Personal Wheelchair Budgets

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Re: Personal Wheelchair Budgets

Postby Burgerman » 03 Sep 2018, 19:11

In a capitalist system, its not the manufacturer, or distributors job to police the end retail supplier. They rise or fall on their own merit, as decided by the paying customer and their ability to make a profit at the end of the year.
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Re: Personal Wheelchair Budgets

Postby woodygb » 03 Sep 2018, 19:18

As you pointed out B.M. it's the paying customer ,and here in the U.K. I suspect that the biggest paying Customer is the N.H.S .... I wonder if they even bother haggling PROPERLY for the best deal.

I contend that like many other things... e.g. House Prices ..that there is a vested interest by businesses in keeping prices artificially high by manipulation of the market.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 03 Sep 2018, 19:29

I doubt they know how. Bit like polititions and brexit. Clueless, they couldnt buy a used car and get a deal. They are not business people, they are OTs, Physios, in a socialist medical system.

And in addition, heres how it really works. They favour the ones (reps, companies) that are "nice" to them. The ones with many 1 or 2 day training courses, free exibition tickets to shows in big cities preferably in a foregn country. Its all about bribes but in descrete disguise to make them legitimate to favour specific drug or supply companies, or powerchair manufacturers. Or even powerchair models. All the big drug companies have been doing this stuff for decades to doctors etc. So they prescribe X brand of cancer drug etc... Even the notepads and pens in my doctors are all covered in logos with "X drug company name" written all over them. Small incentives. Its all about marketing their brand so the doctor uses them REGARDLESS of cost. Its not their money.

This heavy promotional stuff also happens in the private external world too, but it IS their money and job on the line so it doesent work to the same high degree. If the boss finds you wasting the companies money you get fired. So you tend to be more careful...

Send a WCS woman on several training courses at sunrise medical or similar every few months, and get her to understand all the seating possibilities and other options on new chair xxxx and guess what they will recomend to the user at every assessement? Especially if that companies rep just sent them on a trip to see the latest launch of a product... With accomodation, free travel tickets, etc. A jolly. And its not THEIR money they are spending is it. And its not their company having to compete in a busy market either. Its typical socialism 101. Thats why it never works anywhere.

Thats also why I now have THREE £2k patient lifts. 2 of which are on service contracts and are checked and assessed every few months. 2 of which I never wanted, or needed, and stated this very loudly! Efficient they are not! :lol:

If the NHS was a private company that had to compete in a capitalist world it would go bust in 3 months.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 04 Sep 2018, 12:29

rover220 wrote:
you dont get that margin on parts, more usually 20% but sometimes as low as 10%

the argin on a new product has to cover the minimum 2 trips to assess and then deliver a chair and it also has to cover the potential warranty call outs that manufacturers dont cover the cost of.

rent alone on our unit is £30k pa, i think you need to re align your expectations


So the joystick I purchased was a part, nothing for the dealer to do and 1 dealer sells at less than £1k another quotes at £2k, that is a little bit more than 10 or 20%

Agreed that there is a service involved in a new chair but you are talking about products that retail for over £10k no VAT, forgot working in % terms and just look at the actual £'s profit. That easily covers the selling involved. Every business has operating costs that is unavoidable ,size of premises needed and location are the factors that influence rent. You don't need a high street location and space is determined by the stock and sales floor area along with workshop space needed. You might have demo chairs but you will get a special deal on them, if you don't have the required chair distributor will loan one. Custom chairs are made to order so no stock there. I do consultancy work in the bike industry, design, develop source manufacturing, order, stock, market and sell and we can't work on margins like that, it is simply too competitive and as BM points out the customer is the important factor, they will only pay what they think the product is worth. Different games but the principle of business remains the same.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 04 Sep 2018, 12:40

Burgerman wrote:In a capitalist system, its not the manufacturer, or distributors job to police the end retail supplier. They rise or fall on their own merit, as decided by the paying customer and their ability to make a profit at the end of the year.


