Personal Wheelchair Budgets

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Re: Personal Wheelchair Budgets

Postby Burgerman » 22 Aug 2018, 17:58

Sadly nowhere in the PWB documents does it refer to power chairs


Not only do they refer to powerchairs but they made a point of using ME, and my HOME BUILT DIY powerchairs as an example!!!

In fact since I was the first, and the whole damned budget for chairs system was actually created specifically to allow me to build my own powerchairs at home then its pretty damned hard to be that ignorant or wrong!!!

First 2 sentences. Is me. 7 years ago... 51, now 58!
And this is used by many different areas, as well as being on the Gov websites. You are not even trying.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 22 Aug 2018, 18:03

I have to deal with the CCG for my continuing health care package, that has an annual cost of over £200k! Without it I can't do anything so kind of a bit bigger deal than a PWB. You have to learn the game and play to their rules if you want a life. It all takes time but I am not going anywhere and just dig in. The system is similar to PWB, prove that you need something, get it agreed then get the funding. A little bit more difficult than PWB as despite an NHS national framework the CCG ignore that and write their own (they can use the right words when it comes to money) and you can't fight unless you understand the local rules. Not easy to do but PWB is no different other than there is a national policy and the ombudsman to go to which are big helps. The ombudsman should be neutral so you just need to present facts, the CCG haven't followed procedure, you have a need for a bespoke chair, it has not been provided.

All I can do is follow that path, if I win the CCG will have to change, it can be done if you don't give in/up.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 22 Aug 2018, 18:06

Burgerman wrote:
Sadly nowhere in the PWB documents does it refer to power chairs


Not only do they refer to powerchairs but they made a point of using ME, and my HOME BUILT DIY powerchairs as an example!!!

In fact since I was the first, and the whole damned budget for chairs system was actually created specifically to allow me to build my own powerchairs at home then its pretty damned hard to be that ignorant or wrong!!!

First 2 sentences. Is me. 7 years ago... 51, now 58!
And this is used by many different areas, as well as being on the Gov websites. You are not even trying.


Which NHS website is that on please?
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Re: Personal Wheelchair Budgets

Postby Burgerman » 22 Aug 2018, 18:10

That actual page was given out in an area 60 mies from me to another member on here. Boston? But the same content is used by many areas. Part of a powerchair budget internal info flyer to the various WCS departments that they are supposed to read...

The TEXT on that page, was one of a great many examples on the gov NHS website when the whole thing was being launnched, and the info is given to individual areas. I cannot remember how to find that now. But its available to WCS and to the various NHS staff for training and internal use somewhere.

All I can do is follow that path, if I win the CCG will have to change, it can be done if you don't give in/up.


Yes. I have the cheque... (s) for nearly a decade.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 22 Aug 2018, 18:22

Burgerman wrote:That actual page was given out in an area 60 mies from me to another member on here. Boston? But the same content is used by many areas.

The TEXT on that page, was one of a great many examples on the gov NHS website when the whole thing was being launnched, and the info is given to individual areas. I cannot remember how to find that now. But its available to WCS and to the various NHS staff for training and internal use somewhere.

All I can do is follow that path, if I win the CCG will have to change, it can be done if you don't give in/up.


Yes. I have the cheque... (s) for nearly a decade.


It would be useful to get an NHS page where power chairs are clearly mentioned. If you use the PWB/NHS pages they aren't, this is a big problem as WCS/CCG don't go looking for extra things to do.

Check this out https://www.nuh.nhs.uk/download.cfm?doc ... f&ver=2271 full guidelines and they even publish that power chairs are excluded. It is going on all over the country.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 22 Aug 2018, 18:34

Interesting looking into the different policies I've found one that states that specialist seating and postural is the responsibility of the local WCS so they have to supply things like Roho cushions on top of the PWB.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 22 Aug 2018, 18:44

Everything to suit your HOLISTIC, LIFESTYLE and CLINICAL joined up needs.

And that included in my case a Jay2 cushion at 750 and jay3 back, at? and a figure for maintainance for the 3 years. Or 5 years if you are daft enough to fall for that...

So chair as assessed to meet the above and agreed by you. Hence assess yourself, and in detail showing which chair, which options, and why?
Cusions or seating (jay2 and a jay3 back un my case)
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Re: Personal Wheelchair Budgets

Postby Burgerman » 22 Aug 2018, 18:53

Check this out https://www.nuh.nhs.uk/download.cfm?doc ... f&ver=2271 full guidelines and they even publish that power chairs are excluded. It is going on all over the country.


