If you have read some of my previous posts or followed me on Twitter it is likely you have seen my “jigsaw” diagram in its various incarnations. I drew it, initially, to try and understand the relationships/causes between the various conditions I have ended up with. It then dawned on me that it would a great way of showing a new doctor or surgeon the complexity of the case on just a single page.
I attached it to a Tweet during a recent #patientchat to illustrate how I like to communicate. The very positive response that I received from both patients and doctors was very gratifying. There were a number of requests for the template I used. I have therefore removed the text that was specific to my case and saved the file in both the original Keynote format and a Powerpoint format.
If you click on the links below you will be able to download the appropriate file. Please feel free to use them however you wish. I hope you find it useful and would be grateful if you could credit me if you use it.
A couple of weeks ago the BMJ blog published a guest post written by Sharon Roman, an MS patient. The subject : “What are the qualities that make for a good doctor and what can patients do if they’re missing?” (Link to blog at the bottom of this page)
It struck a chord as, over a period of 40 years, I have met a large number of doctors, consultants and even a few surgeons. Some have been good; some bad; some exceptional; some would be better off in research roles. I would put my current gastro in the exceptional category, especially if he is reading this just before performing a colonoscopy on me. But, in all honesty, there is nobody else I would rather have sticking a camera where the sun don’t shine. He can handle bends better than Lewis Hamilton.
One of the qualities that Sharon highlighted was the sense of safety that a good doctor gives the patient. It’s not something I had really thought about, not consciously at least, but I now realise that the feeling does underpin the best consultations and helps encourage open discussion. In a safe environment you tend to open up.
I’ve thought long and hard about the qualities which I believe elevates a good doctor to an exceptional one and this is at the top of my list. If pushed to sum it up in a single word it would be “adaptability” but it needs more explanation :
The ability to read body language and “language” language, if that makes sense. That’s picking up the messages in a patient’s demeanour and the words they use and then adapt how the consultation is structured. Carefully choosing the words or medical terms that get used and ensuring the patient understands them. Definitely not sticking to a “one style fits all” approach or spending the whole appointment staring at notes on a computer screen.
(That got me wondering what training is given in “people skills”? I accept there will be the “naturals” who already have an inherent ability to adapt their consultation style but what of the others who have that innate skill in varying degrees. Are particular medical students steered towards research rather than patient facing roles?
..and then off on another tangent – do doctors have their own categories for us patients and how quickly do they decide which we are? How are we classified – hypocondriac?; realist?; fatalist?; verbal diarrhoearist; “would be medical expert” trained by Dr.Google?)
Half way through her post Sharon voices her fear that the exceptional doctors will become burnt out, victims of their own success. It’s a subject I have discussed with my own consultant as temporary referrals from other hospitals inevitably choose to become permanent patients and his department’s workload is ever increasing with static resource levels.
Shortly after reading her post I happened to hear an interview on the radio (BBC Radio 5 – Pienaar’s Politics) with an eminent surgeon who had become so stressed and disillusioned by the pressures within the NHS that he has left the profession and now bakes waffles in SW19. As he said “you only get one shot at this life”.
If we turn the question on its head – “What are the qualities that make for a good patient or an exceptional one?” There are the obvious – “takes their medication”, “turns up to appointments” but are there other behaviours we can adopt that will ease the pressure on doctors’ time and resources? Maybe this would be a good subject for a future #patientchat.
Please make a note in your calendar for the next #IBDHour TweetChat – 19th October 2017 – 20:00 BST
The recent BottomLine_IBD poll (below) sparked quite a debate. I was surprised at the strength of feelings the subject elicited and some of the responses. Whilst there is a lot of discussion on the physical aspects of IBD it appears, only fairly recently, that the psychological aspects have started to come to the fore.
It therefore seemed like an good subject for a TweetChat to give fellow IBD patients/sufferers a chance to elaborate on their answers and respond to the comments others have made or even to refute the whole idea of IBD related guilt.
