My Moans

Electric Wheelchair Assessment: Being Told What I Do & Don’t Need As I Obviously Don’t Know My Own Disability!

3 Comments / Disability, My Moans / By Cazbarr / 17/11/2020 01/09/2022

Electric Wheelchair Assessment – Being assessed for disability aids is stressful enough, to say the least. When you’re faced with someone who is telling you what you do and don’t need due to your disability. This can be soul-destroying, frustrating, belittling and extremely angering! This was how I was made to feel when I was being assessed for my Electric Wheelchair!

I have been a full-time wheelchair user for over 15 years and I’ve had my disability (Arthrogryposis) since birth. I do believe that makes me an expert on MY disability, not anyone else!

My Assessment

Having had my previous electric chair for over 5 years, I was due to have this replaced. I, therefore, needed an assessment for a new wheelchair. This would be done at my NHS wheelchair service.

At my assessment, I was happily told by my clinician that I would be having the “Invacare Fox” wheelchair! This decision was made without any discussion with me. (This immediately set the tone for this assessment)! How did this decision get made without discussing this with the person who was actually going to use the wheelchair and finding out first, if anything has changed? Is this not the point of an assessment?

My clinician’s attitude was that of excitement as she totally believed The Invacare Fox electric wheelchair was the one for me. She brought the wheelchair out to me and immediately expected me to be as elated as her. Instead, I could tell immediately, this was not the chair for me!

I went with the flow and got into the chair. I told my clinician that the footrest hangers were digging into the side of my knees. Not a problem she said, this can be rectified by adding some padding to the shoulders. I explained this had been done on a previous chair and it only made matters worse. (I still have the indentations in my legs) and I showed her these.

She seemed put out and went on to say we could put cushions down my side. (Between me and the armrest guard). Again, I explained this would not be suitable as I self-transfer in and out of my chair regularly. The cushions would fall to the floor repeatedly and as I can not reach the floor, I would not be able to retrieve them.

Problem After Problem

The issues being presented, included armrests not being height adjustable, to which she claimed having one shoulder higher, will cause problems in the future. (So, the fact I need one arm higher to keep my back straight, to prevent pain is not relevant?) 15 years down the road and I am still not suffering any pain in my shoulder!!

She explained that another type of armrest could be fitted if I really wanted them height adjustable. Errmm I don’t “want” them I told her, I “need” them to be adjustable. I wasn’t willing to accept the chair until she confirmed the armrest could actually come adjustable. Guess what? They didn’t! Thankfully she didn’t mention sticking cushions to the armrests to make them higher!!

The backrest of the chair was tilted backwards and unable to be repositioned. Which meant I would be slightly reclined sitting in the wheelchair. Again, I need to be sitting as upright as possible, to prevent back pain. Clinicians response was to have a different backrest. She attached a different backrest that was one of the options for the chair. This backrest was completely uncomfortable and prevented a full range of movement.

So once again, rather than give in to the fact that this wheelchair was completely unsuitable. She suggested using cushions with the original backrest. She likes these bloody cushions!!

I was getting really fed up now, I told her that I would definitely NOT be having this chair. She banged on about not having any other suitable chairs for me and that budget didn’t allow for anything else. I said she (wheelchair service) had a duty of care to make sure any wheelchair supplied to me fits my needs. This chair didn’t, so she was going to have to sort it out.

Second Assessment

As you can imagine, I was both disappointed and furious leaving my so-called assessment. When I got home, I phoned the wheelchair service to explain what had happened and requested another assessment, only this time with someone different.

Thankfully this is what exactly happened. I had an assessment with a different clinician. A lady I had dealt with many time previously and a sales rep from presumably one of their suppliers.

I was shown one wheelchair, unfortunately, it escapes my memory as to what it was called. This again was not suitable, the footrests were causing issues and no alternative option available for the chair. They then showed me an Invacare Spectra XTR2. When I sat in this, I immediately felt the difference. I was then told this particular chair came with tilt and recline. This would make all the difference for my back. (My Spectra XTR2 Review).

