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.
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