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We want to hear from you: please tell us about your experience of the online community.

Hey :) I'm visually impaired, and also use a wheelchair

Jules_H

I'm Julie, currently living in South west Wales. I have multiple long term physical health issues from my neck down to my toes, and I'm also visually impaired. I do use a wheelchair when my spine and/or joints force me too, but I don't find it an easy task using a manual wheelchair with a white symbol cane.

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janer1967

Hi and welcome to the community

I'm exactly the same in a wheelchair and severe visual impairment

I don't go out on my own ever . I used to use a power chair with a cane b4 my sight got too bad to use it

Jules_H

janer1967 said:

Hi and welcome to the community

I'm exactly the same in a wheelchair and severe visual impairment

I don't go out on my own ever . I used to use a power chair with a cane b4 my sight got too bad to use it

It's nice to know I'm not alone on that. I recently had an O.T recommend me for a motorised wheelchair, but when the letter came, one of the top reasons they decline is if the user has "any" visual impairment. As I live on my own and don't know anyone in the area, so I struggle the best I can.

janer1967

Yes they will decline if you have sight issues I had mine gifted to me I am an amputee so full time chair user

I'm having cataract surgery soon so hoping there will be slight improvement but I also have glaucoma , diabetic retinopathy, laser and cryo surgery for bleeds and totally blind in one eye

We just do the best we can speak to your local sensory team they may suggest some volunteer groups that can assist you to get out and about

You are not alone at all we are here to support you

Jules_H

I don't understand why the O.T would have put me forward for a motorised chair, surely she should have known they'd say no due to my vision loss. As for the vision assessment team, I was told two months ago that they'd be in touch but we're running two weeks behind. I've heard nothing at all from them even though I tried chasing it up last month.

janer1967

I waited over a year for sensory team to find out they hadn't had referral from hospital it was during lockdown so I presumed that was the reason . Once I chased it they came out following week .

They were brilliant put all sorts of things in place and then a mobility expert came for months to show me how to get about in my power chair on my own . However since then my vision got worse so no longer feel confident to go anywhere alone

Jules_H

I was asked by Delta Wellbeing when they put my life-like call box in if I wanted to be referred to the vision assessment team and an O.T about a new wheelchair I was meant to get pre-pandemic. The O.T disappeared after referring me for a motorised chair I wouldn't get, and when I googled the visual assessment team, two different teams and phone numbers showed and I have no idea which Delta Wellbeing contacted. I may ring the numbers from google, and if another team sent via Delta Wellbeing turns up as well, two are better than none. Like you, I don't even know if I'm on anyone's waiting list, so I'll have to keep chasing them down.

janer1967

Are you registered as visually impaired?

This is normally done by your consultant referring you to your local council for registration

My local council run the sensory team and I got the number from the website and self referred

I had swful treatment from wheelchair services so have now bought my own wheelchair

Hope you get sorted

Jules_H

The optician sent me to the eye hospital as my dry AMD had become wet. I lost sight within five months in my left eye due to severity of scarring across the central retina. It's too distorted and blank spots so they stopped treating that eye. Because my right eye can still see things at a distance with glasses on, but I can't see anything a foot in front of my face, they won't register me visually impaired. I've argued with them so many times saying how I don't care what's up the street, I need to be able to read food labels, microwave settings etc, it gets ignored. I didn't know I could refer myself though, I'll look into that thank you.

L_Volunteer

That sounds really difficult @Jules_H. Sorry to hear you are experiencing that. It sounds frustrating, especially as you struggle with reading food labels and microwave settings etc and feel ignored.

This is not, unfortunately, an area of my expertise. This means I can only hope someone else will provide you with the answers you are looking for. However, you are in good hands in our community.

Please do keep us updated and let us know if we can do anything else to support you

Jules_H

@L_Volunteer When my sight first started going last year, I had a gas cooker. I could hear and partially see the flame on full, but nothing lower, so I applied to DAF (discretionary assistant fund) for an electric cooker. For something that should've taken 21 days max for them to decide on, including appeal time, they gave no reason for refusal at all, then ignored the appeal completely. It was only when, after two months of the Welsh govt contacting them demanding to be given a reason, they said my appeal had been sent in too soon! I have correspondence proving otherwise, so that took four months. I still have no cooker but that's okay, I'm hoping to get a talking microwave from the RNIB shop now I've found a company who delivers (free of charge) microwavable ready made meals to my door. Sadly my being let down and/or forgotten about by care sectors has been going on for the last decade, I've become resilient and adapt where, when and how I need too, I've had no choice.