I rode it out to our car in the car park to make sure it would fit, (we had a Vauxhall Astra Sports Tourer at the time) and already had car ramps for my chair I was using at the time. Took a little while but we worked out how the chair would fit in the car. It was agreed that this chair was the most suitable for me and I could expect to receive the chair in a few weeks.

Attitude Is Everything!

Attitude is indeed very important. Here I was, having a supposed assessment for an electric wheelchair and I was told the decision had already been decided (without me) as to what chair I was going to receive!! No wonder I was peed off!!

My clinician came across like she was hell-bent on the fact that the Fox was the right chair for me and took whatever measures necessary to make it work. It didn’t seem to matter to her if this made my life more difficult and/or painful!! Trouble was, her solution was always the same, stuff a cushion there and problem solved.

Unfortunately for her, her attitude regarding the chair and me put me right off from the offset. I knew very early on that this was not the chair for me, so for a quiet life, I switched off and just went through the motions until I knew I couldn’t take anymore and decided to tell her so!

Conclusion

We all know how bad funding is in the NHS but this is NO excuse to decide what life-changing equipment a person is GOING to have BEFORE even discussing it with the client/patient etc.

I’ve had my fair share of sales-people try to force disability products onto me and I have learned the hard way to stick up for myself and this was why I said no to the Fox. I practically demanded another assessment with someone else and If I hadn’t, I may have ended up with a wheelchair that would have caused me no end of trouble and even severe pain in my back. Don’t be afraid to stand up for yourself. It is your health, your body that will be affected if you don’t.

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Disabled Toilet Blue Badge bay and radar key

Disabled Facilities: Do You Abuse Them? I Bet You Have!

2 Comments / Disability, My Moans / By Cazbarr / 26/08/2020 20/05/2023

Disabled Facilities: Do You Abuse Them? I Bet You Have! – Disabled facilities are there to help disabled people achieve the same daily tasks able-bodied people take for granted. By abusing these facilities, you are preventing us from living our daily life as you expect to live yours…..Without fighting for your basic human rights!!

Disabled Toilets: How Many Times Have You Used One?

My life as a wheelchair user is difficult enough with the barriers I face on a daily basis. Shops I’m unable to enter due to lack of access, card readers too high/too far back to reach when paying for my shopping, people leaning on my wheelchair like I’m some sort of leaning post, derogatory comments etc, the list truly is endless.

Disabled Facilities: Do You Abuse Them? I Bet You Have! - Disabled toilet fitted with handrails, changing table.

So when I need to use the toilet and an able-bodied person walks out of the disabled toilet, I’m angry, why? Well, one of the reasons is I suffer from IBS, it is one of the most unpredictable illnesses I suffer from. The urgency one feels when having an attack is frightening, so when you are made to wait for probably the only disabled toilet available and a non-disabled person walks out, why wouldn’t I be furious?

I have been close more times than I care to mention to having an “accident” because someone’s selfishness has made me wait for a disabled toilet unnecessarily. Who wants that? I certainly don’t, especially when it could have been avoided!

Changing places toilets

Changing places toilets are important to many disabled people as they have a changing table for those that need assistance going to the toilet. This is obviously much more preferable than having to lie down on dirty, wet, urine-stained flooring, which is what has to happen if a changing places toilet is not available or present. You really would be disgusted and angry if it was your child or family member who had to lie on this kind of filthy flooring.

Most standard Men & Ladies toilets have more than one cubicle/urinal for use. To use and take away what is normally the only disabled toilet available is not only selfish but inconsiderate to those of us that have medical reasons for “needing” to use a toilet urgently.

Please in future, be more mindful of which toilet you use.

Disabled Parking Bays: You Will Only Be Two Minutes, So It’s OK!

