Personal care budgets - CASH FOR WHEELCHAIRS!

[Burgerman]

As many of you are aware I have had one or two MAJOR battles in the last 13 years with the UKs Wheelchair Services...

Well after the latest one I have persuaded them that I can provide powerchairs than they can. And in fact better powerchairs than ANYONE can. And so they cannot provide for my needs as well as I can do for myself.

The only difference between me and the rest of us is that I can prove it, show them 3 superior chairs that I have built here, in front of their experts and in front of their manufacturers and suppliers. Which left them at a loss for words! And can quite literally show them why they are so much better. And I have a track record of 13 years building these and funding this myself.

So they agreed as a pilot scheme with myself, and one other guy, to do the foillowing:

Assess me "their" way for a motorised deck chair, and decide what equipment they would have provided. In my case this is a "Handycare Alex" with Gel cushion. So the plan is to organise me the money instead, as a personal wheelchair budget (personal care budget) and pay a lump sum every 3 years into my account for this value.

This in my case is for myself to build my own chairs. This amounts to around £6500 every three years. With yearly assessements to look at what I am spending it on and to see it meets my current needs. This is because I can provide better value for money, with personal coices and control, than they can. Better value.

This may also apply to anyone wishing to take charge of their lives and make their own buying, maintainance, personal care decisions in the near future. It will apply not just to loonies like me that build their own but to people wanting any bespoke equipment, chairs or adaptions from overseas etc.

But after funding my powerchairs myself for 13 years it finally looks like I will get some help! Anyone interested should contact their WC Services and insist they look into it.

[john b]

thats great news and very well deserved.
i wanted the voucher scheme to help me out with my chair, and use all of it as maintenance money, batteries, parts, repairs etc, but they insisted i had to buy a chair out of it first, not one i could get done. that was no good for me, cos the chairs offered were crap. this may be a new way to go at em.

[Burgerman]

That was what they told me for years. Until I threw a bit of a wobbler and emailed a lot of important people explaining that this was unsuitable and explaining why it was also a waste of money and unfair.

Then we had some meetings where they decided I know more than they did about powrerchairs, and about myself... And I assessed myself. And was in a better position to sort out my own problems, and build my own chairs, and buy my own cushions etc. And I could prove it...

So they then decided to try and give me ALL the money - as you wanted - to do my own thing. No voucher scheme, just a personal budget. Keep bugging them and it may get it started in your area too! It amounts to the same thing as you already wanted.

Added... DONT try discussing this with your local WCServices. Go way over their heads. They will not know what you are talking about. And will try everything to stop it happening as it makes them look a bit useless. Which frankly they are.

Effectively they are now funding me (hopefully in a couple of weeks) to build this http://www.wheelchairdriver.com/BM%20MK ... lchair.pdf

Although not completely, when you consider all the development work, 13 years of it! And I spend more than that on tyres and replacement motors/batteries etc as I am a bit of a hooligan.

[john b]

so when i complain to a higher level (w'chair services already know my complaints)
should i mention that 'i know of a pilot scheme around grimsby' that does this?

am i best dumping the unused nhs chair provided back to w'chair services (i've just kept it as a back up)
to add more weight to the arguement

[Burgerman]

Why not. Although its not 100 percent certain yet, and I am the first. But its about 97 percent sorted! Waiting for finalizing... And a cheque into my bank.

Dumping chair? Dunno. What will your argumemt be?

Mine was obvious. I could provide a suitable chair that works great on/off road and indoors, with enough range to cope with what I throw at it. They couldnt. But in black and white, very clearly laid out on a point by point basis, with details they cant argue with, with the chairs I build actually sat in front of them. So a voucher wouldnt help me. Because thats what they will suggest to most users. Only when the solution is not available on the voucher scheme will they consider a personalised budget, and only if they have decided to go with these personalised budgets yet. At the moment there are two towns, and two people! You need to push them.

[gac3rd]

So they agreed as a pilot scheme with myself..... This amounts to around £6500 every three years.

Congratulations! Thank you for your perseverance on behalf of all of us in chairs who are in some stage of this battle no matter where we are.

[john b]

well i suppose i've built my own chair, a mk1 from your designs, that is far superior to anything they could provide.

all i could get from my w'chair services was a viper or a spectra xtr. tough choice between a turd and a sh!t
so the voucher cost they offered me was about just under £2000, say £1500 for a chair and £500 to be used for costs over 3 years.
i pointed them to the costs of 'more suitable' chairs being around £6000, tho as we all know here, not as good as a burgerman chair.

i can only show them the one chair built, w'chair service have seen me out and about in it, and have commented how good it is to the spec i was asking for from them, but then go onto say, 'we can't do anything like that etc'

[Burgerman]

The difference is that they CAN provide more than the motorised deckchairs, and the voucher IF you push them. But its not easy. For eg I refused their get out of jail card (voucher) in 97, bought an f55 and threatened to sue them if they didnt pay for it as in my own assessement it was the only current chair suitable for my clinical requirements and independence. They paid. Not wanting the same stupid fight they got when I needed a decent folding manual chair when I left hospital 13 years ago...
And a freind recently got a TDX SP delivered. They just keep it quiet.

