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Decision Maker Tells Mother Her Daughter’s Terminal Organ Failure Is ‘Your Opinion’

February 2, 2016

I found this heartbreaking story on the ATOS Miracles Facebook page. I usually share the links to Facebook statuses directly from Facebook, but this story is so heartbreaking that I don’t want to take the chance of anyone not being able to read it. Please share as widely as possible.

This mother talked to the Decision Maker last week and told him, “my daughter is dying from organ failure”. He said ‘that’s your opinion’. Her daughter had just been turned down for PIP for the third time. She has had a lifetime of health problems which have spread to many other illnesses. Aged 28 she now has end stage organ failure and will die without transplants. Whether a donor comes or not she is living the quality of life of someone at the end of their life. No PIP.

To anyone terminally ill your claim should get fast-tracked with a DS1500 form which your doctor fills in, not you.

Here’s the family’s entire heartbreaking story. Should be read and shared to all politicians, all dwp managers, etc. This is moral bankruptcy and cruelty of the highest order:

Louise Hughes: My beautiful daughter was diagnosed with Type 1 diabetes at the tender age of 4, the diagnosis was traumatic, made more so by a ham fisted retired Army doctor stabbing away at her little arm, shouting at her to sit still because he couldn’t find a vein. She was sitting in my lap screaming as blood spurted all over her yellow t-shirt. A week later she collapsed and was rushed to the Cambridge Military Hospital in Aldershot where they found her blood sugars were sky high and subjected her to a series of blood tests. I’ll never forget her screaming “no more needles mummy, no more needles!!”. As a result she has a deep rooted needle phobia, how tragically ironic is that? Anyway, years passed, she grew up, went to university and enjoyed life like any other young person, got a good job and met a wonderful young man.

But then 2 years ago life kicked her where it hurts, as her health slowly started to deteriorate. She’s had Type 1 diabetes for 24 of her 28 years on this planet and has no cognitive memory of life before diabetes. To cut a long story short, she was diagnosed with Stage 4 diabetic kidney disease in the spring of 2015, her kidney function was about 14% and getting progressively worse. Just before Christmas she was told she is now in End Stage, her kidneys are working at 8% capacity, she is dying of organ failure. She’s had 3 applications for PIP turned down, the last one being a week ago, I’d supplied additional medical evidence from her consultant surgeon and specialist renal nurse outlining the enormous impact her condition is having on her physical and mental health. She’s had 2 fistula surgeries, where an artery is attached to the nearest vein to create a larger blood vessel to facilitate dialysis treatment, they both failed because her veins are too fragile, the surgeon is going to make another attempt further up her arm next week. If that fails she will have a canula permanently fitted into her abdomen into which the dialysis chemicals are poured. She is on the active transplant list for a pancreas/kidney transplant at the John Radcliffe Hospital in Oxford which is positive in a way, but she is struggling to comes to terms with the fact that someone has to die in order for her to have a chance at prolonging her life.

She’s had 3 diabetic retinopathy surgeries, involving cutting into the cornea and lasering the retina at the back of the eye. One of the surgeries bled out and she had to go back to theatre to have the eyeball removed, cleaned and put back into the socket …. not for the faint hearted. This has weakened her eyesight and left her sensitive to harsh or bright light. She also undergoes monthly iron transfusions as her blood count is so low, coupled with regular blood/tissue matching tests for possible donors. Given her acute needle phobia, her bravery is humbling.
She is now so sick that people literally stop and stare at her in the street, she is in constant debilitating pain and walks (when she is able) with a stick. As her kidneys are barely working she is on a protein restrict diet, but her condition and medication have robbed her of her appetite. She’s too weak to lift a kettle, chop vegetables and most of the time she can’t face food without feeling nauseous. She vomits copiously for hours every morning and has urine and bowel problems. Basically her life sucks.

She lost her job as a result of her poor health and now relies on her fiancé, and me, for financial help. But hey, we’ve got our marvellous benefit system haven’t we, designed to help people in their time of greatest need? Not a cat in hells chance!!
She’s not entitled to a single penny in benefits, not one bean. The PIP application process is cruel beyond words, the ATOS interview was demeaning, humiliating and inhumane. Someone with spurious medical knowledge gives their opinion after an hour of meeting the applicant?!! I accompanied my daughter to the ATOS interview and requested a written transcript, it took 6 weeks to arrive and was almost laughable, were it not so vitally important, in its lack of detail. It barely correlated at alł with what was said on the day and I have challenged everything.