The distributor or manufacturer has a responsibility to the customer to make sure that the dealer provides good advice, service and has good knowledge of the products. Ultimately, yes the consumer is the key to a business surviving but all too often the reason the consumer has used the dealer is that they lack the knowledge to buy direct from the internet. They get advice from the dealer and have to trust them. If a customer is sold the wrong product it reflects upon the brand hence why it is in the brand/manufacturer/distributors interest to do this. For a distributor it shouldn't be about the number of dealers but the quality of the dealer, less can deliver more.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 04 Sep 2018, 12:57

rover220 wrote:
manufacturers once upon a time were selective to who they gave accounts, now it is about volume and supplying as many dealers as possible, there are 5 such dealers within 15 miles of us. they will not listen to one end user complaining if the dealer is shifting stock and hitting targets


A very short sighted approach as you don't get commitment from any of the dealers if there are too many in an area. They need to know that if they carry stock and actively promote a brand that they won't be fighting a dealer a few miles away that doesn't carry stock just takes an order, passes to the distributor and supplied when it arrives. I wouldn't be proactively supporting any company that worked like that, I certainly wouldn't be committing to carrying a lot of stock. Even worse if you build a brand's products then they appoint a dealer next door.

I'm currently working on building a dealer network for one client who distributes multiple brands, they have over 1000 live accounts, for the brand I am working on we want 50/60 carrying a basic stock level and focused upon letting customers demo ride. The dealer investment isn't into stock as we have that and can supply next day, it is into demo bikes and staff training getting behind the brand

Good luck working with suppliers who are just interested in volume!
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Re: Personal Wheelchair Budgets

Postby foghornleghorn » 04 Sep 2018, 13:41

My local WCS has nothing at all available to test drive even if you go to their clinic. Their response to me saying to them it was stupid to order me something I couldn't even sit in first, was that if it turned out to be not right they would just order something else. No thought about the longer they delayed things the more help you were likely to need. It all felt like they were relying on the fact you weren't directly paying for it so were going to put up with whatever you were given when it finally turned up as its 'free'.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 04 Sep 2018, 15:20

I honestly cant see any point in test drives. A tiny seatng, positioning difference of some part, programming differences, or hardware motor or cotroller, or a centre footrest option, for eg, and a minute setup difference change an unusable chair into a great one. So its really no help.

What does matter is KNOWING what you want and knowing what is possible, understanding the effect of these options, configurations, so you can decide what works, then order your best options, and then configure it properly. Only then is a test worthwhile.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 04 Sep 2018, 15:34

Burgerman wrote:I honestly cant see any point in test drives. A tiny seatng, positioning difference of some part, programming differences, or hardware motor or cotroller, or a centre footrest option, for eg, and a minute setup difference change an unusable chair into a great one. So its really no help.

What does matter is KNOWING what you want and knowing what is possible, understanding the effect of these options, configurations, so you can decide what works, then order your best options, and then configure it properly. Only then is a test worthwhile.


I had to test drive before buying, both the Salsa and XTR have backrests that flex and bounce I get knocked around outside or in my van. I wasn't going to spend £13k on a chair that was no better, the most important consideration was that the chair didn't bounce. After that all the rest was as above, configure when it arrives to fit my needs I just used the bits of the Salsa that work for me as the start point.
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Re: Personal Wheelchair Budgets

Postby foghornleghorn » 04 Sep 2018, 16:43

Burgerman wrote:I honestly cant see any point in test drives. A tiny seatng, positioning difference of some part, programming differences, or hardware motor or cotroller, or a centre footrest option, for eg, and a minute setup difference change an unusable chair into a great one. So its really no help.
Can't tell from looking at a few photos in a catalogue that something will be such a pile of shit that even 3 weeks of major adjustments won't make it even vaguely usable. 5 minutes of trying to do things while in a demo one would have saved about 7 months of wasted time.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 04 Sep 2018, 17:22

I have to totally disagree. Looking at good images, specs, options, parts pdf files, measurements, possible configurations, and controller types, motor details and speeds, is all I ever use to buy a chair. It is all you ever need. Everything else is just fine tuning and configuration. As long as it allows you to have YOUR seating position, sensible CG, and your motor/controller.programming options, then every chair feels EXACTLY the same. You dont need to have the chair there to know that.

