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Posted on 5:40pm Tuesday 15th July 2014
It has been a while since my last post but that was for good reason. With so much going on I thought that I would take a step back and not post for a while. However the last few weeks as a patient have made me reflect and want to share a few thoughts with you.
Posted on 9:18am Tuesday 29th April 2014
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?
Posted on 2:21pm Tuesday 4th March 2014
As part of my role as community relations, this week our team organised a día de concientización, or awareness day. It turned out to be a great success, with over 200 people from the community attending!
Posted on 11:56am Wednesday 26th February 2014
This week, the physical work finally started: we are building a centro de acopia, or recycling centre, from recycled materials, including bricks made of plastic bottles filled with earth and crisp packets.
Posted on 12:38pm Tuesday 4th February 2014
In Nuevo Gualcho, the community where I am living, red flags of the left-wing party FMLN line the streets. I am told there is only one family out of the 500 that live here who won’t be voting for them.
Posted on 12:22pm Monday 27th January 2014
Hola! I will be spending the next 10 weeks in El Salvador on an environmental project with International Citizen Service, a government-funded scheme that sends 18-25 year olds to volunteer in developing countries.
Posted on 2:49pm Tuesday 21st January 2014
This is a very personal list for me. A mixture of of my own health wishes and those that I would like to see happen in healthcare. It would be great to hear if any of your views are similar to my own. So here goes.
Posted on 9:53am Friday 29th November 2013
What rent do you pay?
Posted on 11:19am Tuesday 19th November 2013
Going back in to hospital doesn’t get easier just because you are a regular. If anything it gets even tougher because you know what is in store. I have just returned home after a ten day stretch and further surgery. As you would expect there is a blog post coming after my little journey but before that post that I wanted to write this particular article and share it with you. I take great pride in the fact that my care is very much a partnership between patient and healthcare professional. Empathy has been talked about as a key component in the partnership. In fact I have read many articles about the best doctors are those who show empathy to their patients. After much exploration though I struggled to find articles that talk about patients who can empathise with their doctors. We can debate why this is the case for ages but for me perhaps one reason is that we often choose to take for granted the work that our HCPs do in helping us. Whilst we all want collaboration and partnership maybe that doesn’t always extend to a real understanding of what the medics go through. I think that I am just as guilty as others in this department. That was until this particular in-patient stay. The day before I went in to hospital my surgeon and I had a very open telephone call about the surgery. Nothing unusual there except I do remember thinking that he being even more cautious than normal and very specific about each individual point and potential consequence. I knew that post-transplant surgery is inevitably more complex than pre-transplant so again I sort of shrugged it off. Arriving in hospital something didn’t feel quite right. Not about my health but about the atmosphere on the ward and the way he spoke to me. Again I was told that he would do absolutely nothing to put me in jeopardy or take any risks whatsoever. I then asked a question and all the answers to the other questions in my head became obvious. Tragically an incredibly brave fellow bowel transplant patient had passed away a few days earlier. It hits all us bowel transplant patients very hard when one of the family doesn’t make it. You see, because there are so few of us we are a family. We share the successes and collectively feel the pain. That family feeling doesn’t though just apply to fellow patients. Right in front of my eyes I was seeing the pain and upset felt by the transplant team and my surgeon. Our surgeon. Nothing that anyone could have done could have prevented this tragedy. This patient was just the bravest person you could ever wish to meet. There standing in front of me was a person who not only felt his own pain but felt the pain of every single one of us and also the pain that this patient’s family were going through. He was devastated. I tried to explain that we all know the deal when we go through this surgery. We know the risks. We also know that he cannot be at our bedside 24hrs a day. I told him that he also has a family and a life and that there is no other person or surgeon that we would want in our corner than him. Those were not empty words they were the truth. I mean it, we all mean it – he is simply the best. His response was astounding. So much so that I am trying to write it down for you as close to word for word as I can. - My family understand that I need to be here for you all. I have dedicated my life to you and I want to and need to be there for you every single minute of the day. It is my responsibility to look after you and to care for you. I feel the pain you feel and when someone passes away I have to deal with my own demons and try and find a way of dealing with it for all you!
