Get involved: send your pictures, video, news and views by texting WO to 80360, or email us
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 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.
Posted on 11:09am Monday 28th January 2013
Sunday, 27 January 2013
Posted on 5:57pm Wednesday 9th January 2013
As the clock chimes midnight it is out with the old and in with the new except as a patient that one chime doesn’t actually make a difference does it? Or am I wrong? The turn of the year gives you a chance to set new goals, make new plans and start up new things but the one thing that doesn’t change is being a patient. Does that mean your mindset has to stay the same though – I think not! My Christmas was a bit like santa’s relationship with chimneys – lots of ups and downs. I picked up what I assume was a virus and ended up back in hospital for a few days. With me a virus seems to always lead to dehydration and with my kidney function going off quicker than a turkey left out of the fridge I soon found myself on antibiotics, a drip and with an abscess on my leg from all my injecting that has now turned in to a lovely great big hole. All of this and I just wanted to be out ahead of celebrations that had been planned. Frustratingly I missed two major deadlines, my daughter’s 13th birthday and my 21st anniversary but I did get out in time to share New Years Eve with my wife. I also managed to be around for my daughter’s bat mitzvah & disco – although not eating for 2 days to ensure I could make it through the disco was an interesting challenge. I then managed to appropriately embarrass her with my speech, which I thought sounded cool, it contained a twitter hashtag, references to facebook and everything else teenagers use these days. Perhaps it was the fact that I have more twitter followers that upset my little lady. I hadn’t really appreciated the effect that my back and forth to hospital was having on the kids until this holiday. I stupidly assumed that they took it all in their stride and that it was almost part of life yet this time it really hit them hard. I saw the odd posts that they put up, heard the reactions on the phone and then saw the look in their eyes and it really made me realise the massive affect this all has on them. I think that some of this was due to the fact that I hadn’t been an inpatient for a few weeks so they got used to having me at home and some of it was the fact that I went for routine bloods and ended up staying in so it was unprepared. Finally there was the time of the year so it was no wonder the kids and my wife got very down over the whole thing. So you see the journey of being a patient or the trials and tribulations of being the loved one of a patient doesn’t alter based on the change of a number. In essence those elements are out of your control, what can change though is what you wish for and what you are going to do to try and make those wishes come true. For 2013 what will I be doing to make my wishes come true? My biggest wish is for stability in our lives and for my wife and kids to have a year free of the upheaval that has been there for so long. What can I do to make these things happen? In simple terms I can make sure that I do everything possible to give them the normality they deserve when the times are good and just hope that when we have a few blips they remember many more good things than bad. To deliver on my wish though involves so many things some in my control and some not. I guess that herein lies so many lessons for so many of us. These are my thoughts for what they are worth. I can’t guarantee that I can follow everyone though so I would welcome your thoughts.
Posted on 6:53pm Monday 24th December 2012
Was 2012 the year of the patient? This is now my second Christmas since my bowel transplant. Last year I had been out of hospital for a day post my transplant surgery and this year I am thankfully in a much better place. The odd cracks are starting to appear but I’m banking on them not being anywhere as bad as the transplant itself. One of my current challenges is where to inject my anti sickness meds. I take them intra muscularly and a the moment I don’t have that much feeling left in my left leg and better still when I sometimes inject in that leg I can see the liquid spurting out of another hole in the leg that hasn’t yet healed. It is probably something that Darren Brown or David Blane would be proud of but actually it blooming hurts and what a waste of good, beautifully matured neat cyclazine. Perhaps the bigger challenge is staying hydrated and that is proving a little more difficult with each passing week. It is a difficulty perhaps only matched by my football team who after one victory have reverted to type and lost again. Actually our defence is a bit like my legs right now, full of holes and always leaking. It is a complicated process combining anti rejection meds with preventing kidney issues but hey life is all about challenges so I have no doubt we will sort this one out. I think, I hope, actually I really hope. So I am guessing that if I was to give myself an end of term report as a patient it would probably be a decent grade for effort and completing my homework and the usual teacher phrase of “could do better but still pretty good” when referring to the body itself. I have never been a straight A student so hey it isn’t bad. That is me as a patient looking after my own health but what if there was an overall grade for patients in 2012. I think the teacher would have to state that there has been a dramatic improvement since last year; the level of classroom engagement has increased enormously and now the challenge is to keep that up and move on to the next level where patients really do ensure changes happen. I am absolutely convinced that 2012 has seen patients really put their heads above the parapet and really increase their voice in the world of health care but I guess to take it to the next level it has to be all about change and impact. I think that it is inevitable that those, like me, with long term conditions tend to engage more than those who may be unwell for a short period of time but return to good health in a matter of days. However the key thing in my opinion is that it is the sum of all of us that makes patients such a potent and powerful voice. In all walks of life there are those that are happy to be a little more vocal or push a little bit further but with those patients may be considered i-patients and more interactive we are actually nothing unless we all work together. I guess in my own little world I see things in healthcare as no different to government or any national or international organisation. You can have Presidents or Prime Ministers or Ambassadors but they are really figureheads for us all. Patient leaders are the same and quite often it can be all too easy to get caught up in lovely conversations with people that you think of as your peers talking