Here’s the original poll :
To make best use of the 140 characters you might want to use #IFGA (I feel guilty about) in your responses
T1 – To break the ice please introduce yourself, where you’re from, what your diagnosis was and how long ago #IBDHour (117)
T2 – Have you experienced #IBDGuilt or is it not an emotion you recognise? (We’ll look at specific areas in the next topics) #IBDHour (136)
T3 – If you have experienced #IBDGuilt in family/social/work/education situations what were the circumstances that triggered it? #IBDHour (137)
T4 – Have you ever experienced guilt that you aren’t coping as well with your #IBD as others appear to on Social Media? #SoMesyndrome (134)
T5 – Do you ever feel guilty (or just frustration) when your #IBD makes you take it easy but there are things that need to be done? #IBDHour (140)
T6 – If you are feeling well and read comments from other patients who are having a rough time do you feel any #IBDGuilt? #IBDHour (131)
T7 – If you do feel #IBDGuilt, overall, has the level increased or decreased over time? Can you explain why? #IBDHour (117)
T8 – Do you have any closing thoughts about #IBDGuilt that you would like to share? #IBDHour (92)
My second outpatient trip to London in a week and, unlike Wednesday, a beautiful clear morning without a cloud in the sky. I needed to be at St.Thomas’ by 9:00 to see a surgeon about having my gallbladder removed. It was an early start and my first waking thought was to wonder if eating a complete can of baked beans for dinner the night before had been such a good preparation for a journey on public transport. Hopefully a couple of extra Loperamide would do the trick.
It wasn’t until I parked my car near the station that I remembered where my mobile ‘phone was – on the dining room table. Was this going to be a liberating or frustrating experience? How was I going to let my wife know what the surgeon had said? How was I going to let my brunch companion know where and when we should meet? (At least I had my camera with me).
Having spent the train journey pondering this dilemma I arrived at St.Thomas’ outpatients’ department without having reviewed my list of questions or the copies of the ultrasound scans and follow-up letters I took with me. After a few minutes my name appeared on the laser display board and I made my way to the room indicated.
I had been expecting to meet the surgeon himself but was met by his registrar. I explained to her that I really wanted to see the surgeon and she said she would ensure I could spend a few minutes with him before I left. She started to go through my medical history. To speed up the process I produced a copy of the diagram I had drawn showing the key points in 40 years of Crohn’s and its companions. She was very impressed and no doubt I started beaming like a Cheshire cat. That soon stopped with the next set of questions.
I thought I was there to discuss whether surgery was a good idea, or not, and the possible complications. She was clearly running through the standard pre-operative assessment checklist – “Are you mobile? Can you wash and dress yourself? Can you manage household chores on your own?” I answered “Yes” to all the above but of course the answer to the last one was “No, I can’t. That’s why I got married”. (I’m joking!). I told her that my preferred option was no surgery until absolutely necessary as it would be too disruptive at present.
We then started to discuss my medical history in detail. She examined my abdomen and complimanted me on the quality of my scars. At this point it was obvious that surgery wasn’t going to be simple. She went off to see if the surgeon was available, taking the diagram with her. I think they must have then discussed its contents as about 10 minutes later they both returned and the surgeon introduced himself. He also liked my diagram and quickly ran through the key points.
He asked me to describe the circumstances that led up to me being there. I recounted the incident of violent shivering and turning yellow that occured at the end of January. He asked if I felt any pain (everyone has asked that one) and I was able to say I felt nothing at all. From that he concluded that a small gallstone must have temporarily lodged in my bile duct, long enough to cause the symptoms, and then quickly passed through before the pain started.
I went through the discussions I had had at my local hospital (East Surrey) and their suggestion that I needed to be seen by a specialist liver unit. I wondered why one of their concerns was liver cirrhosis? He replied that whenever a patient appears with esophageal varices / portal hypertension / portal vein thrombosis then it would be assumed that liver cirrhosis was the most likely cause. My latest Fibroscan result was 7.8 suggesting that cirrhosis was at a low level. I explained the hepatologist’s theory that the PVT had been caused by peritonitis following perforated bowel surgery in 1979. He thought this was very feasible.
Usually gallbladder removal is a same day operation using keyhole surgery. In my case it would be a lot more complicated. He noted my wish to delay surgery for as long as possible and was minded to agree with me. He wanted to present my case to their departmental review meeting to get other opinions. In the meantime they would arrange for me to have an MRCP scan (magnetic resonance cholangiopancreatography), a targetted MRI scan that looks at the biliary and pancreatic ducts. This would determine if any other gallstones were lodged in the bile duct. He asked me to book a further appointment for 6 weeks time so we could discuss the results and the meeting’s conclusions.
I had some final questions :
Will a cholecystectomy make my bile acid malabsorption worse? “We simply don’t know”.
Am I likely to suffer from post operative ileus (lockdown)? “Possibly”.
