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.
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.
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.
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.”
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.
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.
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.
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.
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.
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.
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.