Dealing with Doctors

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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Why I love my half-brained baby

Posted on Dec 1, 2014 | 6 comments

Why I love my half-brained baby

Praise be all parents who lovingly pack a hospital bag for their child knowing they will be wheeled into surgery the next day. On Sunday night, I packed up my daughter’s clothes and nappies and all the essentials — plus her Minnie Mouse pillow and treasured, baby blanket — for her hip surgery the following day. Finally, I packed her favourite toy, a monkey music toy. On the bottom, I wrote in big letters “Property of May”. Last time she had surgery, someone took her monkey toy and placed it in the black hole of the children’s toy room in the ward. I panicked. That toy is not just my daughter’s favourite; it is her best friend, her comforter, her joy, her connection to the world. May is five and she is brain-damaged. She has very little cognitive or physical abilities. This surgery is her second this year and won’t be the last she needs to help her growing body because she doesn’t move or support herself in any of the ways another child would to develop normally. And, that breaks my heart. But, it’s not the whole picture. May was born this way. In the days after her birth, the shock of this situation was one I found difficult to get past. I thought surgeries like this would define our life — that we would be in and out of hospitals constantly. And if not hospitals, than therapists’ rooms or dieticians’ clinics or doctors’ surgeries. At first it felt like that. Now, our lives have settled into routines and the shock of her brain injuries are long past us. May’s medical needs are far less than we originally imagined. Instead, we make a point of enjoying our lives. After all, those homemade chocolate chip cookies aren’t going to make themselves. It would be easy for my mindset to remain at my daughter’s bedside in the hospital. But, I want to be where those warm cookies are. We try to focus on what May can do, and what she does enjoy. Ice cream and cuddles and long drives in the car. She loves Julia Donaldson books (she was the witch from Room on the Broom for Halloween). She loves Bob Dylan. She loves Minnie Mouse. And she loves her little brother (when he isn’t driving her crazy). May loves music and she’s brought it into our lives. She and her daddy spend hours singing songs together. I take her to see the London Symphony Orchestra and for walks in the park because she loves birdsong too. Her laugh is infectious. She sticks out the tip of her tongue when she is concentrating and it is completely adorable. Why not focus on these things? Why focus on surgeries and developmental delay? On Sunday night, I placed May’s monkey toy in her hospital bag. In a world where I can control little of my daughter’s condition, I can control this. I can ensure that when she wakes from surgery, that ratty monkey toy is there by her side to cheer her up. Just like she brings joy to all of us....

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Upcoming hip surgery grrrr: Part II

Posted on Nov 23, 2014 | 1 comment

Upcoming hip surgery grrrr: Part II

It’s a universal truth that all parents want to receive as little information possible about their child being cut open and stitched back together. Right? Oh, joy. It’s surgery season. May will receive surgery on her hips this coming Monday. Previously, you may recall that the hospital was refusing to allow us to do her blood test at our local hospital. They relented, thankfully. What would have been hours in the car and pushing her across the length of a huge hospital when I am weak and my immune system is suppressed, turned into a 15 minute drive and 30 minutes in the hospital. Easy. My husband emailed some questions to a specialist nurse about the surgery because he couldn’t be at the initial meeting about it. Usually he is but, he has missed so much work to be at my bedside, only I attended. His questions regarded the muscles that the surgeon told me he may release during the surgery. What were these muscles? How will that effect her post-surgery? And so on… Of course, he couldn’t write the surgeon directly. We had to use a nurse from the team as a messenger like we are six-years old, back on the school playground. This same lack of communication happened prior to her dental surgery as well. SIDE NOTE: It doesn’t have to be like this. In Haematology, where I’m seen, I have several doctors and nurses’ emails; they were given to me as a matter of routine, without me asking. In Haematology, my questions are answered within 24 hours. Subsequently, I feel more confident about my treatments. No one there ever makes me feel like I’m trying to break into the VIP section of an exclusive club if I have a query about anything major or minor. His response was emailed back through her — a response that was shorter than the questions we asked: Mr** will examine May’s hip and hamstring muscles under anaesthetic. The muscles will only be released if neccessary, in order to protect the hips for the future. Please tell me: is this brevity a typical “surgeon response” or should I continue to hold out the hope that not all surgeons are like this? I worry that this is what parents like us receive because – hey ho – May is never going to walk anyway right? She doesn’t need a hamstring or hip muscle. Better to “release” the problem altogether than work to enable her to bounce and kick which she takes great pleasure in. Furthermore, perhaps there was no need for an explanation beyond this because we are the parents of a severely disabled child. I mean, we wouldn’t understand the importance of a hamstring or how the surgery works anyway. This is something I have previous coined ‘Parental Brain Deficiency Syndrome’. Parental Brain Deficiency Syndrome: (n.) When a doctor thinks the parents of a brain-damaged child are also brain-damaged. My husband was furious. A dismissive response only makes us more nervous to wheel May into surgery. A different nurse phoned us tonight after a well-worded email from my husband basically threatening to withdraw consent for the surgery unless he received some answers. Turns out “releasing” doesn’t mean completely separating the muscle from the body. It means surgically placing cuts in the tissue to relieve pressure and pain. Why did no one explain this to us in the first place? We were frantic with worry. We almost cancelled her surgery. It is infuriating. Surgery Monday. Stay...