Disabled Facilities: Do You Abuse Them? I Bet You Have! – I’m fed up with the number of times I’ve been told, “I’ll only be a minute”, “I’m just popping to cash machine, I won’t be long”!! I don’t care how long you will be!!! IT IS ILLEGAL to park in a disabled parking bay without a blue badge. Currently, the average fine for parking illegally in an enforceable disabled person parking bay is £30 which can rise to a maximum of £1000. Personally, I don’t believe that’s much of a deterrent!!

Rule 241 of the Highway Code says:

You MUST NOT park in parking spaces reserved for specific users, such as Blue Badge holders, residents or motorcycles unless entitled to do so. Source: www.gov.uk – Highway Code

Parking in a disabled bay illegally can mean the difference between me completing my task, shopping, Dr’s/hospital appointment, attending a meeting or having to turn around and go back home again. There have been numerous occasions where I have had to go home without being able to do whatever it was I set out to do and that is the key here, not being able to do what I want/need to do!

Your selfishness and inconsideration have a detrimental effect on my daily life, you can not begin to understand the strain my body goes through when I have to get in/out of my wheelchair to get in/out of the car. Not once but 4 times just to do one trip!! It can take up to 2 days for my body to recover, so no, I am not tolerant of your behaviour……Why should I be!!

I wonder how tolerant you would be about these inconsiderate actions if I were the one telling you that “I will only be a minute, just popping to the cash machine”, or “I’m just dropping this letter off”? If this was a daily occurrence in your life, how accepting would you be?

Wheelchair Space on Buses: You Didn’t Fight For Them, Yet Happy to Prevent Those That Did From Using Them!

Disabled Facilities: Do You Abuse Them? I Bet You Have! - Sign explaining wheelchair has priority.

Well, where do I start with this one? Oh yes, disabled people fought and fought for these spaces, year after year, after year until finally, we succeeded. Then, along came buggy pushers and thought it quite acceptable to use these spaces when a wheelchair user needs it, you know, the ones we disabled people fought for! The space has that lovely big blue sticker stating priority wheelchair area. Exactly!!!

Where were all the buggy pushers when we were fighting for this space? Hmmm? exactly! Yet now the hard work has been done and the wheelchair space is now implemented, you are happy to take advantage of the wheelchair space provided for wheelchair users!!

Now don’t get me wrong, I really have NO objection to buggy pushers using this space, IF ONLY YOU WOULD MOVE WHEN NEEDED BY A WHEELCHAIR USER!!!!! The problem is that quite a lot of you buggy pushers REFUSE blankly to move……The signage is very clear in it’s meaning!! You are more than welcome to use the wheelchair space if NOT NEEDED by a wheelchair user. If it is needed, you MUST MOVE. It really isn’t rocket science you know.

It really does infuriate me when this happens as we wheelchair users only have ONE place we can use on a bus, buggy pushers have other options available to them if they so wish. You are basically taking away our right to travel as able-bodied travellers would expect to travel.

Legal Battle

Mr Paulley successfully sued FirstGroup at Leeds County Court for unlawful discrimination against him due to his disability. However, First Group appealed and the case was finally heard by the Supreme Court. On 18 January 2017, it made a landmark ruling that bus companies must end ‘first come, first served’ policies and do more to cater for wheelchair users. Read more: Equality and Human Right Commission

Conclusion

At the end of the day, like it or not, disabled people are not looking for “special treatment/services”, we just want to be able to live our lives as independently as possible and that does mean adjustments need to be made to standardised services.

Simple example. If your vision is not 20/20, what do you do? You visit an optician to get your eyesight tested, yes? If it turns out that you need glasses, you get them. So why should it be any different for someone who’s legs do not work to not be allowed to use an adapted toilet? How would you feel if you were told you couldn’t have/wear the glasses you “needed” to perform your daily tasks???? Think about that one!!

Disabled people are told daily, they can’t have this, can’t use that all because some of you are too selfish and self-important to even try to understand why we “need” these adaptions.

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