Sunday, 19 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
Saturday, 11 May 2013
Having been told I was a nutty blogger type by the doctors in Part 1 I have to admit that my confidence took a little knock. I have subsequently though met with the chair of that strategy group who has vowed to ensure that patients really are at the heart of decision making. His vision helped restore some of my faith. A few days later I attended a patient entrepreneurs meeting that the Centre For Patient Leadership under the stewardship of David Gilbert (@patientleaders). It reaffirmed that I wasn't an oddity (although sticking with a relegated football team like QPR may be qualify me as one) and that I had to find a way of making people like that understand why I am so passionate about peer to peer interaction.
In June I will be attending the Doctors 2.0 & You conference in Paris where I am incredibly humbled to be sharing a plenary speaking slot with my dietitian Marion O’Connor. We will be talking about use of digital technologies in healthcare and how patients and health care professionals interact using everything from a text message to social media and beyond. If you want to attend a conference about the future of healthcare then this is one not to miss.
My first working block at School of Social Entrepreneurs is now over and without doubt it was one of the most inspirational weeks I have had. Aside from meeting a fascinating cohort we has some fantastic expert witness sessions. One that stood out in my mind was from Orin Lewis OBE who with his wife Beverley De Gale started 17 years ago the Afro Caribbean Leukaemia Trust, (ACLT). Having lost a son to cancer he went on to develop this trust to promote organ donation among the black community. It transpires that if you are afro Caribbean then you are 5 times less likely to get an organ donor as a white person so their campaign is all about getting people on to the register. Apart from being a powerful speaker much of the content really resonated with me. He talked about what it was like waiting for a donor, what it was like coping post-transplant and then the complications that sadly led to the death of their son. At one point I had to leave the room as it became very emotional for me for it also got me thinking.
It got me thinking about how lucky I was to get transplanted so quickly but it was a real reminder as to how you start yet another journey post-transplant. So many people just assume that once you are transplanted everything is fine. Well it isn't and the risk of complications, organ failure and other associated problems remain. I think the key is remaining in a positive mental state and Orin certainly spoke so eloquently about that.
There were though some similarities between what Orin and ACLT experienced and me. Let me explain a little more. As you know I am Jewish and there is an ongoing debate in within the Jewish community over organ donation. Under Jewish law there is a debate over the definition of brain stem death. Religious Jews would like a Rabbi to be present when this decision is made and without that they will not carry an organ card. In fact this is the same with other sections of the community and other many other religions. In no way do I wish to pass judgement on anyone. I just feel that the principle of being able to take but not necessarily give is one that should be debated further. This subject matter may well go away of its own accord if the UK government does what it is alluding too and allows a religious leader of whatever faith you are of member of to be present when a brain stem death decision is made. Currently the rules on organ donation are subject to much scrutiny.
From my own bowel transplant perspective I am still spending quite a bit of time back at Oxford. I have started on my bile mal-absorption treatment taking 6 tablets a day of what I describe as horse pills but the doctors call Cholestagel. I was also taking phosphate tablets but they caused untold damage to my backside. Yes John Terry saw more of me than it had done even on my worst day. So they have been stopped. I now have regular bloods to check the levels. Prior to infusion I was down at a level of 0.27 and apparently I need to be around 0.70 -0.90 so a bit of a way to go yet.
Talking of bloods I broke my all-time record on Friday. I am able to announce a world exclusive – don’t get to excited but it took 9 attempts to take bloods. Yup you read it correctly 9 attempts. Now the blood team are brilliantly I just think my veins had decided to go on strike. So between trying to put a cannula in for the CT and take a dozen tubes of blood I came back with 6 bits of tape on my arms and two reddish patches. In the end they managed to get some blood from the knuckle in my left hand and from a vein in the underside of my forearm. My admiration for the blood team has gone up another notch. The only saving grace for me was that I was doing a phone interview for most of the time so couldn’t really complain about the pain. If only the person on the end of the phone knew that she was talking to me whilst I was under attack from a needle frenzy.
Tuesday will bring on a colonoscopy as they look again at the area where my stoma was reversed. So I will update you with those findings in the next post.
I wish I could end with a bit of good news on the football front but sadly my team have been relegated. QPR or as my kids used to call them – Quarter Pound of Rubbish – have lived up to their nickname and will be starting next season out of the Premier League. I think that hurt me more than the phosphate tablets. On second thoughts they both bought on the runs.