I have tested dozens at a time at shows, hospital open days in spinal injuries units, etc and the very same chair can be a hopeless pile of crap that you wouldnt ever try again, or superb, depending on options and confiurations and setup details and some minor customization. Trying it would just confirm what I already know from specs and measurements. This is what I meant by UNDERSTANDING what you are looking at and knowing what you need and why.

For eg ALL rear drive chairs, are completely hopeless and simply dont work, or steer, as tested. The OPTION of centre footplate, and moving the sat back tells me that this totally transforms the chair. So testing one is pointless. The thing that matters is if its design allows this. So careful examination of parts drawings, to see if thats do-oable, and options such as 4 pole, 120A PM that I can program, and grp24 battery area, etc is ALL thats needed. The rest are just a bunch of brackets.

***The only time this failed was that brushless chair. Its super heavy duty motors did not have adequate torque. I didnt UNDERSTAND enough about brushless motors and listened to others, reps, etc. They assured me it did. Instead of falling back on facts and knowledge, I took a leap of faith. Always a bad idea. I had to return that after discussions with the manufacturer and it is faulty by design.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 04 Sep 2018, 17:47

ALL chairs are just a seat. And 4 wheels. And some programming.
If the seating position is identical, and the programming is identical and the position of the GG is the same, then if you were blindfolded you couldnt tell the difference in use. Providing same sized tyres, and adequate torque to follow joystick. THERE ARE NO OTHER DIFFERENCES! Unless you think theres some special woo woo in there too.

EG salsa... Tries a salsa at a show. Couldnt be more useless. Un-comfortable here comes my legs, here comes me, seat too flat, etc etc. and completely un-controlleable with the joystick about 4 inches too low/right, and wouldnt turn properly or sometimes at all. Based on that I would just run away. Probably the worst chair I ever tested. So why buy one?

I studied its parts.pdf. Its a basically a groove. Then looked at a few pics. And a prescription form. And askesd a few questions.

I understood from this that to get control, and my own preferred correct seating position would require some minor mods and a custom build.

I understood that I could get my seat height (same as my chairs, bed etc) and my seat base angle, by redrilling a few strategic holes... Easy
I understood that I cound get my seat width by sdjustment. And arm heights. So seating position identical.
I understood that I needed to persuade them to fit the centre drive salsa's powered centre footplate to allow me to relocate the seat further back, to stand any chance of making it the nimble light front end chair I need or it would be hopeless. I figured out that this was possible before ordering. So now CG matches my other chairs too.
This means that I now has the same seat height, base angle, drive wheel, and caster wheel positions as my own chairs. So with similar programming it would feel EXACTLY the same to sit in and drive. Before ever testing one in this configuration.

IN ADDITION:
I understood that I could at extra cost swap out a crappy 70A controller for a 120A one that I could program.
I choose 6.2mph 4 pole motors, over B.F.ME 8mph ones, because I cannot live with the 25% loss of torque, and even considered the 4 pole HD motors but couldn cope at 4mph! At extra cost over the weak 2 pole. So it would follow the joystick. Like my own chairs do.

I understood that the wobbly swing away would be useeless and put the joystick totally on the wrong place and that I would need to sort that out. Done! 2 hours work before ever sitting in it. Same as my oher chairs

I understood that the lift up arms are too weak to lift on, and wobble side to side, so no control once programmed, and so I changed the spec to use solid strong single post arms. Now I had accurate control, but still doesent turn quite properly yet.
I chose 80Ah batteries over 60, as the 60s wont give adequate torque, and will swap for lithium ASAP anyway. Which will increase speed to 7.x mph with programming voltage changes.
I chose 10 inch casters, same as my other chairs and didnt much care what drive wheels as they would be replaced with tubeless 120/70-8 anyway.

