Crohn's Disease

18 Tips for Surviving Hospital

I had been meaning to update this for a while. I compiled my list of ten things I learned would make life easier during my more recent stays in hospital (UK NHS – 2 bowel operations; 2 emergency admissions, one with a 2 weeks recovery stay). I wanted to pass them on in case it helps to improve your “end user” or “patient” experience. I thought I’d ask some patients if they could add o my initial list so I posted the question on a Crohn’s Forum. Thank you – xxSophiex, IHurt, CDJ, UnXmas, acc929, SickofCrohns for your additions.

Here’s the updated version which has now grown from 10 to 18. I’m not suggesting you take all the physical items listed below with you in one go. I’d go for a phased introduction as your recovery progresses.

One possible risk to bear in mind is not being able to keep your expensive technology securely whilst you’re in hospital. The wards I’ve been on have discouraged the bringing of valuables into hospital for this reason but realistically everyone will want their mobile phone with them. The ideal solution would be for each bed to have a patient lockable drawer/cupboard but I’ve never seen one in the NHS. There may be a ward safe that you can ask for valuables to be stored whilst you are in theatre and recovery.

No.1 MOBILE PHONE – it goes without saying that you will have your phone with you but not so long ago you weren’t allowed to use them on the wards. There may still be restrictions in certain sensitive areas. Don’t forget your charger, preferably with a long lead in case the mains sockets are halfway up the wall.

No.2  HEADPHONES – there are lots of times when you really want to be able to drown out the surrounding ward noise. I prefer to have two pairs of headphones with me – in ear and over ear. Over ear will give you the best isolation from the ward noises but you can’t comfortably lie on one side with them on and your ears tend to get hot! The in-ear may not be as good for keeping out external sounds but you have more choice in your sleeping position. (A good pair of noise cancelling ones would be a good idea).

No.3  EYE MASK – like the ones you have for air travel. It’s very rare to have all the lights off in a ward and even if they are, the nurses will be frequently checking on the more poorly patients so the over bed spotlights will be going on and off throughout the night. That’s where the mask comes into its own.

I haven’t actually tried a mask so have found the best time for dosing is during the mid-morning lull. That’s the bit between the doctors doing their ward round; the beds being made ward round ; having a shower and lunch being served.

No.4  SHOWER GEL/SHAMPOO –  sometimes these are available in the hospital but there’s nothing like having your own, favourite brand to keep you in touch with home. It’s said that smell is the strongest sense for recalling memories. There is one particular shower gel that I bought ready to go into St.Thomas’ and I used that “flavour” for several years afterwards. Every time I caught that fragrance it would immediately transport me back to the first shower I had post operation – a happy time despite the surroundings.

No.5  SOCIAL MEDIA – I have found the support received on SoMe when one is isolated in hospital is a great comfort. If you wake up in the middle of the night, in pain and can’t get back to sleep there is usually someone out there who will respond with positive messages.

No.6  PYJAMAS AND DRESSING GOWN – the admission instructions may ask you to bring in your night clothes but I have found that pyjamas are usually available anyway. That’s fine if you’re not fussed about the colour. After my reversal operation I was issued with bright orange pyjamas so it looked like I had just escaped from Guantanamo Bay. I try and use NHS pyjamas for a few days after an operation in order to give anything that might be oozing a chance to stop oozing and then it’s into my very stylish M and S ones for the rest of the stay.

The dressing gown is a must. Not only can it give you a bit of extra warmth when sitting about but also covers up that embarrassing gap up the back of your medical gown where you haven’t quite managed to do the tie-ups. (They usualy give you 2 gowns nowadays to address the gapping issue)

No.7  BOOKS AND MAGAZINES – there will be times when you’re not dozing but you really don’t want to warcg more movies or, even worse, daytime TV! A decent book or some magazines, preferably with lots of photos and no difficult text, are a good way to pass the time. I was given a volume of Sherlock Holmes short stories and found that each tale was just the right length to read before needing a rest.

No.8  CASH – This item is a bit of a throwback and was, once upon a time, relevant. I expect everything is contactless nowadays so don’t forget your card.

No.9  MAKE-UP – I’m a bit out of my depth here because I’ve never knowingy worn make-up. I’ll quote directly what acc929 said :
“I think this is probably a bit more on the girly end of things, but I’ve found that taking good care of myself (when possible of course) in hospital helps keep my morale up. I think the sicker you look, the sicker you feel, so if you have the energy it’s worth making a little effort. I bring my nice robe so I don’t need to wear the hospital gown, my favourite perfume, and my own shower stuff in little bottles. I bring a tiny bit of make up so that when people visit I don’t need to deal with them telling me how tired I look (I’m in the hospital, duh!) Bottom line, having your own things makes everything feel better.”


No.10  FAVOURITE SNACKS – after an operation or maybe a bad flare-up you may need something to help you get your appetite back. If you have some favourite snacks or chocolate bars etc. pack a few in your bag. Some hospitals have will provide snacks anyway but I don’t know how common it is.  The two wards I spent time in at St.Thomas’ always had a good selection freely available. You only had to ask!

No.11  SANITISING WIPES – with all the nasty infections that appear in hospitals nowadays – such as Mrs.A – sanitizing wipes to wipe down any surfaces or objects that you can’t be certain have been throroughly cleaned or disinfected. (May have been superceded by COVID precautions)

No.12 HAND CREAM AND LIP BALM – the atmosphere in the wards is often very dry so creams and balms will help you keep your skin feeling good.

No.13  LISTS – pen and paper – or you could use an app on your phone or tablet. I have always found it useful to write down any questions I want to ask the consultants on their ward rounds. I’ve tried keeping a list in my head but when you are confronted by the consultant and a gaggle of junior doctors, early in the morning, it’s easy for all thoughts to just disappear.

No.14  PAIN – if you start feeling pain or a different pain don’t be brave and keep it to yourself TELL THE NURSE. It may be nothing and you can be given painkillers to help. On the other hand it could be something that needs attention and the sooner that attention starts the better.


No.15  INHIBITIONS – try and lose any inhibitions you may have about discussing the more intimate details of your condition with the medical staff. You may notice something different about your body or what comes out of it. Again it may be nothing or it might need further attention.

No.16  CANNULAS – if you have to have a cannula and, let’s face it, it’s pretty much a certainty, don’t let a doctor put it in. No matter how much practice they claim to have had they are never, ever, as good as an experienced nurse. In the past I have actually said to a doctor ‘”Are you sure you are good at inserting these?”. He assured me that he was but an hour later I had to have it redone as there was insufficient flow through it. This has happened on several occasions so I stand by my “never trust a doctor with a cannula” statement. 

