So-called experts

Someone, please tell me what to do now?

Posted on May 11, 2015 | 4 comments

Someone, please tell me what to do now?

Last Thursday, my husband and I skipped off to the polling station with my downstairs neighbours and our children. They played tag between the voting booths and we shushed them and giggled at the same time, delighted to be there and to vote. For weeks leading up the event, I’d been obsessed. I hadn’t just been reading articles in the Guardian, my usual read – but also my political opposites, the Telegraph and even sometimes even the Daily Mail. I wanted to know all sides. And, I hadn’t just read. I was writing myself. My post on the shocking truth behind Samantha...

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Update on my plea to NHS England to save my life

Posted on Apr 30, 2015 | 23 comments

Update on my plea to NHS England to save my life

Today, I received the call from my doctor that I’d been waiting for, that all of you – my friends and family especially – have been waiting for: My second transplant has been approved by NHS England. The past six weeks have been some of the darkest days of my life. That so many of you got behind me, including hundreds of total strangers, was completely overwhelming. I am very grateful. But, the truth is the real heroes here are my doctors, who pressed for this treatment despite it being expensive and only given in very rare circumstances. They toiled behind the scenes on my...

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An open plea to NHS England

Posted on Apr 28, 2015 | 50 comments

An open plea to NHS England

Two years ago, my world fell out from under me when I was diagnosed with Acute Myeloid Leukaemia. I had no idea. The day my GP phoned and asked me casually if I might be able to make my way up to King’s College Hospital that afternoon for further tests, I had been on my way to the leisure centre. I continued on and swam 30 laps before I arrived. When the doctors told me, the first words out of my mouth were, “But, I don’t have life insurance.” I felt a dread, as if Death with his scythe, lurked just behind me. “My children,” I thought over and over again, “my children.” It was...

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24 hours left to register. Don’t think your vote will count? Think again.

Posted on Apr 19, 2015 | 0 comments

24 hours left to register. Don’t think your vote will count? Think again.

There are only 24 hours left to register in Britain to vote in the General Election. Don’t think your vote will count? Think again. As Tania Tirraoro of Special Needs Jungle points out there are 12 million votes out there, ready to be cast, if disabled people register and vote. According to BBC Ouch, that’s 20% of the voting age population. Tania, who is both a parent to a child with special needs and disabled herself, says: “It’s not just my own health condition that depresses me. Looking up from my own self-pity brings me face to face with the way the Coalition...

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Why the Tory “right to buy” plan is just wrong

Posted on Apr 15, 2015 | 4 comments

Why the Tory “right to buy” plan is just wrong

I’ve been conversing with a mum this week. A mum like me, who is also desperate for a home that doesn’t endanger her severely disabled daughter with every step she carries her down a staircase. I read about her plight earlier in the week. Leanne Mhamdi lives in Grangetown with her husband, son and daughter, Nicole. Nicole has epilepsy. Like my daughter, May, she also has profound learning difficulties and cerebral palsy. She is tube-fed and relies on their care 24 hours a day. The day after I read her story – the Tory party announced with great fanfare their new flagship...

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