Occupational therapy and ME/CFS

[Wonko]

Given the cost of labour vs the actual cost of most aids, that sounds like victimisation to me.

Someone at the council with a 'grudge' or 'dislike' of pwME.

A HCP 'prescribed' aids which they saw as necessary but this was overturned by a council employee - sounds fishy to me.

As it seems very unlikely that financially it would have made sense.

When I was assessed in 2012, for a shower (I wasn't asking them to pay for the shower, or the work, my HA wouldn't allow me to fit a shower unless an OT said it was necessary for health reasons), they decided that I actually needed a wet room. and further that I should be in a ground floor property.

A report to that effect was written.

Then the system took over.

I am still in the same 2nd floor property, I still do not have a shower.

 

[Invisible Woman]

Given the cost of labour vs the actual cost of most aids, that sounds like victimisation to me.

Someone at the council with a 'grudge' or 'dislike' of pwME.

A HCP 'prescribed' aids which they saw as necessary but this was overturned by a council employee - sounds fishy to me.

As it seems very unlikely that financially it would have made sense.

Yes, it would seem to me to be victimisation or someone with a bee in their bonnet. It could be a change of personnel at the council. I know that some people seem to believe that ME patients should not be given aids or support as it just encourages false illness beliefs, so I suspect that may have been the justification used.

I heard about the case from someone who tried to help the couple get the issue resolved.

The problem is there is so much bad information out there by the BPSer's who will claim it has been misinterpreted or they were referring to something else or whatever, while never correcting the record. Lots of ammunition to be used against an ME patient if someone is prejudiced against ME patients. Sadly, such prejudice has been seem as acceptable in the past.

 

[JemPD]

Precisely @Invisible Woman

For me its just not worth the risk. I have got a chair etc so it not crucial

 

[Kitty]

I am still in the same 2nd floor property, I still do not have a shower.

When you have some spare energy (ha! I know that's a joke), it might be worth starting to note any near misses or incidents were using the stairs or the bath puts you in danger? Then you could have another go at it.

I had no idea how many falls, stumbles, or collisions I had until I was asked to keep a record by an OT. They'd been part of my life for so long that unless I hurt myself unusually badly, I no longer noticed them.

It averaged 10 incidents a week, with the most risky of them all occurring in the bathroom. My legs and feet were always covered in bruises from attempts to climb over the side of the bath and keep upright; those on my arms and shoulders were more likely to be from crashing into the stair handrails and door frames. The only reason I hadn't fallen coming down the stairs was that I'd been descending on my backside for years, ever since I went arse over tip from the top of the staircase in about 2003.

The OT had an inkling about the frequent falls, as my first appointment with her was on a baking hot day when I was – unusually for me – wearing a dress. She'd spotted the bruises, but thought a diary would provide better evidence. It didn't take much doing, I scribbled notes down on any piece of paper I had to hand, put them in a pile, and she got them typed up.

I do have lifelong vestibular issues as well as ME, so I guess not everyone will be quite so spectacularly clumsy. But if you are, you might as well have it on your records.