wednesday 24 August 2011
The Joys Of Living In A Housing Association Property . . . .
Years ago we were council tenants and thought the councils were slow at repairs and tried any excuse to get out of actually doing the repairs, that was until we took a housing assoc flat.
We moved in just over 5 years ago, we were over joyed at moving to an area where my children could go outside to play unharassed by drug paraphernalia where they could play in areas designated for them, areas that were safe.
What I didn't know was the lack of care toward tenants by the HA. We pointed out a few repairs when we viewed the flat, ohh no problem those will be done as soon as you take the property. Hogwash.
Here we are 5 years down the line and still the boiler (roughly aged about 15 years old by the many gas engineers sent to service it each year) needs condemned, it only seems to work when there is a howling gale threatening to break the kitchen window, and maybe for long enough for the pilot light to light then it switches itself off and refuses to come back on for at least a week. One repairman told me (a woman who can't reach up to press the button on the boiler) to "press here next to the switch and it will come one as long as you press firmly" yeah O.K. then wait while I get my teenager she can climb up on the work top and risk falling out the window to press firmly on a part of the boiler I didn't see because his body was in the way, or maybe just fix the thing??? Ohh no the repair men got it working for all of 2 minutes therefore it clearly works all the time doesn't it? Even though he saw it go back off and he ordered parts which didn't help make it work more often. Of course this was after the engineer who said "there isn't a drop of water in the boiler I have to re-pressurise it love" then swore loudly and repeatedly because he had BROKEN it 3 weeks no boiler again. When there was snow on the ground and they couldn't be bothered ordering the part as anything other than routine . . . snow on ground no heating no hot water and he wanted to switch my gas supply off???? Never gonna happen at least I could still get the teenager to put the fire on to heat the living room!!!
Now to be honest I wouldn't complain so much but its a combi boiler which means if it wont go on we can't get hot water to wash, never mind heat for the flat.
I still have what I call trampoline floors, which is to say when my youngest child walks down the hall the floor dips and sags. I complained and eventually they sent out joiners, who lifted the old floorboards tutted over and over and swore a few times about "cowboys". I asked outright what they were on about and got the following answer - "the idiots who did the central heating cut through every single joist love that means no matter how we fix this the problem will return because you need the joists repaired and we are here to replace the floorboards", now I have taken out many swear words here the joiners were livid as was I. This repair lasted less than a month.
A few months later I asked the local housing inspector to come out about the many repairs I thought needed, he told me over and over the joiners, gas engineers and various other workmen that had been out to my home had no idea what they were talking about and he who hadn't seen any of the repairs done, and had never worked as a repair man, knew best there was nothing wrong with my flat.
He could open and close the windows, regardless of the creaking and rattling of the glass panes, so it could be done of course it didn't matter that he is able bodied and quite strong and had to rattle the windows a few times before they opened even the smallest amount. He saw the boiler light (on first time of course) so nothing wrong there, but he would speak to the company when he had lunch with them the following week and get back to me . . . . . at least a year and a half later I'm still waiting!!!!
This week I got a letter from the local council asking me to fill in and return and one of the questions was how much was my rent per calendar month, so here I am on hold waiting for them to deem me important enough to answer and put me through to the housing officer to tell me how much they charge me for this leaky, cold, non weather proofed, rattling windowed flat. So far I have been on hold for over 20 minutes with the constant disembodied voice telling me my call is important and they will answer as soon as they can . . . . . . ohhh wait the one and only person answering the phone finally answered and tells me I have to go through and leave a message and they will get back to me as soon as possible. O.K. I leave a message and call back to speak to repairs about everything else, ohh sorry call the gas repair company we don't have any workmen to do the gas boilers you need to take it up with them. O.K. what about when they hang up on me?? You will need to contact them. O.K. what part of they hang up on me don't you understand??? I will pass you over to my colleague she can tell when they have had calls from you. O.K. at the risk of repeating myself AGAIN they HANG UP ON ME they do not come out they do not answer the call they do not log the complaint, so a fat lot of good it will do checking the system when they don't actually answer my report of problems with the boiler. Ohhh goody she is going to check and call me back . . . . . when is any ones guess however because I'm still waiting on the inspector getting back to me about the thing 2 repair companies ago!!!!!
Every time I call up and ask about the double glazing I'm told "sorry we don't know what we are doing with our flatted stock" which is just a fancy way of telling me they don't care as long as they get the rent money each month. Now this excuse has worn thin (very very thin) since its all I have been told for the last 3 years, while I watch other properties owned by the same housing assoc get new kitchens new central heating new windows, in some cases properties have had 3 sets of double glazing while the tenants of these flats are told they are the only one with the problem of the windows and floors not to mention the boilers.
The properties getting all the work done are in walkable distance to the office so of course they will get the repairs done because they can easily go to the office and complain, which those of us miles away can't. We get fobbed off with excuse after excuse while the HA hope we don't actually speak to each other and see we are not alone in this.
I am sorry councils I unreservedly apologise I was wrong to move out when you actually did the repairs. I had a warm double glazed solid floored home where my children could be children without fear of falling into the downstairs neighbours flat by simply walking to their bedrooms or the bathroom. I did not have to worry about them sleeping near windows, which stupidly is the only place my youngest childs bed can actually go because of a built in cupboard taking up valuable space. I didn't have to worry about my kitchen worktops falling off or the cupboards opening all by themselves.
And now I'm stuck I am not disabled enough to need to move out of the flat, simply because DLA does not take into account going up and down stairs, and I am sat here with a duvet wrapped round me and 3 layers of clothing on because of the howling gale coming through my windows. But its O.K. I have 3 bedrooms and I have a kitchen and a bathroom, who cares that during the winter we all huddle together under duvets in the living room????
We moved in just over 5 years ago, we were over joyed at moving to an area where my children could go outside to play unharassed by drug paraphernalia where they could play in areas designated for them, areas that were safe.
What I didn't know was the lack of care toward tenants by the HA. We pointed out a few repairs when we viewed the flat, ohh no problem those will be done as soon as you take the property. Hogwash.
Here we are 5 years down the line and still the boiler (roughly aged about 15 years old by the many gas engineers sent to service it each year) needs condemned, it only seems to work when there is a howling gale threatening to break the kitchen window, and maybe for long enough for the pilot light to light then it switches itself off and refuses to come back on for at least a week. One repairman told me (a woman who can't reach up to press the button on the boiler) to "press here next to the switch and it will come one as long as you press firmly" yeah O.K. then wait while I get my teenager she can climb up on the work top and risk falling out the window to press firmly on a part of the boiler I didn't see because his body was in the way, or maybe just fix the thing??? Ohh no the repair men got it working for all of 2 minutes therefore it clearly works all the time doesn't it? Even though he saw it go back off and he ordered parts which didn't help make it work more often. Of course this was after the engineer who said "there isn't a drop of water in the boiler I have to re-pressurise it love" then swore loudly and repeatedly because he had BROKEN it 3 weeks no boiler again. When there was snow on the ground and they couldn't be bothered ordering the part as anything other than routine . . . snow on ground no heating no hot water and he wanted to switch my gas supply off???? Never gonna happen at least I could still get the teenager to put the fire on to heat the living room!!!
Now to be honest I wouldn't complain so much but its a combi boiler which means if it wont go on we can't get hot water to wash, never mind heat for the flat.
I still have what I call trampoline floors, which is to say when my youngest child walks down the hall the floor dips and sags. I complained and eventually they sent out joiners, who lifted the old floorboards tutted over and over and swore a few times about "cowboys". I asked outright what they were on about and got the following answer - "the idiots who did the central heating cut through every single joist love that means no matter how we fix this the problem will return because you need the joists repaired and we are here to replace the floorboards", now I have taken out many swear words here the joiners were livid as was I. This repair lasted less than a month.
A few months later I asked the local housing inspector to come out about the many repairs I thought needed, he told me over and over the joiners, gas engineers and various other workmen that had been out to my home had no idea what they were talking about and he who hadn't seen any of the repairs done, and had never worked as a repair man, knew best there was nothing wrong with my flat.
He could open and close the windows, regardless of the creaking and rattling of the glass panes, so it could be done of course it didn't matter that he is able bodied and quite strong and had to rattle the windows a few times before they opened even the smallest amount. He saw the boiler light (on first time of course) so nothing wrong there, but he would speak to the company when he had lunch with them the following week and get back to me . . . . . at least a year and a half later I'm still waiting!!!!
This week I got a letter from the local council asking me to fill in and return and one of the questions was how much was my rent per calendar month, so here I am on hold waiting for them to deem me important enough to answer and put me through to the housing officer to tell me how much they charge me for this leaky, cold, non weather proofed, rattling windowed flat. So far I have been on hold for over 20 minutes with the constant disembodied voice telling me my call is important and they will answer as soon as they can . . . . . . ohhh wait the one and only person answering the phone finally answered and tells me I have to go through and leave a message and they will get back to me as soon as possible. O.K. I leave a message and call back to speak to repairs about everything else, ohh sorry call the gas repair company we don't have any workmen to do the gas boilers you need to take it up with them. O.K. what about when they hang up on me?? You will need to contact them. O.K. what part of they hang up on me don't you understand??? I will pass you over to my colleague she can tell when they have had calls from you. O.K. at the risk of repeating myself AGAIN they HANG UP ON ME they do not come out they do not answer the call they do not log the complaint, so a fat lot of good it will do checking the system when they don't actually answer my report of problems with the boiler. Ohhh goody she is going to check and call me back . . . . . when is any ones guess however because I'm still waiting on the inspector getting back to me about the thing 2 repair companies ago!!!!!
Every time I call up and ask about the double glazing I'm told "sorry we don't know what we are doing with our flatted stock" which is just a fancy way of telling me they don't care as long as they get the rent money each month. Now this excuse has worn thin (very very thin) since its all I have been told for the last 3 years, while I watch other properties owned by the same housing assoc get new kitchens new central heating new windows, in some cases properties have had 3 sets of double glazing while the tenants of these flats are told they are the only one with the problem of the windows and floors not to mention the boilers.
The properties getting all the work done are in walkable distance to the office so of course they will get the repairs done because they can easily go to the office and complain, which those of us miles away can't. We get fobbed off with excuse after excuse while the HA hope we don't actually speak to each other and see we are not alone in this.
I am sorry councils I unreservedly apologise I was wrong to move out when you actually did the repairs. I had a warm double glazed solid floored home where my children could be children without fear of falling into the downstairs neighbours flat by simply walking to their bedrooms or the bathroom. I did not have to worry about them sleeping near windows, which stupidly is the only place my youngest childs bed can actually go because of a built in cupboard taking up valuable space. I didn't have to worry about my kitchen worktops falling off or the cupboards opening all by themselves.
And now I'm stuck I am not disabled enough to need to move out of the flat, simply because DLA does not take into account going up and down stairs, and I am sat here with a duvet wrapped round me and 3 layers of clothing on because of the howling gale coming through my windows. But its O.K. I have 3 bedrooms and I have a kitchen and a bathroom, who cares that during the winter we all huddle together under duvets in the living room????
Friday 29 July 2011
ATOS???? Happy happy joy joy
Today I have received a lovely letter.
ATOS want me to go back and see them.
Now just over a year ago, march 2010 I went for my first "medical" assessment. It said I was able to be back at work within 18 months. Uhuh not going to happen. I appealed based on that, and I won. I won last December.