Yes its pure ignorance. Or willfull ignorance. Your job is to straighten them out.
Remember that the only reason that the scheme started was SPECIFICALLY for me to build my own powerchairs. And thats never changed. The key is that it was purposely designed for total flexibility. YOUR choice. It was never intended as manual chairs only. In fact they were an after thought I still do build and modify like the salsa as intended after THEY assessed me for it. Or at least agreed with me.

Its like this. They assess you. Manual, power, or whatever. They decide with you what fits your clinical and holistic lifestyle needs. And either supply it, or for 1 more year offer the voucher scheme, or instead of supplying this, they simply give YOU the money. Plus maintainance, seating costs, etc and what and how you use it is your own business. But new, buy used, build, modify, whatever you choose.
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Re: Personal Wheelchair Budgets

Postby steves1977uk » 22 Aug 2018, 20:02

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Re: Personal Wheelchair Budgets

Postby Burgerman » 22 Aug 2018, 20:13

How much money will people get in their personal wheelchair budget?

The amount will be based upon what it would cost the NHS to meet the person’s assessed postural and mobility needs via the wheelchair service currently commissioned by their CCG.


In other words if they assess a need for a powerchair now, like for them to supply, or the voucher scheme this is replacing, then that does not change just because they feel like they dont want to give it! Its about assessed needs as before, not their wishful thinking.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 23 Aug 2018, 13:14

steves1977uk wrote:From the NHS website... https://www.england.nhs.uk/personal-hea ... questions/

Steve


All it would need in the FAQ's is "Does a PWB apply to both manual and power chairs? " and we would have everything sorted.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 23 Aug 2018, 13:25

Both are wheelchairs.
It does not say it excudes them. So that question would make no sense. Like asking if it includes wheels or seating. Or cushions. It clearly does.

Since that was the very point of it! Total USER control of outcome. Myself for E.g, building powerchairs. And at least the next 3 users that followed after me.

And, obviously it says assessed needs. If you cant self propel sensibly, or any sensible distance, or hard to transfer with manual, etc or need tilt, recline etc for pressure sore avoidance, then they will assess you as needing a powerchair. Esp if you tell them you cant get a bowl of soup from kitchen to dining room without risk of burns in a manual...

The assessement is what counts. They dont suddenly change the payment model depending on assessed needs!!! That would be perverse. Its suposed to be replacing the existing payment model -- the voucher scheme -- hows it going to do that exactly if its just manual chairs? After 2018 the Voucher scheme is supposed to end!!! Completely illogical to say it only covers manual. Thats clearly not correct.

Anyone that says that must be dumb or willfully ignorant with an agenda that is obviously not in line with what that new wheelchair budget is about. And the few simple facts here show this. Not to mention
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Re: Personal Wheelchair Budgets

Postby MichaelB » 23 Aug 2018, 14:03

They have an agenda, maintain the same purchasing and suppliers through the company they set up. Read the PWB pdf's from areas with them and they all say say that you will receive an amount equal to the chair they would supply at their cost. That will be substantially less than the retail price rip off dealers charge. They don't want us to us to know how cheap they actually are.

They don't want it to change happy with the way it is and thinking they can keep their rules excluding power chairs. They will have to be forced to change, they won't do it voluntarily.
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Re: Personal Wheelchair Budgets

Postby steves1977uk » 23 Aug 2018, 14:29

Here's Hull and East Yorkshire's PWB leaflet... https://www.blatchford.co.uk/documents/ ... ull-er.pdf

Can't find anything for the Norfolk area :?

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Re: Personal Wheelchair Budgets

Postby MichaelB » 23 Aug 2018, 15:45

Burgerman wrote:Both are wheelchairs.
It does not say it excudes them. So that question would make no sense. Like asking if it includes wheels or seating. Or cushions. It clearly does.

Since that was the very point of it! Total USER control of outcome. Myself for E.g, building powerchairs. And at least the next 3 users that followed after me.

And, obviously it says assessed needs. If you cant self propel sensibly, or any sensible distance, or hard to transfer with manual, etc or need tilt, recline etc for pressure sore avoidance, then they will assess you as needing a powerchair. Esp if you tell them you cant get a bowl of soup from kitchen to dining room without risk of burns in a manual...

The assessement is what counts. They dont suddenly change the payment model depending on assessed needs!!! That would be perverse. Its suposed to be replacing the existing payment model -- the voucher scheme -- hows it going to do that exactly if its just manual chairs? After 2018 the Voucher scheme is supposed to end!!! Completely illogical to say it only covers manual. Thats clearly not correct.

