I need advice about OT assessment, don't know what they do or what to expect?

[hippychick]

Hi everyone, I'm one of those who don't write a lot (but I try to read when my brain lets me lol).

I'm hoping I can bit of advice. As well as fibro I have chronic kidney disease, multiple endocrine neoplasia type1, hypercalcaemia, lymphodema, sciatica, nerve damage in my feet and lower legs and chronic back pain (after having microdoscectomy 2 yrs ago), oh and gallstones .... I think that's everything, I tend to forget stuff.

Anyway I have OT coming this afternoon to do an assessment. I'm really nervous about it ( not just for me but my hubby cos he needs help to help me, if you see what I mean). Are there any things in particular I should say or do? (like when we're told to use certain phrases when applying for DLA ). We are new to asking for help from social services/ council as we've struggled to manage ( and care for our two autistic children). I don't know how to explain what I/ we need and an worrying I'll forget stuff too.

Any advice or tips would be really appreciated.

Thanks

hippychick

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Hi happychick,

How did it go? Sorry, it seems very quiet here today and I've been at the dentists and having my muscles messed with by my therapist We also had a power cut!

Sue xx

[poppy-03]

I see my OT quite frequently as each request requires a new accessment!

The OT's are usually really nice and you just tell them how much you rely on others for help with peronel care, who does the shopping how tired you get ... its pretty straight forward and one tip as with benefits you always state your needs on your worst days and dont be embasrassed to say about things you would normally like to hide from others ie. incontinence xx

[hippychick]

Thanks for the replies Sue and Poppy, ive not had time til now to answer as i had to help my younger two decide what they "needed" to pack and eat efore they went to visit their fAther tonight. Im shattered and after OT today im feeling flat and fed up but i couldnt let our two lovlies see that.

Wow sounds like you've had a day and a half Sue

Well the OT lady seemed nice, however practically every sentence included comments about be more optimistic and id manage better! etc. I glad I insisted the appt was when my hubby had got home, cos he said exactly what I thought, that she was trying to twist everything to make out theres little they can offer, that we have coped so far and it was obvious she didn't understand about my medical problems, that we had to be more positive! I couldn't believe the nonsense I was hearing. I've spent all my adult life caring for, providing therapies and educating my three autistic children on my own til I met my hubby a few years ago (battling and beggingvarious docs and authorities for whAt my children need) while being chronically ill and now my body has pretty much given up (that's how a consultant put it) it looks as tho I'm going to have to battle for every little thing for me and to ease the stress on my children and hubby. I know I shouldn't be surprised but right now I feel as tho I'm going tobe like a performing seal to entertain these people for scraps. At least I know it's not my mistaking things, my hubby's words to me when she left was "well that feels like a waste of time". Towards the end he took her around the house to show her what some of the problems are and being the tactful soul that he is told her that I'm not a case of "can't do cos I won't do" but is "can't do cos I am in too much pain and exhausted etc", he even went as far As to say to her that we aren't looking for hand outs or money just help so that ican live more independently and our autistic children don't have to be stressed and upset cos they have to do things for me when he is at work (he works every day 1AM through to following afternoon). The children are happy to help me but the worry is affecting their abilities. Sorry I'm having a right old moan here. It just seems the more we try to cope the more likely we have to battle for help and that no one cares.

At least I think she left understanding I'm genuine. She wants to come back with someone else next week when I'm onmy own. No way is that going to happen, I told her I rely on my hubby to be there or I'd end up forgetting things I'd want to say (which is true but I'm not daft enough to be on my own in the future).

I guess we'll just have to try again next week. Doubt I'll sleep too much tonight (nowt new there lol). I'll let you know what happens next week ladies, you never know I might have the energy to flap my flippers and honk like the seals (I refuse to balence a ball on my nose tho

[MissKittycat]

It sounds like you've had a rough time of it sweetie x

It sounds like the OT wasn't really that helpful and you're right to have someone with you when they come back. Between now and the next visit I would write down everything you need to ask them when they come next. I do this when I have an appointment as I keep forgetting to ask important questions. Also you have every right to have an advocate there for you. I took my other half to my last appointment so he could give his perspective on what happens.

Anyway, sending you gentle hugs and if I can help in any way let me know.

Tracy xx

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Ive had OT out mine will allow me to say what I can and cant do, they really dont want to take over our lifes, and as ive still got 4 kids at home they re being very careful on how they approach things, Ive had carers out for 2 weeks to see what I can do for myself, which has been nothing as having a really bad time, It helps if they re sympathic and understand this illness which alot dont

[Gracie59]

I've found my local OTs very helpful in supplying me with various aids and giving advice. I also see a specialist rheumatology OT who knows a thing or two about fibro.