Today July 29 2011 I get a letter telling me:
"We need some information
Dear Mrs *******,
We have sent you a medical questionnaire with this letter. It is important that you fill in this questionnaire. " and on and on until it says the following:
"What happens next
Depending on the level of you illness or disability you may be asked to come to a medical assessment. The medical assessment will help the Jobcentre Plus make sure you are getting the right amount if benefit. If we need you to come to a medical assessment we will contact you to arrange an appointment."
Medical assessment, erm thought it was a Work Capability Assessment?? I was told by the first ATOS person I saw that "this is not a medical its a test to see how well you will cope in a work situation" well make up your minds for goodness sake its either a "medical assessment" or its not!!!!
This is also worth repeating (well I'm angry and its getting late and its my blog so I'm allowed to repeat myself) there is NOTHING remotely "medical" about the test apart from the person doing the tick box assessment will claim to be medically trained (coff coff not always true coff coff) and quite frankly the mouse clicking could be done by an untrained monkey.
I also noted the thinly veiled threat, "will help the Jobcentre Plus make sure you are getting the right amount of benefit." this translated means of course that ATOS disagree with the Tribunal about the group I am in, and want me to go through the seventh circle of hell that is the appeal again.
Ohh and another little gem, the form I was sent with the letter from ATOS, is a Jobcentre Plus form. Hmmmmm why are ATOS sending the forms?? Why are the JCP not sending the forms???
Well the simple answer is ATOS are doing the dirty work of the JCP, it also saves time if I send the form back to ATOS and not to the DWP. This means the mail room (OK the Royal Mail who open all DWP letters and put them aside to lose all pertinent information) wont have to be employed and cuts out the need to pay actual people to actually deal with claimants , not customers, personal and highly sensitive information.
If I send back any reports from any doctors dealing with my condition, they will be "lost" in the system, and I will have no proof of sending them since proof of posting counts for precisely squat with DWP and ATOS.
Well this time I am ready for them. I know that my condition has not changed, maybe that will miff them off since it was an ATOS employee who said I will be back to work within 18 months. I know this is not about me anymore this is about ATOS being angry at me appealing and more importantly winning last time and I expected this. I have been telling my husband that "there will be an ATOS letter anytime now" for the last month, well they did keep me waiting for a month how inconsiderate of them to make me wait!!!!
I noticed on the letter there is a date to send back the form, the date is the 12 September, now that will make very close to the 18 months that I have heard bandied about that if you appeal and win ATOS make you wait before pulling you in again. All this will mean is again this Christmas I will not be able to relax with my kids, I will not have a decent nights sleep, I will barely eat again. All because again I will have this hanging over my head. I will become snappy with anyone who so much as looks at me the wrong way again. But I am prepared this time.
I will however look forward to the changes supposedly brought about by the Harrington Review, within the "medical assessment" this time since my first two were before the review was published late last year.
The fight goes on . . . . . . . . . . . . . . .
ATOS want me to go back and see them.
Now just over a year ago, march 2010 I went for my first "medical" assessment. It said I was able to be back at work within 18 months. Uhuh not going to happen. I appealed based on that, and I won. I won last December.
Today July 29 2011 I get a letter telling me:
"We need some information
Dear Mrs *******,
We have sent you a medical questionnaire with this letter. It is important that you fill in this questionnaire. " and on and on until it says the following:
"What happens next
Depending on the level of you illness or disability you may be asked to come to a medical assessment. The medical assessment will help the Jobcentre Plus make sure you are getting the right amount if benefit. If we need you to come to a medical assessment we will contact you to arrange an appointment."
Medical assessment, erm thought it was a Work Capability Assessment?? I was told by the first ATOS person I saw that "this is not a medical its a test to see how well you will cope in a work situation" well make up your minds for goodness sake its either a "medical assessment" or its not!!!!
This is also worth repeating (well I'm angry and its getting late and its my blog so I'm allowed to repeat myself) there is NOTHING remotely "medical" about the test apart from the person doing the tick box assessment will claim to be medically trained (coff coff not always true coff coff) and quite frankly the mouse clicking could be done by an untrained monkey.
I also noted the thinly veiled threat, "will help the Jobcentre Plus make sure you are getting the right amount of benefit." this translated means of course that ATOS disagree with the Tribunal about the group I am in, and want me to go through the seventh circle of hell that is the appeal again.
Ohh and another little gem, the form I was sent with the letter from ATOS, is a Jobcentre Plus form. Hmmmmm why are ATOS sending the forms?? Why are the JCP not sending the forms???
Well the simple answer is ATOS are doing the dirty work of the JCP, it also saves time if I send the form back to ATOS and not to the DWP. This means the mail room (OK the Royal Mail who open all DWP letters and put them aside to lose all pertinent information) wont have to be employed and cuts out the need to pay actual people to actually deal with claimants , not customers, personal and highly sensitive information.
If I send back any reports from any doctors dealing with my condition, they will be "lost" in the system, and I will have no proof of sending them since proof of posting counts for precisely squat with DWP and ATOS.
Well this time I am ready for them. I know that my condition has not changed, maybe that will miff them off since it was an ATOS employee who said I will be back to work within 18 months. I know this is not about me anymore this is about ATOS being angry at me appealing and more importantly winning last time and I expected this. I have been telling my husband that "there will be an ATOS letter anytime now" for the last month, well they did keep me waiting for a month how inconsiderate of them to make me wait!!!!
I noticed on the letter there is a date to send back the form, the date is the 12 September, now that will make very close to the 18 months that I have heard bandied about that if you appeal and win ATOS make you wait before pulling you in again. All this will mean is again this Christmas I will not be able to relax with my kids, I will not have a decent nights sleep, I will barely eat again. All because again I will have this hanging over my head. I will become snappy with anyone who so much as looks at me the wrong way again. But I am prepared this time.
I will however look forward to the changes supposedly brought about by the Harrington Review, within the "medical assessment" this time since my first two were before the review was published late last year.
The fight goes on . . . . . . . . . . . . . . .
Wednesday 27 July 2011
I am angry . . . . .. . .
I am angry at my stupid useless body, the pain I am in, the fact that it's tea time and I'm still in my jammies, they are rather nicer Betty Boop ones but jammies none the less. I have done nothing today except sleep. I watch my husband running around doing the housework while I stay stuck on the sofa, unable to do what I once did.
I am supposed to be going out tomorrow, will I be able to muster the strength?? Who knows because I don't!!!
I am sick to my back teeth of having to live with half my brain racing with all the thoughts and the other shouting shut up and rest.
I am angry at having to ask my husband to make me a cup of coffee, my meals. I cannot trust myself with a butter knife to make a sandwich, or the kettle to make the afore mentioned coffee since last time I did try I burnt my foot as I spilled boiling water all over the counter top and myself.
I get irritated over the smallest thing these days, all because I am angry at myself for allowing this to control me and not the other way around.
The last time I saw my plastic surgeon he said "you need to get the infection under control" aye OK then because its as simple as that isn't it?? I have tried all antibiotics that are used for HS, none worked. Well maybe Roacutane might have had it not been such a trial for me and my family, but since it was I had to come off it before anyone could work out if it was working or not.
I rattle when I do manage to walk due to the amount of pain meds I am popping like smarties right now. Pity they don't taste as nice actually!!
Today is becoming normal to me, my bad days are out numbering my good days.
That is why I am angry today I am sick of feeling useless and helpless. I want to be how I was before HS stole my life.
I am supposed to be going out tomorrow, will I be able to muster the strength?? Who knows because I don't!!!
I am sick to my back teeth of having to live with half my brain racing with all the thoughts and the other shouting shut up and rest.
I am angry at having to ask my husband to make me a cup of coffee, my meals. I cannot trust myself with a butter knife to make a sandwich, or the kettle to make the afore mentioned coffee since last time I did try I burnt my foot as I spilled boiling water all over the counter top and myself.
I get irritated over the smallest thing these days, all because I am angry at myself for allowing this to control me and not the other way around.
The last time I saw my plastic surgeon he said "you need to get the infection under control" aye OK then because its as simple as that isn't it?? I have tried all antibiotics that are used for HS, none worked. Well maybe Roacutane might have had it not been such a trial for me and my family, but since it was I had to come off it before anyone could work out if it was working or not.
I rattle when I do manage to walk due to the amount of pain meds I am popping like smarties right now. Pity they don't taste as nice actually!!
Today is becoming normal to me, my bad days are out numbering my good days.
That is why I am angry today I am sick of feeling useless and helpless. I want to be how I was before HS stole my life.
Tuesday 26 July 2011
http://www.nao.org.uk/publicat
if you click on the pdf file for the full report you will find some erm how do I put this ohhh yeah "interesting" reading.
Such little gems as :
"The Department does not yet have a sufficiently detailed model of how it
wants to run in the long term
15 Through having a clear vision of how the organisation will operate in future, senior managers are more likely to be able to prioritise what changes are needed and to explain to staff what their role might be. The approach can be referred to as defining a Target Operating Model. The model is, in effect, a vision of how an organisation will look in future given its objectives and will enable the Department to identify those areas that can be trimmed to reduce costs. The model should be supported by a detailed outline of how it will operate in practice. At the outset the model can be defined in broad terms and include some areas of uncertainty, such as how Universal Credit might be implemented. Such a model should then be refined through regular iteration as the Department’s analysis of information develops. For example, the confirmation in
May 2011 that Universal Credit will initially be delivered by staff from the Department and HM Revenue and Customs means that the model can be refined further."
Which is basically saying the DWP will not be implementing the change over to Universal Credit but the HMRC will. Now these are the people who lost the Child Benefit information a few years back, so excuse me IF I don't hold my breath for ease of transition. The HMRC is also the people who deal with CTC and WTC (Child Tax Credit and Working Tax Credit) also notorious for making mistakes.
It also states it thinks that streamlining services and relying more on online services is the way to go . . . . . a few problems with that pensioners, and anyone who cannot rely upon the internet such as those who use libraries to access the internet, of course that's not even mentioning people with such conditions as Dyslexia who may find it much much harder to do the form filling online and not in person, or even over the phone.
Much as though I have reservations about the "cost reductions" I fear the people who have never claimed before will lose out.
I also fear that those the planned changes are aiming at stopping (the fraudsters) wont be stopped they know the system they can get around it, not so with people who don't even know they can claim that little bit of help such as DLA, or Pensions such as State Pension and Retirement Pension.
According to the ONS own report on spending in 2009/10 the pensions I mention above are under paid to a much higher rate than the overpayments the government is trying to stop.
Also remember that under payment is seen as "administrative error" and often not put right as seen by the earlier ONS report showing £100 million is under paid to one of the pensions alone!!!!
Now when you remember that :
"The vast majority of reductions will be to expenditure on benefits and pensions, rather than administrative spending. These payments are not within the Departments direct control as they must be paid out the those who apply and are eligible. the reductions therefore depend upon the policy changes announced in the June 2010 Budget, the subsequent Spending Review and the March 2011 Budget, reflecting for the most part adjustments in benefit rates and entitlements."
We should be very very afraid. As I understand the above statement, taken from the linked report. Tough cheese if you need we are saying the pot is empty so instead of putting taxes up and creating jobs as the government did when we had the highest deficit right after 1945 and built houses, roads and gave tax breaks to companies coming here, we are going to change the rules of entitlement. That means even though you have paid in all your live tough cheese no pension, mind you that's if you even know to apply in the first place.
I also note that there is to be a headcount reduction, does this mean that staff will go, apparently so, the report says there will be a reduction of Benefit Delivery Centres, now remember these took over from Benefit Agency offices. This of course meant you could no longer take your evidence to the local office and get them to photo copy it and add it to your file there and then, now you sent it to a BDC wait 4 weeks for it to be found and placed on a desk, ignored for a month, and only when you call up and ask if your evidence has been dealt with can you expect some one to actually deal with it.
