ME - aids and adaptations?

Ames

Just had an assessment from SS. They wont give me any help because I'm 'coping'. Apparantly. It's in my diary here:

http://forums.moneysavingexpert.com/showthread.html?t=1867581&page=2

Any advice would be very much appreciated.

Invasion

Argh Ames, that must be so frustrating! I have ME, and I've stayed away from SS so far, as I live with my parents and they can do most things, it's the bathing that I find hardest, once every 2 weeks at the moment, even with bath board and grab rails (I have an OT for pacing) Looking into getting a bath lift with DLA money. I really don't have any advice, it seems it completely depends on where you live how good SS are, but sending hugs your way... it must be incredibly hard. x

cyberbob

Ames wrote: »

Just had an assessment from SS. They wont give me any help because I'm 'coping'. Apparantly. It's in my diary here:

http://forums.moneysavingexpert.com/showthread.html?t=1867581&page=2

Any advice would be very much appreciated.

My wife suffers from M.E (she is bedbound 24 hours a day and unable to eat or drink unaided0. I am her full time carer. We have had to fight for every small thing. Its very hard. We have a fantastic OT. The best bit of advice I can give is get as many people as you can backing you. If your GP is no good change GPs. If you see the District Nurse ask them for support. Complain to social services. You may be able to get an advocacy organisation to speak for you (that may help) Also citizens advice are well worth speaking to. We are still fighting for basic things but eventually things slowly start to move.

Ames

My GP is fantastic, I'm sure she'll support me. On the advice of a couple of other MSE'ers I'm going to contact my MP and councillors, and Mind (I have mental health problems too, which is why I feel it's so important for me to be able to get out and about as much as possible). I'm not sure where to find an advocacy organisation, do you know where I could look?

Thanks to both of you for your input.

daska

You don't have to 'employ' someone direct, you can use an agency. It means you get less for your money in terms of hours but you don't have to faff about with tax and NI etc and if you don't like the person you can ask for someone else.

I'm still reeling from you being told you didn't need to go out. That's appalling. Have you a CAB near you, or a DIAL? Have you tried contacting your local councillor or MP? The fact you get high rate care should demonstrate that you have genuine needs!

Ames

I have a DIAL, but they can't help with social services as that's where they get their funding and they don't want to bite the hand that feeds them. I've emailed my councillors, but not had a reply yet. I copied SS in, and someone's investigating. I even tried to explain that I've just started CBT where you HAVE to go every week, but she just said that if they're aware of the situation I should be able to cancel appointments and change it to when I have a good day!

The really annoying thing is that things she said were good coping mechanisms are things that DLA tribunals have said are unacceptable - the slotted spoon way of cooking, going to bed in my dressing gown after a shower cos I'm too tired to dry myself.

She said that if it took me four hours to get dressed, that would be unacceptable and they'd provide help. I said 'so four hours to do it is unacceptable, but not being able to do it at all is acceptable' and she shrugged and said yes.

As you can tell, even after two days I'm still seething!

Claire_DC

Ames wrote: »

I just wondered if there were gadgets I didn't know about, like to make cutting veg easier? My flat's already adapted so the big stuff is done, although I need some more grab rails.

You could invest in a food processor to help with the preparation of veg and stuff? x