This is Karen's story in Karen's words, pieced together into chronological order from blogs she wrote, emails she sent to me intended for publication and posts she made on forums seeking help. It is unaltered apart from spacing and highlighting so that Karen herself can tell you how she spent the last few years of her life.
25th October 2010
I've just been to the website and felt I wanted to write and send my story to you.
Okay, now where to start?........From the beginning I guess.
In 1970 at the age of 3 it was discovered that I had diabetes. Now, I, myself do not remember much about this time just stories from my mum and dad telling me how bad I was, they found me drinking a bottle of undiluted orange squash in our hallway and had an inkling that something was wrong, the fact they had to hold me down to give me my injections at that age, and how they felt guilt-ridden at having to do that but also knowing it was the only way to keep me alive.
The years passed by, I did my schooling and went onto college and got a business qualification. During this time a few glitches were showing in my health and it was found that I had an underactive thyroid, so I was put on pills for that, nothing unusual there with the diabetes. I got a job as a part-time clerical assistant in a small factory. The health still pretty much plodding along. Left that job and worked as a departmental secretary to the director and a sales team. Enjoyed my teens, as you do and things were okay, it seemed.
Time passed by and I began to work in the NHS. This is where my health really began to deteriorate. As the years passed more things started to show up. High blood pressure, changes in eyesight, kidneys, cholesterol. I was referred to the eye specialists at my hospital and my eyes showed up active diabetic retinopathy and they said it needed to be kept a close check on. Unfortunately my eyes haemorrhaged and I had to have my first operation, then another two following that. I lost my peripheral vision in both eyes and some central vision in my left eye. The rest was “saved.” At the moment the condition is dormant, but I have no guarantee that it will not happen again, as is the nature of the beast.
I was finding myself off sick from work an awful lot, mostly with bad stomachs. The powers that be picked up on this and decided it was time to do something about it. I had disciplinary meetings because of my health all this time having investigative procedures done to find out what was wrong. After lots of tests and other invasive procedures the conclusion was met that I had diabetic autonomic neuropathy of the gastric system which is caused by damage to the nerves and causes diarrhoea and bowel incontinence and also nausea and vomiting of an unpredictable nature. In February 2008 I was dismissed from my job on ill-health grounds as it was felt I was incapable of working any more. This was even deemed by the pensions agency which is run by ATOS, but this apparently has no bearing on the same ATOS that deal with the benefits system. Fascinating huh? It was a scary time having to apply for benefits for the first time ever. I did not really know what I was doing, but I did it and rode the storm. Since then I have found out that I have Vitamin B12 deficiency and low iron count, along with my severe kidney disease this also means I suffer from chronic tiredness and sometimes I do not get out of bed and am unable to function because of this.
I’ve had a medical, which was a farce, never heard anything and was called for another in August this year. I have been placed in the Work Related Activity Group, but I have appealed this and am now waiting to hear something.
The true facts of the whole thing is that my health is so poor now that I could never work again. I feel so ill some days, either because I’m throwing up or on the loo (or not as the case may be), suffering with terrible stomach pains and just about enough energy to drag myself out of bed only to end up back in there because I feel so awful. I never foresaw any of this happening, but it has, and it’s not nice having been independent to find yourself so reliant on other people to help you, although I have a wonderful husband who helps me with everything. If I have a “good day” I see it more as a treat because it happens so rarely, I try to do something with it, but not much because the tiredness will hit me, sooner or later.
I think the government’s stance on disability is inexcusable. Life deals a heavy hand, and one that is sometimes difficult to live with, Mr Cameron of all people should know that, but his son did not reach the age where big decisions were going to need to be made, but then I guess he wouldn’t have had to go through the ATOS medicals we have to with a “trained medical professional” who is only there to tick boxes that suit their own opinions and not show a true reflection of how things really are. Would things have been different if Mr Cameron had to take on his son’s own future? That’s something we’ll never know.
So, what happens next is anyone’s guess, but none of us are devoid of disability striking us at any age or walk in life. A sudden accident that takes away our sight, or our ability to walk, talk or use our arms and legs. An incurable disease that will cause our health to deteriorate so that we cannot function. If this happened to any of the government members, what would they do if they were told, “you’ve got to have an ATOS medical.” Or, “off down the JobCentre you go because you can still work of course, ATOS said so?” How would that change their lives and the impact it has on everything they do every single second of their living lives?
