Category Archives: Active Patient

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. It then dawned on me that it would a great way of showing a new doctor or surgeon the complexity of the case on just a single page.

I attached it to a Tweet during a recent #patientchat to illustrate how I like to communicate. The very positive response that I received from both patients and doctors was very gratifying. There were a number of requests for the template I used. I have therefore removed the text that was specific to my case and saved the file in both the original Keynote format and a Powerpoint format.

If you click on the links below you will be able to download the appropriate file. Please feel free to use them however you wish. I hope you find it useful and would be grateful if you could credit me if you use it.

Medical Jigsaw – Keynote Template

Medical Jigsaw – PPT Template

…and then someone set me the challenge of making an interactive version. The link below will take you to an html version. When you click on one of the key elements it brings up the relevant supporting document. It’s not difficult to set up. The most time consumng part was removing personal details from the documents.

http://www.wrestlingtheoctopus.com/jigsawIA/

Good Doctor, Exceptional Doctor

A few weeks ago the BMJ blog published a guest post written by Sharon Roman, an MS patient. The subject : “What are the qualities that make for a good doctor and what can patients do if they’re missing?” (Link to blog at the bottom of this page)

It struck a chord as, over a period of 40 years, I have met a large number of doctors, consultants and even a few surgeons. Some have been good; some bad; some exceptional; some would be better off in research roles. I would put my current gastro in the exceptional category, especially if he is reading this just before performing a colonoscopy on me. But, in all honesty, there is nobody else I would rather have sticking a camera where the sun don’t shine. He can handle bends better than Lewis Hamilton.

One of the qualities that Sharon highlighted was the sense of safety that a good doctor gives the patient. It’s not something I had really thought about, not consciously at least, but I now realise that the feeling does underpin the best consultations and helps encourage open discussion. In a safe environment you tend to open up.

I’ve thought long and hard about the qualities which I believe elevates a good doctor to an exceptional one and this is at the top of my list. If pushed to sum it up in a single word it would be “adaptability” but it needs more explanation :

The ability to read body language and “language” language, if that makes sense. That’s picking up the messages in a patient’s demeanour and the words they use and then adapt how the consultation is structured.  Carefully choosing the words or medical terms that get used and ensuring the patient understands them. Definitely not sticking to a “one style fits all” approach or spending the whole appointment staring at notes on a computer screen.

(That got me wondering what training is given in “people skills”? I accept there will be the “naturals” who already have an inherent ability to adapt their consultation style but what of the others who have that innate skill in varying degrees. Are particular medical students steered towards research rather than patient facing roles?

..and then off on another tangent – do doctors have their own categories for us patients and how quickly do they decide which we are? How are we classified – hypocondriac?; realist?; fatalist?; verbal diarrhoearist; “would be medical expert” trained by Dr.Google?)

Half way through her post Sharon voices her fear that the exceptional doctors will become burnt out, victims of their own success. It’s a subject I have discussed with my own consultant as temporary referrals from other hospitals inevitably choose to become permanent patients and his department’s workload is ever increasing with static resource levels.

Shortly after reading her post I happened to hear an interview on the radio (BBC Radio 5 – Pienaar’s Politics) with an eminent surgeon who had become so stressed and disillusioned by the pressures within the NHS that he has left the profession and now bakes waffles in SW19. As he said “you only get one shot at this life”.

If we turn the question on its head – “What are the qualities that make for a good patient or an exceptional one?” There are the obvious – “takes their medication”,  “turns up to appointments” but are there other behaviours we can adopt that will ease the pressure on doctors’ time and resources? Maybe this would be a good subject for a future #patientchat.

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

Medical Records

This post has been prompted by the topics for #patientchat discussion on Twitter, “Medical Records” (#Tweetchat – Friday 4th August 2017 13:00 EST 18:00 BST).

I have touched on this subject before but it’s always worth revisiting. These are my experiences within three UK NHS Hospital Trusts and span 40 years.

