Category Archives: outpatient appointments

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

 

 

 

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.

My blog is in remission…..

19th May – IBD Awareness Day – and my blog is in a sort of remission. It’s not cured as we all know there is no cure for blogging. Achieving the next big milestone of 50k hits may prove difficult if it goes into deep remission although the steady stream of Russian porn site spiders searching for “anaesthetic fetish” stories (yes, honestly!) may help get there.

The days of weekly, sometimes daily, updates seem like a distant memory. Clusters of outpatient appointments and procedures have been thinned out to 6 monthly intervals. The next scoping session will be  late October and there maybe a colonoscopy just before Christmas.

How does this make me feel? Mixed emotions oddly enough. I am obviously pleased to have reached some stability healthwise but I’ve grown so used to having to think about medical matters, given 2 or 3 years of intense medical activity, that it feels strange to have more time to devote to other aspects of life. Producing this blog has greatly helped me to get my health issues into perspective and the very regular appointments/procedures have proved to be a rich source for writing posts. This blog was set up for the specific purpose of recording “the rich vein of experiences along the Crohn’s highway and some of its detours.” I’m hoping that some of the content might just strike a chord with other Crohn’s sufferers and they will realise others understand what they are going through or maybe give them some warning of what could lie ahead.

My health related creative efforts have now been redirected into writing a book based on this blog. It’s nearing completion which, as my wife would point out, is the status of most things I start. (Anyone familiar with the Belbin Theory will understand the problem – low score in the Completer/Finisher category)

I still have some health concerns. The diagnosis of severe Bile Acid Malabsorption late last year has given a name to, and a reason for, the continuing dashes to the bathroom. Now I have this explanation I can visualise what the problem is, what is likely to exacerbate it and what can be done to manage it. I’ve become strangely relaxed about the issue.

My other health concern is keeping fit. Statistics show that if you’ve already had surgery for Crohn’s it is likely that you will end up under the knife again. The speed at which you recover is, in part, helped by being fit and up to weight at the time of the operation. My first operation was 1979, the second 2010 – a 31 year gap – who knows when it will happen again but I want to be as prepared as possible. My chosen regime is to walk whenever possible. I’m trying not to become too obsessive about the distance I walk each day but it does feel good when the app on my phone announces “All-Time Record” (currently 17.6 km).

17km
A days walking – from the Moves App

The impetus to keep walking is helped considerably by working in London. There are so many possible routes to get to and from work that it never becomes routine or boring. There is always something new to see and photograph. At 7:00am there are very few people about. I’ve set myself a challenge of posting at least one Instagram photo a day (account name = crohnoid) with either a new angle of an existing view or something transitory or a new experience.

Having rambled on so long it’s time for another appointment……………

Tuesday 5th May 2015 – Gastroenterology – St.Thomas’ Outpatient’s Clinic

The forecast said 50 mph winds and I could vouch for that. Crossing Westminster Bridge was “interesting” and made more so by the polar bear halfway across. I think it was the continuation of the PR stunt for SkyTV.

Bear
The Sky TV polar bear

This was to be a routine, six monthly appointment. I had prepared a short list of questions to ask.The visit started as normal. Get weighed. Wait. Go to Room 18 – see Registrar. Explain that I would like to see usual consultant for the sake of continuity. Return to waiting area. Wait for new message to appear on laser display screen. Go to Room 19. (Appointment time 2:50pm, in with the “right” doctor by 3:20pm. Not bad).

I knocked on the door, list at the ready, and entered. I got a warm welcome from my usual doctor who had a medical student sitting in with him.  My notes were on the desk. The file was so thick it looked like it couldn’t take one more sheet. “We need to get a new one of these”. I replied that I might just have the solution as I had written a book covering my medical history and experiences including the treatment at St.Thomas’. He seemed genuinely surprised. I assured him it was for real and that I was currently going through the final stages of editing and proof reading. I reassured him that he wasn’t mentioned by name and that it was all positive anyway!

That prompted a discussion on doctor/patient communication and how patients react to what they are told. He considered himself to be a good communicator (I’ll second that) but was concerned that without him realising it a seemly innocuous remark, made in passing, could take on far more significance to a patient. We then went on to discuss when and where it is appropriate to tell patient potential bad news. I mentioned that there were two things I wish I had been told about prior to surgery, and that they were on my list…….