If we leave surgery until it is absolutely necessary what could the consequences be? “Anything from pain to having to prepare one’s relatives for bad news”.
Timescales for elective surgery? “Surgery would be carried out in the specialist Liver Unit at Kings College Hospital so the timescales would depend on their waiting list”.
I left any further surgical questions for our next meeting. His final action was to introduce me to their senior nurse co-ordinator who acted as a single point of contact for their patients. If I had any questions or concerns then I should call or email him.
….and my ‘phone predicament? Don’t bother with BT public telephone boxes – they take your money and then don’t work. When I arrived at St.Thomas’ I explained my problem to a very helpful guy behind the Patient Transport desk who allowed me to use his extension to make the necessary calls after my appointment.
….and so to brunch and a discussion on topics for the next #IBDHour Tweetchat.
Next appointment – Friday 10th November. Watch this space….
As a precursor to seeing a surgeon this Friday I booked an appointment with Haematology. It was only after making the booking that I read their last follow-up letter which said they had discharged me from their care. So it was with a certain amount of doubt that I approached today’s trip to London. Would I be wasting their time?
The waiting room at Guy’s was very quiet. Ominously quiet. Half a dozen patients at most. I had never seen it that deserted. The phlebotomist took blood samples and after a short wait, once the results were available, I was called in by one of the haematologists. I had not met her before and so as the consultation proceeded I needed to fill in some of the details.
I explained that since being discharged a new medical issue had arisen – a bout of jaundice. As a result I would be going to St.Thomas’ to see an upper GI surgeon to discuss having my gallbladder removed. She noted that gallbladder removal, by keyhole surgery, is a fairly simple operation on the surgery scale so I explained there were other complications and that my local hospital felt unable to cope with them, hence my referral to GSTT.
We went through the complications and their history :
Keyhole surgery unlikely to be an option due to previous adhesions/scar tissue
Portal Vein Thrombosis/portal hypertension
Low Platelets – would need to be over 80 or might need infusion
Co-ordinating consultants across two hospitals and four departments
As we covered each topic she used their eNote system to record her recommendations and these would be available for the surgeon to read. The follow-up letter itself would take a while to be issued.
The conclusion was that they would need to write up a plan for the surgery and would also refer me to their thrombosis unit to review my case. I came away feeling justified in requesting the appointment. I wanted to be better informed for Friday’s appointment and now felt armed with additional questions to ask. It can sometimes be a danger sounding quite well informed and having picked up some of the medical terms (the consultants version of polari) as you may get the answers back at a level higher than your actual knowledge! Never be afraid to ask if you don’t understand something.
Yes, I could have left all the above to chance but if I can help the process along, make sure the various parties are communicating and minimise risks then I’ll do whatever it takes. Roll on Friday…
I spent the rest of my time wandering along the banks of the River Thames, taking in the sights and ended up at Tate Modern.
I’ve often mentioned that I find blogging a great way of keeping objective about the various medical issues I encounter, hence this post which is a prelude to a meeting with a new Upper GI surgeon in London next Friday.
At the end of January I had a bout of jaundice. Whilst I turned yellow there was never any of the pain that usually accompanies it. I was in two minds whether to go to our local A&E but eventually gave in and made my way down there. To cut a long story short, a few weeks later I had a follow-up appointment with Upper GI consultant who suggested cholecystectomy (gallbladder removal). He was, however, concerned about some possible complications and for this reason recommended the surgery be carried out in a hospital with a specialist liver unit.
I exercised my patient’s right to choose which NHS hospital to be referred to and in my case the choice was simple – Kings College Hospital. I asked around and was given the name of an Upper GI surgeon who is highly recommended and has the added bonus of also working at St.Thomas’ and therefore access to my notes.
(There was a similar situation in 2009 when I found out I needed an ileostomy. The colorectal surgeon did not consider East Surrey Hospital had the facilities to cope with recovery from such a complex operation and so was sent to St.Thomas’ . I moved my outpatient care there in 2011.)
Preparing to meet the surgeon for the first time
The appointmet is set for 9:00am next Friday (22nd September). Before then I need to have a list of questions and any relevant documents. I am expecting to meet the named surgeon.
Just to complicate matters I will be seeing Haematology at Guy’s Hospital on the preceeding Wednesday. Will my medical file make it back to St.Thomas’ for Friday?
