Posts Tagged "nhs"

I have some major news to share

Posted on Jun 22, 2015 | 16 comments

I have some major news to share

For the two months, I’ve kept quiet about something. A few of my friends know, and certainly my family does, but the story still seems so outlandish to me that I’ve barely said anything to anyone about it. I’m in remission. Actually, I’m not just in remission. I’ve been in remission before. This is different. To read more click here.  

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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 Cameron’s Daily Mail article went viral and had over 100,000 hits, crashing my little blog for several hours. I’d also written about what being disabled and on the housing registered looked like (Answer: not good) and posts about finding childcare and the challenges of returning to work when you have a disabled child. I’d even bared my soul and my desperation at NHS England for torturing me for six weeks on whether they would let me live or die – a circumstance brought on by a Tory-led push towards privatisation that was costing the NHS billions of pounds. I wrote all these things and I thought, “Well, some people in the electorate are bound to listen. No one wants these circumstances brought upon themselves or their loved ones.” But, the truth is, people sympathised with my story (and other like mine) but they didn’t relate. They don’t see how these cuts will hurt them or their children because it hasn’t happened to them yet. £12 billion in cuts have to come from somewhere. And it isn’t just going to be the cancer sufferers like me or the disabled children like my daughter – it is going to be everyone, Tory voters included. The campaign was won on a rhetoric of fear. Fear of immigrants. Fear of welfare lairs draining resources. Fear of Europe. Fear of Scotland. I didn’t get any of it. I wouldn’t – being an immigrant myself, who used to be a teacher, but now has to depend on benefits. (And, I really didn’t get the fear of Scotland. Now, we may get exactly what the Daily Mail and the Tories terrified the nation with: the SNP so strong they will be a major voice in Parliament, so strong they can rule themselves and leave.) But I am tired of reading about how selfish or self-serving or greedy Tory voters are. I don’t want to believe that. There is an elite element of the party that is rich and out of touch with the rest of society (one of them is ruling the country now). But, my neighbours and friends and family who voted Tory – and I’m assuming some did – probably did so for obvious reasons. Like that we live in a conservative country. Or, that David Cameron painted himself as compassionate and looked more “presidential” than Ed Miliband. That people like their local Tory MPs – and having met Robert Buckland MP, who led the inquiry into childcare for disabled children, I can see why. That people don’t like change and the Tory campaign made theirs a campaign of fear based on exactly that. No one in the country believes my six-year old, severely disabled daughter should have her benefits taken away. No one in the country wants me to be denied a treatment to save my life so that more money can be spent privatising the NHS. But, this is the circumstance we are all in now. I’m not sure what to do next. I don’t believe social media campaigns work. Yes, they...

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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 behalf, arguing my case and my life. They started six weeks ago with the initial application and did not give up, even when I felt I was. I worry that a story like mine will take away from the fact that the NHS is one of the greatest health systems in the world. (And that’s not just my personal assessment, Britain’s health care system comes top out of 11 western countries, spending less than any except New Zealand and with the USA at the bottom while spending twice as much.) I fear that people will use my story to illustrate how it doesn’t work, how it deserves less investment, more privitisation. So, I’d like to use this great news of mine to say very clearly: the NHS does work. It is exactly the money wasted in the billions by this Coalition government on reorganisation and privatisation – that got me in this predicament to begin with. The NHS has given me years of life and also saved the life of my severely disabled daughter. While there are clearly problems with a system that would force my doctors to fight for my life and then leave me hanging for six weeks, I cannot fault the care my daughter or I have received. So, I am feeling very grateful today. And cheering! I plan on growing old and wrinkly. I can’t wait for all my hair to turn grey and my liver spots to come out. Bring on old age! Bring on...

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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 a basement office. A slender window, high up on the wall, separated me from the passing of people’s ankles. I begged them, “Please, I can’t leave without some good news.” “You are young,” the consultant said encouragingly. “Only 40 years old. You are otherwise healthy. You have options. There are treatments. And you will be seen by one of the best teams in the world.” It wasn’t a light boast. The haematology team at King’s College Hospital performs more transplants in the UK than any other hospital. One of my consultants, for example, is developing a groundbreaking luekaemia vaccine. It is the largest bone marrow transplant centre in Europe. People come from all over the world to be treated at King’s, and my one bit of luck was that King’s was my local hospital. My care at King’s was outstanding. Six months later, I received a bone marrow transplant and my recovery progressed without complication. After the hair loss, the fatigue and many dark days, there began to be days of lightening hope. Tentatively, I made plans again. I began to worry over normal things, like how my disabled daughter would cope with travelling abroad. I also started writing again and even swimming, the absence of which I’d really missed. In addition to a terrifying wave of emotions, I felt foolish when I came out of remission. So ungrateful for those months of freedom. Again, that basement. Again, an enveloping dread. I became conscious of my husband’s hand gripping my knee. My eyes darted about the room. My consultant spoke gently about treatments moving forward, only this time, they would probably only extend my life, not save it. Except – and here they used words like “rare” and “exceptional case” – there was one option that could save me, a second bone marrow transplant. The team had had a lengthy discussion about it, and they were unanimous, I should have it. But, it wasn’t up to them. It was up to NHS England. I sobbed. I drowned in sobs. What, I asked, is NHS England? My doctor took her time to try and reassure me about the process, though I was barely able to follow. How they’d fill out an Individual Funding Request (IFR) on my behalf. It would take about two weeks. The Tuesday after Easter they’d have a decision, we were told. Day after day, I sat at home waiting for the call. It was meant to be two weeks. It’s six weeks now. No word on how long the decision will take. This wait is psychological torture. I am really struggling. Emotionally, I cannot cope. Then I made a discovery that shook my confidence further. Online, I found a blank application for the Individual Funding Request to NHS England. Questions on the form included: 9b. If this treatment were to be funded for this patient on an individual basis, would the decision set a precedent for other requests? 11. What is the evidence base for the clinical and cost effectiveness/safety of this...

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Let’s play the “What we wish therapists would say” game

Posted on Feb 23, 2015 | 1 comment

Let’s play the “What we wish therapists would say” game

After a collective 24 hours in therapies, medical appointments and general ‘Team May’ meetings this week, I have had my share of so-called experts. Because I don’t swear on my blog – and a big hello to my students reading this right now – I’ve decided to imagine a world where so-called experts didn’t make me want to take a sharp implement to their face. In this world, so-called experts say things like: 1. I won’t tell you again that you can’t live in your own home because of May. Until I find you the perfect home, I will not frighten you about this monumental issue of having a roof over your disabled child’s head. 2. It’s really none of my business what your daughter is wearing in this weather. 3. We will mange for one day without that exceptionally minor cushion for May’s seat. No need for three people to remind you of the urgency of that really minor cushion. 4. I saw there was no formula in May’s bag. So, we just gave her milk/juice/water rather than interrupt you at work. 5. I’d really like to hear May’s father’s opinion on this. 6. May looks so comfortable asleep. Let’s just leave her like that to rest. 7. We wiped May down when we saw she had vomit on her because we would be horrified to find any child sitting in their own sick on a special needs bus. Anyone want to add...

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