1) I had been quite tired over the last couple of months and even the B12 injection three weeks ago didn’t seem to have made a difference. He suggested that next time I had a blood test I should get checked for iron and vitamin D levels. I did mention that last week I had walked nearly 50km to and from work and at lunchtime, so maybe I should be cutting back a little. That lead off at a tangent to the merits of exploring London early in the morning, or on a Sunday, when the streets were quite deserted. I couldn’t resist mentioning the Sky Garden (at the top of the WalkieTalkie building) that we had visited a few weeks ago. (There are a few photos at the bottom of the post).

2) As ever the ache around my anastomosis (join) comes and goes. It was worse after physical work or with a full gut. We had previously agreed it was probably just a mechnical issue as the recent colonoscopy had shown no sign of inflammation. He wondered if there might be some inflammation in a part of my small intestine that neither the colonoscopy or the previous endoscopy had reached. There was a technique, called a balloon assisted enteroscopy, that allowed the scope to propel itself right through the small bowel…….that’s enough thinking about that one. I asked if a capsule endoscopy would be better but he replied the disadvantage for some patients was the possibility of the capsule becoming stuck if there was a stricture along its path.

Maybe it was time for another MRI scan as the last one was three years ago. He recalled that it had suggested inflammation but the subsequent colonoscopy had shown nothing. He said that sometimes you could get conflicting messages with no explanation as to why the difference.

3) The plan going forward. The current monitoring regime consisted of six monthly calprotectin tests (with possibility of a colonoscopy if high reading), yearly upper GI endoscopies to check for growth of esophageal varices and six monthly appointments with haematology to keep an eye on my low platelet count/PVT. Were there any other tests I should be having that might be age related? “No.”

He set the next appointment or six months but I will fine tune the actual date, nearer the time, so that it is after the annual endoscopy. It will also be down to me to make sure the results of the calprotectin test are available.

4) BAM. I’m becoming increasingly convinced that Bile Acid Malabsorption is a subject that not enough patients, who have been through IBD surgery (ileal resection), know sufficient about. This was one of the two subjects I wish had been discussed prior to surgery.  It could be part of the pre-op assessment with either the Enhanced Recovery Nurse or the surgeon.

BAM BAM
Bile Acid Malabsorption

The other thing I wish I’d been warned about was ileus, or the lockdown of the digestive system, following surgery. I explained that unless you have suffered intense nausea you have no idea how bad you can feel. I wasn’t joking when I said that it was a good thing the windows on the 11th floor surgical ward at St.Thomas’ were non-opening. I really would have jumped! Both of them looked surprised.

5) This one was more out of curiosity – is there a link between shingles and having an IBD flare-up? In preparing my book, I had found a reference to the bad attack of shingles I suffered in 2005. As I read on I realised that a flare-up started shortly afterwards, breaking the remission I had been in for quite a while. He wasn’t aware of any link, in his experience, but there were common factors such as stress that might cause a trigger.

6) Getting involved. I’ve been cutting back on work recently. For the last six months I’ve only working three days most weeks. Whilst I have plenty to keep me occupied in my spare time I felt I could at least use part of it to give something back to the IBD Community but wasn’t sure how I could help. He ran through a number of ideas that they had been discussing at Guy’s/St.Thomas’ – research, patient panels – where they would like to include “lay” representatives. I asked him to bear me in mind for such an opportunity.

Appointment over and a chance to brave the high winds again. By now they had died down a little and the sun was shining so I decided to take a slight detour on my route back to Victoria and walk down the Albert Embankment. It’s not a walk I often do but will certainly repeat it.

Bride
A popular location for oriental pre-wedding photos
Film Crew
Film crew reporting on Election 2015
Lambeth
View from Lambeth Bridge, looking East

If all goes to plan the next post should be to announce the completion of my book. Still need a decent title though. Suggestions welcome.

Sky Garden  – photos

Shard
View of The Shard from the SkyGarden
Westminster
View up the River Thames towards Westminster
Gherkin
The Gherkin from the Walkie Talkie
St.Paul's
View of St.Paul’s Cathedral

 

What should we expect as NHS patients?

