Personal care budgets - CASH FOR WHEELCHAIRS!

[Burgerman]

More info by mail...

_______________

Hi John – yes, I wish to define ‘a bit complicated’ – which I suspect would be best done in discussion face to face. However, I’ll try to give a summary here.

As I previously informed you, we submitted our application for extension to our legal powers of Direct Payment for Healthcare (DP) to the Department of Health (DH). I received a very excited phone call in response to the effect that the ministers are extremely interested in this use of DP, and we are the first organisations to have got together to offer it. There are no problems with the application, but because of the keen interest of the ministers the DH wish to extend an invitation to explore the DP for Wheelchair Users in depth. There are certain kinds of invitations that one cannot really decline, and this would fall into that category.

This means that there will be a change of process in so far as your story will be looked at in depth, and that DH will probably be defining what that means and entails. The DH will become partners in this part of the project, and we have to wait for them to get their act together, and we all have to agree what their role will be. The project will become bigger. You will be the first in the UK to receive DP for Wheelchair. There will be a lot of interest nationally in what we do, and that includes what you do.

On the upside – you have will have an excellent opportunity to become a national speaker on the matter of wheelchairs and direct payments. Are you up for it?

[baker99]

Brilliant, I can't think of anyone better to speak on our behalf, well done, if they need any more volunteers I'd be more than happy to help Then I can forget about the next several months of hassle with WCS and even if it takes just as long it would be worth it for the end outcome.

[Burgerman]

Well I said yep... So we wait some more!

[Martin O Refurbisher]

Great!
Keep up the excellent work!

Best,

Martin

[Ashley G]

More info by mail...
_______________

Hi John – yes, I wish to define ‘a bit complicated’ – which I suspect would be best done in discussion face to face. However, I’ll try to give a summary here.

<<<< .... snip .... >>>>

I'm glad it's you they have decided to dance with, John, because I know your b/s filters are finely tuned

Forgive my cynicism but, when I read all that, and interpreted it using the Queen's English, what I think I read was "We want to get involved and interfere at every step along the way, while you build that wheelchair ...."

I could be wrong of course. I'm sure pigs CAN fly, given adequate propulsion ....

Ashley
(tongue deep in cheek)

[Burgerman]

Yes. I dont really know what to think yet. But I suspect a fly has landed in the ointment and completely ruined it. And the expected cheque that was an almost forgone conclusion may be "delayed"...

Will let you know after the latest meeting.

[baker99]

Found this article, you probably know about it already - http://www.muscular-dystrophy.org/news/2428_health_minister_forced_to_accept_failings_in_wheelchair_services

Sounds like the ministers aren't happy that over half the wheelchair budget isn't being used on chairs, instead it's wasted on staff who don't know what they are doing.

[Burgerman]

Not seen that before but basically thats me... And another unknown person elsewhere.

Can see this might not be so quick...

[baker99]

Yep may be slow but it's a big issue, hopefully they respect the public and realise your web site has a big following so not to mess around too much, I have sent off a few emails to MP's to see if I can get in on this personal budget pilot, or at least have some input on the NHS South West Pilot project, I doubt I will get any useful replies but it's worth a try.

[Burgerman]

It depends WHO you get to read your letter. And of course how its worded...

[baker99]

Well surprisingly one MP already replied and put me in touch with two people who may be able to help, and even if they can't get me on a pilot are willing to lean on my local WCS to see what they can do, haven't told them all my problems yet, will see how things go.

Thanks BM for giving me the push I needed to at least try a bit harder, you are a great inspiration, and maybe oneday I will even get my dream of a BM Mark 2 (or 3)

[Katilea]

When I wrote post about driving test and the Quickie Salsa and whether I should try find money towards TDX or accept the Salsa, someone left a reply on my blog saying:

[i]"Personally, I’d go with the NHS while you still can, can see ConDems stopping giving wheelchairs out quite easily (they will say people have to use their mobility allowance to purchase a chair, that’s my personal opinion). At least as long as you have an NHS wheelchair they will have 2 maintain it and meet your needs"[i]

so if we are gonna possibly have to use our DLA in future anyway are they gonna bother with implementing the personal budgets in place of vouchers?

Kati

[Burgerman]

Wheelchairs for us as provided by the NHS or WCS are primarily for INDOOR use, or Indoor/outdoor where you cannot transfer yourself.

The mobility component of your DLA that most people use for a Motability car is for help getting around outdoors.