The trouble is the government do not seem to be able to see this in their blinkered lives and opinions.
It’s a bitter pill to swallow, but some of us have to do that, along with many other pills and live with our disabilities, none of which we asked for, for the rest of our lives...................
Via emails, February 2012
I recently received another ESA50. When it came I set about asking people for medical evidence. For one complication, or another I ended up without anything to enclose so I had to draw something up myself.
When I typed it, it suddenly hit me how much my life has changed due to my conditions, how dependent I am on other people, and how much of a shock it was to me that this is how bad I am.
I wanted to show other people it, not as a “poor me” thing, but purely as an insight to what I now live with after, despite having the conditions I was living with many of them, quite healthily until just about 5 years back. Coping was a matter of getting on with it. Now, getting on with it, is simply not an option any more. A factor which the government obviously don't think is a valid reason to ask for benefits. What frustrates me most is I know how ill I am, but they do not seem to care, and they probably still won’t even after reading this.
The reason I say this it because, theoretically, on reading this I should be place directly in the Support Group, I have nothing to hide. I shall await my fate..........
My conditions affect me in many ways from tiredness and exhaustion, pain and discomfort, problems with my eyesight, danger to myself and others and my continence and vomiting problems. It makes everything I do difficult for me and on very bad days I will be bed-bound and housebound as I will find myself too ill to do anything.
On the very rare occasions I am able to go out I have to be accompanied, guided and assisted at all times to be sure I do not cause damage or injury to myself or other people. I do not go anywhere without supervision and guidance as this makes me very nervous and anxious, and means I have to have someone with me all the time. I lack confidence and get scared when going out due to my loss of peripheral vision in both eyes. And my loss of some central vision in my left eye which causes what I see to be very distorted and blurred. This has been something I have never come to terms with. I have frequent accidents, trips and falls on a regular basis, and cannot cope on my own in unfamiliar and familiar places. This even causes me problems in my own home as I walk into door-frames, settee arms, the washing machine and tumble dryer, tripping on threshold steps etc, as these are outside my fields of vision.
The only reason I would specifically leave the home would be to go to hospital or doctors appointments and I would always have someone with me to do this.
I also do not use sharp knives or hot objects due to the danger I can pose to myself and others because of this, as I lack awareness of hazards. If I am able to eat I have very basic foods which do not need any preparation and cutting or are ready prepared, as I do not like using knives or anything that will be hot because I will cut or burn myself.
My sight problems also mean that I suffer from night-blindness which means I cannot be on my own at night and need help if I need to get up in the night for any reason and need a light on to be able to see what I am doing. I also have problems with colour and depth perception. For this reason I do not use steps as I am unable to judge them properly due to being unable to judge the size of the step and the merging of colours on them. Also, due to my colour problems I need help so I know that the colours I am wearing match and I do not have any stains or marks on them. I do not wear clothes with buttons, as I cannot manage these due to my sight, especially if the buttons are the same colour as the garment as I cannot see them. I do not wear shoes with buckles or laces as I cannot manage these either.
My life is far from what could be described as normal due to the multiple medical conditions I suffer from. They have got progressively worse as time has gone on.
I suffer from Stage 4 renal disease which makes me very tired and unable to undertake any sort of activity. This includes housework which my husband does. He also does the washing, cleaning, cooking and shopping as well as working in a full-time job. I am currently being worked up for placement on the list for a kidney/pancreas transplant. However, I had heart scans done recently and I was discovered to have an unknown problem with my heart. This requires further investigation with an angiogram and will need to be resolved before I can go on the transplant list as I will be too weak to withstand the operation otherwise. All the time I am waiting for these things to happen my kidneys will become progressively worse.
My continence issues mean I frequently soil myself without knowing. This can particularly happen if I break-wind and soil at the same time. I do not always realise this has happened until I either go to toilet later for a wee to find I have already done this, and therefore have emptied my bowel, without any control over it, in my underwear. This happens on a regular basis, at least once a week. When it is particularly bad, up to 4+ times a day, when full bowel movement without control occurs. The only small advantage is as I am mainly housebound I do not suffer unnecessary embarrassment due to the fact that the only person with me would be my husband rather than someone I do not know which would be extremely difficult for me to deal with. If this happens to a stage where it drains me of my energy and leaves me exhausted I can go to bed and rest.
