Cheri

Hi everyone,

I was diagnosed with spina bifida n tethered spinal cord in 2008 as it was missed at birth,I have all the main conditions bladder n bowel n deteriorated alot as rely on help 24/7 but my main thing that makes my life extra uncomfortable is pain as I'm on alot of meds gabapentin, oxycondone,amitriptyline,but although hit helps my pain is there and I'm having no support to help my pain management as ive been trying to get a bath installed as it helps with my pain n dignity n abit of independence but the council consider that it's not a good enough reason to change it as I have a shower with chair but need to keep my legs n feet elevated n have falls so my shower is shared also a stairlift was told no but got stannah stairlift up n yep it can be done no ramps as use a wheelchair n need bigger doorframes n toilet as my toilet room is the smallest ever but I'm getting nowhere as it seems they see disabled n not the fact we are suffer with different conditions n needs....so I need HELP PLEASE.... pain,everything xxx

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  • perhaps talking with an occupational therapist might help you with a proper letter to your housing department regarding your bathing needs your council might only be considering the extra cost the possible necessity for a bath hoist and so on if you share your bathroom facilities the person you share with would have to agree to any changes. you could also ask your gp for a referral to a pain management clinic. best wishes,

  • Hi n thankyou,

    I've been through that as I've actually already have a bathlift n also I manged at my previous home n it was put into my careplan as also under painclinic it's just my pain is basically made even worse n I'm on meds which were all done by my pain specialist it's just the council have "disabled"as a umbrella n it shouldn't be as we all have different conditions n needs n now trying to make them understand is tough as they have decided that pain isn't a enough to get s bath put in even though I'm not asking them to remove shower...even my gp even wrote a letter but still no good so I've asked for help n also need help with my pain as trying to explain I give up as if it was a visible condition more medical staff would understand n it makes you feel on your own!

  • Hi Cheeza76

    Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read that you are struggling to ascertain the equipment that you so desperately desire and deserve, and I sincerely hope that you can find some resolution to this issue.

    I would have personally thought that your OC would do all of this for you? However, if they are not, you could also try your local CVS (Community Voluntary Service) who should have details of grant funds that are available for this kind of thing. I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

    PS. Had another quick thought. Are you under the Rehabilitation Team at your local hospital? If so, they may be able to help with this. If not, it may help to ask for a referral.

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