I accept that the positioning of the cannula is governed by where a good vein can be found but if at all possible try and avoid having it on the bend of the arm as you will frequently be interrupting the flow when you move your around. The automated pump will start bleeping which will quickly become annoying for both yourself and your fellow patients (and the nurses). If you get a choice of which arm it is put in remember you will have eat meals and manage in the bathroom with it connected. Choose carefully!

No.17 PHARMACISTS – when it’s time to be discharged I can guarantee that you will be ready to go but will then have to wait several hours whilst pharmacy get the correct medications up to the Ward and you can finally leave. If you make friends with pharmacist on their daily ward rounds you can preempt that wait my persuading them to make sure the necessary tablets, in the correct numbers, are in your bedside locker ready for discharge.

If you live near the hospital you may be able to go home and then get someone to return later to pick up your medication.

No.18 SENSE OF HUMOUR/COURTESY – not always easy to keep hold of this when you’re drugged up to the eyeballs, have got tubes coming out of every orifice and your future is uncertain but if you can do your best to keep your sense of humour and treat the doctors, nurses and other patients with courtesy then it will make your stay a lot more bearable. Of course you may be one of those unlucky individuals who has had a humour bypass in which case you should get on well with some of the doctors I’ve met! 


That’s the revised list. If I had to choose just one physical item to take in with me it would still be the headphones as they give you the chance of getting some sleep in a noisy environment. The one behaviour I would adopt is a combination of the above but can be summed up as “acceptance that a hospital regime will probably be completely alien to your usual way of life but you do not need to lose your sense of dignity, humour or courtesy”. If you feel any of these are being compromised – complain.

Active Patient, Crohn's Disease, medical graphics, medical records, NHS patient experience;, patient empowerment, Patient Leaders, presentation

The Jigsaw Diagram

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 and to make sense of 30+ years of medical records which I obtained, in one go, from three Health Authorities. The notes were a mixture of handwritten ward notes, typed letters and a raft of pdfs on CDs. I was amazed that they stretched all the way back to 1977.

Medical Records – from 1978 onwards

The diagram started out very simply.

Crohn’s Jigsaw – Version 1

It then dawned on me that it would a good way of showing a new doctor or surgeon the complexity of my case on just a single page. This second illustration is the first development of the early version.

Early development of first diagram

I attached this more developed version to a Tweet during a #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 at the bottom of this post 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.

This template should get you started on mapping your medical history

Here’s the version of the diagram taking the story up to April 2021

…and here’s the most up-to-date version, taking the story up to March 2023. You will see that it has had to undergo some redrawing to fit everything in!

…and at one point someone set me the challenge of making an interactive version. Taking the initial, simple diagram I added more “nodes” that when clicked would open up the relevant documents or test results.

The link below will take you to a web based version, although it has not been updated for a while. It was not too difficult to set up but needed a knowledge of “mapping”. The most time consuming part was redacting personal details from the documents.

https://www.wrestlingtheoctopus.com/MedRec

…and then taking it to its logical conclusion, and with thanks to the example set by @MightyCasey, who sadly passed away earlier in 2023, here’s a temporary QR tattoo. It does work. Try pointing your smartphone at it.

…and finally I decided to see how easy it would be to animate the Jigsaw to tell the story in 90 seconds. (This is not based on the latest version). Here’s the link :

Crohn’s Jigsaw – The Movie (1080p)

Templates

Medical Jigsaw – Keynote Template

Medical Jigsaw – PPT Template

Crohn's Disease

Surviving A&E

It may be stating the obvious that anyone can end up in A&E but for those of us with chronic conditions, or advancing years, the odds escalate. It’s clearly a stressful time regardless of whether you are the patient or simply accompanying them. News reports of long delays for emergency ambulances and extended waits to gain access to A&E itself make the prospects of a visit even more uncertain. For at least three years I’ve been dreading that I would need a trip to A&E, knowing it would probably be a very extended experience.

In the last 11 years I have been an A&E patient four times and have accompanied elderly parents on several other occasions. Over that period I’ve had a chance to see how things have changed and adapt my coping strategy accordingly. (I hope that you don’t think I’m over thinking it by having a “coping strategy”. I’ll let you be the judge if you make it to the end of this blog. Maybe you could give me some feedback via Twitter on your thoughts.)

My first two trips were after calling 999 and on both occasions the ambulance arrived within 8 minutes. Yes 8 minutes! Coincidentally it was the same crew each time. The first call (2011) was due to my stoma bag filling, quite rapidly, with blood. The second time (2012) still involved the red stuff but this time I was vomiting it and that time I had the added excitement of the siren and blue lights. I’ve written about the incidents in my book.

My wife came with me in the ambulance each time. The main lesson we learnt was that, once you’ve been processed through triage, communication is the biggest issue. With a large number of patients being treated it is simply not possible for each one to be given an update every 5 minutes. If a real emergency is brought in then the doctors and nurses are diverted to treat them. You have to wait until someone approaches you to move to the next stage of your treatment.

I found that having my wife made me more stressed! Whilst it was great to have her company I know how much she dislikes hospitals. I ended up worrying about how she was coping with the situation as well as what was happening to me. Double the stress, and as we went further into the night it became a question of what point should she call it a day (night0 and make her way home.

In 2010/11 I had spent several weeks in a major London hospital so had become relaxed about being in a hospital environment, having cannulas inserted and all the other checks and indignities that one undergoes. Being in London had made visiting difficult because of the distance from home so I became used to spending extended periods on my own. It has subsequently made it easier to cope but I can understand why it is difficult for those new to the experience.

On my third visit (2017) I had turned yellow (jaundice) and my GP sent me off to A&E. No need for an ambulance this time so I arranged a lift once I had packed an overnight bag and walked into hospital unaccompanied.

Having booked in at reception I was taken to see the triage nurse and then returned to the waiting area. At this point previous experience taught me it was into the unknown and the indeterminate waiting would start. Rather than looking at my watch every two minutes or trying to catch a nurse’s eye, each time they passed by, I decided to set a time, in this case one hour, at which, if I had not moved on to the next stage of treatment, I would go to the nurses’ station and ask what was happening. This structured approach seemed to really help.

To pass the time I read a book although it was not always easy to concentrate with all the hustle and bustle going on around me. I managed to keep relatively relaxed. In the end I was moved to a bed in the Medical Assessment Unit, a small ward attached to A&E and I stayed there until I had been seen by a consultant and discharged the next morning. I felt I had managed my stress well for the most part.

My last trip to A&E was two weeks ago (March 2023) after experiencing malaena. In the 6 years since 2017 I knew that the service level had been considerably degraded due to the lack of resources, staff and onward bed blocking. I was convinced that my previous “set time limits” strategy would not work this time. I packed my bag, said goodbye to my wife and then set off for A&E with some trepidation.