These are the topics set for the #patientchat discussion

T1: Do you have access to your Electronic Health Records (EHRs)? If so, does that info help you actively share in your healthcare decision making?

T2: What are benefits to patients being able to view the notes that doctors, nurses and other clinicians write after a visit?

T3a: Do you sometimes find the amount and type of info available in your EHRs overwhelming and/or incomprehensible?

T3b: If so, what are some ways to make it easier to decipher and use in your decision making?

T4: What are your tips for keeping your healthcare records organized? Do you use any resources?

T5: Is it important to request past medical records from your doctors and keep copies for yourself?

T6: What do you think some of the barriers are to implementing EHRs? How can we work together to overcome them?

Ideal World vs. Reality

In an ideal world each of us would have our full medical record available in a universally readable format that could be easily accessed by any medical professional that is treating us.

Now let’s look at the real world. If you are a relatively new patient who hasn’t moved hospital and not had an in-patient stay then you may indeed have a complete record, held electronically, on an IT system. If, however, you are a long term patient who has moved between GPs and hospitals and spent time as an in-patient then the situation is far more complicated. You are likely to have a mixture of hand written notes and observations, type written letters and, more recently, computer generated letters and test reults. There are also x-rays and scans to consider.

The above does not address the issue of universal access. The last attempt in the UK to implement a system was NpFIT (The National Programme for IT in the NHS), a project initiated by the Labour government in 2002 and cancelled some years later having spent in the region of £12bn and having delivered nothing. Government backed IT projects are notorious for being disaster areas.

Patient Rights

Where does that leave the patient?

In the UK you have a right to access your medical records. Since 2000 I have received copies of the follow-up letters from outpatient appointments  that the consultant sends to my GP. This may be sufficient for your needs but I needed to fill in a lot of missing detail for the book I was writing. For the payment of a fee you can obtain copies of all your medical records . Requests forms are available online for each Healthcare Trust and as I had been treated by 3 different Trusts I filled in 3 different forms and sent them off with the relevant payments (between £20 and £50 depending upon whether you just require medical notes or want copies of x-rays and scans as well).

A series of packets duly arrived and I was amazed to find they really  did contain ALL my medical notes from October 1977 to the present. Two Trusts chose to send hard copies whilst the third had scanned the notes to a pdf file of over 700 pages. I also had loadable files for CT, MRI and US scans. The only things missing were certain early x-rays.

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 OsiriX which opens and views the files. (The Lite version of the software is available as a free download). Hours of fun looking at 3D visualisations of your innards.

What use are they?

What can you do with, potentially, a huge amount of very detailed medical notes? Whilst they might be of academic interest to the patient and provide a fascinating insight into how you arrived at your current state they are not a lot of use to your medical professionals due to the sheer bulk of the information. This is especially true if you are seeing a new consultant who needs a succinct overview of your medical history and current issues or if you end up in A&E (ER) where they need to start treatment as soon as possible.

It gets considerably more complex if you are suffering from multiple conditions. Initially I put together all the major events into a spreadsheet table. Going through the process certainly gave me a good grasp of my overall health and I have ended up a much better informed patient. This helps greatly when you need to take decisions about the course of future treatment. It helps clarify the most important issues.

If you are still find it difficult to work out how your health threads come together then draw a diagram. I’ve tried a number of different format. There are a couple of examples below :

In Practice

In February I ended up in our local A&E (ER) Department as I had turned yellow. The first person I saw was a triage nurse who asked lots of questions about health conditions, history  and medications. When we had finished running through the various ailments she complimented me on my knowledge. (Definitely a result of researching and tabulating my health records)

Next I saw an A&E Registrar. Who asked the same questions but what would he have concluded if I hadn’t been able to fill in the details? He would have been confronted with a patient with a large scar up the midline and an appendectomy incision. He wouldn’t have been aware why the large scar was there and would have assumed my appendix had been taken out. He would be unaware that I had Crohn’s disease, that there were additional veins growing in my esophagus (varices), that my spleen was enarged or that my platelet count was around 60. Valuable time could have been lost trying to investigate the wrong problems.

