Sometimes it's ok just to be a patient

The British Medical Journal just came out with a heading that should have all patient’s jumping for joy - Let the patient revolution begin. As one of those patients who talks tirelessly about how important the role of the patient is in healthcare I was definitely one of those smiling when I heard about the article. But then I started to think a little bit more about things. A thought that hadn’t entered my head for a very long time suddenly found itself front and centre. What if a patient just wants to be a patient? Actually what if a patient just needs to be a patient? Is that still ok?

In my own bowel transplant journey this week I felt like a patient who needed some help as opposed to an e-patient or the term I always prefer to be described as an i-patient (meaning interactive in all aspects of my health care). I actually felt that it was ok to be passive and turn to my medical team for help and support as opposed to constantly wanting to be part of every decision as well as striving to help find the answers. Having started treatment for the bile mal-absorption I then underwent a CT scan to see if I had developed a hernia at the site of my stoma and where I previously had one. The results came back pretty quick to rule out a returning hernia so that was positive.

From CT I then spent the day back at the John Radcliffe Hospital doing a great impression of a blocked drain that was having Dynarod drain cleaners shoved in from both ends to check for blockages. Fortunately I wasn’t awake for most of the day. Sedation in my view is not a luxury but a necessity and fortunately there was no resistance put up by the doctor. Once sedated my day comprised of a colonoscopy and endoscopy with a balloon dilation and biopsies taken for good measure. The purpose of all of this was blockage at the join of where my new transplant bowel is joined to my own bowel. This area is known as the ileo-colonic section.

I am still waiting for a formal result from this day’s events but it did leave me not only feeling a little rough and sore but also a tad vulnerable again. I suddenly felt that I needed someone (in my case my surgeon) to take complete charge and help sort things out. That is what he is doing and within 24hrs I had started to receive text messages saying that he was looking in to everything. I am back in Oxford twice next week so should have some answers by then.

What this week has brought home is that no matter how interactive or how positive you are, as a patient there are times when you really do simply need to be a patient. I am experiencing some ongoing issues with joint pains – bizarrely my hands, feet and back seem to lock the moment I stretch them out in any way. The suspicion is that my bone density levels are poor and possible effects of the tacromilus anti-rejection medications but we will get to the bottom of it over the coming week or two. No matter what type of patient I am my faith and trust in my medical team has never wavered.

The question that I am still grappling with is whether there really is a patient revolution going on? Has technology and especially social media simply made patients more engaged and empowered? Has that has created a completely different dynamic in how healthcare gets delivered? This may well be true as is the undoubted fact that health self-management is gaining enormous traction especially with patients who have long term conditions. In that area I will just tease you a little with a new self-management hub that will launch soon. Watch out for crowdhealth – no website yet but there will be soon and it looks cracking.

I’m all in favour of patient power. This slideshare really gives you an insight in to what it is all about. I do believe that patients need to take more active role in how they manage their health but sometimes there is no substitute for just wanting your doctor to look after you.

Till next time x

6 Replies

  • Yes, please, I just want someone to tell me what to eat, when to eat it, what exercise to do and what time is my massage? Seriously

  • love your style Pat

  • I agree with the above. I am not trained as a doctor or nurse and what I expect is to be given the facts and advised on what they think would be best for me.

    When you are unwell you are not really in a position to make big decisions about your health that is the job of the professionals, surely.

  • True Lynne but also don't we have a bit of responsibility to help ourselves as well. Not necessarily medically but at least with self management.

  • We do, we do, and we have to be as informed as possible. We have to let the professionals know when something is not working. And we have to always ask informed questions. My neurologist says I am a "sophisticated" patient. I wish I did not have to be.

  • Sophisticated is a great compliment Pav - you are right though there are times when you just want to be Pav and not sophisticated. Be well

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