Also if there are less staff, we will have to wait longer and longer to have any claim seen and read never mind actually processed.
Ohhh and how will the benefits of the people no longer working for the DWP be paid if there is to be reductions to benefits and pensions????
A very sad day indeed I feel. . . . .
if you click on the pdf file for the full report you will find some erm how do I put this ohhh yeah "interesting" reading.
Such little gems as :
"The Department does not yet have a sufficiently detailed model of how it
wants to run in the long term
15 Through having a clear vision of how the organisation will operate in future, senior managers are more likely to be able to prioritise what changes are needed and to explain to staff what their role might be. The approach can be referred to as defining a Target Operating Model. The model is, in effect, a vision of how an organisation will look in future given its objectives and will enable the Department to identify those areas that can be trimmed to reduce costs. The model should be supported by a detailed outline of how it will operate in practice. At the outset the model can be defined in broad terms and include some areas of uncertainty, such as how Universal Credit might be implemented. Such a model should then be refined through regular iteration as the Department’s analysis of information develops. For example, the confirmation in
May 2011 that Universal Credit will initially be delivered by staff from the Department and HM Revenue and Customs means that the model can be refined further."
Which is basically saying the DWP will not be implementing the change over to Universal Credit but the HMRC will. Now these are the people who lost the Child Benefit information a few years back, so excuse me IF I don't hold my breath for ease of transition. The HMRC is also the people who deal with CTC and WTC (Child Tax Credit and Working Tax Credit) also notorious for making mistakes.
It also states it thinks that streamlining services and relying more on online services is the way to go . . . . . a few problems with that pensioners, and anyone who cannot rely upon the internet such as those who use libraries to access the internet, of course that's not even mentioning people with such conditions as Dyslexia who may find it much much harder to do the form filling online and not in person, or even over the phone.
Much as though I have reservations about the "cost reductions" I fear the people who have never claimed before will lose out.
I also fear that those the planned changes are aiming at stopping (the fraudsters) wont be stopped they know the system they can get around it, not so with people who don't even know they can claim that little bit of help such as DLA, or Pensions such as State Pension and Retirement Pension.
According to the ONS own report on spending in 2009/10 the pensions I mention above are under paid to a much higher rate than the overpayments the government is trying to stop.
Also remember that under payment is seen as "administrative error" and often not put right as seen by the earlier ONS report showing £100 million is under paid to one of the pensions alone!!!!
Now when you remember that :
"The vast majority of reductions will be to expenditure on benefits and pensions, rather than administrative spending. These payments are not within the Departments direct control as they must be paid out the those who apply and are eligible. the reductions therefore depend upon the policy changes announced in the June 2010 Budget, the subsequent Spending Review and the March 2011 Budget, reflecting for the most part adjustments in benefit rates and entitlements."
We should be very very afraid. As I understand the above statement, taken from the linked report. Tough cheese if you need we are saying the pot is empty so instead of putting taxes up and creating jobs as the government did when we had the highest deficit right after 1945 and built houses, roads and gave tax breaks to companies coming here, we are going to change the rules of entitlement. That means even though you have paid in all your live tough cheese no pension, mind you that's if you even know to apply in the first place.
I also note that there is to be a headcount reduction, does this mean that staff will go, apparently so, the report says there will be a reduction of Benefit Delivery Centres, now remember these took over from Benefit Agency offices. This of course meant you could no longer take your evidence to the local office and get them to photo copy it and add it to your file there and then, now you sent it to a BDC wait 4 weeks for it to be found and placed on a desk, ignored for a month, and only when you call up and ask if your evidence has been dealt with can you expect some one to actually deal with it.
Also if there are less staff, we will have to wait longer and longer to have any claim seen and read never mind actually processed.
Ohhh and how will the benefits of the people no longer working for the DWP be paid if there is to be reductions to benefits and pensions????
A very sad day indeed I feel. . . . .
http://www.dailymail.co.uk/new
Hmmmmmmm I'm confused today, those who know me will say that's nothing new for me but this is worse I promise.
I know we arent allowed to be homophobic, racist or ageist, and these are good things however it appears to be we can still be disabledist (ok I know not a real word but I'm claiming it as a "me" word) it seems people are allowed to belittle and humiliate disabled people. WHY????
Because its the last taboo, always something that will happen to someone else. Well I'm living proof that it can and does happen to anyone. I never thought I would be as bad as I am, in fact I never thought I would be anything other than able bodied.
So with that in mind why am I surprised when I read the comments posted on the Daily Mail??
The plain misinformation spouted there is alarming to me.
It seems we who claim (and rightly claim) DLA are liars and frauds. No we are disabled that's what the D in DLA stands for.
DLA = Disability Living Allowance.
Not - I think I shall fake an addiction allowance, or I shall go tell my GP I have a bad back and no testing will be done allowance, or as many seem to think some sort of out of work benefit.
DLA is paid to those who are in work as well as those who cannot work, its paid to recognise people need a bit more help than able bodied people. Its there to help with mobility aids, or carers, or whatever extra help a disabled person needs to make their life a little more tolerable.
In my case it helps pay for the extra clothing I need and when I have to go out (for instance to hospital or doctor appointments) pays for my taxis there and back and I can state it does not pay for holidays and days spent in the pub.
It is not easy to get DLA, you are made first of all to fill out a large form, often needing the help of professionals. Stating things such as how you bathe, use the bathroom, get dressed, shop for groceries, cook, feed yourself, how you take your medications - the dosages, the side effects and all manner of other questions which intrude on how you live your life.
Then you get doctors reports.
Then you get checked out, this may be just a phone call or it may be a medical. I was lucky I didn't have to go through the indignity of ATOS calling me a liar for DLA my doctors were believed, but its coming soon when PIP starts.
Then and only then after you have satisfied all the required tests and your doctors have sent back all reports backing your claim, you might get some DLA.
So you see its not easy to fake and pass all the tests, and to make sure everyone IS treated as a fake until the reports and corroboration is approved by the DWP. I may not agree that people should be treated as a fraud but it seems that's what helps keep the fraud rate for DLA at around 0.5%. Lower than any other DWP benefit and certainly much lower than the fraud rate of MPs expenses claims.
I see misinformed people claiming they know fraudsters who have numerous holidays a year, or they have a new car every 3 years.
Well I don't know about the cars since I don't drive nor does my husband, but I suspect, it may be that a newer car is less likely to break down, or need repairs, so may be a condition of getting the mobility car. I am happy to be corrected on that point as I say I don't know for sure because I don't have a car.
As for the holidays well how do they know the person isn't saving hard and doing without other help to have the weekend away twice a year?? Maybe they are saving up their Child Benefit, after all that's is supposed to pay for the needs of the children and not supposed to be used to pay bills. Maybe they have a friend or relative who owns a caravan at a holiday park, maybe they have a friend or relative who is putting them up for a week to give them a change of scenery.
I also noticed a comment by someone saying they know someone who uses a "sympathy stick" (their words for a walking stick not mine) and claims they see the person walking unaided, well I can categorically state I see more elderly people faking when it comes to walking aids than any working age person. Walk down my local high street on a weekday, and see it for yourself. The pensioners practically running down the road in case they miss a bargain at the market, in most cases they walk faster and easier than me, and I don't have any walking aids provided by the NHS. Then I see people claiming they are frail and need to push in front of everyone waiting on a bus, but they are quite capable of carrying a large shopping bag full to over flowing with groceries. What about the pensioners who demanded I move from the disabled seat on the bus, when I was still able to use public transport?? They look as able as I do.
Now here comes the fancy bit so pay attention . . . . . . JUST BECAUSE I CAN'T SEE A DISABILITY DOESN'T MEAN IT'S NOT THERE.
I don't call the DWP fraud line and tell them about the people I have seen racing about with heavy shopping bags, why, because I don't know for a fact that's it's not a great day for them. I don't know they aren't normally housebound, and that's why they are racing so they can be home before the pain medications wear off.
So my advice to the Daily Mail readers - walk a mile in someone else's shoes before you cry fraud.
Maybe the person is a fake maybe not, if you seriously think someone is committing benefit fraud call the claim line it's found on the DWP website, and let them earn their wages, instead of whinging and using the "I know someone is a fake because they have a holiday / I know they are a fake because they can walk unaided when I see them once a week" lines.
Maybe pay as much attention to your own life before you point the finger of fraud. I often wonder how the supposed taxpayers can be sat on websites such as the Daily Mail one, spouting off about all the frauds they know if they are working the 40 or more hours per week they claim to be doing. Maybe I should call them on their stealing from the company they work for. That's what being paid for working and fannying about online not for work is you know, theft.
So who really is the fraud???
Plenty people don't LOOK disabled, I don't, but I am. Come visit me for a day see how able I am to do the things you can. Have your eyes opened to how much I rely on other people for basic things such as bathing, eating and drinking, dressing, walking and most importantly taking my medication. Come see my finances, see how "rich" I am, see how much of a fraud I am.
Sadly I doubt it will change any, even one, of the Daily Mail readers minds.
Years ago I heard someone say "a lie gets half way round the world before the truth has its shoes on" and it's true and it seems that if a lie is repeated often enough then it gets stuck in the subconscious of the public. So the Daily Mail and other so called newspapers of its ilk repeat the lie that DLA claimants are frauds and the public start feeling resentful of disabled people, that leads to hate crimes towards disabled people.
Don't forget it's alright to hate us, remember its alright to call us frauds, the papers say so. It doesn't seem to matter that you actually don't know the millions of people who are disabled, you "know" someone who is a junkie who has a mansion, 3 holiday homes, brand new cars and not forgetting the obligatory 50 inch plasma T.V.!!!
Hmmmmmmm I'm confused today, those who know me will say that's nothing new for me but this is worse I promise.
I know we arent allowed to be homophobic, racist or ageist, and these are good things however it appears to be we can still be disabledist (ok I know not a real word but I'm claiming it as a "me" word) it seems people are allowed to belittle and humiliate disabled people. WHY????
Because its the last taboo, always something that will happen to someone else. Well I'm living proof that it can and does happen to anyone. I never thought I would be as bad as I am, in fact I never thought I would be anything other than able bodied.
So with that in mind why am I surprised when I read the comments posted on the Daily Mail??
The plain misinformation spouted there is alarming to me.
It seems we who claim (and rightly claim) DLA are liars and frauds. No we are disabled that's what the D in DLA stands for.
DLA = Disability Living Allowance.
Not - I think I shall fake an addiction allowance, or I shall go tell my GP I have a bad back and no testing will be done allowance, or as many seem to think some sort of out of work benefit.
DLA is paid to those who are in work as well as those who cannot work, its paid to recognise people need a bit more help than able bodied people. Its there to help with mobility aids, or carers, or whatever extra help a disabled person needs to make their life a little more tolerable.
In my case it helps pay for the extra clothing I need and when I have to go out (for instance to hospital or doctor appointments) pays for my taxis there and back and I can state it does not pay for holidays and days spent in the pub.
It is not easy to get DLA, you are made first of all to fill out a large form, often needing the help of professionals. Stating things such as how you bathe, use the bathroom, get dressed, shop for groceries, cook, feed yourself, how you take your medications - the dosages, the side effects and all manner of other questions which intrude on how you live your life.
Then you get doctors reports.