Posted on 9:34pm Tuesday 8th October 2013
I have to start this particular bowel transplant blog with a birthday hug. Who for, well me actually. Why? Well at the precise time I post this blog I was, two years, ago coming out of theatre after my transplant surgery. Who was the first person to remember? No not me but my incredible surgeon who sent me a congratulatory text. You can’t ask for better doctor-patient engagement than that can you? I have just returned from a really interesting trip to the United States. Utah and then California in fact. Utah was a brief stopover to have a meeting and then I was on to California where I had the privilege of giving the key note opening speech at Stanford Medical School’s MedicineX conference. Together with my transplant dietician Marion O’Connor we discussed how the use of digital technologies has transformed patient – doctor engagement within the bowel transplant programme. We discussed how the use of basic technologies starting with email and text moving through to social media, blogging and finally skype clinics (yes any NHS managers reading this – Skype clinics do work and patients love them) lead to better collaboration, better engagement, better compliance and better relationships between patient and doctor but also patient to patient. More on the Stanford experience in a minute. (If you are that inpatient I will let you scroll down now) I wanted to talk about an interesting dynamic that has happened recently in my care and the impact it is still having on me as the patient. As you know I have continued to experience a plethora of symptoms ranging from basic Usain Bolt style runs to the toilet; extreme pain on the right hand side of my stomach; various joints locking at regular intervals and without warning leading to events such as the weekly ritual known as dropping the drinking glasses I am holding because the pain in the hand is so great and finally there is nightly chuck up. In fact I have got so good at the nightly vomiting that I don’t now even wake anyone up. So with those symptoms I was referred to a brilliant gastroenterologist, Dr Satish Keshev. After scopes both up and down (you get the drift), an MRE and a pill capsule test he was certain that there was potential Crohn’s activity. Now as a bowel transplant patient that really is your worst nightmare hearing those words again. However as I am on heavy immunosuppressants the choice of medications available are very limiting. Why? Well because the risk of infection is heighted being a transplant patient. So his view was resect that area as the same time as doing the other surgery. And with that news he asked me to talk to my surgeon and he would do the same. A couple of days later I speak with Anil and the words “there is no way it is Crohn’s” come loud and clear in my ear. I did manage to get the word “but” before he then went on to tell my why it couldn’t be Crohn’s and how he needed more proof. We then went on to discuss what potential surgery was needed. This bit was relatively simple. Remove the gall bladder (stones that can’t be lasered) and connect the transplanted bowel up to the top part of the stomach so that everything drains directly in to the new bowel. Pace maker I hear you cry! Well yes, it is conceivably still on the table but I have heard nothing. In true NHS administration not one single note, email, phone call (now I am being stupid) has happened so who knows. Option B was always the drainage process so that has just become option 1a.
Posted on 5:27pm Wednesday 21st August 2013
I thought that it was time I wrote down a summary of where my life was in bowel transplant land. In doing that I realised that my role as a patient was changing. Was that down to me or down actually to the changing nature of the NHS here in the UK? I will let you decide. A warning this is a long post So with a backdrop of life being so much better than it was prior to my transplant this is my current daily and weekly schedule.
Posted on 5:08pm Thursday 25th July 2013
Wow, so much has happened in my bowel transplant world where to begin? Usually I like to focus on what has been happening to my health from a physical perspective. However I want to devote this post to telling you what it has been like managing basic things such as medications from a patient perspective. Sharing my own frustrating episode surrounding my obtaining my routine anti sickness mediation highlights what is wrong with the current situation in England and why being a long term patient is about so much more than just having ongoing treatment. Crohn’s Disease, bowel transplant – pah it’s got nothing on trying to get a prescription sorted.
Posted on 8:24am Tuesday 2nd July 2013
If I am to be totally honest the last week or so since my last post has been a bit tough in my bowel transplant world. It felt a little like watching my football team QPR last season. Hoping for a run of success but sadly each match ending in defeat and subsequent supporter frustration. However unlike QPR who got relegated, my week did end on a fantastic note with a speech at the global Intestinal Transplant Symposium in Oxford.
Posted on 8:24pm Monday 17th June 2013
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.
Posted on 6:42pm Wednesday 22nd May 2013
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
Posted on 5:09pm Monday 13th May 2013
Posted on 8:42am Tuesday 7th May 2013
Posted on 7:18pm Friday 15th March 2013
My journey has a bowel transplant patient has taken me off in a number of directions over the last couple of weeks. Some have been great some not so good but again all paths lad back to The Churchill Hospital in Oxford and the transplant unit and my surrogate family. The route to this particular visit has been interesting though and as I sit in room 11 having just ordered a take away pizza (sorry no free advertising of any pizza chains on this blog that is unless free pizzas are on offer) for some hot food at a decent time I thought that I would tell you about the latest instalment of being a patient, bowel transplant style.
Posted on 9:31am Monday 11th March 2013
This valuable resource has been much loved by gardeners for many, many years.
Posted on 2:40pm Thursday 28th February 2013
To the shock and surprise of many, the West Herts Hospitals Trust recently announced plans to start charging disabled drivers to park at their hospitals. I proposed a motion at St Albans District Council, on February 26, to put pressure on the Trust to reverse their decision.
Posted on 3:12pm Monday 25th February 2013
I have tried hard this week to get my head out of bowel transplant mode and in to the space reserved for “rest of my life.” I just figured that with my head still spinning with so many things it was time for a mental clear out, a kind of spring clean of the mind. As I write this I have visions of a mini me with duster and polish sitting inside my head polishing lots of bits until they are all shiny. Just hope mini me doesn’t drop anything, that is if there is anything to actually drop.
Posted on 4:24pm Sunday 10th February 2013
This last week seems to have typified my journey through bowel transplant. When I was told that having a bowel transplant was swapping one set of problems for another I knew what I was being told but never really appreciated what that actually meant. I went in to the surgery knowing the risks and complications but at that time I hadn’t eaten for 3 years and had intestinal failureso for me there was no choice.