Category Archives: Active Patient

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)

..but why the Octopus?

When I was looking for a book title and a name for my rejuvenated blog I wanted something slightly “off the wall”. Whilst I was writing the chapter about surgery looming I came across the consultant’s explanation of the CT scan he had in front of him. “It looks like you’ve got an octopus in there.” That set my imagination running and I pictured the scene in theatre where the surgical team had “released the octopus”, cut out the offending bit and then wrestled the remainder back, safely, into my abdomen.

Search for title over and seed of idea for book cover sewn.

As I neared the end of writing it occurred to me that there was a second octopus to be wrestled. It’s potentially a problem for all of us that suffer from chronic illnesses, namely, managing our route through the multiple tentacles of the NHS system with multiple consultants, procedures, specialities and clinics. Add to this the lack of a universal patient record system that can be accessed in different hospitals and it is apparent it’s not necessarily a simple process.

Life was simple when being treated by one gastro team at one hospital. It wasn’t until 2010 that another hospital entered the equation as my local hospital were unable to cope with the complexity of the forthcoming surgery and referred me to St.Thomas’.

This calls for a diagram –

My Personal Octopus

Some “tentacles” act in a co-ordinated manner; others seem to be a law unto themselves. Some tentacles communicate well with the others, unaided; others need a helping hand.

For example, if you’re booked to go for a procedure, let’s say an MRI scan, then it makes sense that your next gastro appointment is after the radiologist has written the follow-up report. Similarly, if you’ve had biopsies taken during a colonoscopy, you want the results to be available before you meet your gastro. This is not rocket science but if not co-ordinated then you simply end up wasting valuable appointments, consultant’s time and, just as importantly, your own time.

In the past I’ve let the system take its course but with mixed results so now I like to give it a helping hand. This is getting more difficult with the apparent demise of the dedicated medical secretary. For several years, when the frequency outpatients appointments and procedures had reached its height, I had the pleasure of dealing with a truly exceptional one. Let’s call her Sally. Any issues would be quickly resolved by a  simple exchange of emails. Sadly she left the NHS.

Nowadays I contact my consultant directly, but sparingly. I don’t particularly like doing it as I know he is already exceptionally busy. I can justify this approach to myself as in the long run time/resources will be saved by avoiding abortive appointments.

I suppose you could now say that I am “massaging the octopus” rather than an all-out Greco-Roman grapple.

 

 

 

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 1978.

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 templte should get you started on mapping your medical history

Here’s the most up-to-date version of the diagram, taking the story up to the Upper GI endoscopy in December 2019

Updated – December 2019

…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 consumng part was redacting personal details from the documents.

http://www.wrestlingtheoctopus.com/MedRec

…and then taking it to its logical conclusion, and with thanks to the example set by @MightyCasey, 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. Here’s the link :

Crohn’s Jigsaw – The Movie (1080p)

Templates

Medical Jigsaw – Keynote Template

Medical Jigsaw – PPT Template

Good Doctor, Exceptional Doctor

A while 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 #Tweetchat.

Link to Sharon’s post – http://blogs.bmj.com/bmj/2017/09/13/sharon-roman-in-good-hands

Medical Records

A subject I’ve written about before but always worth revisiting. These are my experiences within three UK NHS Hospital Trusts and span 40 years.

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 results. 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 very little. Government backed IT projects are notorious for being disaster areas.

Patient Rights

Where does that leave the patient?

In the UK you have a right to access your medical records. Since 2000 onwards 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.

Information Overload?

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 Horos which opens and views the files.. 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 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. Here’s my chosen format :

Future Developments

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?

Watch this space…..

In Case of Emergency

A few months back I ended up in our local A&E (ER) Department as I had turned yellow. The first person I saw was the triage nurse who asked me lots of questions about health conditions, history  and medications. When we had finished running through the various ailments she complimented me on my knowledge but it struck me that it would have been a different story if I had been admitted unconscious or in a confused state.

Next I saw an A&E Registrar. What would he have concluded if I had been unable 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 platelets would show up around 60, rather than 150+. Valuable time could have been lost trying to solve the wrong problems.