Then you get checked out, this may be just a phone call or it may be a medical. I was lucky I didn't have to go through the indignity of ATOS calling me a liar for DLA my doctors were believed, but its coming soon when PIP starts.
Then and only then after you have satisfied all the required tests and your doctors have sent back all reports backing your claim, you might get some DLA.
So you see its not easy to fake and pass all the tests, and to make sure everyone IS treated as a fake until the reports and corroboration is approved by the DWP. I may not agree that people should be treated as a fraud but it seems that's what helps keep the fraud rate for DLA at around 0.5%. Lower than any other DWP benefit and certainly much lower than the fraud rate of MPs expenses claims.
I see misinformed people claiming they know fraudsters who have numerous holidays a year, or they have a new car every 3 years.
Well I don't know about the cars since I don't drive nor does my husband, but I suspect, it may be that a newer car is less likely to break down, or need repairs, so may be a condition of getting the mobility car. I am happy to be corrected on that point as I say I don't know for sure because I don't have a car.
As for the holidays well how do they know the person isn't saving hard and doing without other help to have the weekend away twice a year?? Maybe they are saving up their Child Benefit, after all that's is supposed to pay for the needs of the children and not supposed to be used to pay bills. Maybe they have a friend or relative who owns a caravan at a holiday park, maybe they have a friend or relative who is putting them up for a week to give them a change of scenery.
I also noticed a comment by someone saying they know someone who uses a "sympathy stick" (their words for a walking stick not mine) and claims they see the person walking unaided, well I can categorically state I see more elderly people faking when it comes to walking aids than any working age person. Walk down my local high street on a weekday, and see it for yourself. The pensioners practically running down the road in case they miss a bargain at the market, in most cases they walk faster and easier than me, and I don't have any walking aids provided by the NHS. Then I see people claiming they are frail and need to push in front of everyone waiting on a bus, but they are quite capable of carrying a large shopping bag full to over flowing with groceries. What about the pensioners who demanded I move from the disabled seat on the bus, when I was still able to use public transport?? They look as able as I do.
Now here comes the fancy bit so pay attention . . . . . . JUST BECAUSE I CAN'T SEE A DISABILITY DOESN'T MEAN IT'S NOT THERE.
I don't call the DWP fraud line and tell them about the people I have seen racing about with heavy shopping bags, why, because I don't know for a fact that's it's not a great day for them. I don't know they aren't normally housebound, and that's why they are racing so they can be home before the pain medications wear off.
So my advice to the Daily Mail readers - walk a mile in someone else's shoes before you cry fraud.
Maybe the person is a fake maybe not, if you seriously think someone is committing benefit fraud call the claim line it's found on the DWP website, and let them earn their wages, instead of whinging and using the "I know someone is a fake because they have a holiday / I know they are a fake because they can walk unaided when I see them once a week" lines.
Maybe pay as much attention to your own life before you point the finger of fraud. I often wonder how the supposed taxpayers can be sat on websites such as the Daily Mail one, spouting off about all the frauds they know if they are working the 40 or more hours per week they claim to be doing. Maybe I should call them on their stealing from the company they work for. That's what being paid for working and fannying about online not for work is you know, theft.
So who really is the fraud???
Plenty people don't LOOK disabled, I don't, but I am. Come visit me for a day see how able I am to do the things you can. Have your eyes opened to how much I rely on other people for basic things such as bathing, eating and drinking, dressing, walking and most importantly taking my medication. Come see my finances, see how "rich" I am, see how much of a fraud I am.
Sadly I doubt it will change any, even one, of the Daily Mail readers minds.
Years ago I heard someone say "a lie gets half way round the world before the truth has its shoes on" and it's true and it seems that if a lie is repeated often enough then it gets stuck in the subconscious of the public. So the Daily Mail and other so called newspapers of its ilk repeat the lie that DLA claimants are frauds and the public start feeling resentful of disabled people, that leads to hate crimes towards disabled people.
Don't forget it's alright to hate us, remember its alright to call us frauds, the papers say so. It doesn't seem to matter that you actually don't know the millions of people who are disabled, you "know" someone who is a junkie who has a mansion, 3 holiday homes, brand new cars and not forgetting the obligatory 50 inch plasma T.V.!!!
The following was posted on the 5th of July on my now deleted group on facebook. . . .
I have been reading comments on the Guardian article about the leaked letter from Mr Pickles (ohhh too easy but a very apt name it seems) department about the 40,000 households who could be made homeless as a direct result of the Housing Benefit cap.
Over and over I see people say - well if you cant afford to live there then move. These are the same people who shouted from the rooftops - if you cant afford children don't have them, when the Child Benefit changes were brought in.
Ok I will tell you about me shall I??
Sitting comfortably?? I'm not but lets begin anyway . . .
My husband and/or I have always worked to support ourselves then ourselves and our children. We until recently never had a credit card, in fact for most of our marriage we didn't even have a debit card.
We paid cash, if we needed something we saved up.
Then I fell ill.
I was working when I got very ill, the hours I worked meant it wasn't easy to see my GP. As a result I bought over the counter medications and replaced my clothing as and when required. Costing me and my family money we didn't really have to spare.
I was on SSP (stat sick pay) woefully inadequate for covering periods of sickness but that's a whole other late night ramble.
I finally got POMs (prescription only medications) these are usually a much higher dosage than over the counter medications, and have much more side effects.
Now one of the symptoms of HS is the constant leakage of puss like liquid from the affected area. This stains clothing and will eat away at the fabric of the clothing, rendering the clothing unwearable and not even useful as a window washing rag.
When I was working I had to replace this clothing at considerable cost to me, I had little state help other than WTC and CTC. Both paid at a low rate, combined under £120. However this money did help to cover the costs such as my childrens school meals, school trips, school clothing and shoes.
My wages had to pay for the rent, council tax, electricity, gas, food, travel to and from work, TV license and household insurance. Leaving me in debt to pretty much everyone except my landlord.
I live in what is called Social Housing. My landlord is a housing association which is a charity. I pay a lower rate than friends who live in council flats of similar size.
Now a little about how rent is collected.
Landlords, including the council expect you to be at least one payment in front. So council tenants must be one fortnight in advance as their rent is paid fortnightly and I must be one month in advance since I pay per calendar month.
However with HB the rent is paid as all benefits are in arrears. So every month I am in arrears with my rent according to the rules. On the first of the month I am expected to have paid for that month, the council will pass on HB at the end of the month.
Now I want you to do me a favour . . . go check what is in your bank accounts . . . all of them . . . how much savings do you have??
Can you calculate how much you NEED to live on each month if you were to lose your job at the end of this month??
How long will your savings cover?? One month, two, maybe six months if you are very forward planning.
A few months back I read somewhere (dammed if I can remember though) that most households are 2 pay checks away from homelessness.
I will repeat for the hard of understanding. 2 PAY CHECKS AWAY FROM HOMELESSNESS.
Still think I'm a scrounger?? What about when your moneys all gone and you HAVE to claim benefits??
Do you think you can live on fresh air and scenery for the 12 weeks on average it takes to process a benefits claim??
How are you going to pay the bills?? How are you going to feed your household?? How are you going to look for work when you have no money to put petrol in your car and go looking?? What about when you have worn a hole in the expensive shoes and cant afford to repair or replace??
Well let me tell you my husband and I have stuffed newspaper (the free one cant afford to buy them) in our shoes, we have gone without food so the children didn't have to. We did go out with the children leave them at school, and looked for jobs until it was time to collect the children again.
People sneer at others who work as cleaners. WHY????? Simple "its not something to aspire to" they say. OK well why not?? My husband worked during the day and I worked as a cleaner in the evenings. Simple we kept our outgoings as low as we could and our children were looked after.
Now if the proposed changes are bought in, (remember there is still time for a uturn) and the very people who were in the same position as me have to do what we did and move to find work, how are they going to look after their children?? No family and friends around them to help. No local knowledge of the new area, so how do they find suitable people to look after the children, and please dont say childminders and nurseries, there may not be any in the small towns and villages they had to move to.
Ohh and council run nurseries the ones remember we were all told our children would have places at by age 3?? Well they are half day ohh the generosity, 2 hours per day, unless you are in greatest need then and only maybe if you have the Social Work involved will you get the whole day placements. ohh and remember just because you work anti social hours is NOT a great need. You will be expected to find alternative arrangements and have you child picked up on time by an adult.
So you have moved, found a job, uprooted your children, and for what, to pay out more than you will earn in your new part time job in childcare. Another thing if your children are all over 5 you will probably find (as I did when I asked) that most childminders will not take them. Not all schools have after school clubs, so what do you do with the children under 14, who cannot legally be left alone for longer than it takes to take a bag of rubbish to the street??
I have been reading comments on the Guardian article about the leaked letter from Mr Pickles (ohhh too easy but a very apt name it seems) department about the 40,000 households who could be made homeless as a direct result of the Housing Benefit cap.
Over and over I see people say - well if you cant afford to live there then move. These are the same people who shouted from the rooftops - if you cant afford children don't have them, when the Child Benefit changes were brought in.
Ok I will tell you about me shall I??
Sitting comfortably?? I'm not but lets begin anyway . . .
My husband and/or I have always worked to support ourselves then ourselves and our children. We until recently never had a credit card, in fact for most of our marriage we didn't even have a debit card.
We paid cash, if we needed something we saved up.
Then I fell ill.
I was working when I got very ill, the hours I worked meant it wasn't easy to see my GP. As a result I bought over the counter medications and replaced my clothing as and when required. Costing me and my family money we didn't really have to spare.
I was on SSP (stat sick pay) woefully inadequate for covering periods of sickness but that's a whole other late night ramble.
I finally got POMs (prescription only medications) these are usually a much higher dosage than over the counter medications, and have much more side effects.
Now one of the symptoms of HS is the constant leakage of puss like liquid from the affected area. This stains clothing and will eat away at the fabric of the clothing, rendering the clothing unwearable and not even useful as a window washing rag.
When I was working I had to replace this clothing at considerable cost to me, I had little state help other than WTC and CTC. Both paid at a low rate, combined under £120. However this money did help to cover the costs such as my childrens school meals, school trips, school clothing and shoes.
My wages had to pay for the rent, council tax, electricity, gas, food, travel to and from work, TV license and household insurance. Leaving me in debt to pretty much everyone except my landlord.
I live in what is called Social Housing. My landlord is a housing association which is a charity. I pay a lower rate than friends who live in council flats of similar size.
Now a little about how rent is collected.
Landlords, including the council expect you to be at least one payment in front. So council tenants must be one fortnight in advance as their rent is paid fortnightly and I must be one month in advance since I pay per calendar month.
However with HB the rent is paid as all benefits are in arrears. So every month I am in arrears with my rent according to the rules. On the first of the month I am expected to have paid for that month, the council will pass on HB at the end of the month.
Now I want you to do me a favour . . . go check what is in your bank accounts . . . all of them . . . how much savings do you have??
Can you calculate how much you NEED to live on each month if you were to lose your job at the end of this month??
How long will your savings cover?? One month, two, maybe six months if you are very forward planning.
A few months back I read somewhere (dammed if I can remember though) that most households are 2 pay checks away from homelessness.
I will repeat for the hard of understanding. 2 PAY CHECKS AWAY FROM HOMELESSNESS.
Still think I'm a scrounger?? What about when your moneys all gone and you HAVE to claim benefits??
Do you think you can live on fresh air and scenery for the 12 weeks on average it takes to process a benefits claim??