SORRY THIS IS SO LONG. 😕

Last Monday 25th Jan, I posted by recorded delivery, all the additional medical evidence to the DWP to be looked at again. On Friday 29th Jan I rang the DWP to confirm that they had received the envelope and was told ‘yes’ they had and it had been scanned onto the system on Wed 27th. I was then informed that a decision letter had been sent out on the same day! She had been turned down again. I asked how that was possible, I’d sent in quite a pile of documents for consideration, surely there had been a mistake? Nope. I’ve submitted written evidence to the Public Accounts Committee inquiry into outsourced health care companies, so I rang the petitions clerk to update her, she was horrified. Half an later a Case Manager phoned me and we had a long chat, she was very apologetic and said she would ask the Decision Maker to phone me, which he did. My word, what a pompous, self opinionated man. He told me that he had taken into consideration the ATOS report findings, he obviously hadn’t bothered to read any of the additional evidence. I asked him if he had any medical knowledge or expertise and he replied ‘no, but I am trained in interpreting medical evidence relating to benefit claims’ …. whoopie doo!
I told him my daughter is dying from organ failure, he said ‘that’s your opinion’ and when I said that people stand and stare at her in the street because she looks so ill, he said ‘that’s nine of my concern and doesn’t affect my decision’. He constantly interrupted me and spoke over me when I was talking, which I found incredibly rude.
I was shaking and felt physically sick when I put the phone down.

Now, I’m a tough old bird and not a lot upsets me, but I am beyond livid by the heartless way in which sick and disabled people are being treated in 21st century Britain. It’s almost akin to the Nazi persecution of the sick and disabled in World War Two. How on earth do those poor people with nobody to help and support them through the PIP application process manage?!

So, Mr David Haley, Client Executive of ATOS …. ‘Client Executive’??!!! – what sort of job description is THAT?? – I will see you at the evidence session on Wednesday 3rd February. I’ll be listening to every word you utter and watching you, look me in the eye if you can.

23 Comments leave one →
  1. February 2, 2016 12:23 am

    Reblogged this on 61chrissterry.

  2. Maria permalink
    February 2, 2016 1:00 am

    Sadly yes, I recognise this as to the welfare system of our time, where no-one is sick enough to be on it, neither when you are dying or if you are already dead. And it seems not as many people care about it, as they used to do.

    • Joan Edington permalink
      February 3, 2016 4:12 pm

      Until they’re sick themseles, of course.

  3. February 2, 2016 1:26 am

    Reblogged this on Benefit tales and commented:
    I found this heartbreaking story on the ATOS Miracles Facebook page. I usually share the links to Facebook statuses directly from Facebook, but this story is so heartbreaking that I don’t want to take the chance of anyone not being able to read it. Please share as widely as possible.

    This mother talked to the Decision Maker last week and told him, “my daughter is dying from organ failure”. He said ‘that’s your opinion’. Her daughter had just been turned down for PIP for the third time. She has had a lifetime of health problems which have spread to many other illnesses. Aged 28 she now has end stage organ failure and will die without transplants. Whether a donor comes or not she is living the quality of life of someone at the end of their life. No PIP.

  4. Jeffery Davies permalink
    February 2, 2016 5:51 am

    You think your story is terrible but more and more these sad storys of people worst of than yourself atos maximus crapita you now the names are doing the government’s culling of the stock through benefits denial abuse from our ministers just like that summer of 41 where they had killed thousands of disabled mentaly ill people rtu ids reign at the dwp 96thousand died yes it looks like their plans aktion t4 is working without much of a ado
    jeff3

  5. February 2, 2016 8:02 am

    I am so sorry…..

  6. February 2, 2016 9:25 am

    Reblogged this on campertess.

