hi helen thanks for replying ,well i had a dp assessment 11 forms to sit and answer to what a dragg that was and like you say theres no guarrentee that i willl get anything only if im lucky 1hr a day !!!!! it takes me that long to get in and out the bathhhhh ohh well we will see ,thanks for the nuffield opion hey im up for anyone who takes a bit of interest i dont expect them to totaly understand but ill look ,dont suppose you have a name ??? thanks for your help
anyway how are you doing ???? take care bev xxxxxx

Hi Bev

What are you trying to get direct payments for? It might help me give you some better advice if I know what you are hoping to use it for.

Otherwise I'd say sit down and write a list of what you are hoping for, why you want the support to do whatever it is, how often you want the help etc, why you can't manage to do it yourself and need the direct payment support.
Also make some notes for yourself as pointers for what you are like on a bad day. I'm saying write it down or type yourself something just so you don't forget something then after they've gone think oh I wish I'd said that.

My only word of warning would be from my expierence don't get your hopes up too much if you just have a physical disability they don't seem that keen to help them. A friend once said to me it's because they get more brownie points for getting someone with mental health problems involved in the community and supporting them. That certainly fits with what the social worker told me because they said can we not get the gp to say you are depressed then I can tick the mental health box and I can give you everything handed to you on a plate. It seems just physical disability isn't enough now a days!!!

Good luck with your assessment hope it goes ok if you post again before wednesday to this post I'll try and give you some more advice.
With regards the cp spscialist where do you live? I've found the Nuffield orthopeadic hospital in Oxford have been good they've had a better understanding than most about cp in adults wouldn't say they've been brilliant but they haven't just dismissed what I've been saying.

Keep us posted take care

Helen

dear panther,i have only just joined this site and its been really interesting,i read about your fight with dp and i am pooing myself i dunno why cos i have a assessor comming out to me on wed what do i do its like being a monkey in a cage these people just gawp at you ,and if you dont tick the correct boxes i suppose you dont qualify
so what happens do they want you to do a irish jig whilst makking a cuppa and spilling it all over them and then i get to say oppppps sorry the shakes go with the cp !!!!!!!!
anyway ip you dont mind could you if you have the time to give me pointers to this assessment i would be gratefull also i would let you know
i hope you are feeling ok and hope to chat to u soon
ps im still trying to find a cp specialist arrrrrrrg wot a nightmare no one ,anywere its crazy dont you think i so wish that i had the time and energy and deddicate time to look in to it further
take care chat soon hope you reply many thanks bev

Hi Paula

I'm not doing to bad am still waiting for the results from my mri scan. I'm a bit worried because I rang the hospital this morning and the secretary told me that if the mri was clear I wouldn't hear from them I'd just be discharged.

She then went on and looked me up and said oh they do need to see you I'll arrange for outpatients to send you an appointment. So am a bit worried about what they may of found kind of wish I hadn't rung the hospital today now!!

But other than that I'm ok still not managing to walk very much because it causes pain in my hip but now the weather is improving the aches and pains tend to get a bit better.

Hope you are well take care
Helen

Helen,

Just been re -reading.

How are you now?
Paula

Hi Helen,

Maybe the scan was fine but they have other ideas about how to help you. Hospitals and clinics always make me nervous so I can understand you wishing you hadn't phoned, but at least things are moving forward a
little :huh: Hope the appointment comes through quickly.
Paula

Hi Bev

No Mri results yet 9th June is the big day for that so will post as soon as I can after that.
No I haven't heard of sponolisiss what is it?
Good luck with it all I know what you mean I don't like ot or social work assessments either.
Let us know how it all goes.
Take care

Helen

[quote name='panther' date='Apr 20 2009, 03:43 PM' post='32969']
Hi Bev

Yes I had the mri on Thursday last week not sure when I get the results back they said the results would be sent to the consultant and I would be sent an appointment to go and see him and discuss the results. So now it's just waiting for the post every day looking for the appointment.

Well done on getting the direct payments I'm not sure I could face going through another assessment my social services have always considered me not disabled enough to need anything direct payments included I've got to the point where I've stopped asking.

Take care good luck with your appointment whenever it is will keep you posted on how things are going. At least the weather is improving which I find helps all the aces and pains.

Helen
[/quote]

hi helen long time no hear been reading have you had your mri scan results now?? i went to a private hospital and had a xray taken and have you heared of sponolisiss well thats wot ive got now so im of to see a consultant at addenbrooks hospital in cambridge and if anyone else has it and can help me with tips would be gratefull
ive a ot assessment commming up i hate ot people because im not text book and they talk to me like im 2 yrs old know what i mean lol
well hope alls ok and hope to hear from u soon tc bev

hi helen not long to go 4 your results hope all well with then fingers toes crossed for ya
this spondilosis is well my xray looks like ive a crack in my spine !!! ive got curverture of the spine and me bum sticks out a bit like a duck but this spondolissis is were the back slips so its gone from a level 1 to level 4 in a few months its very painfull but i have a great gp and the pethadine works a treat if you look on wikepedia they have pictures on there on spondlosis thing cos i am not good at explainin things hun anyway take care chatty sooooon bev

Hi Bev

I now know the MRI results although I haven't done the appointment yet. The Nuffield hospital have started this new thing where they send you a copy of the clinic notes and I recevied two of these in the post today.

One said that he had reviewed my scan results and he says that it showed no causes for my symptoms and that the scan on my hip was normal.
They are now suggesting a gait analysis and that he would see me in clinic after the gait analysis. The second letter was a copy of the request from the consultant requesting a gait analysis from the gait lab.

I don't really want a gait analysis and have spoken to the consultants secretary today she has advised me to keep the appointment on the 9th June so I can discuss how I feel about having a gait analysis.

So it looks like whatever the pain in my hip is it's going to be one of those things I just have to put up with and put it down to yet another thing that is part and parcel of the cp or of getting older with cp.
I've made an appointment to see my gp next week as well so I can talk to him about the letters I've received and see what he suggests.

Helen