I am on the highest dose of Codeine Phosphate, but I am becoming intolerant to it and I have been told there is nothing else I can be put on so I am unsure what the next stage for this is.
When I am vomiting I usually do it over myself as again, this is something that happens without warning. When this happens I get no benefit from my medication as I bring everything up. This leaves me very weak, especially if it happens several times in a day, which it does frequently and I have to go to bed and rest.
Also, if I am very ill I do not have the energy to do things like dress, wash or shower as I am too exhausted to do so. The only place I can be then is in bed resting.
Walking is very hard for me as due to my extreme fatigue I suffer from great pain in my lower back and weakness in my legs. On the worst days I cannot walk far without being in excruciating pain and legs that feel wobbly. On other days I can walk a little but not very far. Just a few metres before I have to stop due to breathlessness and tiredness as well as pain.
It is not nice to suffer from multiple conditions that have such a significant effect on your life. Coping with them is very hard at times. It is very upsetting and debilitating without control over them. It means I rely completely on other people to help me through it when I am having a particularly bad time. I am glad that I have the support of my husband and family to do this as without them I do not know how I would cope.
Another thing to consider is that I am now stuck in the “revolving door of benefits”. “So, how does this work?” I hear you say. I will explain.
In brief; You receive an ESA50 form – you fill it in – you send it to ATOS – they call you for a medical – you get placed in the “wrong” group – you appeal at 1st tier stage – you go to a humiliating tribunal – you lose/ win it – you go to 2ndtier appeal – you lose/win it – you receive an ESA50..........and so it starts again............
Well that is how it usually happens anyway. Here is what happened to me;
I applied for benefits – I received an ESA50 form – I filled it in – I sent it to ATOS - I was called for a medical – I heard nothing/got lost in the system.................
I received an ESA50 form – I filled it in – I sent it to ATOS – I was called for a medical – I was told by the nurse that saw me that I should be in the support group and if I was not I should appeal and would win – I was placed in the Work Related Activity Group – I appealed – I LOST – I found a rep that was happy to represent me – we moved to a 2nd tier appeal – my appeal notes were “lost”.
I received an ESA50 – I filled it in – I sent it to ATOS.
This is the stage I am now at. How does this make me feel?
It makes me feel like I am caught up in the mill, frustrated, angry and insignificant. Going round in circles and really achieving nothing except never being placed in the right group. Working is no longer an option for me. The form is difficult to fill in, it is draining and soul destroying. You get letters reminding you that you have not sent it back yet, putting further pressure on you to return it, when you need time to fill it in as it takes so much out of you. Making sure you include every little detail, but knowing that it is probably not going to make any difference.
How does my husband feel? He says he is disgusted with how I am being treated. He sees the effect it has on me day in and day out. He knows how ill I am on the bad days. It is a ludicrous situation and he has no idea how I could be placed in the Work Related Activity Group, it is completely beyond him. He would never employ me as it would be a chance he could not take. He said I cannot get to a toilet quickly enough so I soil myself, and it would be in front of other people, or I throw up all over myself. And this happens many times on any given day. He sees me when I am bedbound and house-bound, and cannot do anything because I am so ill. He as an employer (hypothetically speaking) would not want that. Would anyone else as an employer want that? The fact that there would just be days where I would never be at work, and never know when I was going to be at work. The risk is too great to any employer to employ me.
I am in the WRAG, this means I have a year cap on my benefits, so they are due to stop soon. My only hope is that I get placed in another group and still continue receiving money. And so we go starting it all again...........The revolving door of benefits
Karen posted on the forums attached to FullFact.org for help and advice
Monday April 2nd 2012
I have found out that my ESA is stopping at the end of this month and I am not entitled to anything after this date.
I do not know what to do, I am distraught about this. I was on Contributory based ESA. Because my husband earns over a certain amount of money, and works over a certain amount of hours, that is it, we won't get Income based benefits either.
I do not know what to do, does anybody at all out there have any advice at all?
If you can help then please do.
At this stage I am trying to find out what I can do. Something was mentioned to me about NI credits, but I do not even know how much this amounts to, or where to go to, to claim it. And just get as much help as I can.
