appropriate suitable wheelchair - not without BRAKES!!

themagpie

Severe MS cognition issues...

I am sure that a registered disabled person should have help to get the right wheelchair - but i feel that no one cares

I sent this to Karma:  

Dear Karmability,

Disappointed with my karma wheelchair - THE BRAKES DONT WORK!

My MS body CANT WORK THE BRAKES!

I have phoned you and was told to call the shop. 

I did that

Nice shop man came and looked and told me that the brakes are designed for side transfer person - so can't be changed 

- even though this CHAIR IS NOT SUITABLE FOR A SIDE TRANSFER PERSON - because the sides do not remove!

And the 'specialist' shop could see that I was not a side transfer person when they sold the chair to me. 

Why would anyone want a lightweight self-propelling wheelchair for independence - if they have to ask someone else to put brakes on for them every time?!!

There was no advice or check list for suitability or safety when buying a wheelchair.

My old wheelchair (probs 35+ yrs old) was found on a skip 25+ yrs ago and has done me very well and still does, but it is heavy (about15 kg) to lift in and out of car - so I have to ask passers by - and I don't mind - more people should become more familiar with disability and learn not to be afraid of wheelchairs (or their occupants) and how to lift chairs etc

I dont even want to use a wheelchair - and shldn't need to if i could have correct footwear made, as prescribed by hosp consultants and physio.

Mt podiatrist told me yesterday that there is now no fatty tissue at all left under big toe joints, or other foot areas, so I am trying to walk direct onto bone with only skin in between - and the pain I feel certainly confirms that to me

As I am still awaiting the correct prescribed footwear and orthotics (years after referrals) to help me be able to walk, I thought I would ask about a new wheelchair.

 I thought it would make my partners life less bad, as he often has to do the lifting and pushing most of the time and also has some pelvic injury. 

The nhs 'lightweight' chair they sent me is 16 kg, heavier than my old one!

I was told I must buy my own if I wanted a 'specialist chair' - I only want to be able to lift it without anyone becoming injured from lifting it for me?!! not exactly 'specialist'..

I found a disability aids shop in next town

We went in and asked for lightweight self propelling wheelchair (for greater independence).

They showed me Karma chair and it looked really cute - it was smaller than others and I like to be able to take less space and not be in way of others if possible.

The large wheels are smaller than standard which turned out to be a bit weird to use... - feels much more bumpy going over door threshold ridges or slight unevenness in pavement or floor etc for example - it has been suggested that the small wheels are likely to be the reason as they do not spread the load like standard wheels

The frame itself feels far less rigid as if each corner is doing its own thing, a sort of 'rickety' feel

The foot rests don't seem to adjust enough, too high up, fixing knees in uncomfortable acute angle position for me, so not suitable to use - better for me not to use at all - I did mention that in the shop but they said i could adjust them to suit...

also harder word for arms and shoulders...

The worst thing which i did not realise was the brakes are too hard for me to use.

 The first time i went to use them, going to a hosp appointment, my hands were pinched between the moving metal parts of the handle

After that, at the next two hosp appointments I did not try to use the brakes myself.

My 4th outing in the chair was to take my partner's grandchildren to the museum - that was when I discovered the truly dangerous nature of the brakes -

As the lifts were not working to top floor, my partner took one of the children up there on the escalator. I waited below and had a little 'wander'. 

There was a slight slope and i tried to put the brakes on but was not strong enough and started to rush down towards some doors

It was very frightening, and i could see the look of horror on people's faces 

In a flash someone grabbed my chair and and all was ok - though I was left feeling very shaken

Why would anyone want a lightweight self-propelling wheelchair for independence - if they have to ask someone else to put brakes on for them?

On recent radio 4 'Your and Yours' prog, they said, about a product 'not fit for purpose', if it was a car whose brakes could not be worked, purchaser would get complete refund - without any further delay - possibly some compensation for my frightening experience of unusable/failing brakes!

The shop man tried to excuse the brakes by saying it was made to suit a wide range of people, so having adjusted then to make them less strong, I would 'just have to put up with not being able to use them' 

This chair is not suitable for anyone in my opinion 

- please can anyone help me? I feel that hospital, shop and Karma dont care - they have my money and now dont care

I need appropriate footwear and appropriate wheelchair please? and someone to listen...

It is all about quality of life - and feel i have none by this neglect

Thank you for your time

Alex_Alumni

Thank you for sharing this with the community @themagpie I'm going to move your post over into our Aids, Adaptions and Equipment category, so it's a bit easier for other members to share their thoughts with you. 

I'm so sorry to hear about the negative experience that you've had with the Karma chair, as I wheelchair user myself, I have some understanding of how important it is to find a chair which it is right for you, and which can be used independently.

I would certainly encourage you to test run a chair as much as you are able to prior to purchase if you are still looking for one. It's helpful to think about the situations you'll be in, and what you'd need to be able to do, and it's not always easy to remember this is you are excited by what you see. Make a list if you can. You could try opening doors, rolling up and down slopes, testing turning circles etc., anything you need to test out.

You mention your partner, and wanting to make life easier for them with less lifting. I wonder if you've considered a needs assessment for some extra support? You can get a referral through your GP. 

Can I ask if you are currently getting any benefits? If you receive the enhanced rate of PIP for Mobility you might be able to lease a more specialist chair for 3 years or more. 

Let us know if we've missed anything, and we'll do what we can to help

Alex

themagpie

Thank you for your advice Alex. My prop is i have the chair now, part paid for it and really dont think it is right for me for all the reasons. I am not on pip and probs staying on older benefits due to my age. I want this chair gone and replaced with right chair - what ever that is. Not sure what happens about money I paid and nhs paid... None of them want to help. I dont believe i shld have been sold this chair in first place

L_Volunteer

You are welcome @themagpie. It is the very least you deserve. 

It sounds really difficult that it doesn't feel right for you. Are you able to contact the suppliers of the chair or the people who recommended the chair for you?

If we can do anything else to help please don't hesitate to let us know. We are all here for you 

themagpie

No one recommended or advised which wheelchair to buy. I had no help at all. I have been informed that Ox Wheelchair service/ Ox Centre for Enablement/ my MS physios should all help me get the wheelchair I need - not just tell me the name of shops. I have been let down by everyone. AND the manufacturer just blame the shop etc, shop blames manufacturer. OCE cant even be arssed to reply to my emails for months - except for one person called Jo who doesn't even know me, telling me that it is a 'maintenance issue' because i bought it!  I have MS. I have no energy left to fight. They know that and treat me like **** accordingly. Despite the fact I have fought for the rights of others for over 30 years, voluntarily, and the MS was triggered by a physical assault as i was working for the rights of 26,000 local people to keep their access to local swimming pool and health centre - there seems no one left to speak up for me

Alex_Alumni

Hello @themagpie how are things since you last posted? I can hear how let down you are feeling, it must be so frustrating. 

I don't know if you've looked into whether there has been a breach of consumer rights, if not disability rights, it might be worth exploring as you mention the example with the car and it's brakes not working. I'd encourage you to contact Citizens Advice who may be able to help, or signpost to someone who can. 

VoiceAbility are an advocacy service which you may also find helpful, they focus on issues around health, care and wellbeing.

I'm sorry to hear about the circumstances that led to your MS being triggered, and I'll send you an email about this from community@scope.org.uk a little later today.

I hope the community can help support you in some small way, so please reach out here if you need to. 

Tori_Scope

Hi @themagpie How have you been doing over the past week?