This blog - different to my usual blogs - has been written in partnership with the author Mark Pearson. I hope patients will read Mark's account of his transplant as a cautionary tale to the damage that alcohol can cause, and that Doctors will read it and gain an insight into patients' mindsets, and how we can better try to help this group earlier on.
Money. It's all about money. There is never enough in the NHS, and funding cannot match the new technology and ever-increasing cost of new drugs, let alone the challenges of an increasingly unwell and growing population.
The debate on NHS care - free at the point of contact for all patients, versus privatisation - where everything is paid for, continues. Various models have been proposed, and the current series on NHS funding decisions NHS: £2billion & Counting on Channel 4 has highlighted some of these. Novelist Mark Pearson was featured in the first show. He went from receiving international media coverage as a Sunday Times bestselling author with James Patterson, to two years later being admitted to hospital for an alcohol-related liver transplant.
Mark is the new type of alcoholic patient that doctors now see. The image of all alcoholics as dishevelled down and outs, swigging vodka or extra-strength cider on a park bench are no longer accurate. As well as increasing numbers of younger patients developing issues with their liver as a result of binge drinking, there is a group of patients whom Mark represents. These are often middle-aged individuals, many of whom do not consider themselves to be alcoholics. They have drunk moderate amounts, consistently, for most of their adult lives. Sometimes socially; often a (generous) glass or two or more with dinner each night. Because they do not wake up craving a drink, and their drink of choice is "palatable" alcohol, they do not associate themselves or conform to the normal perception of an alcoholic. These patients present with raised blood pressure, or raised cholesterol levels. They might have this picked up on an annual check-up, or a work medical. As part of these, patients are asked how much they drink.
Most patients underestimate their alcohol intake, and the concept of units of alcohol is poorly understood. Home measures are inevitably more generous than pub measures. Sometime validated screening questions are asked to try and pick up this group:
"Have you ever felt you should cut down on your drinking? Have people annoyed you by criticising your drinking? Have you ever felt bad or guilty about your drinking? Have you ever had a drink first thing in the morning to steady your nerves, or to get rid of a hangover?"
Answering yes to two or more of these questions, indicates a potential problem, and is more accurate at detecting alcohol excess than some of the blood tests used. If these questions aren't asked, or the patient doesn't give honest answers, they are often reassured by blood tests done as part of the routine health check. This includes liver function tests - but tellingly does not include the most sensitive test for alcohol related liver damage (γGT) - unless it has been specifically requested by the doctor. So being told your liver function is "normal" doesn't mean it has not been damaged by alcohol. It usually means "you've told us nothing to make us think you have a drink problem, so we have done the standard liver test which won't always pick up alcohol related damage - and that's come back fine". And so the problem goes undiagnosed. Mark had drunk for most of his life, usually beer, sometimes 4-5 pints a night, sometimes only at weekends.Two years before his liver failure was diagnosed, he had some blood tests done which showed a mild anaemia. But his liver function was reported as normal. He had already started to reduce his drinking by then from previous levels, but more because of some weight gain than any worries about his drinking.
"I had gone weeks without drinking. I guess there are lots of definitions of what an alcoholic is. Was I addicted? Not physically, not really mentally. I was habituated that was for sure; I abused alcohol that is also for sure. If the test for addiction is measured in withdrawal terms then I would say I wasn't addicted. The main thing is people seeing that not considering yourself an alcoholic and still drinking enough to kill yourself is possible. It is important to remember that alcohol can play a part in health problems and ultimately death in a myriad of ways. Initially after what I thought was a stomach bug was getting worse, I phoned NHS111 who assured me to just stay in take plenty of fluids and rest up. I hadn't taken any alcohol since before the sickness started and didn't feel any urge to do so. When my symptoms didn't improve after about 10 days, I phoned my GP who sent me for a blood test. Later that afternoon, the phone rang. A phone call that was to change my life. My GP told me how concerned he was about the level of anaemia I was presenting with. I was admitted to hospital and after lots of tests, advised that my liver wasn't working well. I was discharged and told to radically change my lifestyle or there would be serious consequences. At this stage, no mention was made of whether a transplant was in the frame. When it became apparent my liver was continuing to fail, and jaundice levels rising even after eight months with no alcohol, I came to the point shown in the programme. My fiancée had never considered my drinking to be a huge issue either. She was shocked, horrified and completely supportive. Neither of us had any idea I was walking over a cliff."