Anyone that says that must be dumb or willfully ignorant with an agenda that is obviously not in line with what that new wheelchair budget is about. And the few simple facts here show this. Not to mention


More importantly it does not say it includes them and given that this is a well known problem it would make sense to clarify it so that there could be no argument. It has always been assessed needs and for the likes of me paralysed from the neck down there is no dispute that it has to be a power chair. But... during all my arguments that the chair they were providing didn't suit my lifestyle I was told they only supply chairs for predominantly indoor use with occasionally outdoor! No voucher scheme for power chair so you are screwed if you need to get around, travel for work or want a social life. I used the unsuitability of the 2 chairs they had to do an Access to Work application so something worthwhile did come from the assessment procedure. It shouldn't be needed, WCS should want to help not make you feel even more disabled!

Common sense and logic don't apply so the rules need to be clear even to the stupidest person they employee and to stop them changing what suits them.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 23 Aug 2018, 15:49

I should of added that the power chair mainly for indoor reinforces comments about how little use the majority get, few actually driven any distance. This is their typical client, I'm pretty sure that they don't expect high level injuries like me to want to get out and about.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 23 Aug 2018, 18:44

For the last 20 years the wcs remit and instruction is to INCLUDE all chairs in all funding options including seating, rehab options, and powerchairs, and that definitely includes the voucher scheme that this replaces.

Whats more they also have had to include and I quote: Your social, and lifestyle clinical and holistic needs. All joined up. For your best outcome and lifestyle. They love to ignore that part but if you INSIST they cant. And wants, including such things as ability to shop, or visit freinds or do your hobbies etc IS EXPLICITELY INCLUDED provided you cannot transfer to an outdoor chair, alone for eg then that must be included. Or your needs are not met and you starve! And become a recluse!
Oudoor capability, range etc should also be taken into account in this case. These things certainly WERE NOT included in their assessements in my case initially and they gave me the same stories as you. But the "bullshit" method you say doesent work, fixed that in 1998... After listening to their crap, I BOUGHT a 6mph outdoor chair, and sent them the bill explaining why. After some heated discussion for about a month they paid for it and I got a refund... Although they wont cover the extra cost of 6mph in that case, they insisted I paid 220 towards it. Meaning it was partly mine. So they cant then stop me taking a hacksaw to it, which I did the day of delivery to fit a home made centre footplate, and to reprogram it. So shot in the foot they were! The WCS love me. They were reluctant to replace batteries or anything else I destroyed. So thats when the real war began that ended in me getting a cheque every 3 years based on MY assessement, which they agree to...

Seems to me that you listen to all their fairy stories and accept what they say as accurate and correct info. Trust me its not. They are both incapable of understanding what they are SUPPOSED to be offering, and at the same time not really interested, and looking to spend as little as possible to have enough money to pay for all the meetings and inaction and coffee.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 24 Aug 2018, 01:24

ALSO...
THE NHS Wheelchair services CHARTER which they are all supposed to be following...

The NHS wheelchair charter, which was drawn up by campaigners before being adopted by NHS England, states that access and provision should be equal for all, “irrespective of age or postcode”.


So your area cant just decide that it wants to skip powerchairs!!!

http://www.rightwheelchair.org.uk/image ... harter.pdf

This was rewritten, and adopted wholesale by the NHS England, that all CCGs are suposed to follow. Its about equal servecies and timing, (esp for children in this case after a damning report about childrens wheelchairs timescales). It was adopted not just for children.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 24 Aug 2018, 02:23

https://www.theguardian.com/society/201 ... owdfunding

Read carefully... Interesting stuff.
Remember, this page is ABOUT POWERCHAIR FUNDING

“It’s the basic tenet of the NHS: you have a need and it’s met. But it isn’t,” she says. “People are housebound and trapped in their homes. Yet nothing is being done.”

Local GP-led clinical commissioning groups (CCGs) are ultimately responsible for securing and funding wheelchair services. A spokesperson for NHS England says it is working with the National Wheelchair Leadership Alliance – a group set up by Paralympian and crossbench peer Tanni Grey Thompson in 2015 to look at provision of wheelchairs through the NHS “to develop best practice standards as well as introducing personal wheelchair budgets to give people more choice on the best wheelchair for them”.

During 2017-18 all CCGs in England are replacing the existing wheelchair voucher scheme with personal wheelchair budgets, in which people are told upfront how much money is available for their wheelchair, based on an assessment of their individual needs and goals.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 24 Aug 2018, 13:28

I may add that after a call today, I am reliably informed that if the various CCGs do not do their job properly, or choose to interpret it incorrectly, even when they are told or advised of their errors, after a reasonable time to sort it out, then NHS England can put the CCG under "special measures" just like any school that fails to perform. And they then take over the running of the CCG themselves until corrected. And restaffed as required...