The two are different things. Thats why they usually only offer 4mph indoor only chairs to most, unless you need a chair to do both so you CAN get out. At which point they often say they assessed you as needing a "Harrier" or "Spectra Plus" and offer you a voucher for you to pay for the difference to get a faster better chair. At which point you can add your Mobility allowance if you wish. Since outdoors = vehicle. and Indoors = wheelchair... If you see what I mean.

But my objection was that I can provide a better solution than anything on their voucher scheme, with limited suppliers, etc. So make better use of the money. Thats how all this started...

Plus, why would you go with the WCS when they can only supply unsuitable equipment that they are incapable of looking after properly. Plus YOU cannot touch it. So what happens when it breaks down at 3Am on a train station in winter on a friday night? I can use the money better, and build more reliable and more usable chairs with a better maintainance and support system myself!

And I proved it to them many times. So they decided to try to help for a change.

[Katilea]

my first appointment they sat me in a spectra plus, I mentioned it be ok if took leg rests off to get from bedroom to lounge cos 90 degree angle, thats when they said oh can't do that.. feet have to be on footplate.. so they sent out someone the next week to do home assessment to see for themselves then decided only the MWD would do it.

so thinking they exclusively used Invacare I booked home demo of TDX thinking that be the most likely chair they'd choose, so when told them I'd done home demo of TDX they booked one for my driving test, but then said they wouldn't pay for that model cos of the cost.

I don't mind having Quickie chair, my manual is quickie and know several with F55's who have been very happy with them. I'm hoping they agree to higher speed package the 6mph rather than just 4 as I pointed out my scooter and old chair were 6mph so had years experience driving at this speed safely,. They know it's to be used outdoors as well as indoors, so just have to wait and see what they say when I go back to clinic on the 27th.

Kati

[Burgerman]

Driving test? Personally when they suggested this I told them to take a hyke.

>>> my first appointment they sat me in a spectra plus,

About 100 yards long, with the driving wheels too far behind you and door frame smashing swing away footrests? Marvelous example of an almost unusable chair indoors!


>>>I mentioned it be ok if took leg rests off to get from bedroom to lounge cos 90 degree angle, thats when they said oh can't do that.. feet have to be on footplate..

Again its none of their business. YOU decide, you take charge, you tell THEM what you want, need, and will be doing! They couldnt asses a goldfish.

>>> so they sent out someone the next week to do home assessment to see for themselves then decided only the MWD would do it.

Added -- cost. A freind of mine just got a TDX SP delivered via wheelchair services. They CAN pay for one, but they wont unless you arm yourself properly. They just prefer to let you pay!

Again they dont understand enough about powerchairs, physics, or much else to make a claim like that. They seriously dont have much of a clue. Hence the reason they gave up trying to tell me, and want to just give me the money to use how I see fit. They cannot FORCE you to accept their views.

[Katilea]

lol! you don't like them much do you! I had to laugh at 'they couldn't assess a goldfish! "

I have speech difficulties too and strangers often can't work out what I'm saying so have to type everything on my device. unfortunately this seems to give some people the idea I can't think either and they tend to talk to me like I'm about 6 years old (I'm 41!! )

The young assistant who was with us when I went for my driving test which was ridiculously easy (round a few cones and trip to sainsbury's and back!) was telling me how to cross the road on the retail park thingy (that wheelchair services is within). Problem with communication aids outdoors is the screens are impossible to see with direct sunlight on them so it was left in the office as I was told I wouldn't need it, I just needed to follow instructions!

They had also set it at a very slow speed, they'd have kittens if they saw me flying around my local park in the old Vibe. lol!

As I had the TDX at my home the week before I had actually tried it on a very steep gravel slope and it went up without tipping no problems, when we was going into sainsburies there was a slight slope down, where they stopped me on it and basically said.. see this slope? this chair doesn't go on one any steeper!.. i decided to say nothing.. they wouldn't understand me anyway and I just wanted to pass their test so I just nodded!

I communicate by writing and had typed some issues on a sheet of A4 when I took the application form back, she just handed it back without even looking saying we don't need this, only the form.

Anyway I've managed to set up a demo for next tuesday of the Salsa in my home and around the park so I will know by then which one will be best for me. I think its silly they don't arrange the home demo's and bring the chairs to us to try in our environment.

I had said in an email that when I had tried the TDX we managed to get it through the A frame with the arm rests on the furthest setting in so they had put them same on that one however the lady said it was too tight. I started typing on lightwriter about the A frame and she interrupted 'we're not interested in whether the chair fits your environment, only if it fits you', then was told I needed to transfer back into manual as someone else had appointment at 2.30pm.

