The stories we hear every day here at Patient Opinion are often snapshots of people's experiences of healthcare. Such stories rarely capture what it's actually like to live with a long term condition. This guest blog from bowel transplant patient Michael Seres provides a fascinating insight into his life and how much being a long term patient defines who he is. We and he would welcome your thoughts and comments.
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 heavyweight 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 healthcare 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, maybe 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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Response from Mr Anderson on 1 May 2014 at 18:11
Great wee piece Michael which has really made me think about who I am as a person and how my health makes up part of my persona - because – like you - I feel it probably is a common thread stitched into the fabric of who I am. Being honest though I find it quite impossible to put myself completely into the rhetorical space of being a person in relation to being a patient. Because yes, I can't get past the 'Who am I?' and - more than this - how I am listened to and involved in my healthcare as an individual. I have health complications as a result of my long term condition, but those health complications I view as a complete pain - and I recognise - probably makes me a wee bit of a pain as well as a patient.
In responding to your post I also thought I must tap into that point you make about prevention as I am someone whose social care package is everything about prevention of ill health - as much as removing barriers to my participation in life. Right now there are great fears that many people with long term conditions throughout the country may be about to experience cuts to their care package which will impact on their health?
So who am I? Well – like you Michael I am the patient who wants to see total co-production and the offer of engagement. But – I might get into trouble for saying this - I am not a patient who sees himself with a duty to turn up to all his appointments on time. And that is only because I need more engagement. Because I sure will go and have the tests that have been ordered and follow my treatment plan as best I can – but only when the tests, treatment and timings have been thought through together by me as the patient and the consultants and care professionals.
You see, as an individual with many barriers to break down to maintain my independent living, professionals have to recognise the need for flexibility within an individual’s treatment plan. That is because not all patients with LTCs can do everything at the drop of a hat. I need flexible health services that can fit in with my efforts in living a good life. Having had a wee disagreement with a consultants secretary, because I had missed an appointment I was threatened to be taken off his case list, once I highlighted the background to my working life – I was met with the response, ‘Oh – I didn’t realise you were working’.
Fulfilling my work and voluntary commitments are so important to me and ‘my life’ and keep me in control and aid my independent living. I admit there have been times in the past I have been all to blasé about my commitment as a patient, but that has only been because of what I feel, up until now, has been a disdainful approach from our statutory health and social care services to younger disabled adults with perhaps less severe neuromuscular conditions.
You know I never studied as much as I should have and didn’t realise the term patient originated from the Latin patiens? Its meaning of “one who suffers” kinda fills me with terror. Obviously health conditions can cause pain and suffering, but the word “suffers” is bandied about too often in relation to those with long term conditions and disabled people. As someone who uses the later term to describe themselves I am utterly happy that it doesn’t imply “suffering”.
Like you – in terms of my health I define myself as someone who is made up as they are – just because that is the way it is.
Who am I? Like your good self I certainly don’t think of myself as someone who “suffers”. The problem is for me society still thinks like that and it perpetuates this kind of paternalistic approach to looking after people who “suffer” from muscular dystrophy, who “suffer” from cerebral palsy or who “suffer” from dementia.
I have seen great advances in the attitudes of health professionals in every facet of my health care – 85% of health professionals I feel get the person centred approach to care – much more than social care professionals. To this end – again like you – I feel it is wrong of me to complain.
Now Michael – you know we can’t agree on everything – I think our healthcare system is designed perfectly well to help those who need medical intervention and not necessarily anyone who is “suffering” from anything. Like what we were saying about “suffering”. Not all people who have impairments because of dementia or Alzheimer’s are suffering but many of them on the other hand obviously are. But with proper taxation is the NHS not financially and practically sustainable? Of course it is and that is why it works and remains free to all at the point of entry. We shouldn’t forget that this is a particularly rich country and, IMHO, the wealth of the country can be much better distributed to aid fairer access to health and social care.
This is one of the reasons I was so moved to respond to your post Michael, because I think we should remember social care is supposed to be afforded to those who need it and with the use of a progressive tax system can be delivered to everyone who needs it and in a more affordable fashion.
I fear I should stay away from the depoliticising of the NHS. I would, however, love to take up the theme of refocusing our care to prevent ill health as opposed to treating the “ones who suffer.”
I love your style of writing and love the fact you take the opportunity of emphasising that people with long term conditions - someone like your good self, or even someone like me - are not beyond intervention to stay healthy.
Yes, I am a disabled person, yes I like to take a role in making decisions to better my health and well being. No, I am not one who “suffers”.
So that’s who I am. A well intentioned individual, an occasional patient and someone who wants to help make resources go as far as they can. But I am not always like this. If health or care professionals get overly paternalistic or patronising or forget to put me at the heart of my care I might just start acting up a bit.
Take care Michael and keep up the brilliant pieces you do.
Response from Jodes on 1 May 2014 at 21:30
I was born with a genetic disorder which was not diagnosed until later on in my life. I have up's and downs in my life the same as anyone but I dont let my condition define me. I have nothing but praise for everyone who has ever cared for me under the nhs service and I am grateful for it as I don't know where i might be now without it. My only gripe is that my condition seems to lack the help of an overall specialist or a coming together of a MDT like it would in the states, maybe if I had a specialist I wouldn't feel like I was on a merry go round at times being sent from dept to dept.
Who am I?I am the woman who deals with life the best she can, I am the woman whose scars people dont always see, I am the woman whose pain people cant feel. But I deal with the hand I was dealt because my nan taught me that in life their is always someone worse off than me.
Response from QPR on 8 May 2014 at 11:09
Hi Mr Anderson
Thank you so much for such a wonderful response. Your writing takes me on a journey and I really feel that I have got to know you :)
I very much agree with your comments about going to appointments when you understand what they are for. My feelings behind my comments were not really aimed at engaged people such as yourself but at those who know they must attend but don't. Yesterday for example I was astounded to hear that some patients who take anti rejection meds to stay alive refuse to come in to clinic and collect a prescription if they run out. They would rather wait for the homecare company to deliver them even if it means missing doses and damaging their health.
I also agree with you about the lack of understanding that patients have a life and cannot always make appointments at a drop of a hat. This is why I advocate the use of skype and other technologies for basic follow ups. There is often no need to travel there and back for a routine follow up or to receive regular test results.
I love the fact that we disagree. It makes for stimulating debate. The one thing I will say is that if we were all asked to pay £1 more or £10 more on our tax to keep the NHS freee would everyone agree with this? I would, what do you think?
Response from QPR on 8 May 2014 at 11:13
Thanks so much for sharing with me "who you are". I totally understand what it is like coping with an illness on the inside whilst to the outside world everything seems perfect. For me that is often one of the hardest parts.
I am sorry that you don't have one overall consultant. Is that because your condition is so rare or because your trust doesn't employ one?
I hope that you will stay as well as you can and thanks so much for taking the trouble to respond to my post.