So your claim of no way to address your issues is wrong. As I said previously, go to the top. And that doesnot mean being fobbed off by the NHS England customer services who will just tell you its up to your local CCG! It means writing a letter to the top. And or calling them directly. If you can find a number for Simon Stevens or whatever his name was or the Health department.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 24 Aug 2018, 13:31

They haven't provided voucher schemes for power chairs and the local policy states that in some areas, no one challenged it and many other areas did the same. There still are areas blatantly not following the guidelines and even publishing it. Nottingham PWB leaflet,
2188v1_pwb_guide_for_referrers__1__pdf__page_3_of_4_.jpg
they ignore the guidelines, this is exactly the same with Continuing Health Care and the only way to change it is to challenge them. I'm positive that it isn't a lack of knowledge of the guidelines or not understanding them they just want to be in control of the purchasing and not have to check that anyone buying using a PWB is getting the right chair, more work for them.

Typical post code lottery mess that PWB was meant to resolve and hasn't, they bring in a new system but no-one enforces it it is left to the individual to fight.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 24 Aug 2018, 13:33

READ the post above yours.

and not have to check that anyone buying using a PWB is getting the right chair, more work for them.


They do NOTHING. The whole point is that its no longer their business, whether you buy a 1 man helicopter, build your own chair(s), or choose to be carried by slaves. What you choose, is YOUR business. You only get to decide what works best for you. You are the risk assessor, suitability assesement, and finance director and purchaser. YOU DECIDE if you buy a quad bike for the farm to compliment an indoor chair, get 3 used chairs, build one from parts, repair it yourself or use an "expert" of your choice, using new or used eBay parts, or do what the hell you want. It was created for me, to do EXACTLY THAT!!! That was the whole reason it exists at all. So far from being "more work" it means I never even see or talk to them!!! Unless its budget/assessement time. And thats a 5 minute formality.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 24 Aug 2018, 15:54

You quote what they are meant to do, meanwhile in the real world they publish documents saying that you have to work with one of them on assessment and chair matches your needs. They just believe that they are right and can decide their own terms, publish them without fear of any comeback because they know that the people making the overall policy won't follow up. It requires enforcement of the policy not just writing it whether it was vouchers or PWB but the reality is nothing has changed some continue to ignore whatever you call it. They know it won't affect the majority but the few who are affected are the ones who will probably use their chair for way more hence knowing what they need.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 24 Aug 2018, 16:19

You quote what they are meant to do, meanwhile in the real world they publish documents saying that you have to work with one of them on assessment and chair matches your needs.

That part IS correct. When they "assess" me technically. I make damned sure that I have my extremely detailed personal assessement, a specific chair that fits all onf these details, be it the MODIFIED salsa, or my own HOME BUILT chairs, and all my reasons why. To suit my clinical, lifestyle and holistic needs. You know, the WCS remit!!!

For eg, the chair must work in my van. Becasuse I cant transfer to one that does, and the flexibility of this WHEELCHAIR BUDGET is designed expliciyely to allow this. And it must have the correct seating (presure sores) centre footplate (van, doorways etc) seat lift, bed and benches etc all different heights, etc etc etc. And if they disagree then thats where we have problems and I threaten tp sue them very publically for failing to do as they are supposed to be doing. They know I will. Been there before. So far, it was a big problem in the begining, but after some huge battles as I said, involving the health department, etc then they were well beaten. They dare not argue with me any more as it resulted in job losses, and a nervous breakdown and much time off work for the WCS boss, and removal to a different post the last time. And the very creation of the budget we are talking about instead... As I showed publically just how incapable and useless the WCS was.

They just believe that they are right and can decide their own terms, publish them without fear of any comeback because they know that the people making the overall policy won't follow up.

Wrong. See and read above. They can, and after some small war they did. And a quick call to NHS England today told me that if the local WCS or the Local managers dont behave correctly they can and will be taken into special measures and run directly by the NHS England head. And it doesent usually go that far as once threatened they tend to change their tune. As they always do with myself. It must be that bulshit you were talking about that you claim doesent work!!!

It requires enforcement of the policy not just writing it whether it was vouchers or PWB but the reality is nothing has changed some continue to ignore whatever you call it. They know it won't affect the majority but the few who are affected are the ones who will probably use their chair for way more hence knowing what they need.

Until you MAKE THEM do as they are supposed to be doing. As I do. The problem is that you actually read and take notice of their refusals and excuses. I do not.