Ever since starting to write a patient’s blog in 2010 I have found that the creative process has been very cathartic. The “reporting” aspect has allowed me to be almost at arm’s length and to view my treatment as if I am a third party, detached. I wondered if treating this latest experience as an “opportunity to witness and report the situation at first hand” would help pass the time and keep stress levels down

I decided to regularly Tweet my progress through the system and illustrate with photographs where possible. A distinct advantage of using SoMe to post updates is that you get feedback from others and it helps to feel that you’re not alone through the ordeal. Even in the wee small hours there is usually someone awake that responds. There is also the discipline of getting your message across in the limited number of characters.

I decided to copy some of the Tweets to our local MP, Claire Coutinho (East Surrey), so that she was aware of what was happening under her government’s 13 year watch. I didn’t get any response, of course.

I have since compiled the Tweets and photos into a blog which can be found here – www.wrestlingtheoctopus.com/…….. I’ll let you be the judge of how well I coped, or not!

The experience was considerably worse than before and I ended up on a bed in one of the A&E corridors for 14 hours before being sent for an endoscopy and then moved to a ward. I wasn’t the only patient waiting in the corridors.

Again I found that by having a “strategy” I could cope with the mind numbingly boring periods when nothing seemed to be happening. It helped that I was fairly sure what the consultant would find when she scoped me and what the treatment would be. Having been through the same issue before I also knew what the aftercare should be and was able to use this to argue for my discharge from hospital sooner rather than later. As I said to the consultant on her ward round – “being in hospital is doing my head in. My recovery will be a lot quicker at home”.

I came away with nothing but sympathy for the NHS doctors and nurses trying to deliver a first class service without the resources they need. I cannot see the situation improving until the care sector is sorted out and patients can be discharged when they are medically ready rather than when they can be found a space in a care home.

Crohn's Disease

A trip to A&E – March 2023

Disclaimer : none of this blog should be taken as criticism of the doctors and nurses that treated me. They were struggling to provide a professional service in under resourced conditions.

THURSDAY 9th MARCH 2023

13:00. I had called in to my GP surgery to ask if a doctor could ring me about the malaena I was experiencing. (I’ll let you look that up to save me having to type out the gory details). When I returned home the surgery rang to say the doctor would like to see me that afternoon.

16:30 I explained the problem and that I hadn’t eaten anything since eight o’clock the previous night. The doctor checked my vital signs. All OK. We discussed whether I should go to our local A&E or see if it resolved itself, my preferred option. He went to speak to a colleague for a second opinion. They both agreed – A&E.

I returned home and told my wife the news. We packed my overnight bag as I knew it would be a long wait in A&E, (The last time I suffered malaena I ended up spending 2 weeks in hospital – not all that time in A&E obviously!)

My sister came to collect me and took me to East Surrey Hospital. Knowing that I was in for a difficult time I needed a strategy to cope with the inevitable delays that I would face. It would be a chance to experience the health service in crisis. To pass the time/record my experience I decided to Tweet my progress. (Disclaimer 2 : some of the spelling in the Tweets leaves a lot to be desired! I was cold, tired and hungry and had a cannula in one arm). Here goes…

18:20 Walked into East Surrey Hospital A&E. Handed the GP’s letter into reception and confirmed my details. I asked reception how busy they were that night. Not too bad! Fingers crossed. There only appeared to be 8 potential patients in the waiting area. I did not know how many had already been admitted to the inner sanctum.

After a few minutes I was called in by the triage nurse who took further details about my general health and medications.

19:20 Taken through to the A&E inner area and sat on a trolley in a cubicle.

19:42 A nurse inserted a cannula into my arm and took blood samples then hurried away to get them tested. A doctor would come and see me when the results were known.

20:45 A doctor, in very fetching all red scrubs, came over and told me that my Hb was 115. He had expected worse. My platelets were 120 which came as a surprise as they have been around 55 for the last few years (drug induced thrombocytopenia). The doctor said that he needed to do a rectal examination. I asked him to check my prostrate whilst he was there! No problem! He reported that it was small & smooth (which I think is a good sign). He directed me to a chair in another curtained area.

21:29 I was connected to saline drips together with cyclizine (anti-sickness) and then omeprazole (anti-heartburn) to protect my oesophagus.

21:57 Taken, in the chair, to have chest X-ray.

22:04 X-ray completed and returned to booth in A&E.

22:49 Just over 4 hours from checking in I was sitting in chair in limbo in the middle of A&E.

23:33 Another 2 hours of drips to complete before seeing another doctor. The chair was becoming uncomfortable and no sign of a bed. Midnight approached.

FRIDAY 10TH MARCH 2023

00:33 6 hours from arrival I was moved to a bed in a “Sub Unit”. This may sound very grand but in practice it was a bed, in one of the A&E corridors, signified by piece of paper stuck to wall saying “Sub Unit Bed 3”. Unfortunately it was next to the entrance for ambulance arrivals and the doors to the public waiting area. It was very cold as each time a trolley was brought in the sub zero temperature outside was evident.

03:46 Still on the bed SU3 in the busy corridor wondering what was happening. Communication is always the problem.

04:06 A nurse took my vital signs again and told me I was awaiting the doctor before deciding wha the next step was. Asked if I could have something to eat. Nurse returned with some sandwiches and ice cream. Managed a quarter of the worst sandwich I’ve ever tasted but the ice cream was delicious, albeit very small.

04:42 I went to the nurses’ station and asked what was happening. They were waiting for the medical team to come and see me. They were a bit “snowed under” but should be with me shortly.

04:45 Seen by doctor from medical team. Gave him a copy of my “jigsaw” diagram outlining my medical history which I had had the presence of mind to print off before heading for A&E. He seemed impressed. He was just filling in some details in my notes but I would have another couple of hours before I saw the gastro team.

07:19 I must have been tired enough to drift off for a while. The hospital was now waking up.

07:40 Have been told that the consultants started their rounds at 9:00 so have at least another 90 minutes before I get seen. Just heard nurse say “I’ve got one more bed space in the corridor then that’s it!”

08:08 A nurse came and put up a sign saying “nil by mouth” as “the gastro team might want to scope you. They could appear anytime this morning”. More frustration. She put up another saline drip. I asked if it could be put on a moveable stand so that it was easier to make my way to the toilet rather than have to disconnect it each time.

09:56 Must have dozed off again and during that time the saline drip had been transferred to a stand fixed to the bed and the moveable one had disappeared! Best laid plans….