I have printed out the relevant documents from East Surrey Hospital- 2 x ultrasound reports + 2 x follow-up letters + last blood trest results.
I’ve also included my “jigsaw” diagram which shows the various conditions we need to consider and the dates they were diagnosed or last tested – Crohn’s, PVT. BAM, thrombocytopenia, potential PSC + last blood test showed borderline thyroid.
What Shall We Talk About?
Reason for referral – the consultant at East Surrey was concerned that, in my case, cholecystectomy ran the risk of liver damage due to cirrhosis. He also noted my low platelet count and thought that keyhole surgery may not be feasible due to the scarring/adhesions from two previous laparotomies.
Latest test results – Fibroscan (testing for liver cirrhosis) – 2012 was 7.2; currently 7.8. Platelets – 96 (but have been as low as 56). Ultrasound scan showed one large gallstone but made up from many small ones. Weight – 78kg
Risks and Benefits of Surgery
Type of surgery – Keyhole or laparotomy? What factors will decide
Timescales – waiting time for operation; how long for surgery and recovery for either keyhole or laparotomy
Likelihood of liver damage?
WIll bile acid malabsorption become worse if gallbladder removed? (SeHCAT in 2015 showed severe BAM. I keep it under control with just Loperamide but have Colesevelam ready should it be required).
Likelihood of post-operative ileus? After two previous operations I experienced it badly?
Do I need to have reached a particular weight prior to surgery? (Prior to my ileostomy I was given 3 x Fortisip/day to reach a target weight of 85kg)
My Preferred Way Forward
To have surgery when it becomes necessary not as pre-emptive measure. “Emergency rather than elective”. Maybe that’s over dramatic and should read “Just-in-time rather than elective?” What are the risks of this approach? What signs will indicate that an operation is needed? How soon does action need to be taken once the signs appear?
The consultant at East Surrey Hospital said if I get jaundice again I should go to their A&E and then they will decide whether to transport me to London by ambulance.
Next upper GI endoscopy/variceal banding due December 2017
Bloating – have been like this since ileostomy/reversal. Any thoughts on likely cause? One or more of the 5 F’s?
For nine years between (1999 to 2008), taking Azathioprine (Imuran) in varying doses between 150mg to 200mg/day successfully kept surgery at bay. Any Crohn’s flare-ups were dealt with by short courses of steroids. Then a series of routine blood tests showed that my platelets were dropping and it was concluded that Azathioprine was the most likely cause. I stopped taking it and within 2 years was undergoing major surgery.
I drew a graph to try and spot any correalation between the drug dose and the platelet count. I was expecting to see the count bounce back once I stopped taking Azathioprine and it did so the first time but when I started/stopped for the second time the platelets remained low. I’m guessing at that point the bone marrow was already damages. The only way to investigate further was to have a bone marrow biopsy.
In 2012 I went to see a haematologist and she explained some possible causes of a low platelet count :
increased destruction – the body is producing sufficient but something is destroying a number of them, possibly drug induced
decreased production – the body isn’t producing the right number in the first place which could be down to bone marrow failure.
We also discussed another factor – the implication of my enlarged spleen. Enlarged spleens can hold increased numbers of platelets and therefore the number released into the bloodstream is lower hence the lower count.
I had the bone marrow biopsy and afterwards received an email saying: “your bone marrow is being discussed with the histopathologist and we will write to you with the results. We will see you in clinic later in the year.” (I had to look up histopathologist – someone who carries out microscopic examination of tissue in order to study the manifestations of disease.)
I replied asking for an indication of what they had found. The response was that it would be easier to discuss the findings in clinic.
What did that mean? Nothing to worry about, it can wait, or it’s serious and we want to tell you face to face? Time for another short email along the lines “…I wonder if you could at least put my mind at rest that you haven’t found anything too serious….”
Within a few minutes this came back :
“We have reviewed your bone marrow in our multi-disciplinary meeting and there is nothing sinister to report. The findings suggest that your marrow is underproducing platelets rather than it being an immune cause that we had presumed secondary to your longstanding history of Crohn’s. This may be due to previous azathioprine use. We can discuss this in person and in more detail at your next appointment. In the meantime – I hope this reassures you.”