Do It Yourself

As a result of my A&E visit I wondered – is there was a standard, minimum set of data that should be available? Is there a standard format for the data? I searched the internet and could find nothing. I suppose a good starting point would be the questions the triage nurse had asked – personal details; current medication; current medical conditions; and any known allergies.

There are, of course, the likes of SOS Talisman bracelets which have some very basic information engraved on, or contained within, them. There are several subscription services which will hold your medical information and can then be accessed via a unique code you wear on a bracelet or dog tag, but these appear to be US based only and the data held was not in sufficient detail.  How feasible would it be to produce a standalone, wearable device?

I had a go at making one using a USB bracelet. I settled upon two top level documents – i) a simple, overall summary plus ii) a detailed table that recorded each appointment or procedure. These documents are stored as pdf files and linked to various back-up documents such as laboratory or histological reports.
I

USB Bracelet

There is one problem. Security. Does an NHS computer allow the reading of an external USB stick or is access restricted to protect from viruses etc? (Particulary relevant since the recent cyber attack). I have a feeling this is a non-runner so I’m favouring storing the files on a secure server and potentially accessing them via a QR code on a dog tag (or even a wrist tattoo)

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.

Managing Consultants and Appointments

What follows is based on my experience being treated by the UK NHS as both an in-patient and an outpatient, mainly with gastroenterologists but more recently haematologists and hepatologists as well. The dynamics described may be different where you are funding your healthcare privately and paying a consultant directly or via an insurance company.

If this post seems rather analytical and cold, with few emotional considerations, it is because I have found this “matter of fact” approach has made the Crohn’s, other minor annoyances such as PVT, potential PSC, BAM, hospital stays and consultants, a lot easier to deal with.

I thought long and hard about how I could encapsulate my attitude in the length of a Tweet and came up with this :

I AM THE EXPERT IN MY HEALTH

MY CONSULTANT IS THE EXPERT IN MY CONDITION

For old hands at the “health game” most of this will probably seem blindingly obvious so it’s aimed at newer patients, ones that become tongue tied in front of their consultant or that find appointments difficult to handle.

1)  Making Lists – Definitely in the “blindingly obvious” category. This has to be the best thing I’ve ever started doing. I used to go into the consulting room with the attitude “of course I’ll remember all the things I want to ask.” It was a male arrogance thing. I’d then arrive home and my wife would say “and what about x?” Blank stare. “Why didn’t you write a list?” Another blank stare. This went on for many years (male arrogance is a long term condition) until the penny finally dropped. Nowadays I start preparing a list several days before the appointment date. (The one shown below was compiled in preparation for seeing the haematologist prior to weighing up the advantages/disadvantages of starting Warfarin).

 

Once you’ve written it out talk it through with someone close to you as they may have spotted things in your appearance or behaviour that they are concerned about but “didn’t like to mention” or didn’t think were significant.

Nowadays, I print out the list and make a point of having it in my hand as I enter the consulting room and after the initial pleasantries explain that there are a number of questions I want to get answered and point to the list. This sets the scene for what follows i.e. don’t expect to finish this consultation until we’ve been through it all.

It is worth noting down the answers, although these should be covered in the follow-up letter that you get sent a few days later. (Or rather SHOULD be sent –  more about that further on). Another advantage of having a paper list is that if you print it, or write it out nice and legibly, and then become emotional or tongue tied you can hand it over and let the doctor work their way through it.

2)  Manage Your Appointments – This may or may not be necessary depending upon how your hospital works. I get treated by two different departments in the same hospital. One of them will make the next appointment for you there and then so that you leave the hospital with the appointment letter in your hand. The other department says they will contact you closer to the time but there is always that doubt at the back of my mind that the request will get lost somewhere in the system and by the time I realise there’s a problem the appointment gets delayed.