12:09 It was getting so cold I put on my hat, scarf and coat in an attempt to keep warm. No outside windows so losing a sense of time. It’s midday already!

The gastro consultant and another doctor appeared to discuss my condition. I suggested that a busy, freezing corridor was not an appropriate location for this discussion and that we should find somewhere else. Luckily here was an empty office not far away so we decamped into there.


13:48 I had mentioned to the doctor that my shoulder had been hurting for the last few weeks. I should have mentioned it earlier and it was exacerbated by lying in the draught for hours. A porter arrived to wheel me, on the bed, for another x-ray. I was hoping that when I returned the position by the doors would have been occupied but no, it was still empty and I was back there again. At least it soaked up a few more mind numbingly boring minutes.

14:40 Another porter arrived with a chair to take me to the Endoscopy Unit.

15:00 It was now 20 hours since I had entered A&E and 14 hours on the bed in the corridor. I hoped nobody considered that I was whinging by tweeting my progress. I copied in our local Tory MP for East Surrey so that she was aware of the conditions in A&E. I did not expect a response and did not get one.

15:15 The consultant appeared and asked if I knew what an OGD (upper GI endoscopy) involved and the implications of banding. I replied that this would be my 16th time for having this procedure and that I had had one just 3 weeks ago! (Google oesophageal varices/band ligation for further information). I signed the consent form and preparations got underway. The nurses introduced themselves and I was wheeled into the theatre. Everyone was very friendly and caring. Bring on the burnt bananas (if you know, you know!)

15:37 I asked the endoscopy nurses if it was OK to take a picture of the equipment so that I had a record of when the procedure was about to start. (During my previous procedure at St.Thomas’ I had somehow managed, whilst under sedation, to take my camera from my pocket, carefully frame a picture and took a photo of the unit. I had no recollection of doing it so this time, to be sure, I handed my camera over!

17:30 I opted for full sedation. I always do. Even under sedation I do remember coming to slightly, retching and the nurse putting his hand on my shoulder telling me I was doing “very well”. When I fully came round in recovery I was told that 4 oesophageal varices had been banded.

18:41 I was wheeled to Charlwood Ward. I had spent a couple of weeks in this same ward after the last incident of malaena in June 2012, shortly after it was opened. A fifth bed had now been introduced into the 4 bed wards. Now, over 24 hours from setting foot in A&E, I had a bed on a ward. Fourteen of those hours were spent on a bed in a draughty corridor.

20:02 I must have dozed off yet again but that was understandable from the cocktail of fentanyl and midazolam that I had been given. I did need to see endoscopy report to confirm what I could eat but it was a little academic as no food was available.

21:48 I asked for a copy of the endoscopy report but was told that the consultant needed to explain it to me. It was important to know exactly what had been done during the procedure as it would dictate what I was allowed to eat. The nurse offered me a couple of Fortisips. Clearly I would be in hospital overnight so it was time to change into my pyjamas and try and get comfortable.

SATURDAY 11TH MARCH 2023

I managed to get some more, rather fitful, sleep as my shoulder was causing significant discomfort and the patient in the next bed was crying out in considerable pain. I must have still been under the influence of the sedation.

09:24 I messaged my wife to tell her that I would give her an update when I knew what was happening. Waiting for the doctors to do their round.

10:00 I was concerned that I might miss the ward round but decided to risk having a shower. The world seemed a better place afterwards!

10:13 The consultant and a doctor arrived. She explained again that she had banded 4 varices and that she wanted to keep me in hospital for at least another day. I countered that by saying that the hospital environment was “doing my head in” and that I was fully aware of the implications of having been banded and that, in my opinion, I would recover much quicker in my home environment. I also explained that I didn’t like the burden that being in hospital put upon my wife at home on her own. She hesitated but realised that I might discharge myself (I wouldn’t have done!). She agreed that I could leave that afternoon.

I asked THE question “what could stop me from being discharged”. As long as I had my medication from the pharmacy and the discharge letter then I would be good to go.

11:56 The period between the ward round and lunch is the quietest time on a ward and the best time to get some sleep. it was remarkably quiet. The patient in terrible pain had been taken off to theatre for his surgery and the other three patients were dozing.

12:25 The lunch trolley arrived. I was given a Level 6 soft bitesize meal and was just about to tuck in when it was whisked away from me! I needed a pureed Level 4 meal!

12:30 I was given a puree level 4 meal instead. Whilst it didn’t look very appetising it wasn’t bad and I enjoyed my first proper food for over 60 hours.

13:40 The ward sister appeared with my discharge letter and the tablets from pharmacy. I was free to go. I rang up my brother-in-law and he collected me.

15:01 Home again. Time to reflect upon what had caused my varices to burst so soon after having been given a clean bill of health only 3 weeks previously and to think about what I can do to prevent it happening again. will contact my consultants at my usual hospital to ask their advice.

There will be a second post comparing my previous experiences of A&E and how I tried to make the experience more bearable.

#IBDAwarenessDay, BAM, bile acid malabsorption, Donald Rumsfeld, IBD, IBD Awareness, ileal resection, ileostomy, Inflammatory Bowel Disease, St.Thomas' Hospital

We Don’t Know We Don’t Know

(This blog also appears on the Bowel Research UK website)

Do you have a “quotation that inspires you”? The one I would choose is probably not an obvious one for a health blog. You might have been expecting me to have trawled through the “inspirational” websites to find some relevant, life affirming words. I hope you’re not disappointed….

Here goes. Over to that well known, recently passed, US philosopher, Donald Rumsfeld. It’s the quote he was ridiculed for at the time, unfairly in my opinion, as it makes perfect sense. In case you don’t remember what he said :

“…as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns- the ones we don’t know we don’t know.”

Bear with me, I hope it will become clear. To illustrate the point I’m using a subject I feel particularly strongly about – bile acid malabsorption (BAM). As someone very actively engaged in bowel issues, I’ve read many comments from patients who have recently been diagnosed with BAM and many times they go on to say that their doctor had never heard of the condition before. That’s the first hurdle to overcome.

If you have been diagnosed with BAM you’ll know that it causes chronic diarrhoea. Bile acid is usually recirculated to the gallbladder via the far end of the small intestine. If that area is damaged or compromised the bile acid passes directly into the colon triggering the secretion of extra water, leading to looser stools. It can be a very debilitating condition.

I am a fellow sufferer as a result of losing my terminal ileum. (I had an ileostomy back in October 2010. Full story in my free to download book!). Before the operation I was offered the chance to take part in an Enhanced Recovery Scheme at one of the top London hospitals. Part of the ethos behind this regime is to fully inform the patient of what will happen at all stages of the process – pre-op, during the hospital stay and beyond. Was I told about BAM before the operation? I’d have to answer “maybe” and this brings us to the point of this post. Let me explain….

