WCS - Personalised Budget Meeting Dept of Health

[Burgerman]

More news. Garanteed for everyone (that wants it) in 5 years? Another email, edited for various reasons:

Hi John

firstly I must apologise that we have been unable to get the authorisation paperwork together as planned due to a combination of email problems, measures to protect your information, and transport problems, I can confirm the pack is now together and I will be putting the paperwork in today. I’m sorry for the delay.

Secondly - removed...

Thirdly – I have received news on the development of a national network of PHB holders, which you are eligible to join. Details are attached in the attached .pdf

You may recall the stuff in the news the other week – when there was a report on the listening exercise (or pause) from the Health Bill and a response from the government the day after. The report said that PHBs should be rolled out across the country within 5 years. The government response said it supported this for all those who are eligible. So – with this backdrop (the pilot will become mainstream within 5 years), the network of PHB holders is set to be quite influential.

If you decide to take part in the network, I’d would appreciate your feedback and your thoughts so I can advise the organisers of your experience (preserving your anonymity of course, unless you specify otherwise).

So nothing much we didnt already know, other than the "network" that I have signed up for...

[Burgerman]

Woohoo!

Now I can finish the BM3 and build a BM4 with time travel and invisibility cloak!

A letter, or a bit of one recieved today. For all those that say being rude, stubborn and argumentitive doesent work... This is renewable every 3 years subject to my benefiting from it, and keeping the paperwork to prove it didnt go on gambling/women/drink...

Everyone will be able to do this soon, BECAUSE I explained graphically exactly how useless the WCS and their Voucher Scheme really was. The figure relates to what they "assess" my needs are. If you need a fancy control system, or fancy rehab seating the figure will be higher. Or lower if you are assessed as needing less. So it pays to make your own assessement on your needs on paper and explain exactly why you need what you do. As I did. If that includes not being able to transfer, and needing to get out in the world to shop, booz, dog walk, then you need an indoor outdoor solution for eg. If that includes enough speed to make it safe and practical and suspension, and suitable range then find some SUITABLE chairs and explain why. In writing.

Now to get BM3 done, and order lots of goodies to build the Lithium, BM4 with all the best bits available! Possibly a spondon alloy frame, brushless motors, brushless roboteq, suspension, one off carbon footplates and carbon seating, etc... And all paid for by the NHS. Thats what you call civilised. You US guys need to change your system to allow a personalised budget rather than your insurance schemes. Since its restrictive and discriminatory...

[Burgerman]

http://talk.nhs.uk/forums/75.aspx

For anyone also interested in any of the new personal health budgets... Not just wheelchairs. Forum doesent work properly and posts keep vanishiing for several days at a time... But have your say. No good with IE8 or 9 though...

Burgerman.

[Burgerman]

The money is in my bank. So the proof of the pudding is in the eating so to speak...

Now to finish the BM3 and start on the BM4 with suspension, and possibly a tig welded super neat alloy chassis from a company like spondon engineering. This time I will use shorter smaller headway cells, so as to allow 16 inch diameter tyres, 7 inch diameter wheels, and 7.00 wide. And suspension. And a shock absorber seat front edge to negate pitch "shocks" and obviously fast...

All subject to testing the Roboteq/BM3/Lithium combo...

[Martin O Refurbisher]

BM
Congratulations - you've done it!

Best,

Martin

[Burgerman]

http://www.youtube.com/watch?v=prmiqwV2 ... re=related

idea

[Anderida]

A personal decapitation device! And portable too.

[baker99]

Any updates on when the rest of us may get a personal budget? I'm still fighting the idiots at wheelchair services for a voucher, although as they get the TDX from Invacare for less than £2000 it won't help much (I submitted an FOI request for info on Gloucestershire WCS to get the info). I've looked at a Frontier X5 and found it does everything I need, but obviously it's not cheap so have contacted Martin again to see if he can add flat recline to a BM2 and some other features I liked on the X5. I've stopped talking to WCS now and have an advocate from the Muscular Dystrophy campaign doing it for me, he has said this is the worst WCS he has ever dealt with and is also getting very frustrated, I'm guessing things will only get worse once the NHS reforms kick in too

[Sully]

BM you are correct we have to get something started over on this side of the pond. But I still have to take my hat off to you. You're a pioneer and we can use you as an example of the possibilities. I am somewhat amazed the Durable Medical Eqipment folks have not done more fighting against you. Perhaps it is your credentials that cannot be denied.

I fear that political philosophies may be the governing factors, that will prevent the concerted efforts of our efforts. That will be too bad.

[Burgerman]

Well I am not sure what durable medical thingies are, but I only dealt with the UKs useless wheelchair services. They couldnt provide what I needed, and I built my own at my expense and enjoyed wheeliying into meetings with tyres squeeling in my own home built powerchairs as I embarrassed them time and again. Oh what a laugh when they tried to show me how good their Invacare Spectra Plus was! I systematically took it apart point by point while explaining why the squirming experts hadnt a clue... And why the one (bm2) I was sat in was better in every single measurement, spec, and totally more usable.

In the end they didnt want to deal with me at all (I dont suffer fools well) and they gave up trying to tell me what I needed, and refused me a chair at all. Which they were not technically allowed to do.

So I sent a lot of letters to the people that run the WCS (higher ups) and that employ these kind of NHS departments and local goverments, etc. We arranged a meeting at my house with some of these people in charge of budgets, that run various services including WCS, and care budgets etc. Some who were sending their "best experts", OTs, etc along with an expert from a wheelchair manufacturer, expert cross manufacturer supplier, to "assess" me. When it came to it, I thought they dare not try. They would be embarrasing themselves again and I would end up having some more fun at their ignorance of chairs and design.

I went along with this expecting some more fun at their expense, but it never happened. They said they had been having a think. And the WCS wasnt working out for many people that had more complex demands such as myself and that had higher expectations. And would I like to be on a lone pilot scheme for a "personal budget for powerchairs"?

Which means I could go on building my own chairs, but would get a cheque every three years to fund it. Well it seemed that finally they had woken up and were actually trying to help, rather than hinder! Whooho. So thats what we did. Took a few months to get permission from health secretary lansley, and a couple of other meetings here to decide on amount, and to show goverment officials exactly whay I could do better with their money than their own WCS.

And thats it. Pilot started. All stems basically from doing my own thing, demonstrating that I could build better chairs than they had ever seen, as well as for about half the price... So money more efficiently used. In other words a better more efficient outcome that actually suited the user.

[Burgerman]

I have to add, this doesent meant you HAVE to build your own chairs.

It just allows flexibility. So if you want 2 used X5s (V6s?) instead, or want to have a different solution that works better for you, like a chair off the internet not on their "acceptable list of chairs and sippliers", or any other powerchair solution that works better than their hopeless offerings, you can. EG buying ebay chairs for parts, converting to lithium, or getting a chair customised or whatever you wish.

[Sully]

As an FYI DME Durable Medical Equipment is the terminology that is used in the US and covers a plethora of things, which happens to include WheelChairs, Power or Manual. Using your experience as a model set of ideas, it seems if we (American's) any maybe others might want to divorce the wheelchairs from that list. I can easily see two edges of that sword as well. What is personally good for me may well be devastating to someone else. I have tried to see how we could piggy back onto your experiences and deeds.

[Lord Chatterley]

http://www.youtube.com/watch?v=prmiqwV2BV4&feature=related

idea

Up and down is easy - it's forwards that's tricky.

LC