What actually happened it that I handed him a copy of a chart I had drawn up showing the key events in my medical history over the last 7 years. The doctor thanked me and used it as the basis for the questions he then asked.  He then added it to my medical notes. Here’s the diagram :

In the ideal world the NHS would have a comprehensive medical record for each patient, held on a central system, that could be accessed by any doctor when required. A patient’s unique identifier, probably their NHS number, could be used as the reference code. The NHS tried to implement such as system (NpFIT). It didn’t work and there’s a link to the 2014 Report at the bottom of this post.

There are, of course, the likes of SOS Talisman bracelets which have some very basic information engraved on or contained within them. Then 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 all appear to be based in the US.  What I wanted was a standalone device that would be easily wearable and accessible. A bracelet with built-in USB memory seemed to be the ideal solution. The next challenge would be how to record the information.

I searched to see if there was a proposed standard data set for NHS use but could find nothing that displayed more than the most basic data. Certainly nothing that was suitable for a patient with long term, multiple conditions. There was nothing for it but to produce my own format. I settled upon two documents – i) a simple, overall summary plus ii) a very detailed table that recorded each appointment/follow-up letter; each procedure undergone and associated report; and any other relevant items such as emails.

Key Medical Details (with links)

I had already obtained hard copies of all the medical records from the three health authorities I have been treated under and had started the task of entering the relevant sections onto a computer. The thought of entering 40 years worth of notes from scratch would have been just too daunting.

The detail (geeky) bit : initially the bulk of the data was put into a spreadsheet (Excel) using a combination of a simple scanner and text recognition software. As the task neared completion it made sense to convert from Excel to Word as this would allow me to save the document as an html file that could be read by any web browser. The external documents (reports, emails) were scanned or saved as either jpg or pdf files and then linked back to the main document.

Detailed Medical Record

Job done. I can now wear all the relevant my medical details on a simple, universally accessible wristband, rather like a tortoise carrying everything with them wherever they go.

USB Bracelet

There are issues that I haven’t addressed :

Privacy – I don’t have any issues with allowing access to my medical records confidential (if I did I wouldn’t write a blog) but I can understand that some patients would want some type of password or lock on the files.

Security – does an NHS computer allow the reading of an external USB stick or is access restricted to protect from viruses etc?

Since originally publishing this post a fellow patient suggested using a QR code to link to a remotely held copy of relevant medical details. The QR could be engraved on a pendant or bracelet but would it be obvious to medical staff how to use it? How about a QR tattoo in a prominent position? More thinking to be done…..

The 2014 Report on NpFIT failure :

*NpFIT – this proposal has been around for several years but proved impossible to implement. The link below will take you to the report outlining why the £6billion project failed.”

https://www.cl.cam.ac.uk/~rja14/Papers/npfit-mpp-2014-case-history.pdf

 

 

 

Do you mind an audience?

Gastro Appointment – Guy’s Hospital – 20th February 2017

I knew this was going to be an “interesting” consultation and it even started in a strange way. Would you expect to be greeted by a live violinist in the waiting room? Whilst I applaud the hospital for trying something different I’m not sure what it did for other patient’s stress levels. It didn’t help mine.

Having been waiting for over an hour a nurse appeared and announced the clinic was running 90 minutes late. Maybe she had made an earlier announcement but was drowned out by the violin. I knew I would be in for an even longer wait as I had requested to see my usual Consultant.

When I was finally shown into his room, he apologised for the delay and we started working through my list.

1 – Calprotectin result – previously 512. Had now risen to 895. I thought this was not unexpected as I was starting to feel a certain amount of pain when food passed across my anastomosis and through the transverse colon.

2 – Dependent upon the above – have you discussed further investigation? Barium enema? We had agreed before Christmas that, dependent upon the calprotectin result, further investigation could be needed. He favoured doing another colonoscopy.

3 – Run through the last follow-up letter with translation. What are implications of fistulas and adhesions?  We went through the letter and made sure I understood the medical terms. I was concerned that the mention of fistulas, strictures and adhesions meant only one thing – surgery. He responded that the possibility of fistulas was the most concerning; adhesions were to be expected but he was still was struggling to understand the apparent differences between the MRI and what he had physically seen during the colonoscopy. Strictures should have appeared on the camera.

I asked if it was possible for the Crohn’s to have moved from my small intestine to my colon. He said that it did not usually happen. A repeat colonoscopy would look for this. He asked if I minded having an audience as they were running a visit for ten overseas gastroenterologists to show how endoscopies were carried out at St.Thomas’. I really wasn’t fussed and it meant that I had the date set there and then. (Wonder if they will film it for YouTube. Would be taking selfies to another level).

