Greetings and welcome to my disabled blog, thank you for taking the time to visit and hope my ramblings aren't too difficult to read and understand. If not I apologize in advance.
I am a 40 year old woman who lives with several disabling conditions. At the age of around 13/14 I was diagnosed with spinal deformities including a curvature at the base of my spinal column, this was after more than a year fighting with a doctor at my practice who diagnosed me 3 times with a urine infection, once over the phone without seeing me, and gave me huge tablet to swallow which I thought could pass as a horse tranquillizer instead of treatment for an infection. I was told repeatedly by him that 'I was too young to have back problems', and after returning several times was basically accused of it either 'being all in my head' or 'I was making it up to get off school'. Neither opinions helped me as my pain and discomfort continued and only led to me doubting myself as to if I really was suffering from back pain, if the qualified doctor said it, it had to be right, right?!
After several failed attempts to see my own doctor I finally saw her and immediately upon a short examination she diagnosed me with a curvature of the spine (and referred me to an orthopaedic surgeon at the hospital), hammer toes on both feet, said I walked incorrectly due to these and had a calcium deficit in my body which caused the feet spasms which felt like my feet collapsed down the centre of each foot causing immediate and incapacitating pain. I was given soluble calcium when I found I couldn't drink the half pint to pint of milk a day which was originally proscribed for my calcium deviancy.
One x-ray later at the hospital the surgeon assigned to me said I can prove the doubting Thomas' and Thomasina's wrong. I did have spinal problems and my x-rays clearly showed them. Along with the curvature at the base of my spine I had a deformed vertebrae at the base which instead of being basically soldered in place was totally mobile and rotated side to side. This vertebrae had what looked like a small deformed rib on the left side and when the entire bone rotated it would basically nip at nerves in my left side (this was the verdict in my later teens for why my left arm and leg would loose all feeling and become useless without warning for weeks at at time, sometimes longer).
I was also given prescriptions for an anti-inflammatory and a pain killer. Never would have believed that 25 years on I would still be using such medications plus more aside but there you have it.
I was also measured for a spinal brace which I wore for over a decade until it was sure that my spine had stopped growing (or rather my bones/skeletal structure had completely matures) to avoid any further deformity and curvature occurring. My Mother had to pay for the majority of the cost of these braces which needed to be replaced every few months to fit my growing bones.
I also went through two courses of physiotherapy. The first one stopped by my specialist at the hospital as it made my physical condition worse rather than better. I also had more x-rays and tests than I can possibly recall.
In my early to mid twenties I began experiencing swelling in my left side which was really painful. Finally forcing me to turn to my doctor for the first time in several years. I was referred to the hospital but my doctor was sure I had IBS (Irritable Bowel Syndrome) and the beginnings of a hernia type injury in my lower left groin but decided to err on the side of caution hence the hospital referral. I spent a year being shunted from pillar to post at my hospital. At the end of the day they couldn't diagnose what was wrong with me and basically threw up their hands and walked away leaving my doctor to deal with my symptoms.
My doctor then treated me for IBS, and referred me to a physiotherapist at my practice for both my groin pain/swelling and for my back problems which were triggered in part by the other two conditions. So I spent a few months attending weekly physio appointments at my surgery. All whilst taking not a single day off work. I was proud of myself. I finally finished a full course of physiotherapy which I couldn't manage in my teens when I was first treated for my back problems. Changing my diet and doing daily physio for my back and my side/groin I once again felt I had control of my life rather than my illnesses controlling it.
Then at the age of around 28 I broke down and finally went to the doctor when a pulled muscle (which I believed I had) didn't get better after a couple of months of suffering it and instead got worse.
I was shocked that my 'pulled muscle' was immediately believed by my doctor to be Rheumatoid Arthritis, I was flummoxed as I didn't believe I was old enough to have arthritis as I erroneously believed this to be an 'old folks' problem.
After about a year and a half of continually changing medication I was referred to the hospital because my doctor said my condition was accelerating too quickly. By this time it wasn't just my side/hips area and the odd swollen fingers/wrists it was my knees, hips, ankles, feet, wrists and fingers. All swollen up like angry balloons and I couldn't fit the largest size of protective gloves from my workplace fit over my hands any more and couldn't stand up without help.
Six months after referral as well as six months unable to work I got my diagnosis confirmed by the hospital and was given a prescription for a disease modifier to add to the anti-inflammatory and pain killers. I was also referred for yet another course of physiotherapy. I was given a crutch to walk with which meant I could walk short distances without holding onto someone else like I had had to for the previous months since becoming unable to work.
I was given early retirement due to disability from my job of 12 years due to the long term uncertain prognosis from my doctors and hospital specialists.
A year later, physio finished but still needing the crutch more than ever, I was also handed the diagnosis of Fibromyalgia when attending my Rheumatology Clinic. Also had to start taking a powerful muscle relaxant.
Fast forward a few years and here I am. Living each day in continual chronic pain as I deal with not only my disabilities but also my medication, side effects, and interaction of both conditions and medications. I also now have a badly compromised immune system due to my conditions and the medications I need to take to help me live with them. I am at the 'at risk' list at my doctor's surgery which means I get a yearly flu jab and have to have blood test every six weeks or so to catch any further drop in my immunity as well as keep an eye out for organ damage caused by my medications.
