Tag Archives: NHS Follow-up Letters

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

The Importance of Follow-up Letters

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

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

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

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

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

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

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

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

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

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

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

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

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

Medical Record

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

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

The Trigger

In February 2017 I ended up in our local A&E (ER) Department as I had turned yellow. The first person I saw was a triage nurse who asked lots of questions about health conditions, history  and medication.

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

Do It Yourself

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

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

Attempt 1

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

USB Bracelet

There were two problems :

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

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

Back to the Drawing Board

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

Early version of “jigsaw” diagram

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

Basis of interactive medical record jigsaw

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

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

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

Future Developments

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

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