4 – Plan for treatment – start Crohn’s medications. The most likely treatment would be one of the “MABs”. We discussed my previous experience with Infliximab and that was duly noted on my medical file. I wondered if I ended up needing regular infusions whether these could be carried out locally rather than needing a trip to London each time. He said they would encourage that but would still keep control of my case.

5 – Recent trip to A&E with jaundice. Violent shivering. Nausea. Turning yellow. Ultrasound scan 21st February. Need to make sure results are passed on. I quickly ran through my recent trip to our local A&E. He was surprised that during the whole incident I felt no pain. I mentioned I would be having an ultrasound scan the following day. (See below)

6 – Did East Surrey liaise with St. Thomas’? Did blood test results get passed over from East Surrey? There had been no contact with East Surrey. Something for me to chase up when I went there for the ultrasound.

7 – Hb looked low to me. He was not concerned about my Hb

8 – Do the treatment pathways change with age ie. over 60. Have any studies been done into the needs of the “older” patient? The main consideration would be the type of drugs used and their effect on an immune system that weakens with age.

9 – Opportunities for doing some more public speaking. Taking year off of work, maybe longer. There were plenty of opportunities. The danger would be becoming overused! I explained that I wanted to do something that would help the cause of Crohn’s patients.

10 – Not felt well for last 2 days. ED. Taking more Loperamide to try and combat. Have any patients reported that Loperamide from different manufacturers having varying levels of efficacy? I had been suffering bouts of having to rush off to the bathroom and it was the uncertaintity of the cause which I struggled with – virus, crohn’s, BAM or dodgy food. He suggested that I should go and see my GP to arrange a prescription for Questran (a bile acid sequestrant) so that it was available should I decide to start taking it. I had wondered if it was possible that different Loperamide makes could be causing my present problem? This rang a bell. He suggested I put it to the test by using the different makes in turn and noting the outcome.

I then went off to find the Endoscopy section to try and pick up the colonoscopy prep but would first need a time and date for the procedure. After a lot of ringing around the very tenacious nurse managed to get it all sorted out. Colonoscopy planned for 10:00am Saturday 11th March. The Endoscopy Unit were currently reviewing how the prep would be dispensed so I was given a prescription to take down to the Outpatient Pharmacy.

Roll on 11th March……

Ultrasound Scan – East Surrey Hospital – 21st February 2017

In complete contrast to yesterday’s delays, I arrived at the Imaging Unit early, waited five minutes and was then shown into the ultrasound suite.

They had the luxury of warmed lubricating gel! The scan took around 10 minutes during which I discussed with the sonographer what I would expect her to see – a large gallstone (first seen in 2014) and an enlarged spleen. At first the gallstone wasn’t apparent but when she applied the scanning head from a different position it appeared, except it was now a group of small stones. She wanted to see if they were mobile so got me to stand next to the US unit and then jump up and down. (I’m pleased they don’t get you to do this during a colonoscopy.) The stones had moved to the bottom of the gallbladder. The whole procedure was completed before my due appointment time.

I mentioned that I needed to get a copy of the report sent to my consultant at St.Thomas’. The sonographer asked me to return to waiting area and she would print off a copy of the report for me to take away.

24+ hours in Accident and Emergency

Another unplanned trip to hospital but certainly a lot less fraught than the last time I was taken to A&E on the occasion of the veins in my esophagus bursting. That was back in 2012.

This latest visit would be a good chance to witness the much publicised NHS A&E in crisis from first hand, and also find out what was wrong with me. I decided to record my progress through the system (which is why this is a long post).

THE ROAD TO A&E

Last Friday lunchtime I was making my way indoors, after doing some outside chores, when I started to feel nauseous. It was bad. Then the shivers appeared. I started to shake violently and uncontrollably. This took me back to the period immediately after my ileostomy when I woke up in Recovery. The solution that day was for the nurse to cover me with a Bair Hugger, a hollow blanket into which they blew hot air.

I sat on the sofa for a while and slowly the nausea passed but the shivering continued and my extremeties where freezing. Nothing for it but stick the electric blanket on maximum, fill a hot water bottle and go to bed. I finally managed to get to sleep and around five hours later woke up to find all the symptoms gone. Very strange.

