IBS Network

The value of the patient

Aside from the ups and downs of being a bowel transplant patient these last two weeks have been a welcome change from focusing on my own health challenges. Whilst phosphate levels continue to yoyo and my medical team and I grapple with bile salt levels, bacterial overgrowth, stomach dysmotility and now gastric colic reflux. All these issues in isolation would be fine but the combined effect has not been great. The fact that I was able to attend and participate at two conferences has been a welcome relief. Attending them has also been a challenge. It has led me to reflect on one point. What is the value of a patient?

I ask this question, not in the context of the fact that without patient’s healthcare doesn’t exist. That would be silly. No I ask it in relation to the value that patients bring to external events around health. In truth I believe that there should be no event without patients. Patients Included is a type of Kyte mark created by Lucien Engelen. His TedX talk sums the objectives up far better than I can.

Behind all of this lies the fact that actually patients bring enormous value to events. As a patient we almost feel like it is an incredible honour to be invited and that we are the token after thought. Actually if we really value the patient then we should be the first thought. Take the organisation for one thing. Most patients if they are asked to speak are still on medications, usually are not as fit and able as others and it takes far more planning for a patient to attend and speak that anyone else. Yet when we are asked we are usually expected to travel on the same schedule as a well person. Travel to and from venues on the same time frame with no thought or consideration for what we have to go through in order to be there.

Now I am not on a big crusade here to travel first class everywhere, although that would be lovely. (BA/Virgin etc – yes I would love a little pampering) No what I am saying is that if you truly value the input of a patient then show that you understand. Plan and allow for patients and what they have to go through to attend. A relaxed and less stressed patient will deliver even more value.

My conference journey started by attending an event Using Social Media in Healthcare. The key note was given by Dr Mark Newbold the truly inspiring NHS Chief Executive of Heart of England. He talked about his journey in to using social media and the fact that he now posts his CEO diary on his blog. He talked about the value of social media not just as a communication function but as a way of making a difference by being truly interactive. My role was being part of a panel discussion with my #NHSSM colleague Gemma Finnegan. I talked about how to use digital technologies as part of your healthcare toolbox when managing your condition. The main thrust was my belief that using basic technology such as text, email and of course social media changes the way we interact with our healthcare professionals. To me it is obvious. Maybe that is because I am a patient. To those on the other side of the fence the word “fear” seems to engulf them and be a barrier to engagement in this way.

From there I was invited to moderate a panel and be a key note speaker at Doctors 2.0 & You in Paris. I am incredibly lucky to be invited to such events. The idea of a few days in the Paris sunshine being mentally stimulated and challenged is phenomenal and the event didn’t disappoint.

I had the great privilege of moderating a panel entitled Patient Designed Healthcare. The panel examined where we are today and what the future might hold. The panel consisted of what I can only describe as inspirational e-patients (Kathi Apostolidis, Liza Bernstein) and a former hospital leader now using design-thinking to inspire better staff and patient experiences, Nick Dawson. A constant theme running through all the discussion was use of social media and how to engage and influence.

We debated briefly what the term e-patient meant. I prefer to be known as an i-patient (an interactive and informed patient) but that is for another day. We finished the panel with the following question. What is the role of the patient in the future? It was answered brilliantly in one word by Gilles Frydman founder of Smart Patients – “Centre” In other words the patient will be firmly at the centre of all healthcare in the future. I guess the question that springs to my mind is why is that in the future? Why are we not there now? If you value a patient then we should be at the centre. The NHS has this saying “nothing about me without me” A bit of a tick box at the moment if you ask me.

My key note presentation took a somewhat different form. Twelve Imodium, antibiotics and two anti-sickness injections later and I was ready to leave my hotel for the session. I had the honour of presenting with one of the world’s leading intestinal transplant and intestinal failure dieticians Marion O’Connor. The fact that Marion treats me is an added bonus.

We talked about stripping back all the talk of apps and new technology and used our talk as a conversation between patient and healthcare professional about how we actually interact on a daily basis. What it is really like on the coal face, in the outpatient clinics, on the wards and with day to day interaction. I’m lucky, our relationship and the one I have with Anil Vaidya, and my surgeon is unique.

The real question is why is it unique? Why are we all not interacting like this? It would be easy to put all the blame at the door of the doctor. Believe me I still feel that they shoulder much of it through their fear of change. However if a patient is truly interactive and a patient enters their relationship with their doctor in a collaborative way then instantly the dynamic has changed.


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