I could easily change them back once I had it here cos it only needs an Allen key the guy doing demo had shown me how to do it, I could get someone else to readjust armrests etc for me. I'll see what the Salsa is like first then I can decide which to go with.

[Burgerman]

What can I say. They are idiots!

But why humour them with a "driving test"? I just plain told them to get lost! They wanted me to get an eye test too! With the same predictable response...

You need the chair to fit you. Your home. Your LIFE and everything you do. You can only test that at home/pub/walking the dog, etc. Dont let them tell you anything. Or ask them to put theior detailed assessement in writing so you can laugh at it, correct it, and post it back to re educate them.

I dont suffer fools very well, as they know, and the mobility industry, and lots of "trained" self appointed industry experts fit this catogory really well.

[Katilea]

Did this person who got the TDX SP get it with full speed available and lights for outdoors?

I had emailed them to ask about home demo but they have only just got back to me and I had already arranged the other, but I had mentioned the 6mph version on the salsa and saying my scooter was 6mph and my previous chair had been. so she stated they can only provide a 4mph pavement vehicle.

Is this only when they fully fund it? or does it apply if I take the vouchers and put the rest to myself?

At the minute they are been as awkward as possible I cant even get a custom colour, though I told them I had heard the TDX was going to be available in other colours as standard (cos I wanted black) they said only comes in red, so does the salsa.

In US they have range of colours for TDX why can't we get them over here?

Kati

[Burgerman]

The guy is called Laurie Ardito. He needed something small and works for indoors inside his house after they already got him something that didnt! (your favourite spectra plus) Another waste of money.

Yes full speed, and lights as the law requires. They paid for all of it, albeit with some extra money they arranged from some other council care fund or some such source or whatever, after he refused the voucher. He lives about 4 miles from me. Uses it indoors but also dog walking, horse trials etc.

They also paid for my first 6mph F55s with lights, that I chopped up to make it work properly after I insisted rather strongly. They made me pay 200 towards it... (the extra for 6mph) A mistake for them because that made it part mine. So I could get out the saw!

As for colours I wouldnt know. I powdercoat everything black!

As for getting your own way, you need to figure out the angles. More specifically THEIR angles for not giving you what you need. And presume they are all stupid unless they show you otherwise, and so far I have not been proven wrong. Right up to the latest battle and the title of this thread. At which point we seem to be having a big change finally!!!

[baker99]

I thought I had it bad but katilea I feel really bad for you, I don't see how they can treat you that way, personally I'd contact a lawyer and see if they can use the disability discrimination and human rights act against WCS, it's just unacceptable what they are doing.

BM I got a reply from the DoH, doesn't look like I will get in on the personal budget with you, but the future does sound promising from their reply, and personally I have some other options that have been opened up for me, here's part of their reply -

We are planning to introduce a personal health budget pilot focused on wheelchairs in the next few months, however this will be focused on one locality (Linconshire) and will not be extended initially to other parts of the country. We hope that the learning from this site could pave the way for individuals across England to be offered personal health budgets for wheelchairs in the coming years.

[Burgerman]

Actually theres two of us. In two areas. So I was told. But hopefully it will soon be everywhere. Anyway, I have another meeting on thursday. So will see what happens then!

[baker99]

Hopefully you will have some good news to share come Thursday, good luck, I will continue with my efforts too with the South West SHA, have been given an email address to get in touch directly with the South West lead as the DoH aren't dealing directly with all this yet (obviously they are with you and the other guy just no one else).

I am quite impressed that I got so many replies so quickly today, I'm used to the NHS taking ages and not giving any useful information.

Daniel.

[Katilea]

I don't think it will come quickly enough for me either.

If I choose to take the vouchers even to then get the Quickie if it was suitable and more affordable for me, would I then be entitled to add whatever features I wanted to it?

What is top speed on the TDX? sure I read it was like 7.5mph, they cant expect me to pay like another £3,500 on top and for them to still restrict it to 4mph can they?

one last thing if I own it rather than them and later found an aid that would help me to stand and maybe manage a few steps between transfers will they be able to take it back, if I was still using the chair everyday for most of the time? (I'm talking a few wobbly steps with assistance here, not suddenly been able to run around the village or walk everywhere).

My problem is although I have strength I have little balance in trunk muscles and co-ordination difficulties plus mild involuntary movements in arms. I feel I'm only just qualifying on the grounds it is unsafe for me to attempt to walk as I don't have the balance and walking aids like crutches, sticks go from under me as I can't keep hold of them and they don't land in right positions if my arms twitch as I'm trying to move the stick and keep my balance. I am wanting to try a sensory balance aid combined with weighted wristbands to keep arms steady on a walking frame. I have seen it on an american website but I'm worried it would affect me qualifying for the chair for the sake of a few wobbly steps and been able to stand for a few short periods a day (which I believe has therapeutic and health benefits).