The following morning my wife commented that I was turning yellow. That rang alarm bells because it was one of the signs I had been told to look out for as an indicator that I had problems with my liver. Should I go straight down to my local A&E now? I was feeling OK. I posted the symptoms on the PSC and BAM support FB pages and asked for opinions. They started trickling in. The concensus was that it could be very serious and that I should go down straight away.  To be honest the thought of going down to A&E over the weekend did not fill me with enthusiasm and I decided, since I felt OK, I would go and see my GP first.

First thing Monday I called the surgery and was offered an appointment for 11:00. I mucked out (stables) and then set off to the doctor’s. The consultation must have lasted 20 minutes and he concluded, that given my medical history, I should undergo tests as I did look jaundiced. The only way to get tests done urgently was to make my way to A&E. We then discussed whether I should go to East Surrey (local) or St.Thomas’ (my usual hospital). I said I would seek the advice of my consultant at St.Thomas’ before making that decision. I sent off an emai to which there was a prompt reply saying that I should go to my local A&E.

I decided it would be worth packing an overnight bag, “just in case”. I actually referred to one of my old posts for a checklist – http://www.wrestlingtheoctopus.com/top-tips-for-hospital-survival-updated-november-2014/

After lunch I was given a lift down to East Surrey Hospital, Redhill.

TIMETABLE IN A&E

13:49  Booked in at reception. The indicator board was showing just over 2 hours wait to be seen. Each time I glanced at it the time was increasing. Luckily I had a book with me.

14:54 Called in by Assessment (Triage) Nurse who went through details of my medical history, current symptoms and medications. When she had sufficient information she took me through into the main A&E area. So far so good, just over the hour since admission.

15:15 Handed over to A&E Registrar who took me to a curtained cubicle, fitted me with a cannula so he could take blood tests. There were a number of phials to fill and, something I’d not seen before, a couple of bottles for blood cultures. Once he had sent them off for analysis he came back and asked a lot more questions about my medical history.

Obligatory cannula selfie – as required by The Patients’ Code

Because my recent medical history is complex I had the presence of mind to take a copy of the chart I had drawn up showing the period 2010 to 2017.

Here’s the document – Medical Record Chart – 2010 to 2017

16:00 First blood results returned and OK. It would be the later samples that were of more interest. I was impressed as it was only an hour from being assessed. To free up the cubicle I moved to a chair in the waiting area.

18:07 The good progress made earlier had lulled me into a false sense of optimism. The A&E Registrar told me that I would be kept in overnight in order to carry out an ERCP in the morning. I was taken to the CDU (Clinical Decision Unit) and given a bed. It would be a lot quieter here. I decided to stay in my normal clothes and sat in the bedside chair reading my book.

18:20 Dinner is served.

Cordon bleu dinner

In the past I have defended NHS hospital food but in this instance I’ll let you decide. I took a few mouthfuls and resigned myself to a night in A&E. Since the CDU is just for transitory patients there are no overbed entertainment units. I would have to content myself reading my book.

The CDU (Clinical Decision Unit) – photo taken on second day in A&E

19:10 The A&E Registrar reappeared. He had discussed my case with the Medical Doctor and Consultant doing their Ward Round. They were not as concerned with the blood test results now they have the full set. The Medical Doctor would come and see me to decide way forward with a view to me going home that night and then having scan at GSTT.

21:20 Still waiting to see Medical Doctor. Went and found nurse to see what was going on. He bleeped Medical Team. I explained that I was concerned that by the time I got discharged it would be too late to expect a lift home.

22:43 Still no sign. Nurse bleeped Medical Team for third timehhh.

22:52 Nurse came to tell me that Consultant will be around to see me in the morning. I got dressed for bed and attempted to get some sleep.

07:40 Did manage to get some sleep apart from a few disturbances. Nurse said that Consultants ward round starts at 9:00 so I would see them some time after that.

10:55 Call on my mobile from my GP to see how I was. Thanked him for ringing and explained that I was still waiting to see a Consultant after 21 hours. I would let him know what happened.

