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

Worried about my wheelchair services assessment.

erin98

Hi

I have my wheelchair services appointment next week, and I'm really nervous.
I can walk extremely short distances (just from one room to another) with a gutter frame, but I do still have falls and extreme pain due to having 10 surgeries on my legs when I was severely burned years ago. I also have an issue with my joints causing dislocations.
I know I can't get an EPIOC because I faint when my blood pressure drops, but I'm hoping for a self-propelled wheelchair that I can use indoors and outdoors. My fingers dislocate if enough pressure is on the joints, so I'm not sure if they'll agree. I'm also aware you can only get active wheelchairs as a full time user, and I can walk for maybe 30 seconds, so I don't qualify. I've heard it's pretty much a postcode lottery, so I don't know what to expect. I've also been told they can refuse you any wheelchair at all if they believe you don't need one, so it could go any way. I can't be independent without my wheelchair but mine is secondhand, ill-fitting and falling apart.

Does anyone have any similar experiences with wheelchair services that they could share?

Thank you,

Erin

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Comments

chiarieds

Hi @erin98 - I'm just picking up on your mention of 'dislocations,' & wonder if you might find a solution as far as your fingers go here: https://forum.scope.org.uk/discussion/64442/silver-ring-splints-to-stabilise-fingers-thumbs-helping-many-conditions

This is, of course, not in time for next week if you consider this & go through the NHS, but perhaps something to look into. I have the hypermobile type of Ehlers-Danlos Syndrome, & have been using one of these silver ring splints for over 5 years. I can also identify with low blood pressure problems, unfortunately!

I hope all goes well with your appointment next week, & hope other members will say about their experience. Kindly let us all know how you get on.

janer1967

Hi and welcome to the community

I am a wheelchair user full time and was allocated my first chair through hospital physio as I had my leg amputated

However just had bad experience with wheelchair services so decided to buy my own chair instead

But I have heard good and bad experiences with them so think it's just down to who you see

Good luck hope it all works out for you

_witchcore

Hi Erin, I have ehlers danlos syndrome and I can't walk very far at all. Only transferring from my chair to a seat. I had an accident a few years ago and dislocated both ankles, patellas and my right hip. All needed repairing and wouldnt heal properly but I was told there is no point as I would need surgery again every ten years and I'm already at risk of multiple surgeries due to my heart, digestion and bladder being affected. I also have another illness which means that surgery is a risk for me.

I too have problems with fainting. Well not fainting as such, vasovagal syncope due to POTS. I lose my vision and hearing but I'm still conscious. I was worried this would affect the type of wheelchair I could have. Fortunately the panel at WCS decided that as it mostly affects me after I sit or stand up, and in the bath/shower, this wouldn't apply when using a powerchair. I'm not allowed a reclining chair or one that lifts my legs up, and if I get worse I won't be allowed one that helps me to stand up. As far as the wheelchair is concerned it's to help me move around only and I must have someone to help me stand from it because of the syncope.

Regarding walking... I feel like I just have the best OTs at WCS. I've been very lucky. They're strict but understanding. Where I live, in order to get an active user or powered chair you must not be able to walk at all. I couldn't have a self propelled chair as I have osteoporosis in my ribs and also my wrists and shoulders dislocate. The backup chair they gave me is an attendant pushed chair. I was expecting to be told no for the EPIOC as at the time I could walk around inside my home a little bit. My flat was very small and I was never more than a step away from something I could grab onto. I worked in a huge office with massive open space so obviously when I was there, or outside anywhere, it was a lot different and I was a lot more unsteady. My OT had to assess me on my ability to walk around inside, but she said the guidance she had didn't specificy what inside is. So she assessed me on moving around inside in the community and at work... which I couldn't do at all. So I got the EPIOC.

There were other barriers to getting the chair, other than my health... such as my home. The policy in my area is that your home must have a flat entrance or a specialist concrete ramp with rails to prevent the chair tipping. You must have a level access bathroom that you can get the chair into, and if you live in a house you have to have a through floor lift and no carpet underlay to prevent ruching. You can also not have a chair if your mobility problems are solely caused by obesity and no other conditions. I'm sure the criteria is different in each area, like you said, a postcode lottery.

