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Old Jan 11, 2011, 08:40 AM
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yellowted yellowted is offline
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Member Since: Nov 2010
Location: UK
Posts: 2,004
i understand exactly where you are coming from, i have been dxd for 2 years with a m/h condition which has rendered me unable to walk at all, 2 years on i have just been told i will never be eligible to get my house adapted so my bathroom and kitchen are on the same level!
I am so fed up of hearing 'i don't know' and 'when i know i will certainly tell you' from my care team that i have told them not to contact me untill they do know! i have tried mt local councillor, MP and have even tried the health secretary all to no avail!
so much for paying taxes, mi paid tax on my earnings, my staff's taxes and employers tax not to mention tax on everything i buy! what for? it is certainly not used for what they say it is for!!!!! i am a pure bred white English female living alone having worked continuously since leaving college 20 years ago, i am not a lay about who has not contributed to this society, i should at least be allowed to live safely in my home, not have to bump downstairs like an 18 month old baby!!! this system is completely wrong on all levels!!!!
sorry for the rant!

on a different note, have you got an advocate, there should be ones in your area who specialise in m/h or housing, i would advise a m/h one as they are more aware of the difficulties m/h puts on finding a home. phone your council or ask your local citisens advice beuro, they should know of any. failing that ask PALS you should find their number by googleing your local hospital and then searching for PAtient advice leason service. every hospital has one and you don't have to be a patient there to use the service.
Do you have a housing officer? try talking to him who knows??
i know government are trying to put m/h services back into gp surgeries, which will be good for you as with that will come self referal for DP/SDS, we are looking into it at the moment here trying to find ways to get it working efficiently and lessen the time people wait from applying to receiving the money!
i would strongly advise being pro active, get yourself on any consultation boards, meetings etc which the council hold, get your name and face known for trying to help them, i know why should we help the council which is not helping us but it could stand you in a little better place when you need things from them, i have used my connections to speed up things in the past, ok i have not won the war yet but am winning small battles sometimes....if i had not had the contacts i would have lost the small battles too as i would still have been invisible!

please do not go homeless, it will only put you further out of the reach of help as i was once told by a CPN that if people choose to live a certain way then there is nothing they can do to change it so they do not waste their time trying! (i had asked her how she dealt with people who choose to live on the streets or choose to sit on a park bench drinking all day) ok she was cxxp at her job and i actually got her removed from my care team on the grounds she was threatening me and had lied on a number of occasions both to me and her superior!

((((((((hugs)))))))) take care, im thinking of you xx