Nowadays I set a reminder in my calendar, two months before the appointment is due, to contact the consultant’s secretary just to remind them and that does the trick. Two months is the right length of time for me but it may differ in your area. For Guys and St.Thomas’ (GSTT) it’s usually between 3 and 6 weeks to get an appointment with a particular consultant or to book up for a procedure such as an endoscopy.

3) Continuity – Generally I like to see the same consultant each time so there is continuity in approach and it is not necessary for them to go through my whole medical history before starting the consultation. I didn’t used to question it when I was seen by different registrars or junior doctors but as my health worsened I really felt it could become a matter of life or death (maybe slightly over dramatic!) that I saw the person with the most experience/expertise and who understood my case.

The best way to approach this is to tell the nurse that weighs you that you need to see a particular consultant and they can then put a note to that effect on the front of your file or make sure your notes get put in the right pile. Occasionally it doesn’t work and you end up being called in by another doctor. At that point I politely explain that I’m not doubting their medical knowledge but I do need to see my usual doctor. This has always worked OK.

All the above goes out the window if I’m just having a routine, follow-up appointment where no important decisions need to be made. If that’s the case I’m happy to see any of the doctors. I do actually question whether this type of appointment has any value and would be quite happy to do it by email, Skype or even an old fashioned telephone call. The only advantage of the face-to-face contact that I can think of is the doctor being able to spot something of concern that you haven’t noticed or the ability to carry out a physical examination.

4) Medical History – important if you are seeing new doctors or consultants. If you’ve only been suffering from Crohn’s, or whatever disease you’ve got, for a short period then it’s likely that you can remember all the key dates and events that have brought you to this particular appointment.

If you’ve always been treated by the same hospital then your medical history should be available to any of the professionals treating you via their records system but if you’ve moved around between hospitals, health authorities and consultants then it is likely that there won’t be one single, unified set of records.

When moving to a new consultant and/or hospital, or if you are unfortunate to have been admitted to a new hospital as an emergency, possibly unconscious, then a brief outline of your history can save a lot of time in the early stages of working out what has gone wrong or which will be the best area to start investigations or treatment.

35yrs_MedRecs35 years of medical records

[For years I was always being asked when was my first Crohn’s operation and what exactly the surgeon did at that time. I knew it was an emergency admission to Croydon General Hospital sometime in 1979 (suspected appendicitis) and that it turned out to be a perforated bowel, but I couldn’t say whether any gut had been removed or if it had simply been repaired. It was only in 2011, when I obtained copies of all my medical records from Croydon Health Authority that I could finally give the definitive answer.

Since then I’ve painstakingly, some would say anally, extracted all the key points from consultation notes and follow-up letters and summarised the whole lot, in date order, onto a spreadsheet. This is my “back-up” evidence from which I have then drawn up a simple, one page chart representing my full Crohn’s history and a second, more detailed one, covering the last 6 years. My current set of consultants seem to approve of this approach and have put copies into my notes.

Click here to open pdf – “Health Record 1977 to 2015”

Click here to open pdf – “Health Record 2010 to 2016”

Unfortunately very few x-rays were still available but I consoled myself with a couple of more recent CT scans which I can view using Osiri-X Lite (available as a free download). I find them fascinating but my work colleagues are not quite so sure.]

Maybe a step too far! Scenes from CT scans on my ‘phone

5) Contacting your consultant between appointments – Some consultants are happy for you to email them directly when you have a query or a problem or there may be a dedicated, condition specific, helpline that you can use as the first point of contact. It really does seem to vary. I have read of other patient’s experiences where the “patient confidentiality card” is played to avoid email contact. I’ve never come up against this. So far so good. You should be able to work out an individual email address as organisations like to follow a particular format or you could simply ring up their secretary and ask for it straight out. Nowadays many hospital websites clearly display the consultants contact details.