So I ABSOLUTELY knew its seating position, and every other detail, once configured and programmed, would match all my other chairs in seating position, seat angle, seat height, footrest position, performance, and programming controllability, CG, position etc etc. It would drive and feel exactly the same as my current chairs.

I could have done pretty much the same for any chair. Testing without all that above done, and configured correctly simply shows me its different to what I need. And so much wrong it feels terrible. And unusable. And once it IS done, every chair is the same!!! My Salsa feels pretty much identical to the BM1, BM2, etc. Since once configured CORRECTLY it is all the same in every parameter -- everything that you feel and drive. The chairs brand, or colour dont change any of that.

I also chose tilt, recline, to match the centre power footrest, as well as lift. Because while this adds a ton of weight, I have pressure sore issues, and no longer have a lift chair kicking about for certain jobs... But thats irrelivant here.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 04 Sep 2018, 17:59

I know what I need, a chair with a backrest that doesn't flex or bounce, the only way I can find this out would be to physically test and see how well the brackets work. I created a thread here a while ago about my Salsa and found out that it used plastic bushes and was a bad design (thanks Rover220).How can you tell that from a parts book? I can't do any modifications myself, OK, I'm a higher level injury than the majority so whatever I buy needs to be as good as possible. It would be different if I had your degree of mobility but we aren't all the same so our needs differ as well. But this is why we need PWB and good dealers who can help make sure that we get the right options and know what is available as some manufacturers have great marketing and little technical documents.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 04 Sep 2018, 18:28

I created a thread here a while ago about my Salsa and found out that it used plastic bushes and was a bad design (thanks Rover220).How can you tell that from a parts book?


Rather easily as far as I can see. Looking at it now!

But then those are the sort of minor details you fix because I never found a backrest that didnt move or flex a little. Which backrest are you refering to? Theres 3 or 3, and 2 different powered ones. And what do you mean by bounce? Mine seems pretty solid. And any plastic bushes are easily replaced if thats the problem by brass or whatever. But the back isnt mounted on any plastic bush here.

However, theres no perfect for everyones needs powerchair available at any cost. Disabilities and people are not standardised. ALL of them will need some minor customisation, or adaptation. In your case a few brass bushes? Or a more rigid back post setup? You wont find any 100% ideal stock powerchair.

My backrest for eg, has been modified.
Or fine tuned if you prefer.

1. To take out all the backlash or freeplay. Mostly in the actuator and its mountings. A shim inside, and a one off mounting bolt bar.
2. To increase the amount of recline. Changes to mounting positions. Since I have no need to sit with my shoulders over my knees!
3. Cut short push handles and add rubber protectors.
4. Make sensible headrest mount and throw way 3 feet of scaffolding!

This is fine tuning. ALL of this chair needed this. All of them do.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 04 Sep 2018, 18:45

It is a powered backrest but I don't know which one. Without me in the chair it moves forward and back with a lot of play, with my weight and a vent hung on the back if I go over any bump I bounce forward and back, in the van it is constantly bouncing, head bangs off headrest, really uncomfortable. The potential solution would be to go to a non powered backrest and have it tight, it is unlikely that the chair will bounce. The WCS repair guy said that it would eat plastic bushes and he had people replacing bushes every month. Yet WCS still supply that chair, back to your comments on freebie trips and not their money!

Edited to add the chair on order has not got a power recline :)
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Re: Personal Wheelchair Budgets

Postby Burgerman » 04 Sep 2018, 18:56

Cant see a plastic bush anywhere on mine? Also plastic bushes dont wear? They may flex. But cant see any that are loaded.

It is a powered backrest but I don't know which one. Without me in the chair it moves forward and back with a lot of play, with my weight and a vent hung on the back if I go over any bump I bounce forward and back, in the van it is constantly bouncing, head bangs off headrest, really uncomfortable.


