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Posted at 10:51am Monday 4th November 2013
Posted at 1:35pm Friday 6th September 2013
I really enjoyed last Saturday, not only was it a really sunny day in Cassiobury Park but also the very first Herts Pride Event! Herts Pride 2013 was based around the theme of Health and WellBeing. There were lots of different agencies there and I got all sorts of health advice. There were also amazing things to buy, see and eat. It was really a day that appealed to the whole family. I met lots of people who were having a great time. There were also some fabulous acts in the Glam marquee stage and the Vibe with Pride stage had some amazing dance and music acts.
Posted at 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 at 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 at 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 at 5:09pm Monday 13th May 2013
Posted at 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 at 1:03pm Friday 14th December 2012
Posted at 8:21pm Saturday 6th October 2012
05 Oct 2012 08:54 AM PDT