Some of you may remember back in July when I posted an update regarding the ongoing saga of my wheelchair’s seat and my back pain. In that update, I shared that I had an appointment booked provisionally for September to look at my seating, provisionally of course given everything going on with the pandemic. Well, that appointment did actually go ahead today…

It didn’t get off to the best of starts – the letter I received said my appointment was at 10:40, but enquiring with the receptionist and they had me down for 1:15? No idea what happened there, but I didn’t receive word of that (as has previously happened – I’ve had appointments cancelled without my knowledge), but thankfully there was a cancellation and they saw me.

One of the things I hate most about living with my disability is the fact that the support system and how we go about accessing what we need is so disjointed – just in my case with the seating/pain I’ve dealt with my GP (with very mixed success!), the folks here at the wheelchair/specialist seating service, and had input from occupational therapists (OT) and the neurology team. Both the first and the latter have always pushed for a referal to the wheelchair centre and so, that has happened. Back in July, the specialist at the wheelchair centre had advised me to contact the OT’s regarding a new sling – I did and they advised me that they couldn’t come out to see me until I had my new seating.

Back to today then, the specialist seemed rather irritated when I had informed her of this, and eventually said that she was going to write a (and I quote) “very strongly worded letter” to my GP given that we “seem to be shouldering the responsibility”. She says I need a combo of a new wheelchair seat, different meds that will address my problematic muscle tone, and a new seat that I can use to encourage me to take breaks from my wheelchair (they are still very unhappy with the amount of time I spend in my wheelchair every day). Now, I don’t disagree with any of her points, but I couldn’t help feeling really troubled and like I was the problem – it’s not our fault that the agencies involved in our care don’t communicate as well as they should – I’m just the messenger and doing what my doctor told me to do and going to my appointment!

Anywho, I’ve been moulded for a new seat, which is going to be a much more snug fit than my previous one – I’m told this will make jackets/coats problematic as my movement will be restricted so if anybody out there with similar issues/experience on dealing with this or finding suitable fashion, please let me know. In an unexpected twist, I’m getting a whole new wheelchair as well as the seat as they decided whilst moulding me that at almost 4, my chair is getting on. I’m chuffed as my new one will have better suspension, a godsend with Bristol’s uneven pavements.

I’m completely drained as we were there for almost 4 hours (appointments are meant to be 90 mins), but I should have my new wheelchair in six weeks. Then, another battle for new meds & new sling… but got to celebrate the small victories, eh?