12:00 Pointed out to a nurse that I had been due to see the Consultant that morning. He said “it’s complicated” which got me thinkng but he meant my condition but he meant the situation. There had been a communication breakdown and he didn’t know why I wasn’t seen last night. The Medical Registrar was now, personally, going to deal with my case. The nurse had seen the original A&E Registrar and told him that his patient from the previous afternoon had still not been seen.

12:40 One of the Junior Doctors appeared and asked me how I felt. I replied “forgotten”. We went through my medical history and symptoms again. She would go off and discuss with her boss. They would come and see me in next hour to hour and a half.

15:05 It was now 24 hours since being admitted to East Surrey A&E and I was still waiting for the Consultant to come and discuss treatment or the next steps. I started to wonder what the implications of self discharge would be. I didn’t want to jeopardise any future tests.

15:20 Went and found a nurse and asked them to contact the Medical Team to find out what was happening.

15:30 The junior doctor reappeared with her boss, the Consultant. He apologised and said I should have been seen that morning and had a blood test. We went through the prognosis.  He thought the most likely cause was a gallstone blocking tube on Friday but had now passed through. The plan was to take a quick blood test and then for me to see a member of Gastro Team between 17:00 and 18:00. If they are happy then discharge.

16:00 A nurse came in to take the blood samples and then send them to the lab.

17:50 A member of the Gastro Team appeared. It was my old consultant who I saw between 2000 – 2009 and I got on well with. It was nice to be re-acquainted. After a short discussion he said “you’re too well to be in here. I’m going to discharge you but I want you to have a follow-up blood test and an ultrasound scan at a later date.” (He was quite happy that this current episode be closed out by East Surrey rather than referring back to St.Thomas’.) All that was now stopping me from leaving was the paperwork and he was passing that task to one of his junior doctors to complete.

18:05 Dinner arrived. I didn’t want to risk going hungry by turning it down but when I lifted the cover it appeared that the greater risk would be eating it. Not wanting to tempt fate, I had not changed into my outdoor clothes yet. I went back to reading my book.

19:15 The junior doctor that I had seen twice that day already appeared with the necessary paperwork. All I needed to do was get dressed and wait for the nurse to hand over the dischargeletter.

As ever the NHS nurses were great – friendly, professional and caring. (Although I already knew this)

WHAT DID I EXPECT?

I have attended A&E many times, both as patient and accompanying others, so I already knew that getting treated was going to involve a fair amount of waiting around. This is why I chose to go to A&E unaccompanied.

In the past I’ve been on edge the whole time, waiting for each step in the process. This time I was determined to change this. I decided to set my own “target” times at the end of each step for the next one to start. That way I could settle down to my book and would not need to be constantly looking at the clock. If the next step started before my target, then it was a result, and if it hadn’t started then it was time to go and ask someone what was happening.

I knew that my first concern would be to find out what was causing the problem and what the solution was, but coming a very close second would be getting discharged as soon as possible.

It was the first time I had been in A&E since setting up a Twitter account and I decided that Tweeting would be a great way of recording my progress through the system and giving praise (or brickbats) as required.

HOW WAS THE EXPERIENCE FROM A PATIENT’S POV?

It all started very positively. The first blood tests were back promptly. The subsequent wait for two hours was bearable. When I was taken to the Clinical Decision Unit at 18:00 I had resigned myself to staying in overnight ready for a test in the morning.

It was when the A&E Registrar came back an hour later and said I would be seen by a consultant and could be going home that night that I started to feel unsettled. He was doing his best to keep me informed with his best information but now I was up against a finite time frame as I wouldn’t want to be told at 23:00 “OK, you can now go home”.

Despite the best efforts of the nurse it was not until 22:52 that I was finally told that I would not be seen that night. Tweeting turned out to be a great way of relieving tension and I saw no issues in “live tweeting” the situation. Others may disagree?

My new expectation would be to see the Consultant the following morning so you can imagine my frustration as having seen nobody by 12:00 and then to be told that “due to a communication problem” I had not been seen the previous evening. It was another 20 minutes  when a junior doctor appeared, no doubt prompted by the nurse’s bleep. Up until that point it felt like the CDU was just an area where a patient could put and then forgotten about by the doctors.

At this point I could have become very wound up but decided to leave it until I had been there 24 hours from admission. At that point I still hadn’t seen a consultant and I felt it really was time to escalate my situation.  It must have worked. In the meantime I dashed off a few more Tweets and started to think about the implications of self-discharge. From then on we seemed to be back on track and things happened in a timely manner.