You are talking about freeplay.

Theres some inside the actuator a few thousandths of an inch. Fixed with a shim.
Theres more at the actuator mount points. The majority of this free movement or backlash is the mounts. The bottom mount is intended as a removable pin. Mine is removed. To the bin. I made one that is a tighter interference tap in fit instead. So 90% of that free movement is gone.
Fine tuning.

But the reason that they ignore this free movement or baclash is that it doesent concern most users since they are leaning on it. It cant "bounce" as you put it. I sorted mine out because I am a OCD nut. It wouldnt have moved with 20 stone leant on it.
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Re: Personal Wheelchair Budgets

Postby foghornleghorn » 04 Sep 2018, 19:31

Burgerman wrote:ALL chairs are just a seat. And 4 wheels. And some programming.
If the seating position is identical, and the programming is identical and the position of the GG is the same, then if you were blindfolded you couldnt tell the difference in use. Providing same sized tyres, and adequate torque to follow joystick. THERE ARE NO OTHER DIFFERENCES! Unless you think theres some special woo woo in there too.[/i]
This was a 6 wheeled thing they forced on me. Their choice of indoor chair ignoring my request for something that matched my RWD very basic chair that had died.

She was totally obsessed with posture correcting seating and wouldn't supply a basic chair. The posture correcting seating restricted my breathing and allowed no freedom of movement to the point where if I hadn't had my spare ebay chair to fall back on I would have ended up in a nursing home in a couple of months having lost what small amount of muscle I currently have.

A 2 minute test drive would have saved a lot of wasted time and money. What was even worse was she had been at my house and been shown everything I can currently do for myself and I thought she had understood how important it was to not lose any of that. banghead
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Re: Personal Wheelchair Budgets

Postby Burgerman » 04 Sep 2018, 19:40

Getting rid of play. The manufacturers drill 8.5mm holes to allow 8mm bolts to go in easily. And an 8mm bolt isnt 8mm either... So you get movement at the top and the bottom of the actuator. DRILL the top bracket and bottom mount bracket (4 and 1) to EXACTLY 10.00mm from their existing oversized 8.5 mm rattly holes.
Here:

actuator1.gif


These are SHOULDER screws. Buy a 10mm one for each end of the actuator the right length. The 10mm ones use M8 nuts. Then buy a 9.9mm accurate drill reamer, and a 10mm finishing one to use with extreme care. When done, drill the actuator to an accurate 10mm to match. When assembled almost every bit of your "bounce" will be gone. This basic is engineering. Fine tuning that YOU will have to do to make it work better. I did exactly the same on the swingaway...

Image

Image
Ebay, any sixe you want!
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Re: Personal Wheelchair Budgets

Postby Burgerman » 04 Sep 2018, 19:51

She was totally obsessed with posture correcting seating and wouldn't supply a basic chair. The posture correcting seating restricted my breathing and allowed no freedom of movement to the point where if I hadn't had my spare ebay chair to fall back on I would have ended up in a nursing home in a couple of months having lost what small amount of muscle I currently have.


You already knew what you needed. They dont know a thing about chairs, and are OTs, physios, with about 3x 2day training sessions mostly on "seating/posture" which is mostly bullshit. You must learn to assess yourself, and REFUSE to take the slightest bit of notice of them I spend much time taking the piss and explaining to them why they are clueless, and do so very confidently because I DO understand both my needs and powerchairs. They dont.

A 2 minute test drive would have saved a lot of wasted time and money. What was even worse was she had been at my house and been shown everything I can currently do for myself and I thought she had understood how important it was to not lose any of that. banghead


No it wouldnt. You already told me you knew that wasnt what you wanted/needed. YOU should be the one assessing your own needs since you are best placed to understand them. And YOU should be telling them in minute detail in writing and leaving nothing to interpretation, delivered by recordeed delivery. Explaining exactly WHY you need what you need. They can then come and help you by trying to explain why you may be wrong. If they can...

