Archive | September, 2016

Read my notes…please?

20 Sep

by Max Scott

Part seven of the series ‘The desperate fight to be heard, and supported, when living with the invisible struggles of Multimorbidity’

Introduction to the blog series is here.

medical-record_cropped

In my last blog, called “Keep taking the tablets: part one”, I tried to explain some of the difficulties I have faced in having to take multiple medications. Part Two will be based on the difficulties faced by medical professionals when having to treat such a complex patient as myself, without any training in multimorbidity it seems.

But for now, here is a perfect example, and my latest experience, of the main theme of all my blogs: Getting others to listen to, and trust what you say as the patient.

A few months ago, I was in hospital for an operation on my leg. It was a hospital that I had not been to before, that specialised in the treatment I was due to have. The staff were excellent. One doctor, seeing the comprehensive notes I had typed up, as usual before I have a hospital admission, said they ‘were excellent’ and ‘so helpful’. It really lifted my morale because I had been laid up in there for over a week. But, as we know from my previous posts, it only takes one. That person arrived in the form of a physiotherapist. Here is an excerpt of the complaint letter I wrote to the hospital:

“It was the afternoon, sometime beyond 2pm I think, and I had just drifted off to sleep…when one of the physios arrived at my bedside. She wanted me to get up and do the “stair test”. I explained that I had just gone off to sleep. “Oh I’ll come back in a while, when you’ve had your downtime”, I believe she said. I explained to her that it was not like that; [because of my other conditions] I was likely to be asleep for around two hours, and that when I woke up, my mind would be very disorientated for quite a while. She did not accept this, clearly had no interest in my overall health, was argumentative, dismissive, insulting, and sarcastic.

The physio was clearly put out: “Well what do you do in the afternoon at home if you want to go to the toilet?” (Immediately, I knew she was trying to catch me out; neither pleasant or professional) I told her “I am in such a deep sleep in the afternoon that wouldn’t happen”. As I realised that I was, in fact, being challenged, I thought back to the support of the Doctor I mentioned earlier. I said that the Doctor had spoken to me, had read my details, and had made clear that I would be given time to get well enough to go home. I told her that he had said it would be possibly Monday but probably Tuesday that I would be going home, she did a dismissive laugh and said “Oh no, it doesn’t work like that…we hardly ever listen to the doctors anyway”. I was really shocked by that last comment. “Who was this Doctor, anyway?”, she continued, looking at me with more and more disdain as I lay there feeling awful in my hospital bed because my brain was desperately telling me I needed to sleep. I told her I couldn’t remember his name. Around this stage she went away to talk to somebody (no idea who, but there was certainly no apology when she got back). Having returned, she said that the porter would come for me around five o’clock to take me and a physio to do the stair test. This was then my turn to make clear that it didn’t work like that. I told her that I would try my best, but I may still be too woozy to do the test. “Well he will just have to go away again, won’t he?”, she snapped. I actually remarked to her at this stage that she was getting cross with me. She somehow, of course, denied it. I pointed to the notes I had typed that had been such a help to many during my stay, she briefly picked them up, had a quick look…but did not read them. I have been underlining the word “read”, because it makes such a difference if my notes are actually read properly; I have worked hard on them, so as to explain all. What really did it for me, though, was one of the next comments. “Some physios would be even stricter than me” she said, or words to that effect. I’d naturally had enough by then, feeling appalling, having a nurse with me trying to check my health, and having my integrity brought into question. I verbally let out my despair to her, saying the following: “What good would it be for a strict physio, or anybody, to demand that I try to walk up and down a set of stairs while part of my brain is wishing to close down?”. I would think that at least half the ward heard me, and she left soon after. I am not a person who goes around picking faults where my care is concerned, but I knew that the way I was treated and spoken to on that day in your ward, so soon after surgery, feeling so unwell – I was also being treated for low oxygen levels at that stage – should in no way go unreported.”

The “incident” is now being investigated. The fact that the physiotherapist had no interest in reading my medical notes speaks for itself…a multimorbidity patient has to be treated as a whole, otherwise there could be danger to the patient. I believe this MUST be enforced, as soon as possible.

The title of the re-introduction to my blog posts in a Greater Manchester PSTRC newsletter was “Trust Me, I’m a Patient!”. It seems this is still not happening, at least in a great many cases, and of course this can be pivotal to the overall health of those patients by their wishes going unheeded. My experience is a perfect example. As a result, I felt very unwell because my sleep had been interrupted, I was upset and angry at being treated like a hypochondriac, and, of particular relevance to these blogs, it felt soul destroying – not only do we have no specialist multimorbidity care, but even when one takes the trouble to write information to guide the medical professionals, some, like the example above, cannot be bothered to read it.

I have since been treated for a relapse of my clinical depression. Who knows what part in that was played by the physiotherapists attitude…and, what’s more, how many other patients with similar problems experience the same kind of thing, but, unlike me, do not get the chance to talk about, and share, their experiences, forcing them to perhaps either bottle it up, or give up even mentioning their invisible conditions, all this to the detriment of their health…just because there are medical professionals out there who will not believe, trust…

and LISTEN?