janer1967

I use very strong magnifying spectacle glasses they are x6 strength still can't read labels on food etc but they help with my phone or letters and stuff

I get them online from company called eyelids

The sensory team should provide aids to help like bright sticky dots on appliances like cooker microwave washer etc so you can see what programme to put them on . Mine also helped with technology and mobility

I only became registered when the sight in my one eye I can see with became severly impaired not when I became blind in one eye

Jules_H

I know I'm not eligible to register at the moment, but it'd be good to read up on the information before I need it, more-so given how quickly my left eye stopped responding to treatment. I asked the opthalmologist how long I'd have sight in my right eye if I stopped the injections, I was told "any time between twenty four hours and six months".
I have injections every six weeks, it's not pleasant being bed ridden every sixth week for a week. The only two options for doing the injections are "head back" or lie on a flat hospital bed. My spine can't do either and goes into continual spasms. So I either go through extreme spinal agony every six weeks or I lose my sight. It does help knowing in advance what the sensory team do though, as I haven't been able to find out. Whenever I've asked people on the phone, they've always been vague.

janer1967

I have injections every 8 weeks as well so fully understand I hate them but I don't have the spine issue so it must be awful for you

The sensory teams are different in each area I guess but mine were fantastic

I'm sure if you contact them they can help you now

Jules_H

While I was given a few magnification devices by the low vision assessor at my opticians, hopefully the sensory team can help more. It seems I'm going to have to pause chasing them up for a short time as I've just tested positive for covid. At least I don't have any appointments or need to be anywhere.

janer1967

I'm sorry you have covid and hope you don't get too bad with it , you may find your not positive for long and can then chase it up

Jules_H

I'm luckier than most in that my symptoms are more like a bad cold this time. I did get a call from Delta Wellbeing a couple of hours ago, they were the ones who emailed the sensory team and O.T about my wheelchair, they said if I haven't heard anything by next week, they will chase it up for me.

janer1967

That's good they got back to you so hopefully you can get somewhere with it

I had covid but was mild and my son has had it twice again mostly just cold like symptoms

Jules_H

Fingers crossed neither of you get it again, it's definitely not pleasant.

Sparklebright63

Hi Jules_H

Sorry you R having so many problems I am partially sighted in 1 eye and very poor sight in the other eye I was born with retrolentalfibroplasia I am very good at walking into door handles walking into things so I find it hard to get about sometimes.

I loose my balance to happened earlier a good job I was sat down or I would have been on the floor broke my wrist in April last year after loosing my balance.

I hope you get your problems sorted out soon would luv to chat if you do let me know.

Sparklebright63.

Jules_H

janer1967 said:

Hi and welcome to the community

I'm exactly the same in a wheelchair and severe visual impairment

I don't go out on my own ever . I used to use a power chair with a cane b4 my sight got too bad to use it

This is one thing that does worry me.
I know I can talk with people at various organisations, the occupational therapists or visual impairment officer, but they're all healthy and, well, they just don't understand. It's the age old "you have to experience something to understand it", and it often feels they get 'sympathy' mixed up with 'empathy'.

I can come on here and talk, and people can actually relate to either parts or all of what I go through.

They don't seem to understand or get why, after decades of being active, we're then given an option "we can have a cane or we can have a wheelchair, but we can't have both".

I've taken pain killers before going to town with just the cane as the V.I officer wants me to practice more with it. So far i've left my trolley with shopping in it with the security guards near the entrance/exit so I can go outside, sit down for a while and take more pain killers.. One time I've left my trolley full of shopping, left the supermarket and got a taxi home, gone to bed and stayed there for three days due to repercussions. (As staff were scarce, I couldn't find any to let them know and leave my trolley with them).
At one point I was literally hanging off the trolley my body just hurt so bad. All of my joints and spine just gave up as I got to the till. I got in the taxi, but honestly, I just wanted to lay in the back, but knew if I did, I wouldn't be able to get back up.

The awful thing is, when I got out in my wheelchair because I need too, the general public have been so abusive. Like they know people use wheelchairs and people use white canes, but it doesn't occur to them in the slightest that some need both. So when I manage to get a jar of coffee for example, and asked this woman "excuse me, can you tell me if this is normal or decaf please?", she snapped at me "what? are you f******* stupid or something?, read it your damn self r*****"
So between the O.T's and my wheelchair, and the V.I officer with my white cane saying it's one or the other, combined with the sheer agony of being without my chair and the abuse with my chair but no white cane, it really feels like I'm stuck between a rock and a hard place.

Am I the only one like this or am I naive and new to this and it happens a lot?