Till next time
Monday, 6 May 2013
It has been a little while I know. Sometimes though the patient in me rears its ugly head again and I have to get out of blogger mode and in to being a bowel transplant patient. That is kind of a long winded apology but The Churchill Hospital, Oxford has seem a little too much of me of late.
Now don’t get me wrong I am still doing incredibly well some 16 months on from my small bowel transplant the fine tuning is a constant reminder that being a patient isn’t easy. I think the hardest part has been the constant fluctuations. I can go from no output of any kind at both ends to spending a copious amount of time on the John Terry (remember him – my pet name for my toilet) where output is best described as free flowing. This has generally been put down to bacterial overgrowth problems that I have mentioned on many occasions without the cause really being known. I have been having constant tests to get to the bottom of it all and finally a breakthrough seems to have been found.
Marion O’Connor who you will recall is my dietician and arguably one of the world authorities on nutrition in bowel transplantation suggested I undertake a bile study test known as a SecHat Scan. Apparently in a healthy person you absorb up to 60% of your bile which then helps with all absorption of your food and nutrients. Early indications on my test showed that I am absorbing less than 15% which is deemed as mal-absorption. This coupled with the fact that I am deficient in a number of vitamins and trace elements has resulted in me spending more time back at Oxford than I would like. No offence intended Anil – you know how much I always enjoy chatting to my surgeon.
After bouts as an outpatient I was eventually readmitted for a serious of infusions and stated on a course of tablets to held bind the bile sorts. My phosphate levels had dropped to the point that were told to me as “being on the floor” and my vitamin B and Vitamin D levels were also pretty depleted. So on admission I was started with a phosphate and pabrinex infusions and then went through a daily blood regime to monitor any improvement.
I think at this point that I need to switch from patient telling a story to a quick side note to patient observing the NHS in action. You will recall that I always feel the best way to work with the NHS is to separate the incredible medical attention and treatment from the ridiculous admin. I arrived on the ward at the designated time and a room was ready. Now I’m a regular in patient – a kind of frequent flyer but with hospitals so the question I want to know is this. Why do the poor doctors and nursing staff then still have to spend ages of their time filling in forms with information on that exists already on the computer database? What can they not simply log on and update the fact that I am an inpatient and then access all my medications etc on line? Am I missing something here? The UK government states that patients will have access to all their records online by 2015. Well if we are getting online access then those records must already exist on computer so why the copious amount of form filling. It defies belief and puts more pressure on already over worked doctors and nurses. You might like a quick read of my NHSSM blog post on this whole subject. It would interesting to hear your views.
Swinging back again to me the patient (hope I didn't lose you on the way) I have been trying very hard over the last few weeks to not lose sight of how far I have come in the last three years. It is quite easy to get all consumed by the daily chore of continually coping with the ups and downs. My surgeon Anil Vaidya is very good at keeping me in the moment. Goal setting for today and not worrying about tomorrow. However if I am totally honest in my quiet moments you cannot help but think about tomorrow. The most frequently asked question in my head centres around rejection. I am acutely aware how powerful my anti-rejection medication Tacrolimus is and the effects they have on the body. When I think of rejection I cannot help thinking about how new a bowel transplant is and how little data there on long term issues.
I think that I am pretty good at blanking that out most of the time but it is amazing how quickly your mind wanders back on to the subject. I suspect that I am no different to so many other transplant patients or patients who cope with long term illnesses. Perhaps that is why I put so much value in to peer to peer support and the benefits that brings. The whole patient to patient sector is the foundation on which I am hoping to build my future workwise. How patients can help other patients. With that in mind I start tomorrow at the School for Social Entrepreneurs. This fellowship course will hopefully provide me with a fantastic environment to grow my passion into something more constructive.
A couple of weeks ago I had my first taste on the phrase that I had believed was consigned to the dark ages “what do patients really know.” I was invited to attend a clinical commissioning group strategy meeting in my area. It was a room of around 150 GPs and primary care practioners. Amazingly I was the only patient in the room. In one of the breakout sessions we got on to discussing how doctors need to invest more in educating patients. It was simply a round table conversation and I spoke about peer to peer interaction and how doctors can actually learn from listening to patients, reading patient blogs and interacting on social media. The moderator and then the GPs around the table looked at me told me that what I knew I was only a patient and then proceeded to tell me that I must be one of those nutty bloggers like mumsnet. Whilst being compared to the highly successful website mumsnet is undoubtedly a compliment (not that it was meant that way) to say I was flabbergasted was an understatement. For once in my life I was silent. I didn’t know whether to rant, to respond or whether that response even deserved a reaction. In my head I could hear myself running up and down the ladder of interference that I had learnt all about at the Centre For Patient Leadership.