in wonderful circles about how patients will change everything and what this one or that one has done wrong. Talking at that level is fantastic, it is intellectually stimulating, it is thought provoking but it is often not the real world. I have been to a few health conferences now and even spoken at a few and the buzz word(s) is always “patients” or “patient engagement” but often that is marketing speak. How many really know what it is like to be in a waiting room when there is not enough room for patients to even sit. How many have talked to patients who have to stay in a treatment room because there are no beds on the ward or have to get admitted as an inpatient for a few hours in order to get an urgent test done? Better still how many have experienced what it is actually liked coping as a patient, being served food that is inedible for the 10th day in a row? These are real patients who need to be embraced and taken with on the journey for real change to happen within healthcare. So to answer my own question I think that 2012 has seen massive advances by patients. The self management via social media has been huge, patient communities are growing, how we now engage with our doctors is changing so rapidly it is amazing. As engaged or interactive patients we now have a duty to share our experiences with the wider patient communities and then 2013 can be the year that patients affected change. I am going to try next year and use the hashtag #patientpower as I truly believe that it is what can change the way healthcare is delivered forever. As for right now, well I have a few Christmas wishes I want to pass on. To my transplant team at Oxford, who I am sure will read this, thank you from the bottom of my heart for continuing to change my life. To all patients but especially my bowel disease friends I hope that 2013 bringing you happiness and the health you deserve. And finally to Harry Redknapp and the team at QPR – we have a manager we could never have dreamed of having a few seasons ago so get your act together and sort yourselves out otherwise I will be sending you all for a colonoscopy without sedation!!! So the kids are nearly finished catching up on an episode of Merlin and then it is off to make another batch of chocolate brownies for my daughter’s party on Thursday. My son kindly misread the instructions on my first batch and let’s just says that 1 teaspoon of salt ended up being a few tablespoons – enough said!! Thanks for reading my blog, following me on social media and engaging with me, your support and friendship makes it all worthwhile. Till next time
Posted on 10:22am Monday 17th December 2012
Well this is the first time since August that I have been able to write a blog post with my football team QPR finally having won a match and secured 3pts. Fulham fans, this one is for you http://youtu.be/YE2XSm5-xRk Yes the QPR revolution is off and running and into phase 2 of the season. My own bowel transplant journey is also probably now about to go to the next phase and whilst that is hugely exciting it has thrown up more questions than answers. In essence it mirrors the lives of many patients so just because I have had a transplant why should that make any difference? Last week saw me have a full review of all my blood results and a detailed discussion with my dietician Marion about next steps. (as it is Christmas please say hello to her on Linked In she needs more connections so I’m on a recruitment drive) http://www.linkedin.com/profile/view?id=82754883&locale=en_US&trk=tyah whilst the transplanted bowel is generally doing ok the principle remains that if it goes wrong it will somehow get fixed as long as I remain totally focused on keeping everyone updated on any new symptoms. With other levels it isn’t so easy. My lack of absorption has meant that I am deficient in a few areas such as iron, magnesium and vitamin D but infusions should sort them out. What do most people do before Christmas, they shop – me, I get my infusion. Mind you it is holiday season so I am expecting a buy one get one free offer from the NHS. The other issue remains hydration and ensuring that there is no damage to the kidneys. The issue there becomes a lot harder to sort out as it is the anti rejection meds that can, in some patients, really cause havoc with the kidneys. I pretty much know the levels I need to be at and to stay in the safety zone I will need to stay on fluids about 5/7 days of the week with them going through my Mic Key button in my stomach. It isn’t a disaster I know. I mean real disaster would be QPR relegated but what it does do is bring home the fact that a bowel transplant is not your ticket to easy street. You replace one set of problems with another and it is how you cope with these new issues that I think determines what the future holds. So why is this guy mentioning all of this I can hear you say. Well it is simple. It means that you have to either continue or become and engaged patient, an empowered patient, an educated patient. All of that seems to fall under the term E-patient and when you mention the word e-patient most people thing; what is he droning on about? Actually I would argue we are all e-patients as let’s be honest when we are a patient we are usually engaged in what is happening to us and we become educated either ourselves but finding things out or simply but listening to what our doctors tell us. So as I enter my own personal phase 2 I would like to think that I have become an i-patient. What the hell is he on about now? I-patients are in my view, interactive patients. Patients who interact with all aspects of their healthcare. From the doctors and medics to the hospitals, the pharma companies and above all directly with other patients using and sharing their experiences for the greater good of everyone. These days the world is as small as ever and social media makes it even smaller. There is nothing a patient cannot find out if they choose too and to use the well spoken phrase “no decisions about a patient without a patient” put patients right at the centre of healthcare for perhaps the first time ever. So to take advantage of that position a patient has to be interactive. To use their data, to get another opinion, to share a thought or a story patients, in my opinion, have to be proactive and not reactive so from now on perhaps i-patient is the new e-patient. With that interactivity in mind I want to end by mentioning one thing. I have the huge privilege of being the patient advisor and speaker at the up and coming Doctors 2.0 & You in Paris, France. http://www.doctors20.com/ . You can join me too. Calling all i-patients, if you want to come to this conference check out our video on the crowdfunding site http://www.medstartr.com/projects/113-doctors-2-0-you-funding-epatient-travel-scholarships and if you fancy having a coffee with me in the beautiful Parisian sun then apply or contact me for more info. Till the next time