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)