[Martin O Refurbisher]

Fantastic result!
Very well done John.

Best,

Martin

[baker99]

Well done BM Who would you suggest contacting above wheelchair services? The chief NHS executive for the county or someone else?

[ex-Gooserider]

I agree, congratulations for certain... Doesn't do me a lot of good on this side of the pond, but still it's a good job!

ex-Gooserider

[Martin O Refurbisher]

ex-gooserider

It may be a model for dealing with Medicare or whatever though!

Best,

Martin

[nandol]

go get them tiger!!

[nandol]

here u only have to present 3 budgets from different stores+paper from a dr. saying u need new chair( we choose the type of chair )
so far so good but...the money the social services have to spend yearly goes quickly,so it´s usual they say to u....try again next year,no money left!!
if ur lucky than they pay all the chair,mine costs 11 yrs ago 9.500euros,and they paid all
now,with this new chair,let´s see.....

[Martin O Refurbisher]

Sounds like the same story the world over!

Solution is obviously persistence, and the understanding that we all have of what satisfies them!

Best,

Martin

[Burgerman]

I Started off by faxing, emailing and posting a strong letter full of my problems with the useless wc services in grimsby to every department and boss of any and everything to do with the local NHS hospital.

That resulted in a mass of phone calls, one of which was the head of clinical sciences (I think...) who aranged a meeting with a bunch of heads of departments. This resulted in another person contacting me from another hospital entirely that runs all the WC Services in several towns. She came to visit me, along with her expert WC person, and OTs etc.

They decided the only way forwards was a personal care budget. The two people organising this are from NORTH LINCS CARE TRUST PLUS and PCT whatever that means.

I cant give you there names for obvious reasons. Ask your WC services for info or a meeting with someone that can give info on personal care budgets. But you will need a good reason why you cant just use a standard NHS assessed powerchair, and an alternative dopcumented better plan, to stand a chance.

[nandol]

wise words M.O,but with this new approach to John W.and his determination to fight back a system ruled on money only seeking huge profits,maybe the game turn over.hope so

"money is a whore that never sleeps" michael douglas in wall street-2 (brilliant sentence)
hhave a nice weekend Martin

[Martin O Refurbisher]

Thanks for the details, BM.
Thanks for the good wishes Nandol

Best,

Martin

[baker99]

Thanks for the info BM, doesn't look like I can get a PHB though as Gloucestershire isn't part of the PHB pilot scheme like Lincs. But maybe I can find a way round it, helping the local CHC prepare for when PHB's go national so I could get lucky.

[Burgerman]

Lincs wasnt either. I was the one that got them involved... You need to find an enthusiastic person that actually wants to do some work and GET involved in being part of the pilot scheme.

[Burgerman]

Mmm... Another email:

Hi John – just a quick update to let you know that the application went to the Department of Health last week as planned, and we are still awaiting their decision to grant powers of Direct Payment for Wheelchair Users to us.
So far we are on course, although I am unsure as to whether the developments in the headlines at the moment will affect the turn around time at Department of Health. I will keep you in touch as things develop.

Kind Regards

Name removed | Programme Manager

Transforming Care Team

[baker99]

Got to love the way they manage to make everything drag on, maybe their motto should be "NHS - Bureaucracy at it's best"

[TwoTeasChris]

Got to love the way they manage to make everything drag on, maybe their motto should be "NHS - Bureaucracy at it's best"

NHS
Nothing Happens Soon
etc.

[Burgerman]

Well to be fair this is a new thing. They are trying to get permision to pay users - like myself - directly, who can get more value for the NHS money than they themselves can.

And so far this has taken a few months only. After years of me fighting and funding my own chairs as it was better for me than taking their "voucher" ...

It means they can then wash hands of me as a "user" and just give me what they would have spent. So I can use it more efficiently myself. Big change for a government department. They have to trust me to spend it wisely. And check what I do with it every 12 months. Not that they will understand!

This is a pilot scheme. Me and one other. If this all works, it opens the door to others to get what they need rather than what the WCS think you should have. Big change for the better.

[baker99]

I definitely agree BM this will be a great change, have had to rely on wheelchair services for years and they only ever seem to get worse, thank you for getting things moving in the right direction this will make things so much better for so many people.

[Burgerman]

Especially me!

[Burgerman]

http://www.nelctp.nhs.uk/transformingcare/

This is one of the parts of this care tranformation thing... Personal care budgets. In conjunction with WCS in my case. In case you may want to point your own area/wcs at it. To explain how its happening...

[baker99]

Excellent thanks BM, having a meeting with a rather arrogant OT from WCS any info is very useful

[Burgerman]

More "news" from the people involved...

________________

Hi John – yes indeed, we have some news – though whether it is ‘good’ or not depends on your perspective. Things are not going to go as quickly as we hoped – I would like to pop over with JXXXX again to talk through the Department of Health response with you, they are very supportive but what should be nice and simple has gotten a bit complicated.

JXXXX – do you have any availability in the next 2 weeks that we can coordinate with John to meet up?

[baker99]

Well at least something is happening, good luck.