This is extremely worrying. I did send an ESA50 back recently which I was sent, but do not know what will happen with that either. Am I supposed to be receiving a further medical assessment. I just don't know, it is all very confusing at this stage.
Tuesday April 3rd 2012
I have called ATOS today to find out what progress is with my ESA50. They have told me it has been received and is being looked at by the doctor. They have a backlog and I may not hear something quickly about whether or not I need to attend for a medical. She was very helpful and also told me that as I was not able to get any supporting evidence in with it I could bring it along with me should I be called in.
Now on top of what has happened I am now unsure of what to do as if I get called in this potentially means I should start to receive benefits again. Can anybody offer any further advice?
Interesting to be told that, isn't it? Makes you wonder what else is going on behind the scenes.
I also contacted the appeals centre. I did have an appeal ongoing but my rep, (pardon my next outburst) totally f*cked that up for me as they did not receive my paperwork, we were given time to re-collated it and sent it in, and she came up with excuse after excuse like; her laptop wasn't working, her daughter was in hospital, she had conjunctivitis, she needed to check the paperwork again, she needed to find a specific piece of paperwork. This was despite me re-collating all my paperwork, hand-delivering it to her and telling her my husband would collect it from her, by hand and take it to my Jobcentre adviser to she could courier it up to Cardif..
They have told me to write in and explain all the problems I have had and ask for it to be set aside. If that gets refused to send all the paperwork in, with the point of law it has failed on for the 2nd tier appeal. She was very, very helpful and very sympathetic. So perhaps there is still a light at the end of the tunnel. I just need to find a new, reliable rep now.
Weds April 4th 2012
No, I did not ask to reapply. I actually had the form sent out to me in February. I spoke to my local DIAL office today, and she said they could be looking at my claim because my condition has worsened. It is all very complicated I am afraid. I had a very long chat to her today and she also said because my care needs are changing so drastically I should be receiving higher rate care on my DLA too as I am being worked up for a kidney transplant and being made ready for dialysis. She has booked me an appointment in May with them, this is their first slot as they are currently very busy, and I have to ring the DWP and get a form a couple of weeks before to take to them to help me fill in.
She felt there may be some awareness of my condition deteriorating and that is a possibility why I got sent an ESA50. And if I do get called for a medical I should definitely go as they may put me in the Support Group due to the significant deterioration in my health.
Weds April 11th 2012
I had a call from the lovely lady at DIAL today. She has spoken to a benefits and welfare assitant at the voluntary service they deal with.
As you'll know if you've read above my ESA is ending the end of this month due to being in the WRAG and reaching the cap, despite being entitled to be in the Support Group.
He has said that I have definitely received the ESA50 because of some trigger on my health conditions, I am guessing this has come from my the Jobcentre advisor as my conditions have deteriorated and that is what has happened? He has said if I am placed in a group I will start to receive benefits again, if it's the WRAG group it will start again and be for year, if it's Support Group then it will be as long as they deem it for.
Does anyone have any info on if this is right, or not. I would like to think that it was as it will mean that I could start to received some money again? Does anybody know if this is right if placed back into the WRAG
I sent an email to my Jobcentre adviser about why I have had an ESA50, she said "it's a matter of course, because you are due for a medical". I also said that the doctor at my tribunal, a while back said "being on dialysis automatically puts you in the Support Group". She has just told me it does not and she has 3 people in that situation who are in the WRAG. What the hell do you have to do to get some money. This is proving very difficult for me and I am getting very upset and the prospect of my ESA stopping and the end of the month, and the fact that I am still probably going to be called for a medical and have to face that again, but I still could get nothing because I'll get put back in the WRAG, and won't be entitled to a penny........ :( xx
12th April 2012, Karen's letter to Atos
12 April 2012
ATOS Origin Healthcare
Cherry Orchard Road
I am writing to inform you that I have recently found out I am to commence renal dialysis. This is to start in approximately 8-12 weeks after I have had an operation to open up a vein in my arm for access for the dialysis to start.
Please could this be taken into consideration when considering which group I am placed in and could you please add this information to the recent ESA50 I sent to you?
Mrs K Sherlock
Friday 13th April 2012
I had a renal appointment yesterday and have been told I need to start in-patient haemodialysis.