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What’s happening to May’s hips?

Posted on Nov 11, 2014 | 2 comments

What’s happening to May’s hips?

A year and a half ago, May had a major hip operation. She recovered well. There were some lingering issues — like she still crosses her legs and you can see one of the metal pieces holding her hip bone in place under her skin. Not nice and not ideal, but much better than the pain she had been in. Why did she need surgery at three years old? You probably shouldn’t read this if you are squeamish. In recent months, May has not been doing as well. At the time of her dental surgery, we suspected her pain wasn’t entirely in her mouth and that theory has been proven right. She can barely stretch her right leg out now and instead holds it mid-air, bent in towards her torso all day long. We’ve been supporting her with pain relief and massage, but it’s not enough. A last minute cancellation + me calling/emailing/begging means that May will undergo surgery in only a couple of weeks. They will remove the metal pins in both hips. As May grows these do not, so she is understandably in some pain. The surgeon will also release tendons or muscles that are inhibiting a more natural, uncrossed movement in her legs. We have mixed feelings about this. While the last surgery helped her immensely, it also left her in quite a good deal of pain. The team encouraged us to join a botox research trial under the proviso that if May needed it, we could still give it to her at a later date — but then they were dismissive when we asked them to administer it. We were told a seizure team would be at hand during her stay, but the doctor on that team never communicated with us. Then, May’s seizures increased in a manner I warned them of pre-surgery – had even videoed for them – and no one was proactive about it. The surgery worked. The nursing staff was amazing. But, I was left with a lingering feeling that, outside of these two points, May’s general well-being was disregarded. Once she left the surgical theatre, the surgeon’s job was done. She was in agonising pain for months. There were follow-up meetings post-surgery but our concerns about her were dismissed. So, I’m worried. Very worried. This time I insisted on botox during the surgery. The surgeon told me this surgery won’t be nearly as painful or intense as the last one. I said, “Well, last time she cried in pain for a month straight, so let’s say she only cries for two weeks this time, that is two weeks too long.” He agreed to the botox. Yesterday, their team nurse phoned me to say one of May’s blood tests taken during her pre-op appointment needs to be redone. She needs to make the full, 3 hour round-trip back to this hospital in central London for another one. After pressing, I learned the test is to establish whether her blood clots well. Despite the additional challenge of me making this repeat journey while I have leukaemia, I have been told it is “too complicated” a test to do elsewhere – even at our local hospital where I am seen in one of the best haematology departments in Europe. This kind of laziness and disregard for both my health and May’s I find infuriating. I’ve written to say that, no, we will do the test at our local hospital and I’m awaiting their response. I know she needs this surgery. Desperately. But, it is exactly these situations that leave me feeling...

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