How are you going to pay the bills?? How are you going to feed your household?? How are you going to look for work when you have no money to put petrol in your car and go looking?? What about when you have worn a hole in the expensive shoes and cant afford to repair or replace??
Well let me tell you my husband and I have stuffed newspaper (the free one cant afford to buy them) in our shoes, we have gone without food so the children didn't have to. We did go out with the children leave them at school, and looked for jobs until it was time to collect the children again.
People sneer at others who work as cleaners. WHY????? Simple "its not something to aspire to" they say. OK well why not?? My husband worked during the day and I worked as a cleaner in the evenings. Simple we kept our outgoings as low as we could and our children were looked after.
Now if the proposed changes are bought in, (remember there is still time for a uturn) and the very people who were in the same position as me have to do what we did and move to find work, how are they going to look after their children?? No family and friends around them to help. No local knowledge of the new area, so how do they find suitable people to look after the children, and please dont say childminders and nurseries, there may not be any in the small towns and villages they had to move to.
Ohh and council run nurseries the ones remember we were all told our children would have places at by age 3?? Well they are half day ohh the generosity, 2 hours per day, unless you are in greatest need then and only maybe if you have the Social Work involved will you get the whole day placements. ohh and remember just because you work anti social hours is NOT a great need. You will be expected to find alternative arrangements and have you child picked up on time by an adult.
So you have moved, found a job, uprooted your children, and for what, to pay out more than you will earn in your new part time job in childcare. Another thing if your children are all over 5 you will probably find (as I did when I asked) that most childminders will not take them. Not all schools have after school clubs, so what do you do with the children under 14, who cannot legally be left alone for longer than it takes to take a bag of rubbish to the street??
My first late night ramble:
I first found a lump under my arm when I was just short of my 21st birthday, and when it had been there for a few days I went to see my GP. Who told me it was just an ingrown hair and nothing to worry about, it would sort itself out in time.
It did go away, then came back worse than before. Again I went to the doctor again I was told it was nothing to worry about and again it did go away.
I became very aware of my personal hygene routine making sure I washed twice daily if not more, and making sure I was shaving my underarms more frequently so as to stop the hairs becoming ingrown as the doctor had told me to do.
After a few months of this lump appearing and disappearing, it again came back but when I was drying myself after bathing it burst leaking a pus like liquid, and smelling a rather foul smell (best described as yeasty) I again washed even though it was painful and left the skin very red and raw looking.
Again I went back to my GP and he said it was a mild infection caused by over washing (erm remember you told me to wash more often!!) so a course of anti biotics was prescribed.
I took the full course (as someone who has nurses for parents I know the dangers of not finishing a course of anti boitics) and noticed more of the lumps appearing even though I was taking the medication.
I met and married my husband during all this, and we moved from Edinburgh to Glenrothes in Fife, and we changed health centres.
I had gall stones and since that was more painful and had a bigger impact on my life than the lumps did I was more concerned with easing that pain and discomfort, that was until I had my date for my gall bladder removal and my GP asked if I wanted him to know about anything else.
I lifted my right arm and said "do you know what these are" the lumps were no longer just small lumps but long scarring which took up most of my armpit.
He looked confused and started flipping back the pages of my medical records, and said "when did you have the operation or procedure?" I answered that at that time the only operations I had had was 2 c sections for the births of my children and was about to have the gall bladder removed.
I was asked what had made the cuts, which confused me until the doctor explained that to him it looked like I had scar tissue all over my right armpit and some on my left armpit, I explained about the other GP telling me it was ingrown hairs and this GP said he would refer me to the Dermatologist for treatment.
He than gave me a prescription for something he called "holistic treatment" to take the swelling down. What I did not know at the time was whatever this was it was not a treatment unless you count a placebo as a treatment.
After a few weeks of taking the pills (stick under tongue and leave to disolve do not eat drink smoke or crunch) I got more lumps appearing. So I stopped taking them on the orders of another doctor who had never heard of the pills.
I waited over a year for the appointment to see a Dermatologist, who took one look at my armpit and said I had a textbook case of and rushed out some fancy words I had no idea what she was saying, until she said "we can treat this sucessfully".
Fantastic I thought never realising that treat and cure are NOT the same thing, and all I was going to do now was be another test subject for some very dangerous treatments. I was given more anti biotics and dressings for when the lumps burst.
I found out around this time that the pus like liquid that leaked out stained clothing and eventually wore them out along with the repeated scrubbing of hand washing and machine washing to rid the clothing of the stains.
None of the treatments worked until I was given a drug called Roacutane which I was told was linked to suicides and depression, and under no curcumstances was I to allow myself to become pregnant, as it would mean I would have to have an abortion due to the drug causing abnormalities in the developing fetus. Since I do not personally believe in abortion I went onto the pill and became paranoid about my husband and I having sex just in case I fell pregnant.
I already had 2 daughters with the youngest at that time in nursery, and the oldest at school full time. So my husband and I came to the decision not to have anymore children, given the fact that I had very severe post natal depression which got worse after each child.
I took the drug as prescribed going each month for a pregnancy test at the hospital and getting the following months presciption. In Scotland the drug can only be given by a hospital doctor and filled by a hospital pharmacy due to patients having to be monitored closely while on it.
I was working as a cleaner at that time and had to travel home (by public transport) after 8pm, often in the dark.
After a while I noticed I was losing some of my vision at night and being blinded by car headlights while waiting for the bus to arrive. My husband also noticed I became very short tempered and snappy with him and the children often over the smallest and silliest of things.
I called the dermatology clinic and explained my concerns and was told to stop taking the drug right away, and go back in the following month for a revue and change of medication.
The doctor was unhappy I had not given the drug a chance to work better, even when I explained my situation, she seemed to be happier with me a quivering wreck shouting at my family for not eating their meals as soon as I had cooked them, not to mention the dangerousness of night blindness.
I was then put on other anti biotics Erythromicin being one and a few others none of which alone worked to help keep the HS under control. I was also given pain medication for the first time around this time. I had given up all the pain medication when I had my gall bladder removed as I did not need it for the HS until a few years later.
My GP seemed bemused by the condition and left it up to the hospital doctor to deal with and took no interest other than to give out repeat prescriptions for my medication.
My family again moved, so we again changed health centres. This time my GP seemed interested and wanted to help me get the HS under control.
I was then told that eventually I would need an operation to remove the scar tissue and referred to a plastic surgeon who wanted me to lose a considerable amount of weight. OK I am fat I know this but being fat has absolutely no relavance to HS.
I lost my job and became mildly depressed for a few years until I got another job.
I explained to my employers about my condition and how it limits my movement of my right arm at times. No problem I was told we can work round that.
I was working in the highly stressful and target led call centre business. I didnt know at the time that even though I was good at my job I was making the HS worse much faster than had I not gotten that job.
I was reading a magazine and saw an article on HS where the woman was like me and overweight, had her children young, and had the same lumps leaking the same sounding pus like liquid. She had had an operation to remove the infected area and the skin was left to grow back with no graft done to help the regrowth, but the condition came back within 2 years. She like me had been on most of the anti biotics known to medicine, with none working effectively.
I now felt very depressed knowing there was no cure , and remembered back to the first appointment with the dermatologist when she told me HS could be treated and remembered no mention of a cure.
By the time I had been working at the call centre 4 months I was suffering so badly I could barely sit comfortably at my desk and had to have my right armpit dressed twice daily, I was also getting the lumps in my genital area for the first time, as well as along my c section scar and over my stomach breasts and tops of my legs.
I was still going back and forward to the hospital and getting new creams and dressings to use, all with varying degrees of sucess. None gave me back my body which by now I felt was being taken over by this horrible condition.
I began noticing the pus like liquid constantly leaking from my armpit and I was more aware of the smell, even though no one commented I was very aware every time I stretched my right arm out or leaned over my computer at work.
In fact by this point I was so aware I changed how I dressed and was always covered from neck to wrist and wore as loose fitting tops as I could. I also carried wipes in my bag so I could wipe the area whenever I felt I needed to, which was very often.
The call centre was losing money and we found out right after Christmas that we may not have jobs left for much longer, the stress of worrying about how I was going to look after my family made the HS worse, to the point I couldnt move my right arm at all wothout pain and I could not sit comfortably at all.
I went to see my GP to get more pain medication (or stronger medication) to allow me to carry on working, my GP took one look at me with tears running down my face and asked me if I worked, yes, well not for the next 2 weeks you dont she said, and handed me a sick line to give to my work.
She also gave me more pain medication so I was now on co-codamol and tramadol. I discovered that even though I had taken both drugs while I had gall stones, I was now hallucinating with the tramadol.
I could not take the full dose in one go I had to take half the dose and then 2 hours later the other half.
Giant rats climbing the walls of my home is actually quite scary, as is the floor moving and the carpets trying to consume the children!!!
I was also sent back to the hospital for different dressings and medication, the dermatologist however told me I had been on all the medications she felt would help and other than long term anti biotics there was little more she could do for me.
I was also sent back to see the plastic surgeon, and even though I had not lost the weight he wanted me to he agreed I needed the operation and he would see me as soon as an appointment became free.
I was then told the only operation done was a skin graft. The infected tissue would be removed and skin taken from my thigh would replace it.
I was overjoyed to hear I would be getting some relief, and forgot to ask anything about the operation and recovery period.
I was still being signed off work by my GP and again was given more pain medication since the others were no longer working as they had when I had gall stones. I was now on co-codamol, Tramadol and diclofenac.
I was also told that it was possible that if I rotated 2 anti biotics every 3 months they might not stop working as quickly and I may be able to get the infection under control.
I was also told I was at risk of diabetes, and started on a medication called Metformin, which is used as a polycystic ovary treatment, and has had some success with helping people lose weight and can also be used as a preventative measure to stop people becoming diabetic later in life.
I lived a few months on my recliner chair, sleeping when I could get comfortable to doze for a few minutes, in an upright position because lying down caused pain in my armpit.
I bathed using a bath emollient called Dermol 600 and washed using a cream called Dermol 500, I could no longer raise myself up using my arms to get out the bath and needed my husband to help me. I couldn't dress myself alone because anything touching my skin or pulling any skin near the affected areas made me cry out in pain.
I became housebound only going out to see my GP for more pain medication.
My husband took over almost all the care of my children (and myself) the housework, shopping, bill paying, getting less and less sleep himself as he made sure I was as comfortable as possible and had all my medication and a drink near me before he went to bed for a few hours to start it all over again the next day.
If my husband was out my oldest child became my helper often making me drinks, helping me to the bathroom which is not what an 11 year old child should be doing by my way of thinking.
I started to resent my husband for being able to just walk up to the shops or collect my youngest child from school, I tried not to show it but every time he left the house for whatever reason I felt trapped and useless.
I felt useless as a wife and mother, it should have been me collecting my daughters, me getting the milk and bread, doing the washing, hanging the washing outside to dry, you name it I felt useless at it. I couldn't even cuddle up to my husband and watch a DVD never mind anything else with him.
After what seemed like forever (in reality 4 months) the call centre I worked for closed making us all redundant and I had to apply for Employment and Support Allowance from the department of work and pensions.
When we had been told we were being cut from whatever our normal working hours were to 9 hours per week I had gone to the JobcentrePlus and asked if my family were eligible for any help. The gentleman I saw asked me to sit down and he watched me perch on the edge of the seat and wince in pain, he asked me if I was always like this, yes i said he handed me a rather large form to fill in and send back, telling me to get CAB to help me. The form was a Disability Living Allowance form.
