davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)


The other day I received a letter letting me know that Kent and Medway Wheelchair Services is being privatised (they were worried about this happening when I went through the system last summer). Now in theory it shouldn't make any difference to the service I receive, but, as I noted on Twitter, it does mean someone now expects to make a profit out of my needs/my wheels.

Today the new franchise holder followed my twitter account. Now admittedly it's a new account, but they're following a grand total of 7 accounts, only two of which are individuals, and the other one is Tanni, aka Baroness Tanni Grey-Thomson, parliamentarian, multiple paralympian and the most famous wheelie in the country.

The scary thing is I didn't mention where I lived. They must have pulled it out of the #wheelchair stream from a week ago, figured out I was talking about them and made a note to follow me once their account was up.

Of course that's not remotely likely to intimidate someone from freely discussing the service they depend on.

Nope, not one bit.

(Well, not if you know me, but other people...)

davidgillon: Illo of Oracle in her manual chair in long white dress with short red hair and glasses (wheelchair)

Distance covered yesterday, c 900m there with a descent of 24m in the first half, pretty much braking all the way - I've reached a landmark and worn my first pair of wheelchair gloves through to the gel on both thumbs. Hands were unpleasantly hot by the time I'd slowed onto the level!

c950m back with a 22m rise, 2m of which happens in about 10m on a corner. I'd have to choose a different route if I couldn't get out and push those 10m. I in 5 is not practical. But apart from that I pushed it non stop, if very slowly in places. I did have the traditional little old lady asking if I would like a push, but she did it aboot 10 feet from the crest of a slope, and there's a straight 150m with a slight descent immediately after, so of course I whipped by her as soon as I crested it.

So total distance about a nautical mile, which I think is the furthest I've pushed apart from the couple of days in Athens (and that was all downhill).

What taking the two slightly different routes confirmed is that I have substantially more difficulty on cambered pavements, and that my left arm is only capable of getting me up a kerb with difficulty. Because of a car being awkward, I ended up doing one slope on the opposite side to usual, The side I usually do it on has flat paving, the opposite side has the same slope, but is steeply cambered, it was far more difficult than it normally is (this is where I had the little old lady intervention). It's not simply a matter of me, though, the new chair isn't great at holding a line on a cambered pavement, it has a strong tendency to turn into the slope. The clown chair was  just as bad, the GPV, with cambered wheels, made it not an issue.The particular problem I have with this is it means I need to brake with the uphill arm while pushing with the downhill, and if my dud left arm is the downhill one, this is massively less than ideal.

I rang Wheelchair Services on Friday to say I definitely need a 3" cushion as discussed (and noted) at the handover, the seat to footplate gap is too short otherwise and my legs aren't flat on the cushion. I strongly suspect they measured me while I was sitting on a 3" cushion. I'm currently using the 2" they gave me, with a 1" I had in the house under it, which makes the difference between being in intolerable pain within an hour or so, and being able to sit for at least three hours.. Apparently fixing this will need one of the therapists to ring me back and discuss it. I'll raise the camber issue at the same time. I've checked the manual and the XLT can have cambered wheels, but you need an extra part in the wheel mounting to accomplish it, rather than just adding a couple of extra washers as on the GPV, so that'll probably need to be ordered in if I can get them to agree to it.
 


New chair!

Jul. 7th, 2016 05:06 pm
davidgillon: A pair of legs (mine) sitting in a wheelchair (GPV)
New chair! Picked it up from Wheelchair Services this afternoon.

Far better than the old chair, you can tell that the moment you start to push, but with a couple of minor niggles. The back is higher than expected, nearly as high as the old chair, where I have to use it folded, but as it's the correct width, that isn't quite such an issue. And the cushion set-up isn't ideal, the lower part of my thigh isn't properly supported.

We've agreed I'll give it a couple of weeks in the current setup before doing anything, but if I want they'll chop the uprights and push handles off level with the top of the upholstery and/or swap me to a three inch cushion rather than the two inch they've given me. I'm pretty certain after sitting in it for a couple of hours and getting uncomfortable that we will be going for the three inch cushion. I've temporarily added a one-inch underneath and that seems to be better, but I can't really tell if it's a complete solution until the discomfort wears off and I can start from scratch.

Getting it into the car is slightly more complex than the old one (cushion off, skirtguards off, fold back, wheels off, lift), and needs part of the back seat dropped as my boot is tiny and it's a rigid frame, but the weight to be lifted is trivial compared to the lump that was the old one.