I was expecting my digestive system to function normally after the surgery. The Enhanced Recovery Nurse and the surgeon had told me that absorption of vitamins and salts would be much reduced as I would no longer have a terminal ileum. If someone told you that your body wouldn’t absorb salts properly what would you take that to mean? I took it at face value, I would need to up my intake of salt (sodium chloride) to compensate and take supplemental vitamins. I didn’t see the need to question the statement as it seemed very clear. Maybe I should have been more curious as I left hospital with a long term prescription for 12 Imodium capsules per day.

In fact it took four years before I underwent a SeHCAT scan and was diagnosed with severe BAM. It was then that I discovered it has an alternative name “Bile SALT Malabsorption”. Suddenly the comment about not absorbing “salt” took on another meaning. You can see the problem.

This is where Donald Rumsfeld comes in. I heard what the Enhanced Recovery Nurse and the surgeon told me; I understood what the words meant to me; but didn’t appreciate what the words meant to them. From their point of view – they were using their everyday, medical terms to describe a likely problem to a patient.

From this experience I have learnt to always question what I am being told and to do my best to get the doctor, consultant or surgeon to explain, in simple or non-medical terms, exactly what they mean and what they perceive the implications to be.

I keep coming back to those particular words from the quote “there are things we don’t know we don’t know.” Try repeating them to yourself as you enter the consulting room, either side of the desk.

Bear with me, it will become clear. To illustrate the point I’m using one of my favourite subjects – bile acid malabsorption (BAM). Maybe “favourite” isn’t the right description, make that “a subject I have felt the need to write about several times before”. There’s barely a day goes by when I don’t see a comment, on one of the IBD or BAM forums, from someone who has just been diagnosed with BAM and many times the post goes on to say that their doctor had never heard of the condition before. That’s the first hurdle to overcome.

I am a fellow sufferer as a result of losing my terminal ileum. (I had an ileostomy back in October 2010. Full story in my free to download book!). Before the operation I was offered the chance to take part in an Enhanced Recovery Scheme at one of the top London hospitals. Part of the ethos behind this regime is to fully inform the patient of what will happen at all stages of the process – pre-op, during the hospital stay and beyond. Was I told about BAM before the operation? I’d have to answer “maybe” and this brings us to the point of this post. Let me explain….

I was told that after the operation absorption of vitamins and salts would be much reduced due to lack of a terminal ileum. The surgeon repeated this message on his ward round post-op. If someone told you that your body wouldn’t absorb salts properly what would you take that to mean? I took it at face value, I would need to up my intake of salt (sodium chloride) to compensate and take supplemental vitamins. I didn’t see the need to question the statement as it seemed very clear.

It wasn’t until I was diagnosed with BAM (4 years after the ileostomy) that I found it has an alternative name “Bile SALT Malabsorption”. Suddenly the comment about not absorbing “salt” took on another meaning. You can see the problem.

This is where Donald Rumsfeld comes in. I heard what the Enhanced Recovery Nurse and the surgeon told me. I understood what the words meant – to me. I didn’t appreciate that I didn’t understand what the words meant to them. From their point of view – they were using their everyday, medical terms to describe a likely problem to a patient.

From this experience I have learnt that you must always question what you are being told and do your best to get the doctor, consultant or surgeon to explain, in simple terms or non-medical terms, exactly what they mean and what they perceive the implications to be.

I keep coming back to those particular words in the quote “there are things we don’t know we don’t know.” Try repeating them to yourself as you enter the consulting room…..

Active Patient, bone marrow biopsy, Crohn's Disease, follow-up letters, GSTT, gsttnhs, haematology, NHS patient experience;, outpatient appointments

The Importance of Follow-up Letters

Follow-up letters from appointments are an important part of your health records. They should contain what was discussed with your consultant, any conclusions arrived at or changes in medication etc. By default Guy’s and St.Thomas’ write to your GP after each appointment and copy in the patient under cover of a note that states “this is primarily a communication between medical professionals” (which I think is another way of saying “you probably won’t understand all the words we use”).

Now it has to be said that not all Departments stick to the “default” and I have had a couple of occasions (both with the same department) where the lack of letters caused issues. This is where my blog posts recording the latest appointment have proved more than just an exercise in self indulgence and why I read them prior to my next hospital visit.

The first time this happened was in March 2013 when I attended a regular appointment and was greeted by a doctor I hadn’t met before. We went into one of the side rooms where my notes were open on the desk. He introduced himself and said that he had been reading the notes to familiarise himself with my case. I had been hoping to see my usual consultant as I liked continuity and had issues with the lack of follow-up letters that I needed to raise with them. Unfortunately they were unavailable for that day’s clinic.

The new doctor said that, having read my notes, it was apparent that the condition I was suffering from was rare and started to discuss my low platelets. He noted that I had last been seen in October 2012. I stopped him in his tracks and said this was a clear reason why up-to-date notes and follow-up letters were so vital. There had been two further appointments since October and the platelet issue had been “parked”. A new, far more serious, condition had arisen – PVT (Portal Vein Thrombosis). This was now the priority.

I explained that this was an important appointment for me as I was expecting to run through my risk profile and at the end of it make the decision on whether to start blood thinners. My regular consultant had said they would discuss my case with th Department’s Warfarin expert, one of the professors.

At that point I started to think that this was all going to end up badly. I needed to kick start a reaction so I asked whether the professor was in the unit that day and what I needed to do to see her. Clearly this was never going to happen but it was worth a try! The doctor said that he would see if he could speak to my original consultant.

A few minutes later he returned with another consultant. I recognised her name as my clinic letters always stated that I was under her ultimate care. Putting two and two together she must have been the next one up the food chain from the doctor I usually saw. I went back over my expectations from this consultation. She explained that she worked closely with the “Warfarin Professor” and they jointly reviewed patients.

She ran through the risk factors and having looked at my notes and results, on balance, she would not recommend Warfarin yet. As far I was concerned it was the “right” answer. If there was a low risk of clotting then I was prepared to take that risk to avoid having starting yet another medication. Decision made, no Warfarin.

A month later I was still awaiting the missing follow-up letters. Time for some further action. I sent an email to the head of department (whose address I found on their web page). I apologised for contacting her directly but explained that raising the issue in clinic was having no effect. I added: “I thought it was therefore best to go straight to the top so that you can delegate any necessary actions…….” and briefly explained what had happened at my last appointment.
I hit the send button and got a very prompt response, 20 minutes later, apologising and saying it would be looked into.

The four missing letters arrived shortly afterwards, with an apology. I checked their contents against my blog and they were accurate records of the appointments.

