Ian Birrell has a piece at the UK Independent that is a must read for all parents of special needs children. Ian chronicles the nightmare he’s experienced with the NHS for the past fifteen years. Reading about his experiences working his way through the NHS with a profoundly disabled child, I found myself saying, “oh my god” under my breath over and over again, as each narrative was worse than the one before it.
Since I spent the past few days in the hospital with my four year old daughter, whom I had to take to the ER on Tuesday morning, my very good experiences with our small town hospital are fresh in my mind and are easy to compare. I can’t imagine experiencing what this couple has with the NHS the past fifteen years. Take a look at some of this family’s experiences, and keep in mind, they are not an exception. If you have a special needs child or a child who is chronically ill, this will be your future with a government run health care system:
It was a simple thing. Another blood test, some more investigations into whatever flawed gene or missing protein might be the cause of my daughter’s troubled life, with her terrible seizures, her blindness, her inability to walk or talk or eat unaided. Over the past 15 years, there have been many such attempts to identify her condition.
One year later, we asked the doctor, a top geneticist at one of the world’s most famous hospitals, what had happened to the results. His office told us a rambling story about financial restrictions and the need to send such tests to a laboratory in Germany. They said there was little he could do but promised to pursue our case.
It was a bare-faced lie. The precious vial of blood had been dumped in storage and forgotten. The following day it was despatched to a laboratory in Wales and 40 days later the specialists came up trumps. They identified her condition, an obscure genetic mutation called CDKL5…
Of course, everyone loves the NHS now. It is officially sacrosanct. Our doctors are deities, our health care the envy of the world. And anyone who says anything different is an unpatriotic schmuck who should go and join those losers in the United States. (Although American doctors terrified of litigation would have done all the tests possible on my daughter if I’d sufficient insurance, and would think twice about lying to patients.)
So forgive a harsh dose of reality. I used to share these delusional views, wrapped in a comforting blanket of national pride over Bevan’s legacy. But that was before the birth of our daughter sent us hurtling into the hell of our health service. Since then, hours and days and months and years have been spent battling bureaucracy, fighting lethargy and observing inefficiency while all the time guarding against the latest outbreak of incompetence.
Despite my daughter being under palliative care, my wife currently spends two hours a day struggling against the system, to say nothing of the other endless appointments that go with being primary carer of a severely disabled child. Right now, following some dramatic hormonal and physical changes, we are waiting to talk to one of our daughter’s doctors: the first call went in three weeks ago, followed by three more phone calls and one email. No reply yet.
Or take the request for a bigger size of nappies, urgently needed because of our daughter’s sudden weight spurt. A simple thing to sort, you might think. Not in the parallel universe of the NHS. It has taken four weeks, three phone calls, two home visits from community nurses to assess our needs and fill in the requisite forms – and still looks like being one more week before there is any hope of delivery. It may seem comical, but the result is a distressed child and endless extra laundry.
The warning signs of what lay ahead came on our first visit to Great Ormond Street, when there was a young couple who had travelled down from the north-east of England in front of us, their tiny sick baby almost lost in its blankets. “Didn’t anyone tell you – your appointment’s been cancelled?” the receptionist told them breezily. They looked at each other despairingly.
Such insensitivity is all too typical. When my daughter was seven she underwent a major review at a specialised unit in Surrey, spending three days and nights with sensors connected to brain-scanning devices glued to her head, under constant video surveillance while my exhausted wife comforted her and stopped her ripping off the electronic pads. A huge strain, but worth it given the hope of a breakthrough. When we went to get the results a few weeks later, there was the usual wait. After eventually summoning us, the neurologist asked why we were there. Then she opened our daughter’s notes and asked what was wrong with her. Then she couldn’t find the results. We stormed out, me in fury, my wife in tears.
Read all of Ian’s piece. It’s a glimpse into our future if Obama succeeds in getting his way. This is made an even more frightening prospect as we are learning that Obama and his statist allies in the House and Senate are not unlike kamikaze pilots from World War II. They will do what they can to get this done even if it means killing any reelection chances they have in 2010, and President Obama already said he is prepared to be a one term president if that is what it takes to implement his health care plans. When politicians are willing to give up their ultimate prize, their political positions, to shove this nightmare on us, how do you stop them?