The appointment duly arrived. The haematologist started our conversation with: “Yours is not a simple case…..”. She had printed out the biopsy report that had been discussed at their MDM and the initial conclusion was that they were “in keeping with early/low myelodysplastic syndrome, histologically suggesting MDS-RCMD.” She knew that I would have looked this up on the internet and would have spotted the potential links with leukemia. That’s why the report hadn’t been emailed to me. [If I had Googled MDS I would have found the following – “The disease course is highly variable, from indolent to aggressive with swift progression to acute myeloid leukaemia (AML) in 30% of cases.” I think she was right to want to discuss it in person.]
She was not completely happy with this MDS conclusion because a bone marrow biopsy looks at two substances – the marrow itself and the aspirate (fluid). When the procedure was carried out the doctor was unable to obtain good aspirate slides as the blood in the samples kept clotting. After several attempts, but with little success, they had decided to concentrate on obtaining a good bone marrow core.
She described it as “like having a three piece jigsaw from which two of the pieces are missing.” At the next MDM they had discussed the results again and decided that, in my case, it was unlikely to be MDS but would recommend a further biopsy to get useable aspirate samples. “How would you feel about this?” I replied that I really wasn’t fussed. If it would help narrow down the diagnosis then the sooner the better. Next time they would use heparin, a blood thinner, with the sample needle as it should prevent the blood from clotting.
If the diagnosis wasn’t MDS then why the low platelets? The most likely cause was a combination of long-term Crohn’s and taking azathioprine. The biopsy had shown that the marrow was under-producing platelets rather than being over active and eating them up. I had been unaware that there was a potential link between Crohn’s and bone marrow.
The MDM had then gone on to discuss what the implications for treatment would be if it was/was not MDS. In either case the preferred course for treatment, at this stage, would be “do nothing” unless I was to have any procedures that could cause bleeding or that required surgery. A supply of platelets should be made available if either of these were needed. The difference in approaches would be in the monitoring regimes and we would discuss this further after the next biopsy results were available.
Back to reception to book up another biopsy and a three-month follow-up appointment.
In the meantime I had a routine gastroenterology appointment and I mentioned the need for a second bone marrow biopsy. Now you would think that a doctor who doesn’t bat an eyelid when sticking a camera up a patient would be pretty much hardened to all medical procedures, but the mere mention of the bone marrow biopsy was enough to make him squirm. He asked me if I was OK having the biopsy as it was the one test he really wouldn’t want to undergo himself! Strangely enough he wasn’t the first person to express that emotion.
A couple of weeks after the second biopsy I was back to see Haematology. When I went in for the pre-appointment blood test the phlebotomist asked me if I knew why she was also taking an “histological” sample. Since I didn’t know what “histological” meant I was of little help. (Of course I know now! It’s the anatomical study of the microscopic structure of animal and plant tissues).
The haematologist explained that one of the biopsy samples, which should have gone for histological testing, had either been mislaid or mislabelled so did not make it. This is why she had rung me a few weeks back to explain the situation. I’d forgotten about this. She had, however, looked at the other slides from that second biopsy and these were fine.
The missing sample had been discussed with the chief histologist and he suggested doing a specific type of blood test which had proved to be 60% effective in spotting problems, if there were any. The results would be available in a week’s time. The alternative was to have a third bone marrow biopsy but they didn’t want to put me through that again. I suppose I could have made a fuss about the missing slide but I couldn’t see what good it would do.
When I saw the haematologist in February 2015 she described my bone marrow as being “a four cylinder engine running on only three” and therefore not delivering the right quantities of platelets.
What is the long-term prognosis for the thrombocytopenia? It should not affect the other issues I have – Crohn’s, potential PSC, PVT, but I must avoid the use of azathioprine in the future. It’s important not to get hung up on the numbers as I am asymptomatic and do not bleed profusely if I cut myself.
What could have caused the low platelets? There are no signs of marrow abnormalities that could point to a more sinister conclusion (leukaemia), therefore the cause is most likely to be drug-induced long-term use of azathioprine. The official description was “asympomatic thrombocytopenia. Therapy related secondary dysplasia on bone marrow morphology – most likely due to Azathioprine”.
Do I need treatment? No, but must look out for any signs of starting to bleed more easily. Monitoring? Six-monthly blood tests and outpatient appointments (which subsequently became annual and then dischargeded).
A couple of new issues have arisen – borderline thyroid level + possibility of cholecystectomy – so it seemed like a good idea to book another appointment with Haematology to discuss further. Watch this space
Do you enjoy your job? Do you think what you do influences the attitude you adopt to your condition(s)?