Mark volunteered to go on the Channel 4 programme, knowing it would trigger debate:
"I felt it was fair for the public to form an opinion. Even if I didn't like what they had to say. Everyone has the right to join in the vital debate about our NHS. It is too simplistic to think it is simply a matter of party lines - as some would have us believe. So if my filming, and the others who agreed to take part in the programme, stimulates useful discussion then it has done a good thing. I knew I was putting myself up as a bogeyman, but the transplant unit asked me to do it, and I was happy to be able to do something for them, however little, in the grand scale of things, it was. If I helped raise awareness and possibly some people considered joining the organ donation scheme - then it would be very churlish to refuse the man, who if it turned out I needed it, would be saving my life. As it turned out that was exactly the case."
What about the issue of money? Does Mark feel he deserved the NHS to pay for his treatment?
"Katie Hopkinsmade a point on Twitter that people like me who could afford to have caused damage to myself through alcohol, or drugs, or overeating, or smoking, could also afford to pay for the help they consequently need. The issue she raises is one of responsibility and she is right to raise it. In my case it was quite simple, if you drink any alcohol again you will never be put on the transplant list, and if you drink after being transplanted your liver is very much on its own. It's fair! I am not sure how funding will change for the NHS in the future, but at the moment there are only three options - the NHS pays, the NHS doesn't pay and you don't have it done, or you pay privately. The latter is not an option for organ transplants obviously. If a means-tested system allowed for some contribution, to whatever percentage, to the cost of such an operation, few would turn down the opportunity In my case I certainly couldn't have afforded private care even if it was available for transplants. But if there was a choice between having to pay for it or die, then I of course would have sold my house, anything, to have the treatment I needed."
How did Mark feel when he got the call that there was a liver for him?
"I was extremely relieved and extremely saddened. The abstract concept of receiving a donor's organ was abstract no longer. Someone had died and that gave me the chance to live. Strangely I didn't feel scared anymore. I was aware, from being on the assessment process, how much care was going to be taken care of me and how brilliant, dedicated, driven and genuinely caring all the people in the transplant unit are. From Paul Gibbs the Clinical Director, to Neil the Healthcare Assistant. One of the things that became very clear to me very quickly was the shortage of organs that are available. I wasn't a donor card carrier myself for many years and so have no soap box at all to stand on with this issue. In Holland and other countries it is the rule that you choose to opt out of donor schemes rather than in. It is of course for individuals to make their mind up on these issues and it would be hypocritical for me to say what is right or wrong. So I won't. We are all, hopefully, capable of making our own decisions."
"The silly thing is I have learned that I am no less sociable and gregarious than I was when I was drinking. I still go to the pub and laugh and enjoy people's company. I don't drink but I don't laugh any less, or love any less, or care for people any less. I do still feel guilty, but guilt without action can lend to self-indulgence. So I am doing what I can and doing it as best as I can to make the donor's family not regret their gift. Not drinking for me, and I know I am only speaking for myself, is genuinely the easiest part of the process. Looking back now I can see how stupid I have been. I was aware of the drinking limits but in my opinion they were set very low deliberately. I know I am not alone in badly drinking above the guidelines. But for me I was stupid. Arrogantly so - for example I was aware that GPs sometimes prescribe double the dose of painkillers. So at home I was regularly taking double the dose of Paracetamol that the box stated. I just thought I was doing what the doctors would have done anyway. Not a good thing for your liver either to be put it ridiculously mildly. No excuses. Stupid. It is no exaggeration to say it was the most humbling and yet uplifting experience of my life. I feel a 100% guilty and ashamed, and a 100% grateful and life affirmed. The donor and his family have given me my life and the transplant team made me able to accept that gift. I truly hope they are not disappointed that it was me, should they learn so, and I will do absolutely everything to both treasure and nurture the gift I have been given."
Every patient has a responsibility to safeguard their own health. There are a million ways to find out how to do this, but the NHS cannot enforce healthy living. Ultimately it is the responsibility of each individual. Ignoring the advice on weight, alcohol, smoking, and exercise is no longer an option. In order to continue providing a basic service, tough funding decisions have to be made. It is not only a small group of patients - drug users, alcoholics, whoever you deem it to be - who drain NHS resources; it is all of us by our actions every day. At the current rate, the great NHS safety net may not be there when you need it, or you may find yourself on the receiving end of a decision not to fund your care, based on your health choices. The NHS is a very fragile glass house and no one can afford to throw too many stones.