It was a bit of a shock, but it could be of help to me because it is starting earlier due to the operation I have to have to open and join a vein in my arm to allow access for it.
Now I need to let the specific benefit departments know and I also so need to know how I should word this letter in the best way. So I am looking for some help with the right places and departments to send it to, along with a letter from my doctor. And also the best way to word the letter to them that I am writing?
Any help very much appreciated
Thanks guys and gals xx
I also found this information on the benefits and work website. I believe this is part of the new ESA rulings. Can somebody confirm this for me, the site is closed at the moment to questions, but I am sure the info is up to date. If the same info is on here that would confirm it for me?
"You will be regarded as having limited capability for work on any days in which you are receiving, or recovering from receiving, certain regular treatments: plasmapherisis; haemodialysis; radiotherapy or total parenteral nutrition. Are you having any such treatment?"
Saturday April 14th 2012
Thanks for the info.
I currently have an ESA50 in which was I sent back in February. This new treatment has just come to light. I have now got a letter from my GP with significant medical info in it too. He did it as a matter of urgency and had it ready for me on Friday, after only finding out the news on Thursday.
I have also emailed my MP's caseworker, but she is poorly at the moment, and hopefully will be back Monday as they are being of great help to me too.
I was intending on sending the stuff from my doctor by recorded or registered post after it's all been photocopied and scanned into my 'pooter.
I think that should be ok, shouldn't it, as I already have a form in?
Thursday April 19th 2012
Righty-ho. Hubby has sent all new info off. Special delivery to ATOS, and recorded delivery to JobcentrePlus, so we can track the process.
Now shall wait and see what happens. It will be very interesting. Want to know how they can consider someone who is in hospital on dialysis 3 times a week and then recovering on the days in-between to work. As well as coping with all their other conditions.
Will keep you posted as and when I know.
You know what is going on with me, I've been keeping you updated as I go, so that's all good.
You know my money is stopping at the end of the month due to the capping the government have made and I cannot claim anything else as my hubby works.
I just need a little bit of clarification on something though.
If I have an assessment/get a decision without assessment and I get placed in the Support Group am I right in thinking I will start to receive money again AND if I stopped receiving money does it then have to be backdated?
Any info much appreciated.
Ok, Thank you very much for that.
That was as I thought it was from trying to understand the new Bill
Now to wait and see what happens. Be interesting to find out what the new info brings, I was eligible for the support group even before my conditions got worse, and there were new ones, but I was still put in the WRAG............ xx
29th April 2012
“Get up, stand up. Stand up for your rights. Get up, stand up. Don’t give up the fight”…… Bob Marley
I’ve written for this blog before, so was more than happy to do another one.
Right, where are we now and what is happening to me?
Well, let’s start with the health side of things, as they have moved along since last time. Here’s a quick reminder of my medical conditions;
o DIABETIC AUTONOMIC NEUROPATHY (GASTRIC, CAUSING UNPREDICTABLE AND SEVERE DIARRHOEA), GASTROPAERESIS (CAUSING UNPREDICTABLE AND SEVERE BOUTS OF VOMITING), DIABETIC RETINOPATHY, PARTIALLY SIGHTED (LOSS OF PERIPHERAL VISION IN BOTH EYES AND SOME CENTRAL VISION IN LEFT EYE), HEART CONDITION, CHRONIC KIDNEY DISEASE, VITAMIN B12 DEFICIENCY, ANAEMIA, HIGH BLOOD PRESSURE, HIGH CHOLESTEROL, UNDERACTIVE THYROID, CHRONIC TIREDNESS DUE TO COMBINATION OF MULTIPLE MEDICAL CONDITIONS, ASTHMA
I don’t do this for any other reason other than to just jog memories, although the more astute will see there are a couple of bits of info missing from the list, that is because there have been some changes.
