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