For the last 35 or so years I’ve been planning things. Think party planning but without the sex, drugs and booze. To be precise I’ve been planning projects ranging in size from small construction jobs, offshore wind farms, MoD contracts and the mega Channel Tunnel. The last few years have been spent planning a major upgrade to the London Tube and the introduction of the air-conditioned, walk-through trains on the District, Circle and Metropolitan Lines. (If you use them I hope you enjoy the experience).
The job has been challenging, especially when tackling new areas where you need to quickly learn a myriad of acronyms, technical terms and understand the new processes needed to deliver a successful outcome. The standard planning tool is the bar chart, or Gantt chart to give it its fancy name, but the key is always communication. That’s where my love of diagrams comes from. If you can encapsulate on a single page the message you are trying to get across it is so much easier for others to understand than using reams of words.
In 2010, maybe it was 2011, it dawned on me that my health could be considered a “project” and the techniques I had been using for years could be effectively employed. I was faced with multiple outpatient appointments, procedures and a growing number of health conditions. The follow-up letters or medical reports often contained acronyms or very long, very unfamiliar medical terms and when I obtained copies of all my medical records I reached information overload. It then became a labour of love to condense the “story” into an easy to follow narrative.
The “project” approach (and starting a blog) has enabled me to become very objective about my health issues. I see my consultants/NHS as a set of expert resources that will help to achieve a successful outcome. But, of course, there lies a problem. What is a successful outcome? For a conventional project there is a clearly defined point at which it can be declared finished but for a chronic condition, such as Crohn’s, there is at present no end in sight. That makes me uneasy as I’m used to completing a project and then moving on to the next one. (My wife would not agree when it comes to home DIY but that’s just a man thing).
Maybe this isn’t just a chronic illness issue but also age related. When you reach a certain point in your life mortality surfaces as an issue. You start to realise that there’s more behind you than in front. If you’re an actuary then you may have already calculated when your use of the term “midlife crisis” is valid. For the rest of us, without access to the actuarial tables, we can only guess and ask our consultants that question that they can’t answer to – “will Crohn’s shorten my life?”
Returning to the original question – do you think your job influences your attitude? Maybe I’ve got this completely the wrong way round and the question should be – do you think your attitude to your condition influences the job that you do?
This post has been prompted by the topics for #patientchat discussion on Twitter, “Medical Records” (#Tweetchat – Friday 4th August 2017 13:00 EST 18:00 BST).
I have touched on this subject before but it’s always worth revisiting. These are my experiences within three UK NHS Hospital Trusts and span 40 years.
These are the topics set for the #patientchat discussion
T1: Do you have access to your Electronic Health Records (EHRs)? If so, does that info help you actively share in your healthcare decision making?
T2: What are benefits to patients being able to view the notes that doctors, nurses and other clinicians write after a visit?
T3a: Do you sometimes find the amount and type of info available in your EHRs overwhelming and/or incomprehensible?
T3b: If so, what are some ways to make it easier to decipher and use in your decision making?
T4: What are your tips for keeping your healthcare records organized? Do you use any resources?
T5: Is it important to request past medical records from your doctors and keep copies for yourself?
T6: What do you think some of the barriers are to implementing EHRs? How can we work together to overcome them?
Ideal World vs. Reality
In an ideal world each of us would have our full medical record available in a universally readable format that could be easily accessed by any medical professional that is treating us.
Now let’s look at the real world. If you are a relatively new patient who hasn’t moved hospital and not had an in-patient stay then you may indeed have a complete record, held electronically, on an IT system. If, however, you are a long term patient who has moved between GPs and hospitals and spent time as an in-patient then the situation is far more complicated. You are likely to have a mixture of hand written notes and observations, type written letters and, more recently, computer generated letters and test reults. There are also x-rays and scans to consider.
The above does not address the issue of universal access. The last attempt in the UK to implement a system was NpFIT (The National Programme for IT in the NHS), a project initiated by the Labour government in 2002 and cancelled some years later having spent in the region of £12bn and having delivered nothing. Government backed IT projects are notorious for being disaster areas.
Where does that leave the patient?
In the UK you have a right to access your medical records. Since 2000 I have received copies of the follow-up letters from outpatient appointments that the consultant sends to my GP. This may be sufficient for your needs but I needed to fill in a lot of missing detail for the book I was writing. For the payment of a fee you can obtain copies of all your medical records . Requests forms are available online for each Healthcare Trust and as I had been treated by 3 different Trusts I filled in 3 different forms and sent them off with the relevant payments (between £20 and £50 depending upon whether you just require medical notes or want copies of x-rays and scans as well).