This made me feel even worse because to me, disabled people were those who had limbs missing or could not walk, people with Spina Bifida that sort of thing not people like me who have a skin condition, caused by god only knows what.
However when I told my GP she agreed it wouldn't hurt to fill in the form the worst that could happen was I would be told I wasn't eligible and I would be no worse off than I already was. So I went to CAB and they filled int he form with my answers and I was awarded DLA.
I was given a date for my operation of May 2009 in St Johns hospital in Livingston, not Fife or Dundee as I expected but a hospital a fair distance from my home.
I explained all this to the DWP when I put in the claim for ESA and I was told don't worry we "may" need you to go for a medical but since I was due to go for an operation I was told that my medical records should be enough.
This is where my story becomes very strange and stressful for all involved.
I had my operation the graft took 90% which I told is fantastic and better than the average of 60-70% I spent just over a week in hospital.
When I saw my graft site I wasn't shocked but when I saw the armpit I was mortified. It looked like I had been bitten by a shark!!
I had nerve damage from the depth the surgeon had to go in my armpit and I was told the feeling would never return to the muscles it was an unfortunate side effect of the operation but I was told it was better than not being able to use my right arm at all.
I was sent a letter telling me to go into the local Jobcentre for an interview, and even though it was only a few weeks since the operation I went with my husband. We were told I should not have kept the appointment, no of course I should have I was able to travel the short distance with help and support.
We were then told the next appointment I would have to go to would be the medical and I would get a letter telling me when and where.
The next letter I got was telling me to go see a company called Triage, off we went again. A few problems were raised during this meeting.
1) Scowling at my husband as if I shouldn't have taken him
2) Kept waiting long past the appointment time so the staff could discuss their breakfast
3) Refusal to explain exactly what the appointment was for after being told it was NOT the medical
4) Reluctance to explain anything, I mean I'm only the "customer" and don't need to know why they want a list of my medication when they aren't medically trained
Appointment deferred for a few months (they claimed 6 but August to December is not 6 months) same process again and deferred for a few weeks, January guess what same process. Except I was told I had refused the medical and would have to find work, erm you sure?? I have never refused to attend any appointments send out by the DWP or any of the sub contractors.
I had not been sent any letters other than the ones from Triage at this point and when that was explained (again) I was given a number to call (after 2 tries the woman said it was very busy and she wasn't trying again) and told to ask why I had not had the medical. Her tone of voice made it very obvious that she thought it was my fault since the system would never forget someone or not send out a letter would it??
It took me 3 days to get through on the number given to me and get an answer as to why I had not had my medical, apparently my file had slipped through the cracks and no one noticed, how very professional!!
I was then sent a questionnaire, by a company called ATOS now anyone wishing to know anything about ATOS should google the following - ATOS not fit for purpose.
It makes very interesting and sometimes uncomfortable reading.
Basically the questionnaire was asking things like can you raise your arms above your head, can you make and carry a mug of a drink, and can you propel yourself (either walk or with aids) 100 yards. This is what they base your ability to work on, now excuse me for being thick but what job involves you raising your arms above your head walking 100 yards and making a mug of a drink and nothing else??
Ohh and I nearly forgot how exactly does measuring around someones thighs have any baring whatsoever on their ability to work?? I am still waiting (more than a year later) for the explanation to that little gem.
I took a note of the "doctor"'s name and checked it on the GMC website where you can check if someone is in fact a doctor, no her name wasn't there unless she was 40 years older than she looked (making her almost 90) or a lot younger than she looked (making her just qualified) she herself said she had 20 years of GP experience, so neither name could possibly be her. Also note the following the entire "medical" took 21 minutes, this will become clear later as woefully unsuitable.
When I was again sent a letter from Triage, this one a lovely threatening one telling me I would lose my ESA if I didn't keep the appointment, which is WRONG they cannot stop you getting any benefits from the DWP what they can do however is stop you getting any back to work allowance added on top, I was not receiving this as I hadn't been placed in any group at that point, so the point of the letter was just a scare tactic, used to make you feel you will fail and not to bother trying to get any help you are entitled to as someone who has been told you need.
Another lovely gem Triage tell you (and deny when called on it) is that 93% fail the medical - wrong almost 70% (when taken into account the people who stop the claim before it reaches appeal stage) fail it even terminally ill people with only a few months to live, and at the appeal stage 40% are upheld by the appeals board for the claimant.
So quite frankly ATOS are doing a fantastic job of denying claims, which as I understand it, the DWP are asking them to do. Fail as many as possible so we can make them all find unsuitable and sometimes dangerous jobs where the workforce are at risk, but its OK they are off the official figures as being unemployed.
Anyway I called the DWP and asked when I would know the results of the "medical" and was told the report was sitting on someones desk and she would chase it up for me and send me a copy, which I received the following day.
FULL OF ERRORS.
I can walk for a distance without stopping - really I was not observed walking more than 10 metres (not 100 yards)
I can dress myself - really I and my husband explained I did not do that as it hurt too much
I look after my children - by being in the home yes technically I am looking after my children but the last time I have gotten down and played on the floor was months earlier
I was not doing things due to wanting to avoid pain - duh who is gonna sit out in the mid day sun when they have a migraine??? Most would stay in a dark room until the pain subsides, but in the "doctors" opinion that's wrong.
Ohh and the "doctor" who signed the "medical" report was NOT the name of the woman who actually saw me, ohh and her name wasnt on the GMC website list of registered doctors in the UK either.
I have since found out that ATOS have less than 1400 medical staff (doctors nurses and physiotherapists) to do the DWP ESA medicals. This I got from the Harrington Review which is available online for free.
According to ATOS and DWP information you are supposed to be seen by someone who has experience of your conditions, OK I can prove that wrong, we had to explain what HS was and the woman looked blankly at me as if I was talking double Dutch!!
I also wonder how exactly someone can see an area they pass a judgement on when they cannot actually see that area? The woman (I refuse to call her a Doctor since to me a medical professional is exactly that PROFESSIONAL she was anything but that) stood behind me and stated on the report she had seen lesions, OK please tell me how you can see through a body? Are ATOS staff fitted with ex-ray vision?? Can they suddenly see an area without looking at it??
WOW they must be fantastic because every other medical professional who has ever treated me has had to actually LOOK at the affected area.
I called up Triage and told them I would be appealing the decision since I believed it was full of errors and incorrect, I was told I would HAVE to do the 5 month course so I might as well get it over and done with.
Two problems with that.
1) If I do the course then I am agreeing with the ATOS findings - I was not
2) How was I supposed to get to the course when I couldn't move off the chair in my living room without considerable pain??
I again had a flare up (as I call it when the HS becomes very bad and more painful that normally) and went back to see my GP, who by the point was doing her best to get me on drug trials and experimental drugs which may or may not help, as she put it I was already in acute pain and anything was worth a try, and to be brutally honest by that point I didn't care I wanted to die, rather than keep fighting for a measly amount from the DWP.
My GP was concerned and asked me tell her everything, when I got to the part about Triage telling me 93% fail the "medical" my GP told me she personally had patients (naming no names) that had signed themselves back to work when in her opinion they were not ready to do so, but she never knew why and what I was telling her made sense now.
That I find very worrying.
These people are given bonuses for getting people who in their healthcare professionals opinion are NOT fit for work back to work which often makes conditions much worse, and I thank god I am not suffering with a more severe mental illness, which could lead to a complete breakdown.
I was very ill by this time but I was again sent for another "medical" with ATOS nothing was explained to me as to why I was again being sent and I called them up and stated I was appealing the original report, I was told tough you must go to the interview because if you do not your benefits will be stopped for up to 26 weeks. Again this is a scare tactic and they cannot stop, all they can do is place sanctions on the extra money received for being in a group, which again I was not in at that point.
I again went in but this time I decided they were not going to take my answers out of context and I was going to record the interview.
They don't like that and the woman spent longer arguing with me about my not being able to record the interview than she did ticking the boxes on the computer programme. I however refused to give in and had the dictaphone recording the whole time.
Strangely enough when I received my copy of the report ever answer was exactly as I had answered it.
I then was sent a letter telling me I was being placed in the WRAG (Work Related Activity Group) which meant they expected me to find work after completing a 5 month course, even though I was again too ill to go to the appointments, I was sent more threatening letters by Triage and ATOS.
I was running up a rather large telephone bill due to all the calls back and forward to all the various departments of the DWP ATOS and Triage, because all use national call lines not local call so it costs more and you cannot call them from a JobcentrePlus office but only from your mobile or land line.
At one point I was worried I would not be able to pay my phone bill and would lose connections with the outside world, and support groups I had become a member off.
I filled in the appeal form explaining I believed the first "medical" was done incorrectly and none of my medical records were taken into account, and I received a letter back informing me that I would not have my appeal heard for a number of months, it would be heard just before Christmas. This meant I was still fighting Triage who were doing as the DWP informed them, and the DWP were basing the decision on ATOS reports.
This is NOT the way it is supposed to happen the ATOS reports are supposed to be a small part of the overall decision taken by someone called a decision maker who is supposed to have access to ALL medical reports (which I gave permission for) but I'm my case it seems all the decision maker did was rubber stamp the ATOS report making it the decision made.
I again went to a Triage appointment (after yet another threatening letter being sent out) and was seen by a woman who was part of the management team at the Glenrothes office, she told me she was deferring me until the appeals board had made a decision, and could I inform them as soon as I knew since the DWP waited until there was a few decisions and sent them all out together, which apparently means I would have the information before anyone else. Yes I said since it was in my best interest to make sure that they all knew as soon as I did.
I continued with my treatments and continued having minor flare ups until the December when I again had a bigger and more painful flare up needing my husband to do more and more for me including helping me to get in and out of the bath, and washing my hair. Which by that time I had cut very short so I wouldn't have to get my husband to continuously look after.
We (my husband and I) went to the appeals panel.
It was a 2 person panel, a female doctor and a male lawyer, there was also another woman who took notes and sat at a different table to the panel and my husband and I.
The lawyer explained he was there to pass judgement on the lawfulness of the DWP decision and nothing more, the doctor was there to ascertain that the medical was done correctly and all relevant medical records taken into account.
I was asked a few questions by the doctor (who seemed to me to have done some research on HS as she seemed to understand what I was explaining) and after listening to my answers, the doctor turned to the lawyer who asked if she was happy she replied yes.
The lawyer then said we should wait in the waiting room and we would be informed of the decision, however what we heard was please wait in the waiting room we will now consider the appeal.
When the other woman took us through to the waiting area she said she would be back in a moment with the decision, when I asked what she meant she asked what we thought the lawyer had said, I said I thought he said they were considering at the moment she replied no they decided in your favour I will just go and print off your copy of the decision.
I was so overwhelmed I burst into tears that someone had actually listened to me and understood what I was saying, and had actually agreed I was telling the truth.
As soon as I got home I called Triage and informed them on the appeals panel decision, even going as far as to read the letter to the woman who called me back demanding I explain why I no longer needed any appointments with Triage.
It had taken almost 2 years to get someone to listen to me and agree with my own doctors.
Finally I was able to get into the Christmas spirit with my children, making it the first time in years I was able to enjoy the day without the DWP and the subcontractors harassment playing on my mind.
Now I find myself 4 months down the line not being harassed by any subcontractors of the DWP but having done some research on the new governments changes to DWP I know I will have to go through all that all over again.
DLA is to be changed for something called Personal Independence Payments (PIP) and this will depend on ATOS for the medicals, ohh joy joy happy happy!!
