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Seething - Carers UK Forum

Seething

Share your ideas about the practical side of caring.
My urine is really boiling over this, so I'm mainly just sharing a rant.

When my wife was in the neurological ward from Feb to May, one of the things that they said she needed was a different wheelchair, basically one that fits her better than the standard item she had which was fine when she could still walk.

Wheelchair services were contacted by the hospital but they flatly refused to come to the hospital to measure her up, they will only do this at the patients home or on their own premises. (I've still yet to establish a sensible reason for this - the only explanation so far has been "that's just how we work"

When she was discharged from hospital it took me a couple of weeks to sort out several things and I eventually remembered the wheelchair. Several phone calls were needed to establish exactly who had been tasked with the job of supplying a new one but we got there in the end. A home appointment was going to be weeks, if not months in the future, but if we could get to their premises it would be quicker.

This couldn't happen immediately, we had to wait until a hoist was fitted to our vehicle to get the wife in and out. Once that was done I got back in contact with the wheelchair people and an appointment was made for a few days time.

At the appointment many measurements were taken and notes taken about my wife's posture and what corrective support was needed, it was quite thorough and gave me some confidence that they knew what they were doing. They seemed quite pleased that all the parts necessary would be coming from the same manufacturer and said that this would make it a much quicker process, When questioned about that, they said it would be twelve weeks - didn't sound very quick to me for what is not much more than a simple "Meccano" project.

After a mere nine weeks, on 24/8 we received a phone call to say that the wheelchair would be delivered on the 28/8. It wasn't.

After a couple of irate phone calls from me, delivery was re-arranged for 5/9, they even sent a letter and asked us to confirm by phone that we'd be at home to take delivery, which we did. Once again delivery didn't happen.

I've now wasted two complete half days just hanging around for a delivery that didn't happen and my wife still doesn't have the chair that she is so looking forward to.

It now transpires, (after a couple more phone calls this morning) that although they have the chair, they don't have the Matrix back part which will complete the chair.

I don't know what happened to "all the parts coming from the same place and making it quicker"

i also don't yet know why they've twice arranged to deliver an incomplete chair.

:mad: :mad: :mad:
Hi Ayjay,

I'm a wheelchair user. Your situation sounds familiar. I only use a simple ''active user'' manual wheelchair (Kuschall K4). It took years of on/off pressure to obtain (my energy is up and down which makes being a pushy patient a bit difficult)

Mine also took 12 weeks to arrive. I too had to go in for measuring. And that's just for a very simple K4. It looks broadly similar to the one in my avatar (minus the fancy back wheels).

They also palmed me off with a very basic cushion which left me with the beginnings of pressure sores. I took to buying castor oil in bulk, and had to apply it every few hours. My trousers had huge grease marks on the buttocks for months (and I started to leave grease marks behind me when I transferred to seats at the day centre. Hopefully no one realised I was the culprit :whistle: ). After a bit more pushing from me, and some more weight loss (unintentional), I finally got a fairly good cushion with gel in it. (Jay brand, ''Easy'' model) .The difference is significant :)

The whole process really does suck though. In the years that I was being left with rubbish ''granny'' wheelchairs, I resorted to buying them second hand. Which was better than nothing, but it meant they often didn't fit me. Back too low, angle of seat all wrong which meant I kept slipping down every few min etc. I'm sure you know how important it is for wheelchairs to fit (the number of times I've tried to explain the importance of this to able bods, who are not carers of w/ch users..... and been met with ''Can't you just get one from Argos? I've seen 'em for £200'' :evil: ). NO! IT DOESN'T WORK LIKE THAT!

But....it : will be all the sweeter when you finally get what you need. You may find yourself so excited that you start posting photos of it on Whatsapp to (probably) disinterested able bod friends and family :whistle:

Hope you get everything you need soon ;) I'm currently waiting on two new castor wheels. Had to chase the repairs service up endlessly. They finally showed up the other day, with the wrong size wheels (far too big). The guy looked embarassed, but said he didn't know how much longer it'd be.

Well, I hope sooner rather than later. My current castor wheels are sticking, and the chair keeps stopping dead over very minor ''lips'' in pavements. Result? Just the other day it stopped dead, my water bottle flew off my lap, rolled down the street, and right into a big smear of dog muck. It happened so fast I could only watch in horror. Then I glanced up and noticed a bus stopped at the traffic lights, with half the passengers looking on. Cue me trying to act like it's all cool, I'm cool, nothing to see here. :roll:
Hi X_1808

The cushion was discussed at the measuring session and should be a gel cushion when it finally arrives.

The biggest worry/unknown that I have at the moment is will I still be able to fit the hoist sling whilst she's in the new wheelchair. It's not too difficult to do at the moment, but it's hard enough, and doesn't need to be made any harder, and from the brief conversation I had with the poor sap deputised to apologise it's not something that had occurred to anyone there.
I've really grown to dislike matrix frame based wheelchairs with the mould because the thing is just so god awful in terms of bulk in proportion to the size of the user and virtually all public transport will refuse it based on its potential dimensions even though you can raise/lower it a little (its long and can be quite tall)

Also any hospital stay which is serious usually involves changes in body/fat mass through the weight lost and gained before/after illness.. and this should mean a new mould is made for the user but wheelchair service drag their feet because they will actively refuse to fix faults unless they themselves consider something to to be working as intended irrespective of feedback.