From the above I’d like to pass on two thoughts : 1) that keeping your own record  is important and can prevent a waste of your time and a waste of NHS resources going over old issues that are already “parked”; 2) if you are having a problem with getting follow-up letters then go to the top and ask for their help. I have found those four little words “can you help me?” have opened up many situations whilst negotiating the pathway s through the NHS.

(I’ll leave the account of the second missing letter issue for another time. Suffice to say that I could have ended up having a third bone marrow biopsy! Not something I would recommend)

colonoscopy, Crohn's Disease, Fentanyl, Midazolam, Sedation

The Colonoscopy Experience

I had a colonoscopy a few days ago, the first one in five years. I’d forgotten the detail of what was involved probably because, in the meantime, I’ve had seven gastroscopies which do not require any preparation but are done under sedation.

If you’re reading this then I’m guessing you’ve either had a colonoscopy and want to know if your experience was similar to mine or you’re about to have one and are looking for some information on what it is like from a patient’s perspective.

First, the bad news. A couple of years ago I ran a quick poll on Facebook asking which of the tests IBD patients rated as the worst. Of the 700 responses almost 70% chose a colonoscopy. For the remainder it was mainly the dislike of having an MRI scan.

There is no disguising the fact that the colonoscopy is widely despised by patients and I wonder how many, with digestive problems, put off seeing their GP because they do not want to undergo this procedure. Unfortunately there are no alternative ways of taking biopsies in the gut but for some monitoring activities there is light at the end of the tunnel. More of that later.

The colonoscopy experience can be broken down into 4 acts – fasting, preparation, scoping and recovery. How does this work in practice? Let me use my recent experience to illustrate.

Act 1 – Fasting – started with a fibre free diet 3 days out. The following day I was allowed a light breakfast then liquids only until after the procedure. On the last occasion I made myself a mug of Marmite dissolved in hot water. It was disgusting and turns my stomach just thinking about it. Suggested alternatives were Bovril or an OXO cube. I tried a “vegan, beef favoured” OXO cube in hot water and took the first sip with some trepidation. To my surprise, it was very tasty. I have struggled with fasting in the past but this time it was fine.

Act 2 – Preparation – the dreaded purging liquid that many find the worst part of the whole procedure. There are three common brands – KleanPrep, MoviPrep and Citrafleet/Picolax – and they are taken in 2 doses. The most obvious difference is in the amount of liquid you mix up. KleanPrep requires 2 x 2 litres; MoviPrep requires 2 x 1 litre; Citrafleet/Picolax only requires 2 x 150ml.

There are medical reasons for using different types, for instance the ones requiring higher volumes of liquid are less likely to affect your kidney function. Luckily at GSTT the standard issue is Citrafleet. At 4pm I swallowed 4 senna tablets and an hour later downed the first 150ml of prep. Previously it had taken effect very quickly and I had not strayed far from the bathroom. This time the hours passed before….well you can guess!

Five years ago you would take the second dose of prep later that evening but then the instructions changed to taking it on the day of the procedure. I am very sceptical about this. I have a 90 minute journey from home to hospital, mostly on public transport, and the last thing I want is to still have anything left in my gut. As a compromise I got up very early in the morning and downed the second dose ready for the procedure that afternoon. Had my appointment been in the morning then I would have taken the dose late the previous day and put up with a disturbed night.

Let’s talk about sedation for a moment…

Sedation is commonly a cocktail of midazolam and fentanyl. I’ve heard the former described as the “vallium” of the mixture and it has memory suppressing qualities similar to rohypnol; fentanyl is the painkiller but also enhances the effect of the midazolam. The best way to describe the effect is, to borrow from Pink Floyd, you are comfortably numb but sufficiently conscious to respond to the endoscopist’s requests to adjust your body position as required.

Sedation has implications. If you choose that option you will need someone to escort you home and you are not allowed to drive for 24 hours as your insurance would be invalid.

I had looked back at old colonoscopy reports. They all showed sedation and yet I remembered coming home without supervision on at least one occasion. Putting two and two together I concluded that I would not need an escort so didn’t organise one. When I re-read the appointment instructions it clearly stated no escort, no sedation. That left me in a quandary. The options – find an escort or have no sedation or cancel the procedure. I decided to ask the IBD community on Twitter if no sedation was an option I should consider. I was inundated with responses ranging from “of course you need it” to “you’ll be fine without it”.

In another poll, this time on Twitter, patients were asked about their sedation preferences. Nearly 500 responded of which 80% chose sedation; 9% no sedation; 7% said it depended upon their disease activity; and the final 4% said it depended who was carrying out the procedure.

I Tweeted that I had not managed to organise an escort, half hoping that someone might be able to help but I thought it was probably a forlorn hope. I was delighted to get many replies from patients and non-patients saying that if they were based in London they would help. Even more heartening two people actually offered to act as my escort. The wonder of social media! I made contact with one of those who had replied and she was very happy to assist.

The week before the colonoscopy I happened to have a tele-appointment with my gastro consultant. He would also be driving the scope. I told him of my dilemma and he said that I would be fine with just “gas and air” (Entonox) and that he would go very carefully. That made my mind up – no sedation and therefore no escort.

On the day of the procedure I set off for London early so that I could take some photos of the River Thames before my own, internal, photo session……

HMS Belfast
Guy’s Hospital at London Bridge, next to The Shard

Act 3 – Scoping – having found the Endoscopy Suite, despite the lack of signage, I was greeted by the receptionist. “Hello sweetheart, what’s your name?” Once signed in a nurse showed me to a cubicle and gave me two surgical gowns, some hospital socks and a pair of “modesty” shorts. After running through a checklist he took my blood pressure and I took a COVID LFT. He left me whilst I changed into the hospital clothes. The modesty shorts have an opening at the back. On a previous occasion I had managed to put them on the wrong way round and they had proved to be anything but modest.

At this point, if I had opted for sadation, the nurse would have inserted a cannula (and I would have obeyed the second law of cannulation that you must take a photo and post it on SoMe). A few minutes later my consultant appeared, ran through the potential risks and I signed the consent form. With that completed he led me to the procedure room. The nurses introduced themselves and I lay down on the trolley. One of the nurses showed me how to use the Entonox. It is delivered via a mouthpiece and if you feel any discomfort you take a few deep breaths to mask it.

I rolled over onto my left side and drew my knees up. The monitor was showing my heart rate as 65 bpm. With the camera inserted it was an easy run until the sharp bend (splenic flexure) was reached. That is where the skill of the endoscopist really comes into play. I was asked to roll onto my back. Air is used to inflate the gut and make the passage of the camera easier. Every so often a water spray is deployed to clean the lens or flush any debris that the prep solution didn’t dislodge.