ESA will be reassessed guess who by that's right ATOS and I have reason to be worried, reports I have seen lead me to the conclusion that if you fight ATOS you will ultimately lose, if they don't win at first they will make your review seemingly something from the seventh circle of hell.
I have also discovered that no matter how many reports and reviews that the government commission none will make ATOS change any of the assessments, interviews or medicals.
There is no publication of the ATOS DWP contract not even the first report commissioned by the government was allowed to see that, so we have no way of knowing that when ATOS and the DWP state ATOS are not set targets of percentages to fail the "medicals" that in fact they are telling the truth or not.
We are also told each person who complains is the only one unhappy with the decision, not true I have seen many many complaints regarding ATOS DWP and companies like Triage, harassing people some with terminal cancers, and other life threatening illnesses, so how someone like me expects to take on the system and win I have no idea.
The system seems to use a divide and conquer strategy, deny anyone else has the same problems.
The above I originally posted on a facebook group I started but have now deleted. It was for my own sanity more than anything else.
It did go away, then came back worse than before. Again I went to the doctor again I was told it was nothing to worry about and again it did go away.
I became very aware of my personal hygene routine making sure I washed twice daily if not more, and making sure I was shaving my underarms more frequently so as to stop the hairs becoming ingrown as the doctor had told me to do.
After a few months of this lump appearing and disappearing, it again came back but when I was drying myself after bathing it burst leaking a pus like liquid, and smelling a rather foul smell (best described as yeasty) I again washed even though it was painful and left the skin very red and raw looking.
Again I went back to my GP and he said it was a mild infection caused by over washing (erm remember you told me to wash more often!!) so a course of anti biotics was prescribed.
I took the full course (as someone who has nurses for parents I know the dangers of not finishing a course of anti boitics) and noticed more of the lumps appearing even though I was taking the medication.
I met and married my husband during all this, and we moved from Edinburgh to Glenrothes in Fife, and we changed health centres.
I had gall stones and since that was more painful and had a bigger impact on my life than the lumps did I was more concerned with easing that pain and discomfort, that was until I had my date for my gall bladder removal and my GP asked if I wanted him to know about anything else.
I lifted my right arm and said "do you know what these are" the lumps were no longer just small lumps but long scarring which took up most of my armpit.
He looked confused and started flipping back the pages of my medical records, and said "when did you have the operation or procedure?" I answered that at that time the only operations I had had was 2 c sections for the births of my children and was about to have the gall bladder removed.
I was asked what had made the cuts, which confused me until the doctor explained that to him it looked like I had scar tissue all over my right armpit and some on my left armpit, I explained about the other GP telling me it was ingrown hairs and this GP said he would refer me to the Dermatologist for treatment.
He than gave me a prescription for something he called "holistic treatment" to take the swelling down. What I did not know at the time was whatever this was it was not a treatment unless you count a placebo as a treatment.
After a few weeks of taking the pills (stick under tongue and leave to disolve do not eat drink smoke or crunch) I got more lumps appearing. So I stopped taking them on the orders of another doctor who had never heard of the pills.
I waited over a year for the appointment to see a Dermatologist, who took one look at my armpit and said I had a textbook case of and rushed out some fancy words I had no idea what she was saying, until she said "we can treat this sucessfully".
Fantastic I thought never realising that treat and cure are NOT the same thing, and all I was going to do now was be another test subject for some very dangerous treatments. I was given more anti biotics and dressings for when the lumps burst.
I found out around this time that the pus like liquid that leaked out stained clothing and eventually wore them out along with the repeated scrubbing of hand washing and machine washing to rid the clothing of the stains.
None of the treatments worked until I was given a drug called Roacutane which I was told was linked to suicides and depression, and under no curcumstances was I to allow myself to become pregnant, as it would mean I would have to have an abortion due to the drug causing abnormalities in the developing fetus. Since I do not personally believe in abortion I went onto the pill and became paranoid about my husband and I having sex just in case I fell pregnant.
I already had 2 daughters with the youngest at that time in nursery, and the oldest at school full time. So my husband and I came to the decision not to have anymore children, given the fact that I had very severe post natal depression which got worse after each child.
I took the drug as prescribed going each month for a pregnancy test at the hospital and getting the following months presciption. In Scotland the drug can only be given by a hospital doctor and filled by a hospital pharmacy due to patients having to be monitored closely while on it.
I was working as a cleaner at that time and had to travel home (by public transport) after 8pm, often in the dark.
After a while I noticed I was losing some of my vision at night and being blinded by car headlights while waiting for the bus to arrive. My husband also noticed I became very short tempered and snappy with him and the children often over the smallest and silliest of things.
I called the dermatology clinic and explained my concerns and was told to stop taking the drug right away, and go back in the following month for a revue and change of medication.
The doctor was unhappy I had not given the drug a chance to work better, even when I explained my situation, she seemed to be happier with me a quivering wreck shouting at my family for not eating their meals as soon as I had cooked them, not to mention the dangerousness of night blindness.
I was then put on other anti biotics Erythromicin being one and a few others none of which alone worked to help keep the HS under control. I was also given pain medication for the first time around this time. I had given up all the pain medication when I had my gall bladder removed as I did not need it for the HS until a few years later.
My GP seemed bemused by the condition and left it up to the hospital doctor to deal with and took no interest other than to give out repeat prescriptions for my medication.
My family again moved, so we again changed health centres. This time my GP seemed interested and wanted to help me get the HS under control.
I was then told that eventually I would need an operation to remove the scar tissue and referred to a plastic surgeon who wanted me to lose a considerable amount of weight. OK I am fat I know this but being fat has absolutely no relavance to HS.
I lost my job and became mildly depressed for a few years until I got another job.
I explained to my employers about my condition and how it limits my movement of my right arm at times. No problem I was told we can work round that.
I was working in the highly stressful and target led call centre business. I didnt know at the time that even though I was good at my job I was making the HS worse much faster than had I not gotten that job.
I was reading a magazine and saw an article on HS where the woman was like me and overweight, had her children young, and had the same lumps leaking the same sounding pus like liquid. She had had an operation to remove the infected area and the skin was left to grow back with no graft done to help the regrowth, but the condition came back within 2 years. She like me had been on most of the anti biotics known to medicine, with none working effectively.
I now felt very depressed knowing there was no cure , and remembered back to the first appointment with the dermatologist when she told me HS could be treated and remembered no mention of a cure.
By the time I had been working at the call centre 4 months I was suffering so badly I could barely sit comfortably at my desk and had to have my right armpit dressed twice daily, I was also getting the lumps in my genital area for the first time, as well as along my c section scar and over my stomach breasts and tops of my legs.
I was still going back and forward to the hospital and getting new creams and dressings to use, all with varying degrees of sucess. None gave me back my body which by now I felt was being taken over by this horrible condition.
I began noticing the pus like liquid constantly leaking from my armpit and I was more aware of the smell, even though no one commented I was very aware every time I stretched my right arm out or leaned over my computer at work.
In fact by this point I was so aware I changed how I dressed and was always covered from neck to wrist and wore as loose fitting tops as I could. I also carried wipes in my bag so I could wipe the area whenever I felt I needed to, which was very often.
The call centre was losing money and we found out right after Christmas that we may not have jobs left for much longer, the stress of worrying about how I was going to look after my family made the HS worse, to the point I couldnt move my right arm at all wothout pain and I could not sit comfortably at all.
I went to see my GP to get more pain medication (or stronger medication) to allow me to carry on working, my GP took one look at me with tears running down my face and asked me if I worked, yes, well not for the next 2 weeks you dont she said, and handed me a sick line to give to my work.
She also gave me more pain medication so I was now on co-codamol and tramadol. I discovered that even though I had taken both drugs while I had gall stones, I was now hallucinating with the tramadol.
I could not take the full dose in one go I had to take half the dose and then 2 hours later the other half.
Giant rats climbing the walls of my home is actually quite scary, as is the floor moving and the carpets trying to consume the children!!!
I was also sent back to the hospital for different dressings and medication, the dermatologist however told me I had been on all the medications she felt would help and other than long term anti biotics there was little more she could do for me.
I was also sent back to see the plastic surgeon, and even though I had not lost the weight he wanted me to he agreed I needed the operation and he would see me as soon as an appointment became free.
I was then told the only operation done was a skin graft. The infected tissue would be removed and skin taken from my thigh would replace it.
I was overjoyed to hear I would be getting some relief, and forgot to ask anything about the operation and recovery period.
I was still being signed off work by my GP and again was given more pain medication since the others were no longer working as they had when I had gall stones. I was now on co-codamol, Tramadol and diclofenac.
I was also told that it was possible that if I rotated 2 anti biotics every 3 months they might not stop working as quickly and I may be able to get the infection under control.
I was also told I was at risk of diabetes, and started on a medication called Metformin, which is used as a polycystic ovary treatment, and has had some success with helping people lose weight and can also be used as a preventative measure to stop people becoming diabetic later in life.
I lived a few months on my recliner chair, sleeping when I could get comfortable to doze for a few minutes, in an upright position because lying down caused pain in my armpit.
I bathed using a bath emollient called Dermol 600 and washed using a cream called Dermol 500, I could no longer raise myself up using my arms to get out the bath and needed my husband to help me. I couldn't dress myself alone because anything touching my skin or pulling any skin near the affected areas made me cry out in pain.
I became housebound only going out to see my GP for more pain medication.
My husband took over almost all the care of my children (and myself) the housework, shopping, bill paying, getting less and less sleep himself as he made sure I was as comfortable as possible and had all my medication and a drink near me before he went to bed for a few hours to start it all over again the next day.
If my husband was out my oldest child became my helper often making me drinks, helping me to the bathroom which is not what an 11 year old child should be doing by my way of thinking.
I started to resent my husband for being able to just walk up to the shops or collect my youngest child from school, I tried not to show it but every time he left the house for whatever reason I felt trapped and useless.
I felt useless as a wife and mother, it should have been me collecting my daughters, me getting the milk and bread, doing the washing, hanging the washing outside to dry, you name it I felt useless at it. I couldn't even cuddle up to my husband and watch a DVD never mind anything else with him.
After what seemed like forever (in reality 4 months) the call centre I worked for closed making us all redundant and I had to apply for Employment and Support Allowance from the department of work and pensions.
When we had been told we were being cut from whatever our normal working hours were to 9 hours per week I had gone to the JobcentrePlus and asked if my family were eligible for any help. The gentleman I saw asked me to sit down and he watched me perch on the edge of the seat and wince in pain, he asked me if I was always like this, yes i said he handed me a rather large form to fill in and send back, telling me to get CAB to help me. The form was a Disability Living Allowance form.
This made me feel even worse because to me, disabled people were those who had limbs missing or could not walk, people with Spina Bifida that sort of thing not people like me who have a skin condition, caused by god only knows what.
However when I told my GP she agreed it wouldn't hurt to fill in the form the worst that could happen was I would be told I wasn't eligible and I would be no worse off than I already was. So I went to CAB and they filled int he form with my answers and I was awarded DLA.
I was given a date for my operation of May 2009 in St Johns hospital in Livingston, not Fife or Dundee as I expected but a hospital a fair distance from my home.
I explained all this to the DWP when I put in the claim for ESA and I was told don't worry we "may" need you to go for a medical but since I was due to go for an operation I was told that my medical records should be enough.
This is where my story becomes very strange and stressful for all involved.
I had my operation the graft took 90% which I told is fantastic and better than the average of 60-70% I spent just over a week in hospital.
When I saw my graft site I wasn't shocked but when I saw the armpit I was mortified. It looked like I had been bitten by a shark!!