I also have to be very careful about my exposure to others, any slight cold or virus can attack me quickly and harshly as well as take much much longer to recover from.
I was re-assessed for my Incapacity Benefit in 2008 and was told I was unable to work still with my condition having deteriorated and prognosis not good as I was told I would never get any better but would in fact get worse as I had a degenerative disease. So little or no hope of my ever being able to work should there ever be a job I could do or an employer willing to put up with my limited abilities and frequent absences due to flare ups of any or all my disabilities. I was told I would be re-assessed no earlier than December 2012.
When the migration and re-assessment for moving to ESA (Employment and Support Allowance) was announced I was assured that as I had a re-assessment date I wouldn't be put through the assessment till that date. So imagine my shock when I received my letter saying it affected me now, almost 18 months prior to my earliest assessment date provided.
I waited nervously for my phone call which came on the 1st of July, within a fortnight the dreaded form was delivered. It took me over a month to complete as I can only write in short burst due to difficulties holding a pen and writing. Finally with about a fortnight to spare I posted back my completed form and waited nervously for a medical appointment to arrive through my door saying I had to take part in the dreaded ATOS medical.
After two months of waiting I get a letter out of the blue from DWP saying I had been awarded ESA saying I had limited capability for work. I was relieved and figured my information backed up by the doctor and hospital specialist had proved that I was unable to work. Should be because I got the benefit without a medical at all, but my relief only lasted for two paragraphs when I was told I had been placed in a WRAG and would have to attend a series of six WFI to allow my advisor to provide me with a plan of action to return me to work.
So on the same page they were saying that I had a limited capability for work but on the same page they announced clear and concise that I would be returning to work. The decision maker's crystal ball must be something else entirely. All this decided without my being spoken to either face to face or on the telephone by a medical professional.
No explanation given to how they decided I belonged in this group, or how they knew I would be able to be rehabilitated and return to work.
Also a second letter which arrived with this one from the DWP informed me that as I was receiving Contribution Based ESA that come April 2012 I could be limited to only 12 months on this benefit as they were reforming it again and limiting the time you can receive it. I would go as far as to say this bill passing is a foregone conclusion, that and once it passes into law your 12 months will be back dated to the date you were first awarded this benefit. Which means come the 19th October 2012 I will be cut off from this benefit regardless of my health or ability to work. Or not to work.
I was advised to appeal this decision, so I got the GL24 form and wanted at least the reason why the decision was made without a medical or even a face to face assessment that I could be able to return to work hence why I was placed into this group. I felt I deserved that at least from whomever had made this life altering decision for me on the basis of a set of Yes/No questions and a scoring system.
In preparation for writing my appeal I followed advise that said to check the descriptors for the Support Group and see if any applied to me as this would greatly help me in any appeal I mounted. Like many my mixture of more than one disabling condition isn't covered by this long complex and mistake ridden evaluation form.
I didn't think to copy my original answers but knew that I had said No I absolutely couldn't do the first activity in the form. Worth 15 points in and of itself. Making me eligible for ESA. Going through the form and taking the points awarded to me for the questions I remember answering which were worth points I have an estimated 39 points awarded through these Yes/No questions. Until I get a copy of the ATOS report given to the DWP which they used in their decision I don't know which points I did get awarded in the end only that I got the qualifying 15 points needed.
For the SG points don't count, descriptors do, if I got 15 points for my first answer on the ESA form I should get the SG as it's one of the descriptors. But I won't know anything until I hear back from the Decision Maker at the DWP whether he's reviewed my claim and moved me or whether he stands by the original decision and my counter claim moves onto the appeal process.
My Appeal was delivered yesterday and I checked via tracking. I paid for next day delivery so I could be assured that it got to the DWP and I know it was within the 1 month appeal limit.
Today I got my first WFI appointment through for the 15th November at 9.45 am. Completely ignoring the fact I have stated and re-stated that it is at least 11 am before side effects of my evening meds drowsiness clears enough allowing me to safely and physically be able to travel. All in all not an encouraging start to my experience with WRAG and ESA in general.
31st October 2011
Just a quick update. Today I had my yearly check-up at the Rheumatology Clinic, I had deteriorated so much it shocked my Rheumatologist. My RA has moved into my shoulders now, my left shoulder so badly off that I can't use my left arm. As I didn't have any swelling around my affected joints upping my disease repressants wouldn't help so Dr Vinod offered to given me a steroid injection right into my left shoulder joint.
He also asked me to talk immediately to the Occupational Therapist, which I did, seeing her she immediately took note that I had zero functionality after asking me some simple questions about coping with everyday tasks like dressing, washing, making a simple meal and eating a meal. So she asked in the Physiotherapist she works with with patients like me. The Physiotherapist immediately switched me to comfy crutches rather than the old fashioned regular crutch I've been using for years. I was also upgraded to using two crutches instead on the one I had been struggling along with.
I am also awaiting appointments for a full assessment with both therapists so they can help beginning to get me functionally independent, meaning when I no longer have my Mother to act as my carer as she does now I will be able to live independently in my own home rather than go into a state run home with 24/7 help on hand.
Unfortunately this help and my updated condition as listed by my specialists and therapists came too late to be included with my appeal to the DWP which I had to have in by the 1st of November, the day after my appointment, so wasn't included with the appeal I sent back.