A series of packets duly arrived and I was amazed to find they really did contain ALL my medical notes from October 1977 to the present. Two Trusts chose to send hard copies whilst the third had scanned the notes to a pdf file of over 700 pages. I also had loadable files for CT, MRI and US scans. The only things missing were certain early x-rays.
My initial reaction was “information overload” but over the space of a few nights I sorted the documents by type and date order and picked out the “juicy bits”. Those bits that explained some long, unanswered questions about my treatment. Probably the most fascinating were the ward notes from the times I spent in hospital. These are not usually documents that you get to read.
The discs containing CT and MRI scans looked a bigger challenge but I found a great piece of software called OsiriX which opens and views the files. (The Lite version of the software is available as a free download). Hours of fun looking at 3D visualisations of your innards.
What use are they?
What can you do with, potentially, a huge amount of very detailed medical notes? Whilst they might be of academic interest to the patient and provide a fascinating insight into how you arrived at your current state they are not a lot of use to your medical professionals due to the sheer bulk of the information. This is especially true if you are seeing a new consultant who needs a succinct overview of your medical history and current issues or if you end up in A&E (ER) where they need to start treatment as soon as possible.
It gets considerably more complex if you are suffering from multiple conditions. Initially I put together all the major events into a spreadsheet table. Going through the process certainly gave me a good grasp of my overall health and I have ended up a much better informed patient. This helps greatly when you need to take decisions about the course of future treatment. It helps clarify the most important issues.
If you are still find it difficult to work out how your health threads come together then draw a diagram. I’ve tried a number of different format. There are a couple of examples below :
In February I ended up in our local A&E (ER) Department as I had turned yellow. The first person I saw was a triage nurse who asked lots of questions about health conditions, history and medications. When we had finished running through the various ailments she complimented me on my knowledge. (Definitely a result of researching and tabulating my health records)
Next I saw an A&E Registrar. Who asked the same questions but what would he have concluded if I hadn’t been able to fill in the details? He would have been confronted with a patient with a large scar up the midline and an appendectomy incision. He wouldn’t have been aware why the large scar was there and would have assumed my appendix had been taken out. He would be unaware that I had Crohn’s disease, that there were additional veins growing in my esophagus (varices), that my spleen was enarged or that my platelet count was around 60. Valuable time could have been lost trying to investigate the wrong problems.
Do It Yourself
As a result of my A&E visit I wondered – is there was a standard, minimum set of data that should be available? Is there a standard format for the data? I searched the internet and could find nothing. I suppose a good starting point would be the questions the triage nurse had asked – personal details; current medication; current medical conditions; and any known allergies.
There are, of course, the likes of SOS Talisman bracelets which have some very basic information engraved on, or contained within, them. There are several subscription services which will hold your medical information and can then be accessed via a unique code you wear on a bracelet or dog tag, but these appear to be US based only and the data held was not in sufficient detail. How feasible would it be to produce a standalone, wearable device?
I had a go at making one using a USB bracelet. I settled upon two top level documents – i) a simple, overall summary plus ii) a detailed table that recorded each appointment or procedure. These documents are stored as pdf files and linked to various back-up documents such as laboratory or histological reports.
There is one problem. Security. Does an NHS computer allow the reading of an external USB stick or is access restricted to protect from viruses etc? (Particulary relevant since the recent cyber attack). I have a feeling this is a non-runner so I’m favouring storing the files on a secure server and potentially accessing them via a QR code on a dog tag (or even a wrist tattoo)
There are more references appearing where patients are recording their consultant appointments or having consultations via Skype. Would these audio and video files need to be kept as part of your medical record? Do medical professionals expect to have access to any recordings you make?
“Managing IBD – A balanced guide to Inflammatory Bowel Disease” by Jenna Farmer. Published by Hammersmith Health Books. 161 pagesBook reviewing is a brand new experience for me; unfortunately IBD isn’t and that was one of the reasons I was keen to review this book.
When it arrived I eagerly opened the packet and immediately turned to the back cover to read the synopsis. I tend to be somewhat cynical about those words on every book cover that are written to entice the potential reader to part with their cash but, having read the book, these ones very neatly sums up the content and style. The subtitle for the book is “A balanced guide…” and I believe Jenna has achieved her aim. By the end of the book I can honestly say I had learnt a lot about a range of subjects that I have tended to ignore or gloss over in the past. It has also reinforced just how differently each of us experiences IBD.