Starting with a blank piece of paper I put down the most important things I require and, where applicable, what I consider to be acceptable timescales. I concentrated on my needs as a hospital outpatient with a chronic illness/multiple chronic conditions because this is a situation of which I have recent, first hand knowledge. (I’ve excluded GP’s, as I very rarely see them, and I’m hoping that hospital stays are few and far between).

Before reading the list below you might like to have a go yourself and then see where we agree or what additional items you’ve come up with. I’ve ended up with 12 key items. Here they are, in no particular order :

  1. Easy to book appointments/tests/procedures and carried out within a reasonable or appropriate time frame (4 weeks)
  2. Consultants that make you feel welcome and are prepared to spend sufficient time to answer your questions
  3. Consultants who communicate at the appropriate level of detail. (Communication includes the ability to listen and “hear” what is being said)
  4. Consultants who take joint decisions with the patient. (You are the expert in YOUR health, they are the experts in their chosen fields and provide the knowledge to inform decisions)
  5. Good co-ordination between multiple consultants if more than one condition is being managed and a named lead consultant
  6. Ability to make suggestions to / ask questions of / get responses from consultants by email
  7. Follow-up letters sent out promptly
  8. Test results communicated promptly (or appointments organised to go through results as soon as they are available)
  9. Appointments that start on time or if they are delayed good communication as to why they are running late and the likely delay
  10. Provision of a disease/condition specific help line with prompt response time (within 24 hours)
  11. Routine appointments over the ‘phone or by Skype (to save on hospital trips and consultant’s time)
  12. Electronic, transferable, whole life health records with electronic patient access

11) and 12) are more long term aims and probably the remit of the NHS as a whole rather than an individual hospital. If there are any blindingly obvious omissions please let me know. You can tweet me at @crohnoid

My original list (now slightly modified)

…and how does my treatment measure up?

St.Thomas’ new Outpatients’ Department

Having established the list (and the two aspirations) I thought I’d see how my current treatment measures up against each of them.

1) Appointments are easy to book either on the ‘phone or in person. Not all departments are consistent in their approach to routine, six monthly appointments. Some give you the appointment letter there and then; others won’t book further than six weeks ahead so I always make a note in my calendar of when I need to make sure I’m on the six week radar. So far (in three years) I haven’t had any problems. The longest wait of all was getting a slot to see the Dietician – but I was warned that the demand on that Department is particularly heavy and, for me, it’s not exactly a matter of life and death.

2), 3) and 4) The communication with the various consultants has always been excellent. I’ve never felt I’m being hurried out the door. We always have a full and frank discussion at a level of detail I can cope with.

5) Co-ordination works well. Letters and emails are always copied between the three main consultants and there is a MDM (Multi Disciplinary Meeting) were patients with multiple conditions are discussed.

6) I’ve always received prompt responses to my emails. If I have a question that I think may have implications across disciplines then I copy it accordingly.

7) I did have one particular issue with follow-up letters from one particular department but a simple email to the Head of Department sorted that out. It’s all resolved now and we’re back on track.

8) OK so far.

9) Mostly pretty good. My last Haematology appointment started 15 minutes early! There have been occasions where the clinics are running late but nobody kept the patient patients informed. The new Outpatients Dept. at St.Thomas’ has large screens all around the waiting area and these carry messages if any clinics are running more than 30 minutes late.

10) I’ve only had reason to contact the IBD and Stoma helplines. Both have replied very quickly. When I had a problem with my stoma I was able to go and see one of the nurses that lunchtime.

11) This is more an aspiration than something I think will happen in the very near future. I don’t know at what level the decision can be taken to implement it – individual consultant; Department; Hospital Trust; or from the NHS on high.

12) I thought this was going to happen a few years back but the plan faltered rather badly (NHSIT Project). The system works within the Guys/St.Thomas’ (GSTT) itself but they do not have access to my previous records. I’ve taken it upon myself to collate this information but don’t know if there is any opportunity for getting the key records added to my GSTT file. (Something to ask at my next appointment)

Conclusion

I’m very impressed with the treatment I receive from the NHS at GSTT. If I had to give them a score, judged on the first ten items, it would be 9 out of 10. I have had the odd hiccup along the way but by taking an active role in managing my treatment they have quickly been sorted out and never caused a problem.