Side-on view of a rigid framed wheelchair

davidgillon: Illo of Oracle in her manual chair in long white dress with short red hair and glasses (wheelchair)

I was actually planning to ring Wheelchair Services today and chase them up about my new chair, their 65 days to deliver being about up, but they just rang me to say I've an appointment next Thursday to pick it up.

Finally!

* Yes, I'm like a kid with a new bike.

davidgillon: Illo of Oracle in her manual chair in long white dress with short red hair and glasses (wheelchair)

Having bought a set of hex keys (thanks to [personal profile] kaberett for the Gorilla Grip recommendation) I finally took the eBay chair apart and put it back together to suit me (well, as much as a chair two inches too narrow can be made to). Hopefully it'll no longer wheelie if I breathe in too sharply, and both the brakes now grip the tyres, rather than just one and a bit.

Took the upholstery off too, and gave it a bit of a clean. The back definitely seems to have been meant for a chair with a back twice as high, and there was so much dirt and leaf litter in the velcro I think they must have been using it on a farm! I've left the side skirts off for the moment, they were being forced outwards by the cushion I'm using, so weren't really working and I think the extra bulk at the back was making the upholstery fit worse - both they and the back had padded sleeves to go over the uprights, and you could only use one at a time, so the other ended up folded under.

The front castors still need either replacing, or a new set of tyres, but hopefully I should be able to use it now without it wheelie-ing every time I try to go up a kerb cut or wheel up a slope. Which does not help!

And hopefully Sods Law means Wheelchair Services will promptly ring me to say the new custom-built titanium chair is ready to pick up ;)
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)

2nd wheelchair appointment, not quite as good as the first one, but okay.

Not helped by them running an hour and a quarter late, and me being half an hour early. Though fortunately that meant the three hail showers had blown through before I needed to head back to the car (doubly good as I'd left my coat in the car).

It was one Kent and Medway Wheelchair Services wheelchair tech and a local wheelchair dealer in a consultancy role (apparently they'd got him in to advise on one particular patient and were running as many past him as they could while they had him).

The negative was that they took the Quickie Argon off the menu right at the start, no explanation beyond 'unfortunately we won't be able to supply that one'*. OTOH they did offer either a Quickie Life or an Invacare XLT, both of which I was able to take a look at. The difference is the Argon was an L-shaped frame, the Life and the XLT are box frames, the Argon might have sat on the passenger seat in the car, the Life and XLT will have to go in the boot, almost certainly with at least one rear seat folded, but seeing as I never use the rear seats and can waddle between boot and driver's door that isn't an issue.

I was amused they apologised for having the XLT set up as 'a bit of a grannie's chair' (height adjustable push handles and armrests), it looked much better with them off. They were completely on board with my preference for a rigid chair, which took the folding version of the Life off the table, and in the end they left the decision to me, which basically came down to weight. The XLT was just slightly lighter with wheels on, and much more noticeably so with wheels off - advantage of a titanium frame. I was tending towards the XLT anyway, but asked their opinions and both said XLT.

I suspect I'm not going to get as good a cushion as I hoped, because I'm not a full time user and not high risk, but the tech did say I should come back to them if I was having issues and I'm willing to buy a good one if needs be. Interestingly the tech confimed my pelvis is twisted - he asked about spinal issues such as scoliosis and I pointed out the right knee forward of the left thing, which he'd already spotted. He got down on his knees and had a feel and confirmed it's twisted both rotationally and in elevation when I'm sitting, though I'm not certain which side is high - if it's right then I've got even more of a leg length discrepancy than I thought as subjectively it's my left leg that's slightly short.

I was chatting with the dealer while the tech went off to get the order forms, and he pointed out that even though the XLT was lighter, the castors on it were much heavier than those on the Life (6"x2" vs 6"x1" - very apparent when you tipped the chairs up and felt the momentum when you let the castors swing around into your hand), plus the narrower ones will have a lower rolling resistance, so we opted for those when speccing it. He also noted the Life is more expensive, but he always offers the XLT first to his customers.

They were a bit surprised I'm only a 16" seat width when they measured me up, apparently I look chunkier than that. There wasn't a great deal of customization to be done, but they were willing to work with me on that, skirt guards vs arm rests, narrower castors, and my choice of colours - I went for the sandblasted titanium, up to two weeks longer for delivery, but it's not going to chip, and pneumatic tyres vs solids. The only thing the tech balked on was folding push handles (which the dealer pushed for), apparently they're a repair problem, so I had to settle for low-profile instead.

Their standards are it should be available within 65 days at the outside. I'm not sure if the two weeks extra for the frame gets added on, but they seemed to think it should be noticeablely less than that, so hopefully by the start of July at the latest I'll have a decent active user chair.