EVERY chair they brought to test would be equally useless until properly SORTED, CONFIGURED, FINE TUNED, PROGRAMMED, and then EVERY CHAIR will behave and feel exactly the same.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 04 Sep 2018, 19:53

For what its worth the non powered non recline back may well be weaker. Even if less play. As the hinge point is the locator. So not sure how they retain its angle. Will take a look.

Nope it just sits in the alloy bracket bolted to the seat rail. So I would expect it not to have any free play, but be far more flexible under a load. And it will have huge 10 inch long push handles to gouge every wall. I cut those off.

So given the choice the power recline is likely a stronger setup. And also doesent have freeplay once fixed...

Also those lift up arms flop about side to side meaning once programmed you cant steer properly. So I chose single post solid ones as they are strong!
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Re: Personal Wheelchair Budgets

Postby MichaelB » 05 Sep 2018, 12:50

You have to remember that I have no movement from the neck down so can't tinker, anything that I need doing I pay for, if I can find someone to do it. Highly frustrating when you know what to do but can only look at it. Hanging the vent off the back doesn't help but you are limited as to space to fit it, another consideration when putting a must have list together.

I'm getting an Ottobock Juvo RWD when I test drove there was little play or bouncing, it might develop over time but was a lot better than the Salsa. Armrests seemed secure but don't affect my steering, that is the other problem where I now have the joystick on a neck harness to isolate it from chair movement. Still not ideal as my body is strapped in but head moves so it isn't precise over bumps.

As you said each chair is individual and needs fine tuning, get it as close as you can with spec then tweak, don't mind doing that for a chair that I purchase but not for WCS supplied chair. I've been through the bouncing problem so many times with them and still have the same chair as they only offer 2 options.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 05 Sep 2018, 12:55

PRECISELY what the personal budget is for. Cases like yours where they cannot help and are incapable of either doing or understanding.

I cant physically do this stuff either in most cases. I farm it out in small sections to local engineering shops, college workshops, etc for a small addition to the beer fund. Or pay someone to do as instructed right here in my room. With my brain and their hands, or one of may carers that simply does as instructed we get there! There isnt another way.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 05 Sep 2018, 14:45

Have you ever used a charity Remap? One of their volunteer engineers helped me with my Boma, constructed the LiFeP04 packs from info on this forum. I wish he had more time.

It isn't easy finding people to help, I get great support from friends in the bike industry, Boma has lots of upgraded mountain bike components but when it comes to engineering jobs at home it gets more difficult.

Another unseen problem of disability.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 05 Sep 2018, 15:02

Its probably the greatest one. Maintaining a home, building solar systems, replacing and fixing heating boilers, proper cleaning and maintainance of house, gardens, driveways, vvehicles, or even sorting out a few cupboards or tidying the garage, decorating and repairing damage caused by carers and wheelchairs, and much more all require the sort of dedication and skills that only an owner bothers to do. As long as YOU have the brain, anyone that is enthusiastic is capable. Thats the problem. Cleaners dont. And enthusiasm cant be bought. But I somehow manage to find paid and keen volunteers. Its a struggle, sometimes taking a year to get someone to cut a hedge properly...

But it can be done. You just have to micromanage and recruit well. When I employ a carer I take a look at his car. If its super clean, and valeted and detailed he has a better chance of a job! If his or her own home is immaculate it also helps. Caring skills? They dont need any as I can tell them exactly whats happening there. And age. Employ YOUNG carers. Anything beyond 30 hasnt got the interest or enthusiasm for life in many cases and are less keen to help doing odd jobs or following instructions. Bar maids around 19 to 25 are usually perfect and easy to poach from the pub. Captive audience!
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Re: Personal Wheelchair Budgets

Postby MichaelB » 05 Sep 2018, 16:32

My current team is 8 support workers! Not easy to recruit where I am, if you aren't working it is because that is your choice. Rarely have a full team and standard varies, getting people to work to my standard is difficult because if they leave you struggle to replace. Ended up back in hospital as we couldn't get a team to look after me. Some are good and will try but I struggle to find ones with practical skills, can't complain really, they are there to keep me alive and as long as they can sort a vent problem before I die I am happy.