Remember that I am writing this looking at 2x BM1 custom lithium 6mph chairs, 2X BM2 chairs, a stock brushless storm 3, and a BM3 16mph project lithium chair with 45 miles range and fat tyres etc, And a recent new Salsa chair with customised 120A controller, centre footplate, every power seating option, soon to be lithium, fat tubeless wheel/tyred custom, reprogrammed, chair next to my bed that I decided to order. And have been fighting the WCS since 98, very successfully including starting the very budget you are talking about personally because of it!!! So who do you suppose is doing this right? They started on me in 97 with their bullshit and incompetance if you want details. I have been getting my own back on them ever since. I make a bad enemy.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 24 Aug 2018, 17:06

And I quite clearly stated my needs and they agreed they did not have a suitable chair at that point I just used the system that I know works for me. In 3 years I've had 3 chairs all exactly to my needs plus 1 that I use from them until my Ottobock is here in a couple of months so I guess that for no effort and no stress or fighting I have achieved a lot more using the systems available to me than I would from fighting. A lot easier on me not to get stressed and focus on my work. At least discussing here my time isn't wasted as I learn from it and get more knowledge.

As I have said a number of times it is not about getting a result for me, I already have that if I fight using my own circumstances and threatening legal action which they ignored and said go do it knowing that it is difficult and costly it doesn't help anyone else. What needs to change is their policy and system so you play their game and end up, eventually, at the ombudsman. Show him their policy then all of the documents that say what should be done and he will make a decision that they have to put into place for everyone then no one else will have to fight. I might even use the PWB to get another chair :)

Ultimately they have to be told as they won't respond to common sense, logic or threats we both agree on the fact that they need to be told we just do things differently, I'm happy to play in their rules as I know that I can win, you prefer to go a different route as you think that you can't win using their systems. Neither is right or wrong just different.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 24 Aug 2018, 17:38

you can't win using their systems.


Thats right. Its designed to send you in circles inside their own protective setup. GO ABOVE IT!!! :cussing

As I have said a number of times it is not about getting a result for me, I already have that if I fight using my own circumstances and threatening legal action which they ignored and said go do it knowing that it is difficult and costly it doesn't help anyone else.


Of course it does. It sets a precident. That others can use to make them do their job.
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Re: Personal Wheelchair Budgets

Postby MichaelB » 24 Aug 2018, 18:15

I don't need to go above it, I can use it ,just like you did presenting a valid argument to the right person. Most of the info needed is in this thread and having the right information is critical.

If I do it any other way the policy won't change, I might set a precedent but they aren't going to tell anyone else so in say, 2 years time no one would know I'd be forgotten about. I have to win and change their policy.

Not easy and a long process but like you said you have been doing it since 1997,hopefully I won't be still trying for that long, well I know that I won't, 1/2 way through a life expectancy of 10 years so maybe PWB shouldn't take up too much of my time and definitely not stress me :)
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Re: Personal Wheelchair Budgets

Postby Burgerman » 24 Aug 2018, 18:35

Same here. About a decade left. But its a matter of principle to me. I dont like the WCS for a bunch of reasons going back to 97. So I make a point of getting them to do exactly what they told me wasnt possible and REALLY really dont want to do, and pay me a large cheque every 3 years so I can do my own thing. :clap

I dont like losing.
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Re: Personal Wheelchair Budgets

Postby ex-Gooserider » 28 Aug 2018, 02:35

Being from the US, I am not particularly expert on the UK political setup, but I know you have an elected Parliment and some other hereditary deal, who are supposed to represent you.... Have you contacted them???

I know in the US, we have state and federal legislators, who mostly won't admit it, but who's primary concern is getting re-elected... One of their big 'tools' is 'constituent services' where they help constituents who are having difficulties with government agencies... The hope is that if they help you, you might vote for them next time, and also tell your family / friends to do the same....

On the flip side, the government agencies get their budgets through the legislators, so when one of them calls they tend to get answers....

Two general principles apply -

1. Fecal material flows downhill.... The agency boss needs their blessing for a budget so when they get a call saying why is my constituent having a problem, and why aren't you doing the right thing? It can start a large ball rolling...

2. Thermal Illumination - When they feel the heat, they see the light.....

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Re: Personal Wheelchair Budgets

Postby MichaelB » 28 Aug 2018, 12:42

We do have locally elected representatives but they vary, some take constituents problems and help others pay lip service to it. I contact mine on different issues and usually get a polite reply, signed by him, written by his aides. Last time was to help prevent building 30 houses on the land next to us. We have flooded 3 times in 15 years, last time the land they want to build on was 2 ft under water, he didn't see a problem with that and couldn't help.
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