Does anyone know of any free/provided alternatives to a wheelchair so I can get around my home? Wheelchair Service that I come under will not process GP and OT referrals for me, it’s so very hard and painful for me to get up and to walk even just the few steps to the kitchen or loo, I often sit for hours cold or thirsty or in the dark because that’s better than getting up and trying to walk so I desperately need a free alternative to be provided but don’t know what or whom to ask.
Hi, I dont get this…why wont they refer you? In my area you cant have a wheelchair if you can walk at all. Is it like that in your’s?
As you can only just about manage a few steps, then that’s not really walking is it?
Borrowing or using chairs that arent tailored to you can cause problems for your body…as I found out to my own cost.
Ring your OT or GP and ask what’s going on.
Boudsx
Hi
I agree with Bouds get in touch with your OT they are the ones who can sort it.
Pam x
Hi. thanks, but as my reply to PBMS the OT can’t get them to do it either, I understand Bowley has the monopoly on NHS wheelchair provision for my area so nowhere else to go to. I told my GP surgery they claimed hadn’t received any referral from GP but…well nobody cares!
Hi, I don’t know why, GP made a referral around 6 August, about 3 weeks later OT made verbal referral and told me they said GP hadn’t sent them a referral, OT made a written one on 2 September, I rang Bowley (SE wheelchair service) around 25 October to ask how long and they said no outstanding referrals from August and didn’t have any referral from the OT! I told OT and she rang them and then told me they said they had her written referral but didn’t know when they’d process it! That was that. They have deeply, deeply upset me treating me like this so I can’t ever have them in my life ever (even if they did decide to stop excluding me from getting help), so I need a free alternative. I’ve seen an Alinka walking bike but don’t know if it wld help me and I cannot afford it anyway. I wondered if any agency provides alternative mobility aids like this bike or if there’s anything else. I cannot find anywhere the Bowley Close wheelchair eligibility criteria and when OT rang them she didn’t come back to me and say I’m not eligible, just they had no idea when they wld process it (but on 25 Oct had no outstanding referrals from August so obviously deliberately not processing referrals for me, I loathe them now, it’s disgraceful to treat someone like this, if - if - I’m not eligible they cld have told me straight away instead of me hoping and hoping every day, they have never contacted me so have never assessed me).
My advice is send a letter to your MP.
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I hear your pain and frustration. Maybe it is best to try to start over: How do you contact your OT team? I use email (to make sure I have a record) and follow up visits with a short thank you plus a summary of their advice.
I find phone call are problematic and do not serve as evidence of your contact or requests.
Our NHS practitioners are all overworked, understaffed and poorly paid. I always treat them ‘carefully’.
This has gone on too long. Do you have an MS Nurse Service?
Best wishes. T x
I was diagnosed in May and feeling completely lost.
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Hi, so sorry you are feeling lost, I was diagnosed around 22 years ago but was able to manage by pacing myself for many years.
I feel it’s hard to take in thediagnosis because the outcomes are so variable, ‘everyone’s MS is different’, so it’s all worrying about ‘what ifs’ - and in my experience there’s not much practical help for what is needed when it’s needed, and don’t get me started on the orthotics, whoever is designing them doesn’t understand MS needs!
There is an MS nurse service here but when I was trying to get in contact with her for help she never replied to any of my calls so she’s banished from my life too, I’m too old and too worn out to put up with being treated so appallingly, I know they are busy but how long does it take to ring or text to say ‘sorry I’m too busy’ rather than leaving patients waiting and waiting with false hope of getting help, that’s just cruel.
As I mentioned, do think about writing to your MP even if your MP is a plonker. It is the sort of thing they respond to, and isn’t time consuming for them and usually has a quick, good result, so they feel good. The service will not want to look bad, and potentially get bad publicity, so will jump much faster to an MP than they would to just about anyone else.