* I suspect I ran into the difference between an OT concerned about maximising function, and a wheelchair tech concerned about minimising budget, and different interpretations of the fact I'm not a full time user. Seeing as I was surprised to be offered the Argon and I'm ending up with about what I'd hoped for beforehand, but in a titanium frame, I can't complain too much.

davidgillon: A pair of legs (mine) sitting in a wheelchair (GPV)
I've just been looking at the mail that piled up while I was away. If you exclude magazines, about 30% of it is for hospital appointments.

Admittedly two of the three are for the same appointment, just one of those was for the date I had to reschedule through not being at the same end of the country. And the final version of that one, tomorrow's appointment to look at my infected toe, is quite likely to lead to further appointments if they don't sort it out on the spot, which I suspect they won't when I point out I had problems with wounds reopening after last year's gall bladder surgery and that hypermobility complicates local anaesthetics. If they do it on the spot, great, but I suspect they won't, and then there's potential follow-ups.

The other is the second wheelchair assessment appointment, and I know that I'm due at least one more after that. The good news is I didn't expect it so quickly, it's for the 26th, and they knew I was unavailable until the 14th, so given I was warned it wouldn't be fast, but it was then upgraded to 'high priority', that suggests that their high priority actually is pretty fast. Of course then they have to build the thing....

It's good these things are getting done, but they are complicating life. I had to shift my fortnight in Durham because of the first wheelchair appointment, which combined with my sister's already booked holiday meant she and I couldn't see a solicitor together while I was there to start the power of attorney process for Dad (which is likely to turn into the Court of Protection process, hence solicitor from the outset rather than doing it ourselves) before the school holidays ended and she's back to being unavailable during the business week. That's the second time it's happened, and I've had to tell her to do it herself when she next has an opportunity, because I just can't guarantee to be available.

Fingers crossed for no more unexpected ones, but my neck and shoulder do show potential signs of being a problem again - the orthopod I'm seeing tomorrow may well be the one I saw about last year's shoulder issue, and he did say it was only a matter of time until I'd be back....
davidgillon: Illo of Oracle in her manual chair in long white dress with short red hair and glasses (wheelchair)

Result!

Within the first 10 minutes the Wheelchair Assessment OT was saying "I think I'm going to recommend we provide you a Quickie Argon". I thought I'd have to fight far harder to get a lower spec chair!

She initially said "as a medium priority", but when she saw how I was using the existing monster she changed that to "high priority"

Apparently that should be another two appointments to sort it - I'm assuming one trial with an Argon of roughly the right size to check precise measurements and then a final fitting with the actual chair. Not certain how long that will take, she implied it wasn't likely to be fast, but that was before she switched to high priority.

She's not recommending an aftermarket back at the minute, but I talked her into a higher back than she was initially proposing - above the bottom of the shoulder blades as opposed to below it. Nice attention to detail/local issues as well, when I said I'd be spending most of my time in Rochester she said "Ah, cobbles, need a wider front tyre on the castors to avoid getting bogged down".

*And she said Helium not Argon at one point (c£2.5k vs c£2k), but I think that was just a slip of the tongue.
 

It's been a long afternoon, though. I left for my Wheelchair Assessment at 12:10, I got back home at 5:45 (it's a 10 minute drive). I actually got into the appointment 10 minutes early (apparently there was confusion at their end as to whether the appontment was 11AM or 1PM, but my paperwork clearly said 1PM), but they used up pretty much the whole allocated timeslot as well.

The rest of the afternoon I spent in A&E, seeing as a) I was up at the hospital anyway, and b) my infected toe was a bloody mess this morning. I was actually triaged almost immediately, but then had to wait until almost 5 before being seen. They were excellent once they had their hands on me, but the problem seemed to be they only had one nurse practitioner running the minor injuries section and deciding on the treatment her minions needed to implement and she was run off her feet.

 

davidgillon: Dina Meyer as Oracle, sitting a manual chair in front of a clock face (Wheelchair)
I have my assessment with Wheelchair Services coming up a week today, so I'd appreciate any thoughts on stuff I should make sure to mention. The aim is to get them to supply a rigid framed manual with ideally a Jay back. I think I can demonstrate the current chair is inadequate, but the risk is they might just throw me a voucher for part of the cost.

Current thoughts:

Shoulder stuff
1a) Hypermobility shoulder issues causing problems with pushing the current chair with back erect, never mind with armrests fitted. The instructions are to take all of your chair with you, I plan to take the armrests in a bag on my lap because there's no way I'm pushing with them fitted. They came off the chair within the first 10 minutes. And I'm also going to have the back folded down (see icon!) to demonstrate its width is an issue in changing the way I push - medical appointment as performance art.

