In another blog post (?which, link) I have written about the two week leg FES trial I had about month4/5 which was incredibly successful.

Fast forward a few months and upper limb FES had caught my eye, I got my nhs physio to refer me to the local centre who were only notable for their lack of action.

So with my sleuth hat on I found the upper limb FES devices they used were all manufactured and loaned/purchased from the national FES centre which, sadly, was located no where near me, but I could self refer and they might allocate a local,partner clinic, so I did and they did, coincidentally the local clinic was the same place I go for robotic therapy and private physio with physio A1 who after 2 sessions I already really rated and liked with instant rapport and respect there.

It was reassuring to know id be going to a clinic I knew and while the physio wouldn’t be A1, it surely must be someone else good.

I went in, very optimistic. When I’d used the leg device it changed my walking in 30 seconds and that allowed me to learn and progress hugely over 2 weeks; I expected a similar experience with upper limb, especially as recently there has been some small progress. Sadly it quickly proved to not be the case and while the physio had told me she had read the notes on file from A1, this proved to be untrue. I was answering, yet again the most basic questions about the layout and family members in my home, did I brush my own teeth? Did I eat? It felt like a regression of 9 months and I know A1 had asked these a couple of weeks before and I’d watched them type the responses, these were not relevant to the session, had been completed by my primary physios in the accute setting and played no relevance to this session. Thanks for wasting my time.

We then had a conversation about FES and my cardiac pacemaker and for the 3rd time since looking at upper limb FES I had to discuss the previous trial and that a letter existed from my cardiologist saying it was fine for me to use FES it had been tested with me and displayed zero impact on my pacemaker , the self referral had included the letter, A1 had a digital copy of it that had been put on file and I’d been asked to send it in again to the clinic a couple of days before the appointment I was now very sure the physio hadn’t read the notes, at all. They started many sentences with “obviously I’ve read the notes but I still need to ask” and repeated this enough times, it was very “I swear I’m not drunk,honest” then voms on your shoes it became notable that they were trying to hide they hadn’t; obviously you haven’t even bothered to read the letter we’re the words simmering in my mouth.

While using the FES and sometimes when not the physio would try and get my arm /hand doing certain movements then immediately stop because, quite often, my shoulder or chest will start a movement, because they do have some movement and it’s how my body has begun to compensate,The physio got quickly frustrated and exasperated“ben why are you moving your shoulder when I want your elbow to move?” I don’t know, hun, cos my arm is knackered due to a well documented accidental surgical error leading to a strokethat as a Neuro physio I’d expect you to be aware of how it works, I would currently love to reach my arm out, extend my hand and give you a really good slap*big exhale*

On the third time of her getting frustrated with me and then starting an insulting explanation of Neuro plasticity and having to learn stuff from scratch, I already know this and could likely teach them stuff at this point, I did lose my rag a little, “I’d like to move these things but just can’t because my body has been ruined”. I was angry and almost behaved worse, I was eyeing a mirror that could possibly take a strong kick but stopped myself from going any further, I think the look I gave was likely enough

I’d now decided I didn’t think upper limb FES was going to be the step I wanted and the physio was antagonistic, rude and hadn’t actually bothered to read the notes or was just lying combined with a poor attitude, I was mentally over the whole session and decided I’d just count down minutes to leave, which must have reflected in my body language as they then set off a barrage of unnecessary criticism about my posture, alignment in seating and even went as far as to blame my mental health for this No I was just completely checked out of the session due to your behaviour . The morning had been Frustrating and annoying. I’d been so optimistic heading in, I left genuinely gutted.

I reflected on it for a few hours while doing some work at home and then set about writing this post and also emailing A1 as I’m sure it would be discussed before I’d see them and I wanted to be open and honest.

I’m Chasing sunsets you can keep the clouds.

Cos ima stay in my lane

🎶Amir ekbitani- “in my lane” 2024