This doesn’t come without some responsibility from the patient’s side. I make sure that I only contact the consultants directly if I have something that is urgent and only they can answer or they’ve asked me to report back about a problem. I was being treated by three different specialities during 2012/3 so I usually copied any emails to all three consultants as it helped to maintain the co-ordinated care.

It is worth keeping copies of the emails as I found out when I went to have a second bone marrow biopsy and the doctor performing the procedure was not aware that she needed to use a blood thinner to get usable samples (which is why the second biopsy was required). I was able to show her, on my phone, the email trail that explained it all after the previous biopsy.

6) Follow-up letters – shortly after an appointment or procedure your consultant should write a letter to your GP – secondary care provider to primary care provider. These letters are important to keep your GP up-to-date with your condition and a copy should also be sent to you, normally with a caveat that it is a communication between medical professionals.

This system of follow-up letters has always worked smoothly for me with gastroenterology and hepatology issuing them a couple of days after the appointment but then I came up against Haematology. The appointments were fine. Lots of good, open discussion but no follow-up letters. Four appointments and no follow-up letters. I did query this a number of times but still no letters, just apologies.

A few months on and guess what, still no follow-up letters. In the end I looked at my hospital’s website and found the name and email address of Haematology’s head of department. I contacted her, explaining the situation and suddenly I had four, retrospectively written, follow-up letters.

Are there lessons to be learned? I think so.

Lesson 1 – If you are not getting the service you should expect then go to the top and explain the problem. Will this always work? No, but might at least set the wheels in motion to getting a solution.

Lesson 2 – Keeping your own record of what gets discussed and agreed during a consultation is worthwhile if you end up in a similar situation to the above. I use a blog to record what goes on but if you don’t want to share your experiences with others then keep your own private health diary for future reference.

7)  Manage Your Appointments 2 – er, haven’t we already done this one? Yes, but this is managing how the actual appointment goes. I’ve left this one almost until the last as it’s fairly new territory for me. I hope to develop the theme in the future to reinforce the notion that the patient should actively manage how the appointment goes and make best use of the resources available i.e. your consultant’s experience and advice.

This train of thought was triggered by a visit to, yes you guessed, Haematology when things started to go very wrong. My usual consultant wasn’t available so I was being seen by a new doctor. The lack of follow-up letters meant that he started discussing a subject that had been “parked” a year previously.

At that point it struck me that going into the appointment I had a very clear idea of the outcome I was expecting and of the information/areas/risk factors we needed to discuss to arrive at a conclusion. (The decision was whether to start Warfarin or not). Clearly my issue wasn’t with the new doctor, as he had simply referred to the latest notes, so I asked to see the Head of Department. I knew this would never happen, but at least it had the effect of getting the appointment back on track with the appearance of one of the senior consultants who had been a party to reviewing my case at a recent MDM (multi-disciplinary meeting). I ended up with the decision I had been expecting.

I’m wondering if it would be worthwhile starting the next appointment by explaining where I want to be the end of the appointment and how I see us getting there. Would that be too pushy?

8) and finally – as always – keep a sense of humour if you can – useful in surviving ALL medical encounters but I accept this is not easy if you feel really terrible; you’ve been waiting an hour to be seen; the phlebotomist has made several attempts at finding a vein; that person who arrived after you has just been called in before you; etc. – I’m sure we’ve all been there.

Sometimes humour doesn’t work. A few of the doctors I have met do seem to have had a “humour bypass” (I’d just like to make it clear that this doesn’t apply to any of the fine doctors who are treating me at Guys and St.Thomas’, especially the ones that drive the endoscopes or biopsy needles). I have however been left in the situation in other, lesser establishments where my witty remark has gone down like a lead balloon and I’m left staring at a doctor who is clearly thinking “should he be in the psychiatric ward?”.

..and remember if you’ve been kept waiting longer than you were expecting it’s probably because your consultant has spent more time with preceding patients than the allotted 10 minutes. This works both ways. You may also need more than your ten minutes.