WHAT CAN THE SYSTEM LEARN?

Communication. Communication. Communication.

How many times is this held up as the main complaint of users across a broad range of services. Visiting A&E is a stressful experience for all participants. If that stress can be minimised then it must be best for everyone.

Maybe the Consultant was particularly busy on the Monday night. I was hardly a priority case, but a simple message to the CDU asking a nurse to explain would have relieved the situation. The same again the following morning. A message saying that the doctor was running late but assuring me I hadn’t been forgotten would have made all the difference. Instead it was down to me to keep chasing at the relevant juncture.

#HAWMC – Day 20 – Highlight

day_20If I’d written this three months ago I would have either used a slightly nebulous highlight – “managing my health, work and lifestyle so that they work in harmony” (most of the time) or I might have said “writing a book”.

However, in September, I had a new experience because of Crohn’s/IBD. (What follows is a slightly edited post from just after that event)

“Whatever else you can say about Crohn’s Disease it certainly does give you the chance of new experiences, mostly unpleasant, to be honest. I won’t list the nasty ones here as they are covered in the video at the end of this post.

A fellow IBD patient, or should that be sufferer, had been asked to to give a talk about “Living with IBD” to some nurses. Unfortunately she was double booked and asked if I would step in. With typical male arrogance and over confidenece I immediately agreed. The date was set for 5 weeks time.

It was actually something I’d wanted to do for a while. I suppose it reawoke the “performing” instinct that first showed itself when I was  in a band. That was around the time I was diagnosed with Crohn’s.

mav_lak_2
That’s me on the left – The Lakers, Redhill

GETTING READY

I wouldn’t need any preparation. I’d lived with IBD long enough to write a book (literally). I would just turn up and talk, or so I thought. The last thing I wanted was to read from a script.

At this point I found out that there would be around 200 nurses, in a proper lecture theatre and  I would be talking at the end of the afternoon. It dawned on me that to do the subject justice, and not short change the nurses, I would at least need some notes and something to keep everyone awake. Where’s that mind map software?

mind_mapI was rather staggered by the sheer number of topics I came up with. After much arranging and re-arranging I wrote them down as a series of headings and bullet points. That would do. I tried a run through. TERRIBLE. I stumbled over the words to flesh out each point. I would have to give in and write out some notes.

Another run through and nearly as bad  – stilted, hesitant, repetitive…..  I would have to give in and write the talk out word-for-word, the very thing I didn’t want to do.

Having just written a book (100,000 words) using iBooksAuthor software I decided it was the right tool  for this new task.  There is one particular feature that is indispensible – the option which allows you to take your text, convert it to speech and then save as an mp3 file for listening to on an iPod. Why this extra step?

I find that no matter how often I read text through, either on screen or in printed form, it is very difficult to pick up words that have been repeated too often or where simply by changing the structure of a sentence it makes a far better read. Listening to the text several times also gives you a chance to start taking it on board and makes one’s delivery more polished.

Here’s an example as an mp3. Not marvellous but good enough to run through the words without being distracted by the text on the screen. It shows how easy it is too identify a missing word.

After several further iterations, including two read throughs to my wife, I was finally happy with the contents.

Now it was time to remember all those tips I picked up on the various corporate presentation courses I had been sent on – move around the stage, make eye contact with all parts of your audience, generate some audience participation by asking THEM questions, communicate with passion and finally include a surprise.

THE BIG DAY

When I got to the lecture theatre, with a real live audience, it suddenly became a lot easier. I did use my text but just as a “confidence safety net” and to make sure I didn’t forget anything (which I still did). I had taken a small camera with me but unfortunately didn’t get there in time to set it up properly so the sound wasn’t brilliant.

The resulting video was rather long all in one go so I’ve split it into three parts. Of the three I think that the second one covering surgery and stomas is the most representative. I’ll let you judge the result.”

Kings College Hospital, Lecture Theatre

I wasn’t expecting that round of applause for my stoma stunt!

This has to be my Health Activist highlight as it was the first time I had spoken in public and gave me a chance to give an insight into IBD to the nurses who will end up looking after patients, some of which will have IBD. It’s whetted my appetite to take it further. I rather fancy talking to some consultants and doctors next.