Firstly, there has been an awful lot going on with my kidneys. I have a fantastic renal nurse who has been helping me with lots of things. What I am moving closer to saying is that I am going to be starting dialysis soon. I first have to have an operation to raise the vein in my arm. I could not have the “normal” operation as my veins in the lower half of my arm are useless, and there are none suitable for doing this with, so I have to have a more complicated operation, but it means I will have to start dialysis 6 weeks after this has been done, and another vein may not be available. As my renal nurse said “You’re damned if you do, and you’re damned if you don’t”. How did it make me feel? Daunted and shocked. Like a rollercoaster ride, full of ups and downs, hurtling towards the inevitable. It had been sat in the back of mind for a while that I would need dialysis, I just didn’t expect it to be at the front of it so quickly. I am preparing myself for it, and I will cope with it, because I have to.
Also I have to have an angiogram as I have a heart problem. All I know at the moment is that my heart is not being supplied with enough blood, so I cannot undergo an operation that requires deep anaesthesia. My renal nurse, (there she is again) has said she wants me on dialysis before the angiogram as it is 90% certain it will make my kidneys worse as the dye that is used damages them further, and she wants the function that I have left protected before that happens. I don’t like the thought of it, but unless my heart gets sorted out, I can’t have the transplant operation and that’s what it’s all about, after all. But, in the meantime I still have poorly kidneys. I was supposed to be having a double kidney/pancreas transplant, but it has now been decided to try for the kidney transplant first and do the pancreas one later. This came as a bolt out of the blue, so going to see the surgeon for an explanation of this, waiting for an appointment for this.
So, currently the health road is still very much uphill, but it looks like there is a light at the end of it.
Now as for the benefits side of things. That’s become a thorn in my side.
My ESA is being stopped……………
Now, I have turned over in my mind how they can do this to me. Where it is going to leave us money-wise and what we can do about it?
The answer is; I don’t know.
I am no entitled to a penny more due to having a husband that works too many hours and brings in too much money.
I am worried and frightened, I do not see how they can just snatch this away from me. I am chronically ill and I am never going to get better, not even with the transplant will I feel better, all my conditions cannot be magically cured.
Also, I sent an ESA off a little while ago (February) and I have just forwarded lots more information that my doctor has compiled including some of my medical records and details about me going on dialysis and my other debilitating conditions. I sent this Special Delivery, I have tracked it and it has been received.
I fail to see how they can place someone who will be on dialysis, and in hospital 3 days a week with recovery days in-between in any group other than the Support Group. After all, where can I possibly work or even get involved in “work related activity”, anybody? No I thought not…….
That’s because what the government are doing is totally unbelievable. Stripping the most vulnerable of the essential benefits they need. No thought for the effect it will have. Just throw them on the scrapheap. Don’t worry if they can’t feed themselves or heat their homes, or pay for taxis to take them places because they cannot walk anywhere. No, that doesn’t matter, they are leeches on society.
The thing is, we are not. We need this money to have some quality of life, not scrimping and scraping to get through one month to the next, not being punished for something we have not done.
Nobody wants to be disabled or chronically-ill, it is horrible. So ill that you cannot even manage to make a drink, or get out of bed in the morning or even to enjoy what’s going on around you.
After 22 years of work, up to a stage where I was so ill I was away from my job, more than I was at it, my company had to let me go. I was costing them more money to pay me for being away from work than at work and I was only working 2 days in the end. I paid my NI for all those years, and yet the DWP suddenly have the right to call you and tell you that your money is being stopped because your year is up and you haven’t paid enough NI contributions. I’m sorry, but I have.
They can’t give you any advice on what to do next apart from “apply for income related benefits or go on jobseekers allowance.” Okay then, show me where the jobs are and which employer will take me on then? They can’t, and so we are back to square one again. How do we cope with this loss of money? They can’t answer that, apart from giving their very basic, useless and empty words of advice.
Read the words from the Bob Marley song I shared at the top of this article. And remember them.
We need to be passionate about standing up for our rights, and if we can make enough noise, and get enough people to listen then we can overturn the inhumane changes this parasitic government have made. If nothing else, we do still have hope and our rights on our sides………………..
Thursday May 31st 2012
This is just a little note to let those who are interested know that I have been placed in the Support Group.
It has been a long time coming and a big fight, but I have to say I am relieved. Now I can concentrate on me a bit more instead of all the crap I have been going through. Now all I have to do is get things sorted out with the hospital etc!
Thanks all xx
Yes I am. It is going to make such a difference.
The money side was never, ever the issue. Being placed in the right group was. And the fact that I have been will help me so much.
Thanks for your kind help, support and advice honey xx