I had nerve damage from the depth the surgeon had to go in my armpit and I was told the feeling would never return to the muscles it was an unfortunate side effect of the operation but I was told it was better than not being able to use my right arm at all.
I was sent a letter telling me to go into the local Jobcentre for an interview, and even though it was only a few weeks since the operation I went with my husband. We were told I should not have kept the appointment, no of course I should have I was able to travel the short distance with help and support.
We were then told the next appointment I would have to go to would be the medical and I would get a letter telling me when and where.
The next letter I got was telling me to go see a company called Triage, off we went again. A few problems were raised during this meeting.
1) Scowling at my husband as if I shouldn't have taken him
2) Kept waiting long past the appointment time so the staff could discuss their breakfast
3) Refusal to explain exactly what the appointment was for after being told it was NOT the medical
4) Reluctance to explain anything, I mean I'm only the "customer" and don't need to know why they want a list of my medication when they aren't medically trained
Appointment deferred for a few months (they claimed 6 but August to December is not 6 months) same process again and deferred for a few weeks, January guess what same process. Except I was told I had refused the medical and would have to find work, erm you sure?? I have never refused to attend any appointments send out by the DWP or any of the sub contractors.
I had not been sent any letters other than the ones from Triage at this point and when that was explained (again) I was given a number to call (after 2 tries the woman said it was very busy and she wasn't trying again) and told to ask why I had not had the medical. Her tone of voice made it very obvious that she thought it was my fault since the system would never forget someone or not send out a letter would it??
It took me 3 days to get through on the number given to me and get an answer as to why I had not had my medical, apparently my file had slipped through the cracks and no one noticed, how very professional!!
I was then sent a questionnaire, by a company called ATOS now anyone wishing to know anything about ATOS should google the following - ATOS not fit for purpose.
It makes very interesting and sometimes uncomfortable reading.
Basically the questionnaire was asking things like can you raise your arms above your head, can you make and carry a mug of a drink, and can you propel yourself (either walk or with aids) 100 yards. This is what they base your ability to work on, now excuse me for being thick but what job involves you raising your arms above your head walking 100 yards and making a mug of a drink and nothing else??
Ohh and I nearly forgot how exactly does measuring around someones thighs have any baring whatsoever on their ability to work?? I am still waiting (more than a year later) for the explanation to that little gem.
I took a note of the "doctor"'s name and checked it on the GMC website where you can check if someone is in fact a doctor, no her name wasn't there unless she was 40 years older than she looked (making her almost 90) or a lot younger than she looked (making her just qualified) she herself said she had 20 years of GP experience, so neither name could possibly be her. Also note the following the entire "medical" took 21 minutes, this will become clear later as woefully unsuitable.
When I was again sent a letter from Triage, this one a lovely threatening one telling me I would lose my ESA if I didn't keep the appointment, which is WRONG they cannot stop you getting any benefits from the DWP what they can do however is stop you getting any back to work allowance added on top, I was not receiving this as I hadn't been placed in any group at that point, so the point of the letter was just a scare tactic, used to make you feel you will fail and not to bother trying to get any help you are entitled to as someone who has been told you need.
Another lovely gem Triage tell you (and deny when called on it) is that 93% fail the medical - wrong almost 70% (when taken into account the people who stop the claim before it reaches appeal stage) fail it even terminally ill people with only a few months to live, and at the appeal stage 40% are upheld by the appeals board for the claimant.
So quite frankly ATOS are doing a fantastic job of denying claims, which as I understand it, the DWP are asking them to do. Fail as many as possible so we can make them all find unsuitable and sometimes dangerous jobs where the workforce are at risk, but its OK they are off the official figures as being unemployed.
Anyway I called the DWP and asked when I would know the results of the "medical" and was told the report was sitting on someones desk and she would chase it up for me and send me a copy, which I received the following day.
FULL OF ERRORS.
I can walk for a distance without stopping - really I was not observed walking more than 10 metres (not 100 yards)
I can dress myself - really I and my husband explained I did not do that as it hurt too much
I look after my children - by being in the home yes technically I am looking after my children but the last time I have gotten down and played on the floor was months earlier
I was not doing things due to wanting to avoid pain - duh who is gonna sit out in the mid day sun when they have a migraine??? Most would stay in a dark room until the pain subsides, but in the "doctors" opinion that's wrong.
Ohh and the "doctor" who signed the "medical" report was NOT the name of the woman who actually saw me, ohh and her name wasnt on the GMC website list of registered doctors in the UK either.
I have since found out that ATOS have less than 1400 medical staff (doctors nurses and physiotherapists) to do the DWP ESA medicals. This I got from the Harrington Review which is available online for free.
According to ATOS and DWP information you are supposed to be seen by someone who has experience of your conditions, OK I can prove that wrong, we had to explain what HS was and the woman looked blankly at me as if I was talking double Dutch!!
I also wonder how exactly someone can see an area they pass a judgement on when they cannot actually see that area? The woman (I refuse to call her a Doctor since to me a medical professional is exactly that PROFESSIONAL she was anything but that) stood behind me and stated on the report she had seen lesions, OK please tell me how you can see through a body? Are ATOS staff fitted with ex-ray vision?? Can they suddenly see an area without looking at it??
WOW they must be fantastic because every other medical professional who has ever treated me has had to actually LOOK at the affected area.
I called up Triage and told them I would be appealing the decision since I believed it was full of errors and incorrect, I was told I would HAVE to do the 5 month course so I might as well get it over and done with.
Two problems with that.
1) If I do the course then I am agreeing with the ATOS findings - I was not
2) How was I supposed to get to the course when I couldn't move off the chair in my living room without considerable pain??
I again had a flare up (as I call it when the HS becomes very bad and more painful that normally) and went back to see my GP, who by the point was doing her best to get me on drug trials and experimental drugs which may or may not help, as she put it I was already in acute pain and anything was worth a try, and to be brutally honest by that point I didn't care I wanted to die, rather than keep fighting for a measly amount from the DWP.
My GP was concerned and asked me tell her everything, when I got to the part about Triage telling me 93% fail the "medical" my GP told me she personally had patients (naming no names) that had signed themselves back to work when in her opinion they were not ready to do so, but she never knew why and what I was telling her made sense now.
That I find very worrying.
These people are given bonuses for getting people who in their healthcare professionals opinion are NOT fit for work back to work which often makes conditions much worse, and I thank god I am not suffering with a more severe mental illness, which could lead to a complete breakdown.
I was very ill by this time but I was again sent for another "medical" with ATOS nothing was explained to me as to why I was again being sent and I called them up and stated I was appealing the original report, I was told tough you must go to the interview because if you do not your benefits will be stopped for up to 26 weeks. Again this is a scare tactic and they cannot stop, all they can do is place sanctions on the extra money received for being in a group, which again I was not in at that point.
I again went in but this time I decided they were not going to take my answers out of context and I was going to record the interview.
They don't like that and the woman spent longer arguing with me about my not being able to record the interview than she did ticking the boxes on the computer programme. I however refused to give in and had the dictaphone recording the whole time.
Strangely enough when I received my copy of the report ever answer was exactly as I had answered it.
I then was sent a letter telling me I was being placed in the WRAG (Work Related Activity Group) which meant they expected me to find work after completing a 5 month course, even though I was again too ill to go to the appointments, I was sent more threatening letters by Triage and ATOS.
I was running up a rather large telephone bill due to all the calls back and forward to all the various departments of the DWP ATOS and Triage, because all use national call lines not local call so it costs more and you cannot call them from a JobcentrePlus office but only from your mobile or land line.
At one point I was worried I would not be able to pay my phone bill and would lose connections with the outside world, and support groups I had become a member off.
I filled in the appeal form explaining I believed the first "medical" was done incorrectly and none of my medical records were taken into account, and I received a letter back informing me that I would not have my appeal heard for a number of months, it would be heard just before Christmas. This meant I was still fighting Triage who were doing as the DWP informed them, and the DWP were basing the decision on ATOS reports.
This is NOT the way it is supposed to happen the ATOS reports are supposed to be a small part of the overall decision taken by someone called a decision maker who is supposed to have access to ALL medical reports (which I gave permission for) but I'm my case it seems all the decision maker did was rubber stamp the ATOS report making it the decision made.
I again went to a Triage appointment (after yet another threatening letter being sent out) and was seen by a woman who was part of the management team at the Glenrothes office, she told me she was deferring me until the appeals board had made a decision, and could I inform them as soon as I knew since the DWP waited until there was a few decisions and sent them all out together, which apparently means I would have the information before anyone else. Yes I said since it was in my best interest to make sure that they all knew as soon as I did.
I continued with my treatments and continued having minor flare ups until the December when I again had a bigger and more painful flare up needing my husband to do more and more for me including helping me to get in and out of the bath, and washing my hair. Which by that time I had cut very short so I wouldn't have to get my husband to continuously look after.
We (my husband and I) went to the appeals panel.
It was a 2 person panel, a female doctor and a male lawyer, there was also another woman who took notes and sat at a different table to the panel and my husband and I.
The lawyer explained he was there to pass judgement on the lawfulness of the DWP decision and nothing more, the doctor was there to ascertain that the medical was done correctly and all relevant medical records taken into account.
I was asked a few questions by the doctor (who seemed to me to have done some research on HS as she seemed to understand what I was explaining) and after listening to my answers, the doctor turned to the lawyer who asked if she was happy she replied yes.
The lawyer then said we should wait in the waiting room and we would be informed of the decision, however what we heard was please wait in the waiting room we will now consider the appeal.
When the other woman took us through to the waiting area she said she would be back in a moment with the decision, when I asked what she meant she asked what we thought the lawyer had said, I said I thought he said they were considering at the moment she replied no they decided in your favour I will just go and print off your copy of the decision.
I was so overwhelmed I burst into tears that someone had actually listened to me and understood what I was saying, and had actually agreed I was telling the truth.
As soon as I got home I called Triage and informed them on the appeals panel decision, even going as far as to read the letter to the woman who called me back demanding I explain why I no longer needed any appointments with Triage.
It had taken almost 2 years to get someone to listen to me and agree with my own doctors.
Finally I was able to get into the Christmas spirit with my children, making it the first time in years I was able to enjoy the day without the DWP and the subcontractors harassment playing on my mind.
Now I find myself 4 months down the line not being harassed by any subcontractors of the DWP but having done some research on the new governments changes to DWP I know I will have to go through all that all over again.
DLA is to be changed for something called Personal Independence Payments (PIP) and this will depend on ATOS for the medicals, ohh joy joy happy happy!!
ESA will be reassessed guess who by that's right ATOS and I have reason to be worried, reports I have seen lead me to the conclusion that if you fight ATOS you will ultimately lose, if they don't win at first they will make your review seemingly something from the seventh circle of hell.
I have also discovered that no matter how many reports and reviews that the government commission none will make ATOS change any of the assessments, interviews or medicals.
There is no publication of the ATOS DWP contract not even the first report commissioned by the government was allowed to see that, so we have no way of knowing that when ATOS and the DWP state ATOS are not set targets of percentages to fail the "medicals" that in fact they are telling the truth or not.
We are also told each person who complains is the only one unhappy with the decision, not true I have seen many many complaints regarding ATOS DWP and companies like Triage, harassing people some with terminal cancers, and other life threatening illnesses, so how someone like me expects to take on the system and win I have no idea.
The system seems to use a divide and conquer strategy, deny anyone else has the same problems.
The above I originally posted on a facebook group I started but have now deleted. It was for my own sanity more than anything else.
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