trouble with social services and local councils

[ray-wiffen-1958]

hi after being diagnosed with cbd at the age of 49 was quite

a shock to the system but thats life, Most days are a struggle

but you have to stay positive and take each day as it comes

the biggest problem i have is getting in and out the bath as

i havent got any strenght in my right arm, has any body had

problems with social services or local councils refuseing to

install a shower instead of a bath, I have had so many ots

round the house to do assesments they agree to install one

then when it comes to it they change there mind the latest

excuse is while standing in the bath having a shower they

say there is a chance i will fall out the window so down to

health and safety the council wont do it now any idears would

be greatfull.

[PSPA_JillL]

The best arrangement for someone with PSP/CBD is a wet room on the ground floor as well as living accomodation, do you have a friend/family member who could attend the next meeting with the OTwith you and help you get across that you want this sorted out. Are you in contact with your local Parkinsons nurse they also support people with CBD, or your PSP nurse from the PSPA?

[PSPA_DebraC]

Hi Ray

If the installation of the shower is going to be via Social Services, that would normally be done by one of their approved suppliers, so if they haven’t already, ask Social Services to arrange a home visit with Social Services, their Supplier and the OT to find a solution. If the current use of your bath is a high accident risk then Social Services, OT'S etc have an obligation to help solve this…

[riosenior in reply to PSPA_DebraC]

Any progress??

[ray-wiffen-1958 in reply to riosenior]

hi riosenior,

hope your ok no there is no progress as of yet

i have the lady from parkingsons uk comeing

round the house on tuesday next week hope

she will get something done take care,

[hmfsli]

The problem is that all too often Social Service OTs are risk averse. They are supposed to help you find solutions for the tasks of every day living though so try and talk to them again with support from someone else as JillL suggested.

[ray-wiffen-1958]

hi all thanks for your answers, ive had social services round the

house on numerous occassions to do assessments for me, i have

had the ot from colchester hospital do a assessment , and the local

council with a independent private ot did one and none of them could

come up with a solution, All the council could say was we will have to move

in too a bungerlow but there is a five year waiting list and they wouldnt

take in to consideration my two girls who are 21 and 19 they would have

to find some where else to live so not only am i going to die they want

to split my family up, Ive had the parkinsons support worker round and the nurse from the pspa has made loads of calls to diffrent people and still

nothing, i had social services round when i was first diagnosed and they

have never been back that was nearly three years ago and im getting

worse,

[dorothy-thompson in reply to ray-wiffen-1958]

Find out the name of the Director of Social services in your area, bombard he/she with letters, phone calls and/or emails and ask them for their input and assistance. Then find out the name of your local councillor and do the same to them.

[ray-wiffen-1958 in reply to dorothy-thompson]

hi dorothy,

thanks for the reply i will do what you

said thanks very much for your input,

[Kathy]

Hi Ray,

Sorry to hear of your problems. Have you tried contacting your local MP? Unfortunately, it seems, these days you have to really make a noise to get anywhere..those who shout the loudest get the attention! It shouldn't be like that but it is. Could your GP/neurologist write a supporting letter?

The other option is whether you would be able to use a swivel bath seat? They fit across the bath and have a seat that rotates to help you in and out

essentialaids.com/swivel-ba...

although you may have already tried this??? The OTs provided one for Mum and it's been brilliant!

Good luck... and keep us posted!

[ray-wiffen-1958]

Hi kathy,

Thanks for your reply i had'nt throught about my mp i will

drop him a line as soon as, we tried all kinds of seats and

blow up coushions but nothing works the bathroom is quite

small so a walk in shower would be ideal,

thank you and take care.