Last Friday I had the great privilege of speaking to a group of 4th year medical students at Cambridge University. It was really incredible to engage with around 130 students all of whom will soon be on the wards potentially treating you and me. As part of the talk I described what it was like being diagnosed aged 12 with Crohn’s Disease and what the journey as a long term patient has been over the last 30 years. Of course I touched upon my experiences with intestinal failure and then spent a while talking about my bowel transplant but the main focus was charting my journey from a patient engagement perspective. Preparing for this talk gave me the chance to reflect on how my life has been affected by my illness and how my relationships with my medical teams have changed over the last 30 years.
Digital health wasn’t even in its embryonic state when I was diagnosed. I remember my mum getting a phone call and being told that “your son has Crohn’s Disease.” She had never even heard of it. Now, who hasn’t?
I stood in front of these students talking about skype clinics, texting my surgeon and receiving blood results via twitter and they looked at me unsure whether I was being serious or whether I came from another planet.
Before speaking about the impact that digital health has had I talked about the problems long term patients like me face away from the hospital bed. In some ways those problems haven’t changed for me they have just got bigger. As a child my real focus was on getting better and it was my parents who endured the stresses and strains that my health had on life. Now I have that dual responsibility of trying to get better whilst also managing the impact that my health has on my family. Growing up my anxieties were around whether I could still play football or what the teachers would say when I went back to school. Now I worry about how I am going to pay the bills, what impact my health is having on the kids, how will my wife cope if I have another bout in hospital? On top of that I worry every single day about what the future holds. Health wise I am in a pretty good place right now. Bacterial overgrowth has returned with a vengeance resulting in the occasional accidents again and the odd stints of vomiting. We are not really sure if that and the bile malabsoption are linked in some way but the net effect is that I have a real mixed bag of a week. In addition I am constantly knackered and am in fact typing this whilst undergoing a phosphate infusion.
So going back to my med students I tried to give them a real flavour of what my daily routine is like and what occupies that tiny space in between the ears. I was also very honest to them about the whole death routine. You see last week another one of our “transplant family” sadly passed away. Although rationally we are all different you cannot help but think will that be me. In truth there isn’t a day that goes past without my mind thinking of this but you have to get through it. I tried to explain this to the students as these are the sorts of things they cannot possibly understand and perhaps don’t even realise play such a big role in my life.
With death out of the way I could devote the final part of my lecture to my passion digital health. I asked them to imagine a world where many of their clinics would done remotely via skype. Where they texted patients who required daily contact, where they sign posted new patients to online communities and where reading patient blogs are part of the consent form prior to surgery. I watched as some of them look bewildered, some sat forward on their seats and really engaged and some probably thought about when it was time for lunch and what on earth was he prattling on about.
I concluded by saying that none of the above is pie in the sky. Most of the above is what I do on a daily basis and actually it is how many of them will engage with their patients. Amazingly I think some thought it was fantasy yet they are the very generation engaging in all these technologies on a daily basis to help run their lives.
My health is like my football team, we do have some successes but you are never fully confident what the outcome will be. When I look back to that phone call thirty years ago to say I had been diagnosed with Crohn’s Disease I never dreamed that health issues would play such a key role in my life. I wonder what those students will be like in 30 years. I hope that my few minutes might give them a little insight in to what it is like to be a long term patient. For me though it is still very much one day at a time.
Till next time
M
Digital health wasn’t even in its embryonic state when I was diagnosed. I remember my mum getting a phone call and being told that “your son has Crohn’s Disease.” She had never even heard of it. Now, who hasn’t?
I stood in front of these students talking about skype clinics, texting my surgeon and receiving blood results via twitter and they looked at me unsure whether I was being serious or whether I came from another planet.
Before speaking about the impact that digital health has had I talked about the problems long term patients like me face away from the hospital bed. In some ways those problems haven’t changed for me they have just got bigger. As a child my real focus was on getting better and it was my parents who endured the stresses and strains that my health had on life. Now I have that dual responsibility of trying to get better whilst also managing the impact that my health has on my family. Growing up my anxieties were around whether I could still play football or what the teachers would say when I went back to school. Now I worry about how I am going to pay the bills, what impact my health is having on the kids, how will my wife cope if I have another bout in hospital? On top of that I worry every single day about what the future holds. Health wise I am in a pretty good place right now. Bacterial overgrowth has returned with a vengeance resulting in the occasional accidents again and the odd stints of vomiting. We are not really sure if that and the bile malabsoption are linked in some way but the net effect is that I have a real mixed bag of a week. In addition I am constantly knackered and am in fact typing this whilst undergoing a phosphate infusion.
So going back to my med students I tried to give them a real flavour of what my daily routine is like and what occupies that tiny space in between the ears. I was also very honest to them about the whole death routine. You see last week another one of our “transplant family” sadly passed away. Although rationally we are all different you cannot help but think will that be me. In truth there isn’t a day that goes past without my mind thinking of this but you have to get through it. I tried to explain this to the students as these are the sorts of things they cannot possibly understand and perhaps don’t even realise play such a big role in my life.
With death out of the way I could devote the final part of my lecture to my passion digital health. I asked them to imagine a world where many of their clinics would done remotely via skype. Where they texted patients who required daily contact, where they sign posted new patients to online communities and where reading patient blogs are part of the consent form prior to surgery. I watched as some of them look bewildered, some sat forward on their seats and really engaged and some probably thought about when it was time for lunch and what on earth was he prattling on about.
I concluded by saying that none of the above is pie in the sky. Most of the above is what I do on a daily basis and actually it is how many of them will engage with their patients. Amazingly I think some thought it was fantasy yet they are the very generation engaging in all these technologies on a daily basis to help run their lives.
My health is like my football team, we do have some successes but you are never fully confident what the outcome will be. When I look back to that phone call thirty years ago to say I had been diagnosed with Crohn’s Disease I never dreamed that health issues would play such a key role in my life. I wonder what those students will be like in 30 years. I hope that my few minutes might give them a little insight in to what it is like to be a long term patient. For me though it is still very much one day at a time.
Till next time
M
