Crohns, Bowel Transplant,

I recently finished watching the brilliant BBC hit legal drama Silk. At the end of the series there was a vote for a new head of chambers and the two barristers started their speeches with the question “who am I”. This question has been swimming around in my head ever since. Who am I as a bowel transplant patient? Who am I as a long term patient? But in reality do those questions really matter? Should it just be; who am I, the individual?

The trouble is that it is such a multi layered question that I don’t know where to begin. There is one common thread that impacts on everything. My health. So I thought it was time to take stock and answer the who am I question from my own recovery perspective as a long term patient and participant in the healthcare space.

Did you know that the term patient originated from the Latin word patiens? It means “one who suffers.” Do I define myself as someone who suffers? Actually I don’t. Who am I? I think of myself as someone who was just dealt an unlucky hand. Our healthcare system is designed to help those who are suffering. The trouble with that is that it is a model that financially and practically isn’t sustainable. This is especially true in a country such as the UK where healthcare is free to all at the point of entry. At a recent National Voices conference that I attended 3 heavy weight politicians, Steven Dorrell MP (Conservative), Andy Burnham (Labour) and Norman Lamb (Liberal Democrats) played out a big political “love in” over the future of the NHS. Basically they all said the same and wanted the same which led me to asking the question. Why not depoliticise the NHS? Naturally there was no response. However one key theme was about refocusing our care to prevent ill health as opposed to treating the “ones who suffer.”

If I am already a patient is it too late for someone like me to work on prevention. Categorically the answer has to be no. Part of who I am has to be a patient who will take responsibility for my health and do all I can to prevent future difficulties. You may argue that some of that is out of my own hands. Being compliant, vigilant, and engaged and in constant communication is surely part of a prevention toolkit.

I spoke at a great Pharma Times Directors Club meeting all about access to early medicine. I was the only patient at the event. I said on the stage that it felt that I had been invited behind the curtain of a very exclusive club. The event was really informative but actually very frustrating. The pharmaceutical spokesman from NHS England made it clear that it was incredibly difficult for innovative treatments to become part of the NHS unless they go through the usual 10-15 year cycle of trials and obtaining licenses. Therefore the idea of early access is fine as long as someone else (in this case pharma) pay for it. That perturbed me. For all my thoughts about who am I, it got me thinking about whether healthcare at times really knows who it is. Stifling innovation, whether that be medicine or technology cannot be good. Now I fully understand the financial dilemma here. Every patient would want every treatment or technology available to them at all times if it would improve their health outcomes. However there has to be a more equitable compromise.

Who am I? Well I am the patient who wants total co-production and engagement. I am also a patient who has a duty to turn up to all my appointments on time. To go and have the tests that have been ordered and to follow the treatment plan. Not all patients do that. A recent Medscape article stated that in the US “a survey of 1000 patients, nearly 75% admitted to not always taking their medications as directed.” In the UK NICE reported that figure at being between 30-50%. To be honest these figures shock me. This non-compliance, amongst other things, is driving a hole in the health system that needs to treat me. Who is my health care system? Ideally it is a system that is at the forefront of everything that can help prevent suffering but then treat it when it happens.

Right now I am a patient who is still battling the bacterial overgrowth, bile malabsortion and feet and hand joints that go in to spasms when it feels like someone is sticking a knife in them. There is also the tingling sensation that happens a couple of times a day down the right side of my face. I have been on a wheat free and dairy free diet as part of the FODMAP programme. It has not had the desired impact but it was always a bit of trial and error. As of today I get dairy back in to my life and go back for blood tests and a review next week. So to end this paragraph but answering my own question who am I the answer is probably frustrated right now. In truth I feel a bit of a fraud even complaining. My health is so much better than it was. Am I striving for a utopia that won’t exist? Perhaps how I feel now is who I am going forward. Is it selfish to want more? As a long term patient do you have to accept that there will always be something? Is that part and parcel of being a patient? I don’t have all the answers, may be you do?

My final dilemma here is about who I am has seen me think of the future. Whether the person I am is equipped for what the future brings. Don’t interpret that as self-doubt but more of self-reflection. As a patient you don’t always get time to think about the future because you spend so much time worrying or simply coping with the now. This week I will be at the PiF conference with a presentation entitled “doing it my way.” Up until now I have had full belief that doing it my way was good. I suspect that every patient does it their way and does that define them? Does it define me? In a climate of buzz words and phrases such as patient centric, patient engagement, epatient, ipatient does it matter what way you do things. What does matter is that you know who you are.

Till next time

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