And yes, young if possible but saying that my best support worker is late 40's but she is a one off.

Another reminder of how tough life is and how we don't need the hassle of getting the right chair.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 05 Sep 2018, 16:50

Nobody needs it. But thats not how life works. If you want things right then you dont get any option.

You either suffer it, put up with what the "nice ladies" tell you. And give you. Or you fight it and fix it. You only get one life, so you better fight your corner!

If the SYSTEM was perfect and even if it worked moderately well, then this site could cease to exist and I will be in the pub watching movies or working. While the "experts" dealt with all the care, health, chair and other equipment issues. Thats not what happens.

For eg, the SOCIALIST medical system we have in this country is now so hard to access or deal with that you cant even get to see a doctor. Its endless bullshit, waiting, messaging systems, appointments a month on tuesday, etc. So every time I get a bladder infection and cant breath, shaking, think I am dying I use a bunch of antibiotics I get from my ex who goes home to belgrade now and again. Because it can take a week to get the wrong, cheap, non urine tested antibiotic from a doctor, after numerous trips of district nurses etc. And I would be dead by the time they ended up with me in hospital with kidney failure. Ciproxinal works every time. You MUST help yourself.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 05 Sep 2018, 17:29

I will give another example. A girl with a husband (who was working) that was a feind of my carer had a possible cancer that needed investigation, and the hospital discovered a non related spinal tumour. They told here that they could remove it and she ended up paralised from waist down. 6 months later it was back. Now she is paralised from chest down. They say its growing back, and she dare not try again...

And when she got home her husband gave up his job to look after her. She has 3 children. The local authority put her on a 18 month waiting list to get some housing modifications done. She cant get upstairs to the toilet or bath/shower. She is sleeping in the living room with guests coming and going. And children in and out. She still may have a terminal cancer/tumour but doesent know yet. They are waiting to see what happens. The council will not do anything to help her because she doesent shout loud enough. She was told, and I kid you not, that she can use the toilet and shower in the councils leasure centre a mile away. Untill the 18 months is up. The work may take another 18 months!

That lesure centre closes at 10pm nightly. How is that even possible for a paraplegic wheelchair user anyway? And the WCS wont give her a powerchair as she can self propel... With 3 kids to look after, take to school and feed, and all the problems of the recent paraplegia she is trying to manage.

They told me a bunch of similar crap when I got out of hospital. WCS and council.
Within a few months of getting home, I had a modified van paid by me, powerchair, also funded by me and I got the WCS to pay later. And a lot of modifications like wider doors, shower rooms, extended bedrooms ad kitchen, walls removed, wet room, extra hardstanding, ramps back and front of house. Because the council said they would put me on a list. 18 months! That wasnt an option and I told them so. Did I mention that quite apart from the WCS arguments and the new Personal Budget I now get instead, and the local council regarding disability adaptation grants, that that I was also the first person in my town (and one of few anywhere) to be on Direct Payments to employ my own carers? Since I refused agency care. Can you guess what caused that to happen? Yes. That bullshit you mentioned that you claim doesent work. And the council paid for their part of the disabiity adaptations that I started without them too. You cannot allow the system to grind you down. Do it the other way around!

The big difference between the girl above, and me is that I will not accept their delays, inadequacies and other crap!!! When they tell me things that are unacceptable I go to work on them. I am mentally strong. Not all are. Those people lose, because they let the system grind them down. They accept their stupid rules and statements, and lists, as FACT. Its simply not. Those are wall they hide behind. If they want or must halp they absolutely can. You dont need to shout, or swear, just use their own logic against them until they see it your way.