1b) Hypermobility shoulder issues/neuro issues and the extreme weight of the current chair for lifting into and out of the car, which I'm generally doing single handed because my left arm is so screwed it's easier to do it with right alone. I switched to the chair because my shoulders were getting iffy for crutch use, straining them lifting the chair instead isn't a positive move.

1c) Hypermobility shoulder issues/neuro issues and general pushing issues. My left arm is measurably weaker than my left, and that's a problem that gets worse the more I push. It's particularly a problem with the current chair on Rochester's cambered pavements as it won't hold a line and often I'm reduced to braking with the strong arm and pushing with the weak to try and get it to go straight. I know that's not a factor on a rigid framed chair with cambered wheels because I've used one and specifically checked that.

2) Hypermobility pelvic and hip issues and seating difficulties. Not so easy to draw attention to, but I'm definitely going to be talking about having had my hips sublux when the chair flexes under me on something as simple as a kerb-cut, and about two days on Athenian cobbles irritating my SI joint to the point I couldn't stand for more than a moment or two for six weeks. And that I've had the opportunity to try a rigid chair over the same terrain and that a rigid frame makes it a non issue. Any suggestions for also pressuring them for a better cushion than the £20 lump of memory foam they supplied gratefully accepted!

3) Hypermobility and back issues and seating issues. Need to emphasise that I'm not getting enough support from a low-backed chair, that I'm only using the chair that way because it's worse with the back up and with the back down it's only viable for an hour or two, and that if I need to sit without pushing then I have to have the back raised, but  that even then I'm supplementing it by using a thin seat cushion to make it more rigid (and I could really have done with a headrest too on that train journey last week). I may need to bring up the problems I had with seating at work, but I think the trick here will be avoiding them saying 'That's a work issue, therefore it's Access to Work's problem, not ours".

4) Leg length discrepancy - when I sit in the chair my right knee is visibly further forward than my left, it's difficult to measure, but it looks to be around an inch. I'm not sure if that's an actual leg length discrepancy, or if I'm consistently sitting with the right side of my pelvis twisted forward. If the latter then clearly it's an issue for Wheelchair Services, if it's the former it would be nice to get it confirmed so I can point it out to my GP as possibly a factor in my ongoing pelvis/hip issues.

5) General usability. The current chair seems to be explicitly configured to make it as difficult to wheelie as possible. That's all very well for a pensioner who only goes out with someone to push them, but I'm independent, active, and invariably on my own. I need a chair I can wheelie up kerbs without having to push so hard to do it I throw myself over backwards. And while they're at it actually giving me some training in using it safely would be nice!

Possibly also worth mentioning, intermittent problems with bendy left thumb interfering with pushing.

Any and all additional thoughts gratefully received.

(I've also had an email from them, I suspect all of their clients have, asking if I'm interested in being a patient rep on their board. I'm tempted, but I suspect I'm their nightmare candidate).
 

davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
 Wheelchair Services finally convinced to assess me 18 months after first approach.

But they won't take my word for my issues, and want evidence from my GPs.

This means sorting out just how screwed up my medical records are just got more urgent, and further complicated by old GP retiring and never having discussed physical disability stuff with the two new GPs.

This week was already going to be busy :(

davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)

I have, after 9 months, managed to send off a request to Wheelchair Services saying assess me, dammit!

It took so long my GP, who told me to send it, retired between the first draft of the letter and the final one. Fortunately the new one agreed too.

Now I just have to wait and see if they turn me down flat like they did the first two times. Though I think 'your wheelchair* is so utterly inappropriate it's making my disability worse' probably ensures they'll have to do something.

*Yes, they refused me an assessment, but dumped the cheapest of cheap wheelchairs on my doorstep.
 

davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
'Daddy, why is that man..."

First time for me, I was past too quickly to hear the reply, but I hope it was disability positive.

Ordered the special for lunch at my normal Saturday place, crab and chervil risotto, annoyingly it took them an hour to come back and tell me the crab was off (literally, not just off the menu) and did I want it with prawn instead (which was actually really nice). Somewhat worryingly I had to parse what I was being told by inference. I heard the start of the sentence, I heard the end of the sentence, the words in the middle of the sentence went into my head, but I just couldn't understand them. Second time that's happened this week :(

Also seen in the restaurant, a family clearly headed down to the marina afterwards, with a toddler, and the cutest patterned lifejacket sitting on her pushchair :)

A friend I haven't seen in a while saw me through the window and came in to chat. He's just back from walking 500 miles of the Camino de Santiago, the pilgrimage route to Santiago de Compostela - only took him six weeks... don't really see me bothering! He's a bellringer, so was fascinated by the huge swinging censer in the cathedral, which apparently takes 8 men to get it up to speed, I hadn't appreciated it swings low enough over the congregants they're advised not to stand up!