Being wide awake I was able to watch the whole procedure and ask what we were seeing.  On screen there is a small “satnav” window that shows the 3D position of the endoscope. There was some very mild inflammation in the colon but “nothing that needed treating or to worry about and your last calprotectin was 37. I’ll take a few biopsies on the way out”.

I used my time to ask questions. One in particular I was keen to know the answer to. When I had a stoma I had been surprised that this thing, part of my intestine, that was sticking through my abdominal wall, was impervious to touch. It had been explained to me that the gut has no nerves so I asked if this was true. Yes, it was. If there were nerves in the gut you would feel every piece of food passing through it. That made sense. The question I should have asked, of course, was how does the inflammation square with the low calprotectin score.

The camera made its way ever onwards. There were a few difficult manoeuvres that required withdrawing a few centimetres and then re-orientating it with the assistance of the 3D image. The camera reached just beyond my anastomosis – the surgical join between my small and large intestines – made easier as my ileocaecal valve and terminal ileum were removed in 2010.

“You can tell we’ve now entered the small intestine as the walls have a different structure and that is how food is absorbed.”

Time for the camera to be withdrawn and the biopsies taken. I had never considered how the biopsy samples got from the gut into phials ready to go to the lab. Being fully awake allowed me to watch the process. The endoscope tube has a cavity through it that allows a separate instrument, with a pair of small forceps on the end, to be pushed out beyond the scope. The tool takes a biopsy from the gut wall, directed by the endoscopist, and then one of the assistants withdraws the tool and retrieves the sample. The tool is then re-introduced through the endoscope and the process repeated.

Watching the grab collecting samples is slightly disconcerting as you expect to feel it and there is a small trickle of blood at each location but no nerves, no feelings. After a dozen biopsies had been taken the procedure was over. I had hardly used the Entonox and will choose the no sedation option for future colonoscopies. The results would be ready in two weeks time. My consultant asked me to email him at that point. I wonder if the results will explain my calprotectin question?

My Twitter conversation about the advisability of not having sedation had reached him and he had done some research. Looking through the records he found that I had a colonoscopy in 2015 without sedation. That explained why I recalled not needing an escort.

The final discussion before leaving the procedure room was about alternatives to having a colonoscopy. My consultant said that when biopsies are not needed then ultrasound was looking promising and that its use was taught as standard in some countries but not UK. Let’s hope that changes.

Act 4 – Recovery – if you have had sedation then you will be taken in to a recovery area until you have regained full consciousness and have changed out of the hospital clothes. Your escort will be told you are ready for collection. Before you leave the cannula is removed and you will be given a copy of the colonoscopy report. My report showed that the prep was “excellent”. It concluded with a series of “IBD Scores”. The only one that wasn’t zero was the SES-CD (Simple Endoscopic Score for Crohn’s Disease). The score was 3 which equates to “mild endoscopic activity” and is the lowest of the scores after “remission”.

There may be after effects, one of the commonest being discomfort caused by the inflation of the gut. I didn’t notice any of this. Another issue is that the prep has decimated your gut microbiome and this takes time to re-establish. After a week I’m still not convinced is has returned to normal. I have been taking a pro-biotic yogurt to try and help the process along.

The colonoscopy experience was over.

UPDATE: I contacted my consultant for the biopsy results. “Biopsies of colon totally normal… consistent with calprotectin…..”

The next performance was a gastroscopy (an Upper GI endoscopy) one week later but I can’t tell you a lot about that as I was away with the fairies. Thank you midazolam and fentanyl……and my escort.

Final thoughts – for those about to have their first colonoscopy I would suggest that you arrange an escort and opt for sedation. It can make the procedure a lot less stressful. If you subsequently become an “old hand” at scoping you may want to review your options.

I think we have all felt embarrassed about where they are going to stick that camera but I try to remember that the Endoscopy team will have seen it all before. It is a routine procedure that they carry out multiple times a day. When it is your turn I hope it all goes well.

Crohn's Disease

Tired and Emotional

Emotions

I’m not an emotional person. I don’t know whether it is simply the way I’m made or that I had any emotion knocked out of me as a defence mechanism to cope with the early death of my father. In some ways this lack of emotion may have helped me survive those challenging experiences and gory sights I mentioned earlier. So I was surprised that, when researching my book, I became quite emotional when reading the account of a meeting with one of my surgeons shortly after my ileostomy. It still has the affect to this day.

“He remarked how well I looked considering: “what they had done to me”. He had joined his old colleagues at St.Thomas’ on the day to take part in the operation which he described as a “classic”. He said it was one of the most complex they had ever carried out. My innards were in a really bad way.

He had a trainee doctor in with him for the clinic and was showing her my pre-operative CT scan. He described it as looking like an octopus. Where had I heard that before? My intestines had, in places, attached themselves to other parts of the body such as the back muscles. That last comment was quite a revelation and would explain the back pain that I had been suffering from for the last couple of years. I dread to think what would have happened if the surgery hadn’t been carried out when it was.”

I’ve tried analysing what triggers these feelings but had not been able to reach a conclusion. Then I heard this. Maybe this explains why…..

Adrian Chiles was interviewing the radio presenter Mark Radcliff about the cancer he had been treated for. Here is part of what he said “I took a little bit of counselling at the Maggie Centre ….I’m not someone who cries a lot but when I went into theCentre the woman, who was counselling me, asked ‘So what point are you up to?’ and I just burst into tears. She said ‘Have you just finished your treatment?’ It’s a very common thing at that point. You realise the struggle you’ve really been through. It dawns on you.”

Maybe it dawned on me just what my mind and body went through and come out the other side smiling and with a very positive view of the future. Do other IBD patients experienced similar emotions?

Postscript

After writing this post I was discussing coping with Crohn’s Disease with my wife and mentioned my theory that a lack of emotion might just have helped me deal with it. She genuinely surprised me by saying that if she had Crohn’s she “wouldn’t want to have gone on” due to the embarrassment of the tests and procedures we undergo, the stress of being taken short and the pain we experience. It brought home to me how differently each of us can react to this disease.

….and the tired? Two doses of Vedolizumab may be the cause of additional fatigue

colorectal surgery, crohn's, crohn's complications, Crohn's Disease, gastroenterology, IBD, ileal resection

Pendulum

When I was younger, so much younger than today I never….

….wanted to go anywhere near a hospital. It was my biggest fear. Some of my schoolmates had already been incarcerated to have tonsils or an appendix removed. I don’t know what scared me specifically. Was it the thought of surgery? Was it an enforced stay away from the comforts of home and family? Was it thoughts of my own mortality? My fears turned into reality, in my early twenties, when I found myself in an ambulance, sirens blaring, heading for Croydon General Hospital with suspected appendicitis.

