Reform or no reform, decision or indecision, government choices about the NHS have real consequences for patients like me

2011 is already shaping up to be a hugely important political year. We’ve had the Arab Spring and in the last couple of months alone, landscape shifting national crises in phone hacking and the riots. Coalition government is still a whole new kettle of fish that could boil over at any moment. No one’s quite sure, still, where Ed Miliband is going to take the Labour party. The Euro continues to dance with death. And Obama may have killed Bin Laden but is yet to throw his own economy a convincing lifeline.

Amidst the naming, shaming and blaming in the aftermath of England’s rioting, debates about coalition cuts and reforms have once again been lost in the robotic chanting of ideology. Earlier this year the general public mobilised in a reassuringly democratic fashion to force a pause or “listening exercise” in NHS reform. There are whispers in some parts that David Cameron and Andrew Lansley intend to ignore the concerns of the people, under the radar. But Nick Clegg, following his electoral and referendum humiliation in May, ensured us he’d keep an eye on them. Trouble is no one trusts him anymore.

What I’m about to write is more personal than political. I’ve said before that all my political writing has an element of my personality, in that I do my best to express strong opinions, beliefs or half formed ideas I’ve concocted from things I’ve read or consumed. Even professional political commentators are aware that their own preferences influence their coverage. But I’m the first to admit that, as a young man, I am often dealing naively in the abstract. My opinion on defence cuts or the symbolic importance of the Euro is rather ignorant and useless in reality. The NHS however is for all of us and can affect the quality of our everyday lives dramatically. We should all feel able to speak out about its future.

In late September I will begin university life after a gap year I probably wouldn’t have chosen to have. A couple of years ago I was very ill. I lost a lot of weight and barely ate anything. I was frequently in severe pain and unable to socialise with friends in the summer holidays. I could muster enough energy to complete school work and little else. Eventually I was diagnosed with the digestive condition, Crohn’s Disease (http://www.nacc.org.uk/content/home.asp).

After passing through various rungs of the National Health Service I found myself with a steady and capable team of staff at the Inflammatory Bowel Disease clinic of my local hospital. A variety of treatments got me through Sixth Form and I was relieved to do well in exams, unaffected by the Crohn’s. In order to continue my recovery I chose to have a gap year, although it didn’t feel like I had much choice. I simply had to get healthier.

I started a new treatment of fortnightly injections. This was intended as a longer term solution because I had been taking powerful drugs that could have harmful side effects in the future. Thankfully the injections worked and continued to do so. I could return to a “normal life” with the limitations of my condition minimised. I felt grateful to be as healthy as I could be. My worries were mostly those of ordinary people my age and I was able to grow as a freelance writer and enjoy the year.

Now though health related stress is making a comeback. With university imminent I am organising the altered delivery and storage of my treatment. And at the last meeting with my doctor a few months ago I was told that the National Institute for Health and Clinical Excellence or NICE, who are basically in charge of what doctors can spend on expensive drugs, would want to reassess my case at some stage. The guidelines say that if you’ve been well for a year you should be taken off the costly treatment. I was assured this wouldn’t happen during my transition to university but I am not naive. At some point the decision will be taken away from my doctors.

So then we come back to NHS reform. I had always been instinctively against the predominantly Conservative proposals. But my doctor said something along the lines of; if it were his choice he obviously wouldn’t even consider withdrawal of the treatment for a long while. David Cameron has constantly talked of empowering GPs and specialists to make decisions like this which could benefit patients like me. Was I against these reforms or not?

The main problem is a lack of understanding. Do you fully understand what is being proposed? I don’t. I’m betting no one, bar those involved with the actual legislation, really does. The pause has actually complicated things further. In fact even those with all the facts of the legislation can’t comprehend every little consequence in real life for real people. Letting doctors decide sounds good. But shouldn’t the bulk of their time be spent treating patients? Shouldn’t someone independent make such decisions?

My attitude towards NHS reform has taught me that whilst I lean to the liberal left or centre with my political thinking, my actual opinions can be rather conservative. Change has always stressed me out in everyday life. If something as vital as the NHS ain’t broke, don’t meddle with it, especially when the country is trying to save money. I got better eventually, that’s all that matters.

I’ve long thought that the real way to help improve standards and ensure sustainability for the future is to cut down the sprawling responsibilities of the NHS, whilst reinforcing vital areas. It seems logical and fair that treatments that aren’t essential should not be given priority. Equally those that bring about their own illnesses should come second to the more deserving and hard done by. We need tougher health based taxes to directly fund the NHS and ease its burden, doing whatever we can to discourage the abundance of drinking and smoking cases that weigh it down. Granted this view comes from the fact that I was born with asthma and have other conditions, like Crohn’s and eczema, I could do nothing to prevent. I hold a selfish view. But then everyone gets their opinions from somewhere and all I believe in is a fair, efficient health service.

Again though what I thought I believed has been turned upside down by what’s happening to me in real life. NICE are the body responsible for ensuring that the NHS spends its money wisely and on those who need it. They are also the body that could at any point in the future remove my funding and leave me without treatment. I might stay healthy or I could plunge back into an illness it will take a long time to escape from. It could be even harder to recover second time round and the injections might not work twice.

The NHS is something Britain is envied for around the world and it is a genuine reason to be proud of our country. Cameron is saying Britain is broken again and pictures of the riots have been beamed out internationally. But we can be proud of the NHS. Overall I am happy with what it has done for me but the uncertainty hanging over my future proves it’s not perfect. It can’t be. It aims to be perfect, trying to make everyone better all of the time. Because it reaches so high it can’t get it right for each individual; whatever politicians decide to do will not change this fact.

But every decision they do make about the NHS will have life changing consequences for someone, somewhere in the system. For people like me
and people far worse off than me. So they should continue to think carefully
and trial new ideas before making sweeping changes. I’ve written before about
the government’s NHS plans but this article is an admission. I do not know
whether it’s best to stick or twist. All I can yelp ineffectually into the
blogosphere is that I hope the decision makers understand the gravity of what
they are doing, and that we keep doing our best to keep up and pay attention.