Sunday, July 04, 2010

'Are' Patient No Longer

Monday seemed to be a turning point after which the whole withdrawal thing started to ease off. GangstaGuy drove me to Leeds for my MRI scan in the afternoon and made the whole day possible. The scan only took about 20 minutes but the radiographer still had to ask me three times to try and keep still. I'd been expecting it to be much worse, but as GG had done the driving I was able to sedate myself before the scan started.

The good news is the scan showed my lumbar and sacral spine to be essentially normal-yeay! The not quite as good news is that the dodgy hip, pelvic and neck areas that I was concerned about weren't actually scanned at all. Fortunately I am used to the nonsensical doings of the NHS so was fairly unbothered. GG is not used to such illogicality and became quite indignant over the whole 'not seeing a doctor to get the results' part of events so I've opted not to break it to him yet that he drove for six hours and they scanned the wrong bits.

The builder saga is continuing so I had to sort something out about moving the scooter as it was still in the charity shop. The scooter has now gone to live at lovely carer's house until I can get access and storage sorted at my flat. It was about 2 miles from the charity shop to lovely carer's so on Thursday I rode the scooter there and GG drove his car 200 meter or so increments. He and lovely carer were quite concerned that I might get stranded with a flat battery and no mobile phone signal. It must've been fate, as I spotted another mobility scooter in a charity shop and GG's mum has just had her wheelchair stolen. For the second time. I mean, really, what kind of person steals a wheelchair?

While we were out I went to collect my prescriptions. I was initially resigned when they weren't ready, but the dislocated hip whilst we were stood waiting pushed me fairly quickly into a bit annoyed when it turned out my prescriptions weren't there. I blame the uniquely bendy 'oh god I'm about to fall over why the hell am I pirouetting' manouevre which nearly took out two people for the dislocated hip, as for who's responsible for what happened with the prescription I'm not sure. I use the repeat prescription service run by Boots. They'd gone to collect my prescription when I phoned to order it, but when they took it to my GP's they received a note informing them I was no longer a patient at that practice. Which was news to me. The girl serving said she had thought it very strange as the note read 'not are patient'.

So, I had to go to my GP practice. I was greeted by the evident author of the note who shrugged a few times, said he didn't know and looked a bit hopeless, but did manage to follow the had to be repeated three times instruction to phone the practice manager. The practice manager told me that my name had been on the list of patients leaving the practice sent by the nameless NHS bit that deals with such matters, and that, although several of the ladies who work in the practice had been adamant I wasn't leaving they'd had no choice but to parcel up my many, many volumes of notes and send them away. This was all happening late on Thursday afternoon and at the time I thought I didn't have enough medication to get through the weekend so was a tad stressed and sore. GG was certainly getting a crash course in the inner workings of the NHS. He seemed stuck on the point that sick and disabled people shouldn't have to deal with bureaucracy on top of actually being sick and disabled. He'll learn.

The Practice Manager said they'd sort out re-registering me as a patient, and to prevent any potential issues should I need NHS treatment whilst the paperwork is being sorted out, registered me as a new patient anyway. I still had no prescription, which needed to be collected and taken to the pharmacy late on friday which time I didn't have the spoons to do it. For a variety of reasons this kind of situation is common, so, with the kind of military planning familiar to all disabled people and carer's, I re-order my prescriptions several weeks in advance to avoid running out. Fortunately being so organised meant I had just enough medication to make it through the weekend. Back before I was diagnosed with EDS when I was desperately trying to hold on to my job I would have to go back and forth repeatedly between GP practice and pharmacy to try and sort my prescriptions out every month, which could only be done during working hours and often took up an entire day. Whilst DLA can and does pay towards the additional financial costs of disability, such as the petrol to go repeatedly back and forth sorting out this kind of problem, there is no way of compensating for the many human hours spent on such tasks which are a significant yet unseen barrier to work. 


Madison Rose said...

Oh goodness, I know. I'm hopeless at dealing with bureaucracy. Still, glad to hear you're feeling less withdrawal-y :)

Mary said...

I was worried about theft with my new Chair Of Awesome but I'm feeling a lot happier after a little trip to Halfords.

Firstly I got a coiled bike-lock that lives on a mounting that can be screwed to a beam of the chair (it's so handy that the tubes are the same size as bike tubes). Mine is a bit behind where my legs go, meaning it's out of the way, always with me, and easy to secure when I need to abandon the chair outside an inaccessible building.

Secondly, I found out about the Police National Mobile Property Register (NMPR) which is what you're meant to do with pushbikes these days, but it covers all and any portable goods. You go to the site, create an account, and log a description and any other identifiers of the equipment like serial numbers or even photographs. Then if it gets found, it can be identified as yours, and if it is stolen and sold to a second-hand shop, it should be flagged and spotted before it gets sold on.

All that lot is free, although due to my high levels of paranoia I also got a kit with a UV pen, barcoded warning stickers and so on, just to add as many identifiers as I could.

None of this actually stops the item getting stolen, but it's at least a bit of a deterrent and increases the chances of the property being returned to you.

BenefitScroungingScum said...

MR: Thank you :)

Mary: Thanks for the information. I don't think it's going to help your paranoia to tell you that the 1st wheelchair that was stolen had one of those bike locks on it at the time!