That girl is still in an NHS deckchair, with no housing adaptations a year later. And worried about dying on top. She never leaves the house.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 05 Sep 2018, 18:22

The "system" is f'cked, unfair and you have to fight but some you can't win. I got absolutely no financial help with house adaptions or for the van. Stupidly made the mistake of working hard, saving and having a good job. It doesn't matter how hard you fight if you made that mistake they just look at your bank account and wave you good bye. Bought my van in 2014 and now considering Motability, was told that I might qualify for a grant, phoned asked whether there were savings limits, got told each case got judged individually so started application. Got to savings and income and answered honestly to then be told that I wouldn't qualify! 30 minutes wasted they could of told me limits at the start.

You need to get your local GP sorted, if I need them they do a home visit that day, I've usually got a prescription if not the meds same day. I know my condition better than the GP's, I'll tell them what I need and they check then agree, even set dosage of meds then get it signed off by them. I look after my vent, whilst in hospital I realised that I was stuck with it for life so I'd better understand how it worked, home vent team know that I have about as much knowledge as them so work with me. I trial new equipment for them and provide logical feedback so can usually have the latest equipment well before anyone else. District Nurse team are always helpful, usually coming when it suits me, they know that I understand my care and won't accept anything that isn't in my best interest. I built those relationships from first getting home, it took time and a lot of work but they all know that I only care about my health and will do whatever is needed to get the right service. This is the most important thing for me, I'm not going back into hospital under any circumstances so they respond. Never accept excuses, they know their jobs and should do them, get it wrong and I could die and I make sure that they all understand this. Same attitude you have with WCS just for my health instead.

There is a big push to get people to manage their own care budget, I won't do it. They expect me to manage 8 people, £200k pa cost but to do it cheaper and I am supposed to then have control. All I see is a headache, I was happy to stop managing staff when I went self employed after my accident.

The system is screwed but you can make it work with effort the problem is that when you are ill or recovering from an accident you don't have the strength to take the system on. I still wouldn't want to be without the NHS though.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 05 Sep 2018, 21:45

Really? Its the most efficient way to waste money, and get to do a lot of waiting I think its possible to devise.

Yes, my doctor used to be very efficient. He got old, retired and went back to scotland. Now we have a bunch of foreiners who have names I cant pronounce, and who I cannot communicate with since they dont speak or understand english. They all think creation is real, one specialises in voodo or the other pin sticking woowoo, same thing, the others are busy inventing ever more complex ways to avoid contact with any patients. If you DO get an apointment, as they do no home visits, you get to sit in a waiting room full of deseased coughing ids from countries that I cant imagine with their single mothers for around 2 hours only to "speak" for around 2 mins with someone that hasnt a clue. A dispensing machine that doesent listen, but knows everything. And you end up having totally wasted your time.

I am about to change doctors. But unfortunately all the other places are equally bad judging by the reviews online, and wont take new people on anyway... NHS! :lol:
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Re: Personal Wheelchair Budgets

Postby MichaelB » 06 Sep 2018, 12:39

It is about making the system work for you. It took time to understand how to get what I need but now I use it and it works. GP has changed 4 times but each new one follows the example of previous because initially we had a discussion and agreed how they could help me. If I get a chest infection and it isn't treated quickly there is a real possibility that I will die, or be in intensive care at however much that costs. I've got other life threatening problems which require quick diagnosing so they understand my need. The rest of the systems know that despite my disability that I continue to work and understand how it affects me mentally so respond working around my life style. Simple discussions to have where I know what I need, clearly state them and ask how we can best fulfil them. Almost identical to how you deal with WCS. One day it might change, already had the lack of ability to understand English from a new consultant at the spinal unit, quite easily resolved, I just won't use the spinal unit, no need for them.

The NHS has many faults but everyone has the option to buy private medical cover. If you are looking for efficiency it can never happen in the NHS, the system isn't made that way nor can it be changed. 9 months spent in a hospital bed watching the chaos taught me that. On the positive side, it took me from near death to adapting to a life disabled despite the faults and now provides the ongoing care that I need. I'd be bankrupt without it as happens to far to many people in the US.
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