For the first time ever I really thought that patients were from Mars and Health Care Professionals from Venus. And that is where I am going to end part one of this blogpost. Having not written for a while I find myself with lots to talk about so please look out for part 2 in the next couple of days.
Saturday, 13 April 2013
I mentioned in my last bowel transplant blog that I would be introducing you to a guest blogger. Well I am delighted to introduce Laura Borland. Laura is a professional coach and trainer who I met when I gave a talk to the Scottish Health Council. Her work is inspiring many people including myself so I thought that instead of talking about me today and my bowel transplant weekly journey I would share this post with you. I hope that you find it interesting and informative.
What will it take to for the head and the heart of our NHS to connect?
I’m really passionate about energy. I believe we all bring energy to everything we do, whether consciously or unconsciously.
There are some people who feel good to be around and some who quite literally drain the energy from us. We can be left feeling energised, connected and inspired or tired, flat and deflated depending on the interaction. For me that’s all about energy and it is my belief that we’re much more sensitive to energy than we’re consciously aware of.
I recently came across Dr Jill Bolte Taylor in an interview with Oprah Winfrey. She is a Harvard trained neuroanatomist who had a stroke in 1996. Her story is very inspiring, but what grabbed my attention was when she talked about how hospitals should be about conserving patient’s energy instead of taking it away. She described her experience as a patient and the difference it made to her when she felt people brought energy to her as opposed to taking it from her.
She now tells her first year medical students that their patients may be in this totally discombobulated condition but when you walk into the room you have to show up for them a 100%. You have to take responsibility for the energy that you are taking to patients.
Now there’s a simple, yet profound thought. Imagine a world where every health practitioner took responsibility for the energy they brought to the patients they cared for? How amazing would that be? What difference could that make?
Interestingly Jill experienced a rare type of severe haemorrhage in the left hemisphere of her brain which meant she was unable to walk, talk, read, write, or recall any of her life. It took eight years for her to completely recover all of her functions and thinking ability. In response to the swelling and trauma of the stroke, the functions of her right hemisphere developed and strengthened. Her experience of life from a right brain perspective dramatically changed her and how she now experiences the world.
I’m no expert on the brain! However, from the little I understand our left brain is our logical analytical, centre concerned with our survival, whereas our right brain is more about connection, creativity and being present.
It is my opinion that the health services in the UK are predominantly left brain and that they would benefit from being from a little more right brain.
Now, this is not to say that there aren’t amazing practitioners who just naturally connect with patients and function from their hearts as well as their heads - of course there are! However, it’s not yet the cultural norm. We have a predominantly left brain health system that’s focused on statistics, targets, measures and reports etc.
Are we using the correct approach to address the unacceptable issues that compromise and damage patient’s dignity, well being and in some instances recovery that continue to arise in our health system?
It is my opinion that all the processes, policies and strategies in the world won’t solve the problem. We need to find the courage to be radical.
People connect with people and we don’t connect with people through our heads but through our hearts. Patients are not numbers or statistics but individuals who are in a system because they need help. The word that Jill used to describe herself as a patient was wounded. When we get caught up in labels and bureaucracy we can sometimes forget that a the heart of it our service is one human being helping another human being when they are in need.
So what would this mean in practice? It would mean that each person would take responsibility for the energy that they bring to the patient they are caring for. Not just with their verbal language, but their non-verbal and energetic language.
Not only would this benefit our healthcare system, but it would impact positively on our families and communities and quite literally change our world.
We need to be pioneers. We need to lead with our hearts and not just our heads. We need to connect the head to the heart and keep the heart at the focus of every single action we take. We need to have the courage to be bold about the qualities, not just the skills, we need in our health services and we need to foster environments that support, encourage and demand that.
What are we waiting for?
You can access the interview with Dr Jill Bolte Taylor here http://www.youtube.com/watch?v=T81a6zcQpHc&sns=tw and the TED talk here
Friday, 5 April 2013
Today was a strange old day in my bowel transplant world. It started with 32 pin pricks in my arms as part of food allergy testing before continuing with two sets of blood tests covering only about a dozen test tubes. The morning then finished with an in depth discussion about my eosinphils at which point I really wished that I had paid attention in biology instead of flunking my exams. All of this was in the name of assessing whether the recent biopsy that indicated I had food allergies was correct and if so could we easily isolate the problem food group. The short answer is that I will go back for more blood tests next week as the eosinophil levels seem to fluctuate a little. All rather complicated for my bowel transplant brain but the actual consequence of it all is spending far too much time on the “John Terry” (if you read the last blog you will know what I mean) and a stomach that sounds more like a bubbling volcano.