As it turned out it was more sinister than that – a perforated bowel that had leaked into my abdominal cavity and peritonitis had set in. (More of this later) When I left hospital after 3 weeks, most of which were spent on a “liquids only” regime, I had not suffered any particularly traumatic experiences but it had not lessened my fears.

I had been told that this first Crohn’s surgery was unlikely to be the last. In the ensuing years I still considered the knife to be the “last resort”(and, to be fair, so did my consultants). It was the “backstop” (to use a popular word) once all viable medication had been exhausted. In 2010 I was faced with surgery again having tried all the possible drug treatments. Thirty years between operations? Not bad. Three times longer than anticipated. Following the successful removal of a terminal ileum stricture, temporary ileostomy and subsequent reversal, I revisited my thoughts. If I had chosen elective surgery years earlier would my QOL have been better, sooner? The pendulum had now swung the other way and I started to advocate that surgery should not be considered a “last resort” or an indication that all other treatment had failed. It should be seen as an alternative to drug based treatment. It’s an area which various learned bodies are researching.

Then in January 2017 I turned yellow (jaundice). I was sent to see an upper GI surgeon (at my local hospital) who explained that the solution would be to remove my gallbladder. A relatively simple procedure, carried out laparoscopically. When he examined me he happened to notice the large, laparotomy scar stretching up my midline. He asked me to go through my medical history. At the end of my story, which included Crohn’s, portal vein thrombosis (probably due to the peritonitis), enlarged spleen and varices, he concluded I should be referred to a specialist liver unit as the operation would require specialist facilities.

A few weeks later I went to see another upper GI surgeon, this time at Kings. His registrar had started to go through the standard, pre-surgery checklist when I produced a drawing showing the route that my health had taken so far. She metaphorically gulped and went off to find the lead surgeon. He expressed his concern about carrying out surgery and after a lengthy discussion we concluded it would be best to leave well alone and only operate if it became absolutely necessary.

At my request I saw him again a couple of weeks ago as I had noticed a pain in my right hand side and wondered if it was a portent for needing his expertise with a scalpel. He prodded and poked the offending spot and announced that I had a post-operative hernia at the site of my former stoma. Again this would usually be a simple day operation but given my history it was another one to add to the “do nothing unless absolutely necessary” list. It dawned on me that the pendulum had now swung back to its original position. Due to circumstances, in my case, surgery really should be considered as a last resort.

In the meantime the long running “why is my calprotectin so high” question had been resolved. A capsule endoscopy in November 2018 showed that inflammation in my small bowel has returned. I have a meeting with my gastroenterologist next Monday to discuss starting Vedolizumab. I was minded to suggest holding off for the time being but that may not be a sensible position to take as I really do need to avoid surgery for as long as possible. Should be an interesting discussion.

Crohn's Disease, taking control, taking control as a patient

Medical Record

Temporary tattoo on forearm. QR code links to medical record summary (it really does!)

This image gained some interest when I posted it on Twitter so I thought I would explain it’s genesis. From the outset I wish to make it clear that it is my solution to my specific needs. I’m not proposing it as a universal solution for quick access to medical information, more a stimulus for further thinking and discussion. (I’m also not claiming this as an original idea – there is at least one patient in USA who did it first)

The Trigger

In February 2017 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 medication.

Next I saw an A&E Registrar. He 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, the hint of a stoma location and an appendectomy incision. He wouldn’t have known why the large scar was there and would have assumed my appendix had been taken out. He would be unaware that : I have Crohn’s disease; the attempt to remove my appendix had been aborted; I have Portal Vein Thrombosis resulting in additional veins growing in my esophagus (varices) and around by gallbladder; that my spleen is enlarged; or that the low platelet count is now normal for me. Valuable time could have been lost trying to investigate the problems that were already known about and being treated.

Do It Yourself

As a result of my A&E visit I wondered if there was a standard, minimum set of data that should be available? Was there a standard format for the data? I searched the internet and could find nothing. A good starting point would therefore 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?

Attempt 1

First attempt – using a USB bracelet. First task – decide upon data and format. I settled on two top level documents – i) a simple, overall summary plus ii) a detailed table that recorded each appointment or procedure. These documents were stored as pdf files and linked to various back-up documents such as laboratory or histological reports.

USB Bracelet

There were two problems :

The format of the data was such that it would still require a fair amount of time to wade through and understand the aetiology of ,and relationships between, the various LTCs. This was solvable but the second issue would be insurmountable.

In order to protect the system from viruses it is unlikely any NHS computer would allow the reading of an external USB stick. Time for a rethink.

Back to the Drawing Board

A couple of years ago I drew  a diagram to try and understand the aetiology/relationships that I mentioned above. I used the metaphor of a jigsaw as that is how my health appears to me. The penny then dropped that it would be a good way of showing a new doctor or surgeon the complexity of my case on just a single page. This illustration shows an early version of the drawing.

Early version of “jigsaw” diagram

…and then someone set me the challenge of making an interactive version that would open up the relevant documents or test results when you click on an element of the diagram. This would make the ideal interface for my medical record.

Basis of interactive medical record jigsaw

To get over the USB security problem I settled on holding the data on a server and then accessing it via a QR code. Initially I thought of using a dog tag style SOS pendant with the code engraved on it but I have yet to find a company that can do this as a one-off at a reasonable price. I could use a conventional SOS bracelet with a printed QR code inside but why not try a tattoo?

I didn’t want a permanent tattoo as it would not allow for any future changes. I opted to try making a temporary one using those kits that are readily available online. After a couple of false starts, mainly due to not reading the instructions carefully (it’s a man thing), I had a readable QR code tattoo. Where to stick it? The ideal position would be somewhere that is not generally visible but would be seen by an HCP. I chose the inside of my forearm, just above the wrist. Anyone looking to insert a cannula would be bound to see this and hopefully use a phone or tablet to scan the code.

(I’m counting on the HCP having the curiosity to try the link and once  opened realise the importance of the information available. You could call this a “leap of faith”)

Future Developments

Life would be so much easier if the NHS had a universally accessible records system that held all our medical details, linked to our unique NHS patient number (only needs a simple, unchanging tattoo). I can’t see that happening in my lifetime given the success of previous attempts.

Clearly I have no issues about the confidentiality of my medical data or I wouldn’t be writing/publishing this post. I know that many patients do and this needs to be taken into account. I am willing to trade confidentiality for the speed at which my medical record could be read should I be involved in an emergency.

My automedicography – a personal view