September 2015
Let me introduce myself. My name is Elizabeth Mitchell I am a Company Director of my
own business, with a p...
MS is as individual as the person, with physical, mental and emotional problems, some of
which are not visible to others. ...
her to come to the ATOS Meeting with me. An afternoon of her time and loss of a half day
pay for her.
I’m so lucky to have...
anything gets better – they will be fined – heavily. I can assure you that should my condition
improve sufficiently for me...
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Poltical Conference speech- Conservative Final

Published on: Mar 4, 2016

Transcripts - Poltical Conference speech- Conservative Final

  • 1. September 2015 Let me introduce myself. My name is Elizabeth Mitchell I am a Company Director of my own business, with a previous role as a highly respected employee of Lloyds. I’ve travelled extensively, sometimes abroad, as a trouble shooter in businesses looking to downsize and become more profitable. I contribute to charity on a monthly and ad hoc basis – I built half an orphanage in Belarus. I’ve been a fund raiser for local good causes. I water and snow ski, dive, play tennis and squash and …….. Oh, sorry – that was my distant past. Now I try to forget that life and live every day in the present. My current reality is I am an unemployed – ex-Director/ex-employee. I am a confirmed member of our community who has moved from relapsing/remitting MS, which I worked so hard to disguise, to an undisguisable Secondary Progressive MS. Don’t ask me to sign anything – my tremor means I can’t write legibly. Don’t ask me to walk unaided to the local shop – I can’t. Don’t ask me to negotiate with your union, my cognitive abilities aren’t to be relied upon. Don’t ask me even for a clear opinion on a bad day – and as for my finances – ask my friend Fay. In essence – I am not the woman I was. I was diagnosed with MS in June 1988, by a renowned neurologist, Professor Ian McDonald at the National Hospital in London. This was after an attack that left me unable to balance/read/watch TV/see straight. Quite a shock for a woman of 27, newly married and coping with life ‘down south’. I had never heard of Multiple Sclerosis and was initially thinking the diagnosis wasn’t as bad as was initially suspected (Brain Tumour/Meningitis). Two long months later and an afternoon, sitting on the floor of Waterstones, reading everything I could lay my hands on about MS (remember no internet in those days) I was starting my education as to what I may expect ‘long-term’. Of course, we all think we’re ‘different’ don’t we? We all think ‘it won’t be like that for me’? And, I’m pleased to tell you apart from ten or so medium to serious relapses, ten or so lots of strong steroids and hospital stays, lots of pain relief, depression medication, vertigo, speech defects, double vision, 48 hour injections – am I boring you? That’s OK, because I chose not to bore, or concern, lots of my relatives and friends. I kept it all to myself. It’s been an up and downhill struggle – but I am so pleased to be able to say that I won ………………. For 27 years. I won, then I lost, and then I accepted I won because I learned or made up coping mechanisms – I let a few people in on help I needed and I relied upon them to help me ONLY when I needed it. I lost because I truly believed I WOULD NEVER NEED BENEFITS! Will there be anything to accept NOW I really need it? In February this year my GP and my Neurologist both confirmed that I would never work again. I was loathe to admit just how hard my life had become. I hope and trust you will never have to hear and accept those words.
  • 2. MS is as individual as the person, with physical, mental and emotional problems, some of which are not visible to others. This brings its own issues, in dealing with the general public, every day. Symptoms are different for everyone, but one thing is the same for all. MS is an INCURABLE DEGENERATIVE DISEASE. It does not get better for ANYONE. Extreme Fatigue, Tremor, Balance, Vertigo and Cognitive deficits are my main issues CURRENTLY. A Secondary Progressive diagnosis means this is likely to degenerate, as opposed to improve. Now I find myself in a very different place to the one I imagined I would be in 1988. Personal Independence Payment, as the name suggests, is not to be used to live on, and I reluctantly, applied because I need it to help me retain my independence, whilst I still can, in my own home. I’m one of the lucky ones – I’ve been able to hang onto my home. This will have to be sold to pay for care when I no doubt deteriorate to that space where I am unable to look after myself. So let’s put it this way, to retain some independence whilst I still can, I do not have the physical and mental capabilities to do many of the jobs you and I have never even thought about. Clean your house properly, go up a ladder, clean your windows inside, get things from my attic or top shelf in the kitchen, shop, cook, iron – the list of ‘dangerous’ things I can now do – or not do - is endless. I have the scars to prove it! With PIP I could employ a member of my local community to help me with these things. I worked incredibly hard during the 35 years I was continuously employed, with and through Relapsing Remitting MS, whilst paying top rate taxes and national insurance. I have now had to claim my early ill-health pension entitlement, age 53, from my company pension. Of course, this is not the amount I would have received had I been physically and mentally able to continue in my chosen profession. It should hopefully, if budgeted carefully, enable me to stay in my home. BUT I STILL NEED ASSISTANCE to live an independent life on a daily basis. One thing is for sure – I will not allow this illness, or the PIP process