Aside from potentially dodgy bowels the dermatology clinic have now referred me to their transplant unit that deals with the types of cancer than mine was. I am reliably informed that the reason for the heightened risk of it returning is due to being a transplant patient and being on immunosuppressants. The end result is that I will now have 3 monthly checks for life. Yet again I am incredibly privileged to receive amazing care at Oxford. As I write this another patient that I have spent time talking to has just undergone a bowel transplant and the gentleman who I managed to get down from Scotland is about to leave and go home. All part of daily life there except it isn’t normal daily life and I can’t imagine a day when I will ever not think of Oxford as part of my life.
That doesn’t mean that I am sitting still feeling sorry for myself. Those of you who hopefully know me by now will know that it isn’t in my nature just to sit. Believe me I wish I could do more than I do but I am starting to rebuild my life. It has made me think though about what rebuilding my life actually means and what do I want to do with my life. Then I got thinking about whether all long term chronically ill patients have the same thoughts. A kind of mixture of being scared about the future and excited about the opportunities. I want to make the most of every day yet it means totally rebuilding my life from scratch and you can’t help but worry.
I sat at the dinner table the other night talking to the kids about my ideas and about what I want to achieve and how I am going to do it. Now as you know I really do have the most incredible kids; but at one point in the discussion you could see and almost hear the doubts and nervousness that they have about the future. They have to be the least materialistic kids I know, except that is when my daughter wants Victoria’s Secret knickers. At 13 I ask you. Anyhow what they have always said is that one day they would like to go to New York as a family. Not unreasonable in my view and I started saying that it will definitely happen and just wait and see. For the first time though I could sense the worry about will dad get back on his feet again and will normal life resume. I guess the proof of the pudding will be over the next few months.
What the kids do I hope see is a dad who is trying to grab with both hands the second chance that the brilliant transplant team have given him. The more time I spend with patients from all sorts of backgrounds the more I realise that so many of us share the same worries and concerns. It is just how we deal with them that is personal to us. I do believe though that our relationship with healthcare professionals can have a profound impact. How we interact can set the standard for our future behaviour. My luck is having a team that positively encourages me to believe that nothing is impossible. Patient engagement is not just a passion of mine it really has become something I believe must happen. This was the speech that I gave to the Scottish Health Council about using social media and existing technologies to engage better with patients.
I was asked yesterday via twitter what the reaction had been and then the following question was posed to me. “If I had a magic wand what would I like to see happen?” Now I have my views but I wondered what yours would be? Please feel free to post a comment below.
From my side it has to be about real change in the way healthcare is delivered. That includes at the heart of it all patient engagement strategies such as social media, video calls and an obvious on line presence. I recently wrote a post giving my own personal assessment of the Royal College of GPs response to Patient Online. Again have a read and I would welcome your thoughts. Some of the findings are fascinating. So this is my passion and something I aim to build on. We should be launching the new Oxford Transplant Centre website and digital strategy by early May so I will update you on that very soon.
Away from the patient world my attention this week has turned to our charity and the annual Paris 2 London bike ride for Crohn’s and Colitis. I just thought that I would share with you the video highlights of last year’s ride in the hope that it might inspire you to want to take part. So please excuse this plug but this charity means so much to me. We have raised over £250,000 in 3 years and my goal has to be £1 million so come and join the fun.
Over the next week I will be sharing with you two guest blog posts that I think you will find fascinating. They are not bowel disease related in fact one is from a carer of a cancer patient and one is from a fantastic healthcare strategist on empathy but I will tell you more when I post them.
Till next time
PS – I need to tell you a funny story quickly. April fool’s day comes and goes in our house usually without any fuss. This year we decided to do something different. My middle son Nathan (of youtube channel Nathansgotfish) has a small fish tank in his bedroom with what can only be described as 6 versions of a goldfish. Sorry any fish experts for my poor description! Anyhow when he came down in the morning I told him that the pet shop had phoned and that the fish may have developed arthritis in their joints. He needed to sit by the tank and count how many times in 5 minutes that each fish swam back and forth and then write that down in a chart. I then told him we would take that chart to the pet shop as they might need a cream. You can guess the reaction when 4 hours later on our way to the pet shop we told him to check what day it was……