I never thought I would qualify for an epioc due to POTS and still being able to stand and move from my chair but I did. Do you think you will be able to push the self propelled chair? I found it really difficult when I was first given a wheelchair by adult services years ago. It really hurt my joints.

erin98

@_witchcore

I am fully expecting to be refused based on my housing as I'm stuck in an upstairs flat that I can't get my wheelchair around properly. So when they see me walking from one room to another (albeit very unsteady), it's not something I do by choice. Every time I stand and walk to another room, I risk falling and injuring myself so I have to limit myself as much as I can. I even avoid drinking because I can't keep getting up to the toilet. I was actually admitted to a psychiatric ward late last year for a mental breakdown directly caused by the stress of my physical health and unsuitable housing. My mental health improved slightly after the admission but it's already plummeting again. I'm hoping to get into better housing soon, but I was offered supported living only to be told I'd have to give up my job to afford it! It wouldn't be funded by the council unless I was unemployed, and I don't have £300pw to pay for it myself. I only work 14 hours per week, but my job is essential to my mental wellbeing. The council assessed me as needing a wheelchair accessible property but I've been on the housing register for 18 months and those types of houses don't even exist.

Anyway, for the wheelchair assessment, I know I'll be turned down due to housing but I can cope with that because it's not a 'no', and it'll add fuel to my argument for urgent rehousing. My worst nightmare is them saying I'm not eligible at all, or only for a standard chair. The one I've been using is a fairly active chair, and I can only just manage that. I've worked so hard to make progress with my upper body strength after my last OT told me I was too overweight to manage self propelling. I've definitely proved him wrong! This chair is falling apart though, and I can't afford a new active chair. I had a private OT assessment (during COVID when I couldn't get an appointment with my regular OT) saying I need an active chair with power assist, and I've secured funding for the power assist wheels, so it's just the chair I need.

It's reassuring to hear that they may take into account other environments, because I'm in a similar position - I can do extremely short distances inside my home, but I can't walk around at work or any other inside environment. I'll be sure to mention this to them in the hope they take it into account. If all else fails, I'll have to fund my own active chair but I'm not sure how.

Thank you for your reply, it was really insightful and I'll make sure I emphasise how little I can walk in other places too. I really appreciate you taking the time to respond.

erin98

@chiarieds

Thanks for the recommendation, I'll have a look into the ring splints. I'm usually able to just push my fingers back into place but it's painful and very inconvenient! It would be much better if they didn't do it at all. I will definitely come back and update on how the appointment went. As I said in another reply, I'm expecting to be turned down based on housing, but I hope that's the only reason. I can resolve that, but I can't change their mind if it's because I'm not eligible due to being able to walk such a short distance.

Ross_Alumni

erin98 said:

I was actually admitted to a psychiatric ward late last year for a mental breakdown directly caused by the stress of my physical health and unsuitable housing. My mental health improved slightly after the admission but it's already plummeting again. I'm hoping to get into better housing soon, but I was offered supported living only to be told I'd have to give up my job to afford it! It wouldn't be funded by the council unless I was unemployed, and I don't have £300pw to pay for it myself. I only work 14 hours per week, but my job is essential to my mental wellbeing. The council assessed me as needing a wheelchair accessible property but I've been on the housing register for 18 months and those types of houses don't even exist.

Hello and welcome to the community @erin98, thank you for sharing your experience on this thread, I hope the responses from other members have been helpful.

I just wanted to check in regarding this part of your recent post. I'm sorry to hear of how your mental well-being has been impacted by your physical health and housing situation, and that your mental health is plummeting at the moment.

Do you have any support in place for your mental health? Such as any treatment provided through your GP or other health professional. If you feel as though things are becoming harder to manage, it might be worth speaking with them about how you feel to see if they can support at all. Mind also have some resources that could be helpful, such as this one about coping techniques.

Ross_Alumni

Hi @erin98

Just wanted to check in to see how you are? how has everything been going since last week?

erin98

Hi, just an update! Sorry, I've been so busy with trying to find accessible housing but that's another issue.

I had my assessment with wheelchair services and the OT was lovely! I asked if I could be considered for an active chair because I'm so motivated to improve my mobility and get out independently but I just can't do it in the current chair I have. She said I'd be a great candidate for an active user chair and booked me in to the next clinic in February. I'm so relieved because I really needed some good news! I'm not sure if it means I'll definitely get the active user chair but they said they've approved my referral. Does anyone know what happens at one of these clinics? Is it just a case of being measured up?

Erin

erin98

@Ross_Scope

Hi, thanks for the link to coping strategies. I'm often on the mind website but I haven't seen these coping skills so they were really helpful.

I've got a case manager and a social worker so I do receive some support, but my next psychiatrist appointment isn't for a couple of months. I'm going to speak with my case manager and get this moved forward if I can. It's just taking such a toll being in an upstairs flat as a wheelchair user. I have to sit down to go down the stairs and have still managed to fall down them. There's nothing I can do but wait, so it's just about trying to cope until something comes up. Thanks for checking in. I'll update some more after the active user clinic but I'm feeling hopeful.