to take away my personal pride in my appearance or my stubbornness to try to appear as well as I can. After all, I would consider trying to appear less well than I currently can, to be defrauding the system. Do I look as if I would be interested in cheating the great British tax payer? People I have spoken to over the last months are similarly frustrated – and NOT ONE of them has had their initial PIP application granted. Is it part of the process that first requests are always denied? Is there a view that we will ‘go away’ unless we are very visibly disabled? And then (because we have no choice) we will continue to suffer the stress and worry which this process causes from the outset? Some with MS will go away, because they are too ill to cope and may not have a good and FREE support system (friends, family) around them who can help. They, themselves, are frightened, stressed, sad and hugely fatigued. They simply ‘give up’. The process of applying for a PIP payment is very long and very stressful. As I can’t write I had to rely on a good friend to complete the myriad of forms. Six hours of her time. I asked
  • 3. her to come to the ATOS Meeting with me. An afternoon of her time and loss of a half day pay for her. I’m so lucky to have a fantastic and strong emotional support system from my sister, Jane – and for that I am very grateful. I have two fabulous and strong friends who comes with me to appointments – but, I ask for as little as I can as I am unable to pay them for time, and salary lost in their jobs. I applied for Personal Independence Payment on 11th March 2015. I had a face to face assessment from ATOS in April. On 26th May I got a letter from DWP saying I did not qualify for any level of care or mobility allowance. The letter cited various reasons, including the opinion of the DWP decision maker that I could walk 200 m and that I looked ‘well kempt’. I was horrified. It had taken me some hours to appear ‘well kempt’ – and with a stroke of her pen, a Paramedic, and a DWP decision maker I have never met, decided I was not eligible for assistance. The next week I fell quite badly whilst walking with my stick. I still have the scars on my right knee and my Neurologist sites it as a ‘nasty excoriation of her knee’. This then became horribly infected due to my inability to fight infection. Of course, as far as PIP is concerned, I’m perfectly fine walking! I appealed, for which I sent five copy letters from my Neurologist where he had asked for me to see eye specialists (for the grey discs), a Psychologist for my cognitive issues, a Physiotherapist for my balance and walking issues, and two scans for my brain and spine. I also sent a list of the five drugs I was taking. On 28th July I received an answer to my appeal. Once again I was turned down. 20 weeks, huge amounts of stress, an attack of Shingles, and an eye problem later (early onset of cataracts, due to MS medication) …………….. But, please don’t worry about me - I’m not ill. Currently, I have been told I cannot reapply until my condition worsens – or 6 months, whichever comes first! My frustration is that despite the assurances from a highly qualified neurologist and GP that I have a well-documented and incurable condition, and despite my signed declaration on a form stating I cannot walk more than 50 m without rest and a stick, and despite a stressful visit to an ATOS Paramedic, who assumed my walking with a stick a short distance, and some rudimentary checks (which my neurologists have well documented over the years) the DWP decision maker determined that I am not mobility or personally impaired. Where were the tests and discussion of all of the things I CANNOTDO? I now live in fear of the fact that I will not be given any assistance. Basically, I feel as if I am being branded a liar and a Benefit Cheat. The stress and unfairness burns brightly in my heart. Is this the country I am so proud to live in? SO, why are we not able to change the system? If an applicant has an INCURABLE, LONG TERM, DEGENERATIVE disease – why can’t the DWP Decision maker MAKE A DECISION based on the applicants Consultant/GP Report? Why do we continue to cause anguish and further stress to MS patients? Sending me to ATOS to see a Paramedic is a waste of time and money! Don’t ‘check on everyone every 6 months’. Take a sample to check and clearly warn the MS claimant that if they don’t keep to their already signed declaration of updating the DWP if
  • 4. anything gets better – they will be fined – heavily. I can assure you that should my condition improve sufficiently for me not to require any assistance, you and they would hear me shouting from the rooftops. Or is it just too difficult to change these simple things? I read the speech that was given last year, at a Parliamentary event. What has changed? With that in mind – I would like to remind you of the last paragraph of that speech from LAST YEAR……. “I would ask the members here present to please rethink about asking patients with degenerative incurable conditions to review their claims for the sake of bureaucracy. Worst case scenario is that the stress to the claimant would bring on another attack. Depending on which nerves are degenerating depends on if we lose our sight, our speech, our ability to move at all etc. This is a very high price to pay for the sake of a helping us to pay for the time of another member of my community to actually help me.” Heart breaking wasn’t it? Thank you for attending today. Please don’t go away and forget about us – I would hate to hear the last paragraph I read being spoken ….. again …… next year. Because unfortunately we won’t go away – we have to continue to live, hopefully with the assistance from a Personal Independence Payment.

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