The caps 2 was always a superior piece of equipment we lost it because the equipment service basically messed around with it so much, that they actually caused a fault, resulting in near fatal pressure injuries to the user after which it was replaced with the former. Caree was at their most happiest when they had this wheelchair, they could do so much with it.

Pretty disgusting because they can only use the bed and wheelchair, the wheelchair is an absolute lifeline.

There are wheelchair types specific to the disorder main caree has which are proven suitable over other types.. but the boroughs wheelchair team only use a few types of chair to cover all their patients irrespective of health needs etc. So their choice has actually caused increase in physical injury/wear and tear to the user because its inappropriate to their needs.
Hi Ayjay + Honey Badger :)

That's a good point re-will the hoist work. Can understand the tension while waiting.

Re-only a few wheelchairs being used for a wide range of disabilities. Yes, I've picked up on this too, despite my needs being very simple compared to some other users. Words cannot express how relieved I was to finally be taken out of the ''just give him a granny chair, that'll do'' category.

The right wheelchair makes a huge difference. More than I can ever impress upon those who do not use them/have carees that do. I often fantasise about super glue-ing people to wheelchairs, so they can see what it's like. Not forgetting to rub something acidic/alkaline on their bottoms first of course. Needs to be realistic eh?

Ayjay, crossing my fingers for you mate. Because....we all know how effective that is, am I right? :lol:
Ayjay, you might need to get your wife a sling made of a different material. Some of the children and young people at school are reassessed for a different type of sling when they "graduate" to a moulded wheelchair seat. As it's so much harder to tuck the sling under them in a moulded chair, an "all day," sling is often used so that it can remain in position in the wheelchair and not be removed after a change of position.

Melly1
Melly1 wrote:
Sat Sep 08, 2018 3:53 pm
Ayjay, you might need to get your wife a sling made of a different material. Some of the children and young people at school are reassessed for a different type of sling when they "graduate" to a moulded wheelchair seat. As it's so much harder to tuck the sling under them in a moulded chair, an "all day," sling is often used so that it can remain in position in the wheelchair and not be removed after a change of position.

Melly1
That's the problem I'm anticipating, just fitting the sling is going to be so much harder in a close fitting seat.

My wife has an *all day* sling, but:-

a) she doesn't like it and doesn't ever want to use it
b) it has to be changed for a normal sling if she wants to use the commode, have a shower or go out somewhere in the car, which rather defeats the object of an *all day* sling I'd have thought

Every single time I put a sling on her I can't help thinking that there has to be a better way.
An update on the new wheelchair, (and a further rant unfortunately). We were phoned on the 12th Sept to ask if we could collect the new wheelchair at 12.30pm on the 18th, and fairly obviously we said yes.

Arrived early and booked in at reception and waited, at 1.20pm I went back to reception to find out what was happening (if anything), person on reception, ("not my usual job, I'll have to access my own computer upstairs to be of any help.")

About 15 minutes later another person arrived and asked "Didn't you get the cancellation letter?" No, we didn't, (and it still hasn't arrived).

The clinician who was supposed to be fitting the chair had to be sent for from home and the chair had to have the assembly finished as it still wasn't ready.

Having left home at 11.15, we eventually arrived back at 4.00pm, (fortunately I'd taken a couple of chewy bars as emergency lunch rations!)

The new chair is wider and longer than the old one, consequently it needs more room to get around corners etc, much of our furniture had already been moved or had it's position adjusted to accommodate the previous wheelchair, and subsequently also the hoist, there's no more leeway there.

My wife can now not get into the kitchen or the bathroom and will probably commit further damage to all of the door frames and furniture. Lovely.

Going to give it a few days to try and iron things out and then I think we may have to tell them it's just not right, (and it's still not even finished yet as we're waiting for the gel cushion and a pommel).

The sling is not a problem, and that's about the only good thing about it.
Oh Aajay, how frustrating. All that time waiting.

I think they forget that many clients live in regular homes and not in residential homes and institutions. The equipment of some of primary school children is massive so I can only imagine the size of your wife's chair.

Melly1
Melly1 wrote:
Mon Sep 24, 2018 9:30 am
Oh Aajay, how frustrating. All that time waiting.

I think they forget that many clients live in regular homes and not in residential homes and institutions. The equipment of some of primary school children is massive so I can only imagine the size of your wife's chair.

Melly1
It's not massive by any means, but it's both wider and longer than the last one.

I've done some digging on the net about wheelchair specs and fitting them to the user and this new one is at least 75mm wider than necessary. The increments in sizes available for this chair are only in 50mm jumps so it could be 50mm narrower which would take it back to the same width as before.This may or may not be enough to overcome the problems with the extra length. The other problems are the front castors, which at 200mm diameter are huge and make manoeuvring very difficult, (even for me when I've tried it), smaller castors are recommended for better manoeuvrability.

There was no assessment done on my wife's ability to actually propel herself in a wheelchair which I think was a bad oversight, she doesn't have enough strength in her left arm/hand to hold one wheel stationary while moving the other for tight turns.

The Matrx back is the shallow version (there is a deep one) which means that late in the day when she's tired and slumps a bit her back is no longer within the confines of the Matrx back and her posture is all over the place again just as before.

I've telephoned them this morning and left them a list of the problems and will now have to wait for a return call. They did phone back once already and ask for the name of her GP surgery, so at a a guess they want to establish something about her strength/ability to self-propel.

......and the cancellation letter for the last appointment is still yet to arrive.