There rules are so inflexible its frustrating! I don't like to mislead anyone but receiving part of the funding is the only way I will be able to afford a decent chair that would give me maximum independence around my home environment.

[baker99]

It may be worth you contacting your local continuing healthcare department as well and seeing if they can help, or getting backup from a physiotherapist, my WCS states I can't apply again for another 5 years, ask for thier procedure document which you are entitled to, if they say no contact PALS (this maybe a good idea anyway so they can see your case and act as your advocate).

[Smark67]

Hi there

Not sure it's relevant but the funding I had agreed by my PHB was for a TDX SP. Total cost £8200, of which £1500 was a wheelchair services voucher.

[Burgerman]

Katilea it needs you to put all of these points, IN WRITING to them before it happens. That way your replies can be kept, and you have it in black and white.

As far as speed is concerned I think if you are using the voucher, you can choose absolutely any options that suit you. Be a little cautious with the 7.7, and definitely with more, as range, plus torque suffers. 6 is a happy medium for most users. Unless you dont go far, weigh little.

Its like this. A Fat 25 stone guy, needs FIVE TIMES the battery power that a 5 stone child does. So with the same batteries, the 5 stone person can either go a hell of a long way, or have much greater speed, as the torque isnt needed and batteries will last all day.

People dont consider this much when looking at chairs. 7.5 should be OK for average use and a "medium" average 8 or 9 stone girl. If you weigh less then get an 8.5 groove! If you weigh more get a 6mph option with 4 pole motors. If you are (not you personally!) built like a truck get 4 mph with 4 pole motors. In all cases with group 24 batteries. Avoid anything with 22nf (50Ah) batteries unless you are a 13 year old ballerina. Or a small child. Get the biggest amp control system option avasilable, and access to an OEM programmer. There are people on here that can help when you know what you need...

[Katilea]

hi smark

so who paid the rest? Did you get to have the full speed package when they only provided part of the cost in vouchers?

Wheelchair Services are saying they can get a Quickie Salsa for around £3,800 so I'm getting a home demo to check it fine for park where I walk my dog (clinic appointment is week after). I'm grateful they have agreed to cover the seat riser and tilt in space cos they can get it all on that chair for that price but will only provide 4mph version.

If I get opt for the vouchers maybe I can add money to get higher speed but then would I still get £3,800 in vouchers? Everyone I know who has opted for vouchers towards a powerchair of their choice only seems to get around £1,500 and I'm sure even they can't get a chair of that spec for £1,500!

[Burgerman]

You should get a voucher to the same value as what they assess your needs for. An equivelent. But then have a "list" of approved places and chairs to buy from. All which are over priced and give WCS a back hander...

I can buy a Salsa cheaper than the WCS can. There are advertisers on my pages that appear occasionally thatr offered me many chairs at 50 percent discount!
The TDX is better than the salsa. Speed is your choice if you pay extra.

[Katilea]

hi BM

Well my scooter and standard chairs have been a 6mph and I'm happy with that. The main road gets very busy here I try and avoid busiest times but I like to have that extra quick burst of speed to get across out of the way (specially when a double decker bus is heading in my direction!)

I only really go full speed once dog is off lead, she likes to race me down path when we got the park to ourselves, or if I got to go somewhere myself such as down to doctors its much quicker if I can zip down shortcuts at full speed and be there in about 5mins!

As you say I didn't go far in them as they were for local trips and not usually in them for longer than a few hours as they are both too big to get around my house anyway. which wasn't a problem when I was still able to walk around my house with a rollator.

I'm just reaching the 'full time in same chair all day stage' so you're saying the lower speed options are better for this as the batteries last longer? The tilt and seat riser functions will get used quite a bit around the house all day too.

I reckon I could get it in the small co-op/post office in the next village, but to get there involves crossing two busy T junctions both on a bus route so I need to be able to zip across the road quick to pavement on other side, so the extra bit of speed helps even though I don't drive it that speed constantly all the way there and back (usually have dog trotting alongside on lead).

I'm thinking as long as Salsa was fine in park I would be happy with that I don't see why I can't pay them the difference for 6mp version and they still provide it free.

[john b]

katilea, check to see if wcs are offering any maintenance cost on top of that £1500.
if you get a chair with the voucher you need to pay for any maintenance over the 3 years.
you can choose wether to keep a bit aside for that or wether to put it towards the cost of the chair.