The book starts with the Introduction and Jenna has wisely avoided quoting swathes of statistics about IBD, that’s not what this book is about. The Introduction does contain is the “hook”. Why did it take a move to China for the author to be diagnosed and what was she doing so far from home? You have to read on to satisfy your curiosity. The description of the hospital in China is enlightening, maybe shocking. I’ll say no more. It’s a sad endictment of the continued lack of IBD awareness within some of the UK medical profession that it took the move to a country thousands of miles away to be finally diagnosed with Crohn’s disease.
The main body of the book is broken down into five sections. The first section is entitled “Adjusting to Life with IBD” and starts with diagnosis and some of the symptoms you might experience. It then goes on to briefly describe the usual tests patients undergo and gives tips on how to cope with the most common of these, the colonoscopy. Never a pleasant experience, but a neccessity.
The chapters move on to run through some of the many theories of what causes IBD and left me questionning whether we are any closer to knowing what causes the disease than we were when I was first diagnosed. There is however some hope that the new drugs being developed will at least enable IBD to be controlled in a better way. Jenna briefly runs through the main drugs currently used in treatment and then discusses surgery.
The one paragraph I do take issue with is the description of an ileostomy as involving “the removal of large colon”. The term ileostomy refers to diverting the small intestine through an opening in the abdomen and forming a stoma. It may only be a temporary measure whilst the colon is left intact to recover or heal. The small and large intestines can then rejoined in a “reversal” operation. Jenna points out that losing the final part of your small bowel impairs the body’s ability to absorb B12 and other vitamins but it’s important to add that it can also lead to another condition called bile acid malabsorption (BAM), a subject that many patients, and doctors, are unaware of.
Chapter 3 explains about finding support and lists some of the organisations that can provide it. The text then moves on to a subject that is often swept under the carpet – the affect of IBD on one’s mental health. The very nature of IBD with the uncertainty of its long term implications but also the short term, practical ones of “will I make it to the bathroom without an accident?”, will affect all sufferers to a greater or lesser extent. Jenna explains her own personal experience of anxiety and follows this with descriptions of some of the therapies that are available. These include Cognitive Behaviour Therapy, endorsed by the NHS for treating anxiety and depression. As for some of the other techniques? I will admit that I have long been sceptical that many are simply fancy names to describe natural mechanisms that we innately use. This is a generalisation and I am not commenting specifically on the two other techniques that Jenna mentions – Emotional Freedom Technique and Percussive Suggestion Technique.
Section 2 “Foods and Supplements” is where Jenna’s training as a nutrional therapist comes into it’s own and where I learned the most. Over the next four chapters she explores supplements, beneficial foods, staying hydrated and the role of food in managing IBD. Whilst what you eat isn’t going to cure your IBD (despite some of the more outlandish claims that appear on Facebook) it can make you feel a lot more comfortable and give you better control over the symptoms.It’s an easy to read section which demystified many of the terms I have seen mentioned on social media or in blogs. So that’s what a Paleo diet is! I didn’t know that there are two types of fibre! The only suggestion that didn’t convince me was the idea of using sauerkraut as a probiotic, not because I doubt it’s efficacy but the thought of eating fermented cabbage….
Section 3 “Living Life to the Full with IBD” is all about QOL (Quality of Life) which for I consider is the most important measure of how well your condition is being managed. This section covers work, travel, exercise, socialising and the all to frequent hospital visits. The chapter on travel is full of tips on how to make travel more manageable. It could only have been written by someone who has experienced it themselves. I certainly wouldn’t have thought to ask some of the questions Jenna does when preparing for a trip.
The penultimate section is entitled “Other Possible Approaches” which briefly explores alternative therapies and concludes with a very useful 24 hour self care plan for when you are suffering from that inevitable flare-up. The final section pulls together the references and links from earlier chapters to enable readers to do further research.
Throughout the book the text is interspersed with accounts from other patients about their own experiences and some are bound to strike a chord with the reader. I say some because, as I wrote earlier, we all experience IBD in our unique way. If you’ve recently been diagnosed with IBD, or know someone who has, then this is an excellent, non-sensational book that gives a balanced overview of living and coping with IBD on a daily basis. It’s an optimistic book that suggests practical ways of making life with IBD more bearable.