And then back to the car, with my left arm not entirely happy at the pushing - that's the side where I had/have the cervical disc protusion and using the chair is showing up that it's clearly not as strong as my right arm, which annoyingly means there are days where I'm having to lift all 15+kg of the monster into the boot one handed... Still, it's another issue to hit Wheelchair Services with.
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
 Okay, I've got myself into a place where the brain-weasels will let me take another shot at trying to get an actual assessment from Wheelchair Services, as opposed to them dumping the heaviest clunker in creation on my doorstep and running for it. I'd be grateful if anyone with relevant experiences could take a look at the draft letter below and let me know if they spot anything likely to work against me:

"It is now several months since Wheelchair Services provided me with a wheelchair (Sunrise Medical Lomax Uni 8), however after discussing my current situation with my GP she feels that I need to contact you again.

Having access to the wheelchair has significantly increased my mobility over the crutches I previously used, in fact moving around has become a pleasure again, however the chair was provided without an assessment being carried out and Dr T feels that there remain areas which need to be addressed.


Current Situation:

As I had hoped, the wheelchair has allowed me to significantly increase the amount of time I spend outside the house, probably at least tripling it, and I have effectively become a full-time wheelchair user outside of the home. However this still falls short of a level of activity that would allow me to rejoin the workforce and it is clear that there are several areas in which the wheelchair is an imperfect match for my needs. I now have sufficient familiarity with the use of the wheelchair to recognise that these are not simply issues of unfamiliarity.

The primary issue I am facing is a lack of rigidity from the seat of the wheelchair, a consequence of the folding design. While this would not be an issue for most people, I have hypermobility specifically affecting my hip and pelvis, each time the chair flexes it imposes a sheering strain across my pelvis and hips, stressing vulnerable joints. I have quite literally subluxated* my hip as a direct consequence of the chair flexing under me as I crossed a kerb-cut (*subluxation, a partial dislocation, common in hypermobility affected joints), and have had other incidents which have left me unable to comfortably stand or walk for hours or even days due to the flexing of the seat irritating my sacro-iliac joint. It is clear that in the longer term I need some kind of rigid seat base, ideally a rigidly framed chair.

Related to this are issues with the back of the chair and my spine and shoulders. Even if I sit fully back on the seat I find that I am unable to sit comfortably with any part of my back against the chair back, because of my spinal issues I am forced to sit upright and well forward of it. Even with this forward sitting position I find that the back then impinges on my shoulder movement as I propel the chair. Given my shoulder and spinal issues it is impractical for me to adjust my posture to suit the chair, sheer practicality means that I am being forced to use the chair with the back folded in order to be able to self-propel it. For the longer term it appears that I need a chair with a narrower back that can be adjusted to meet my postural needs.

I have had the opportunity to try the rigid-framed lightweight chair used by a friend with similar hypermobility issues on several occasions, this is fitted with a Jay back and headrest and was much easier for me to use, while simultaneously giving me a level of support and comfort in my seated posture I have never experienced, not even with an individually fitted specialist office chair. This appears to confirm that I need a professional assessment in order to determine the configuration of wheelchair seating that would best meet my needs.

Weight is also an issue, the Uni 8 is notably heavy at 19kg, even when compared to similarly positioned chairs on the market. The lack of quick-release wheels means the minimum I can reduce this to is still over 15Kg. I live alone, I cannot go anywhere without lifting the chair into and out of my car, yet its weight is such that it is far from an easy lift even two-handed, and my shoulder situation means that there are days I am forced to lift it with one arm.

I recognise that Wheelchair Services are trying to address people’s needs within a budget, however the particular complexity of my needs has not yet been assessed. I hope that Wheelchair Services can address my needs, but, even if you cannot provide a wheelchair to suit, I need to take steps to obtain a suitable chair, and my best hope of doing that is by first having a full wheelchair assessment from a qualified and independent assessor, I therefore hope that you will agree to provide an assessment.

Yours,



davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
Blog piece by me on what's going on with NHS Wheelchair Services, 'the current intolerable situation' is from the terms of reference of the NHS's own National Wheelchair Leadership Alliance!

Wheelchair Services - the Current Intolerable Situation


Of course they've been trying to fix Wheelchair Services since 1986 (at least), so I'm not holding my breath...

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davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
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