  7. Sarah permalink
    February 2, 2016 9:58 am

    PIP is all about scoring points. Unfortunately people with a long term condition(s) and or impairment(s) often do not state their answers in away that ATOS and the DWP award points resulting in no PIP despite being severely disabled by several long term conditions and totally dependent on others. The Government and DWP apparently think they are awarding PIP unnecessarily to people who score all their points using aids and appliances. They want to give these people vouchers for appliances such as false limb or those currently prescribable such as a catheter or leg or stoma bag, or aids such as a perching stool, long handled sponge for someone with arthritis so they can apparently cope independently without the need for PIP! The consultation period ended last week. Individual needs did not seem to be a feature of the consultation.
    How can a person with type I diabetes with at least 2 major complications including severe visual impairment, and end stage kidney disease at the point of needing dialysis or transplantation dependent on 2 other people for activities of normal living not qualify? It is vital that anyone filling in a PIP assessment form, or going for a face to face assessment with ATOS gets expert advice first. This claimants downfall was probably she was not on dialysis yet due to problems with fistula creation. It is vital she reapplied as her condition will deteriorate, but with expert form filling guidance.

  8. February 2, 2016 10:40 am

    Reblogged this on The Greater Fool.

  9. February 2, 2016 10:48 am

    Reblogged this on Christopher John Ball and commented:
    Welcome to the United Kingdom under self styled disability champion David Cameron – How does the sod sleep at nights? Jean Paul Sartre said “Fascism is not defined by the number of its victims, but by the way it kills them.” All Prime Ministers want a legacy; well Cameron’s legacy will be written upon the gravestones of all the people his policies placed within.

  10. February 2, 2016 10:51 am

    Not since the rise of the Nazis has there been such a consistent lack of humanity. It’s time to call this what it is, genocide. This is an intentional culling of the poor, the sick and the disabled. The people participating in this are no better than an Auschwitz prison guard. There is an intentional disregard of medical evidence that leads to these ridiculous decisions which is intentional and Iain Duncan Smith is culpable. I hope one day we get our Nuremberg and we ensure that the mantra “only following orders” is considered just as unacceptable an excuse as it is in trial of Nazis.

  11. February 2, 2016 10:51 am

    Reblogged this on sdbast.

  12. February 2, 2016 11:22 am

    I am sickened to tears by this. Pure and utter evil, another IDS wannabe gaining pleasure in the suffering in others. I hope one day this Mr David Haley has Karma hand him just the same

  13. jane carter permalink
    February 2, 2016 12:20 pm

    I had the same trouble with benefits, turned down, in the end I asked for a home visit for my assessment a wonderful man came out listened to me and 2 weeks later I got pip, and it was back dated too, don’t give up fight them every step,

  14. February 2, 2016 3:36 pm

    this is awfull cant believe this is happening my son has diabetes type 1 so worrying I hope to god things change for your daughter and gets what she is entitled to

  15. February 2, 2016 9:46 pm

    Reblogged this on racheljgood and commented:
    I’ve written a blog post about this, but this is the main story so on reflection here is a reblog.

  16. Joyce Roll permalink
    February 3, 2016 10:22 am

    Go for it lady you will have many who support you today and hoping and praying that you and your lovely Louise meet with success . I for one will have you both in mind .

  17. Joyce Roll permalink
    February 3, 2016 10:33 am

    What has happened to the lovely country that us oldies grew up on . All I can think is that we benefitted too much from the opportunities given to us and pushed our more affluent citizens off the perch when it came to careers and jobs .With increased population and a decreased pot to share between all it is ‘ Blow you Jack I’m alright and to hell with the rest of you ‘ . For younger people I am so sad that they have never known a sharing caring Britain .

  18. Mark permalink
    February 3, 2016 1:05 pm

    Lets not forget this government told doctors & nurses they could only afford a 1% pay increase while awarding themselves 10%! You know, the ones who look after us when we’re ill? Pure SCUM!

  19. February 3, 2016 1:35 pm

    Reblogged this on wgrovedotnet and commented:
    All I could do after reading this poor girl’s horrific plight was sob my socks off. What kind of monster is this David Haley?

Trackbacks

  1. Benefits for humanity | racheljgood
  2. Decision maker tells mother her daughter’s terminal organ failure is ‘your opinion’ | Same Difference | Vox Political

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