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As suspected (community transport)

Sent off the application form Saturday.

They must have received it today. As suspected, as I do not already have a disabled bus pass, I’m not entitled to free community transport, and would have to pay - and I’ve sd all chance of getting a disabled bus pass - you need to be getting higher rate mobility DLA (I’ve sd all chance of that either - everything is conditional on something else I won’t get).

I dunno how the charges would compare with the taxis. Because I didn’t speak to her in person, she didn’t say anything about rates.

I suppose if it would be significantly cheaper than a taxi, it might be worth still doing anyway, but if it’s going to work out almost the same, I’ll end up continuing to struggle with the bus.

Why can’t they understand that still being able to walk pretty well is no guarantee of being fine to stand around for hours at bus-stops with no seats - especially if I’ve just come out of an hour of physio, which will mean I’m already knackered?

I guessed it was going to be pointless before I sent it off, really, but I did enclose my £5 for the membership fee (which is not the fee per ride). I’d hoped they wouldn’t actually say no to anyone who’d already sent the money, and explained on the form she has MS.

Tina

oh tina,

thats some harsh treatment they’re giving you.

do you have ring & ride where you live? would they be any use?

why dont you write to your MP explaining how hard it is to stand waiting for a bus?

good luck

carole x

Hi Carole,

I think it must be the equivalent of a “ring & ride” - it just isn’t called that.

It’s such a depressing waste of time and effort trying to get these things sorted. I seriously think I will be dead before I qualify for anything - whether it’s money, or more practical help. Can’t get A, unless you get B, unless you get C…

It doesn’t seem to occur to anyone there’s anybody left who doesn’t have a car. Even the blurb from the hospital - which, after we’d discussed it, did include advice (which turned out to be wrong!) about booking hospital transport - was mostly about where to park the car. As if they couldn’t imagine having a patient who wouldn’t be arriving that way.

I suppose it’s my own fault for never learning to drive. But when you’re young, you don’t plan everything around some day getting ill, do you? I was always very apprehensive about learning, and 20 years ago, when I first moved here, local transport was much better than today, so it wasn’t really an issue.

Gradually, my health has deteriorated, and the transport has got worse too, so it’s not one thing or the other that’s restrictive, but a combination of all of it.

Tina

Hi Tina Not sure if this still happens but The Red Cross used to provide free patient transport to hospitals in our area, free of charge and regardless of circumstances. Xx

It might be worth contacting your local volunteer bureau, they may be able to help with transport.

Good Luck!

Hi Pat,

No, the local criteria for a bus pass are that you must be receiving higher rate mobility! I wouldn’t get any level of mobility, as I don’t have a problem with mobility - I’ve got a problem with standing still! And I’m not stopped from driving for health reasons - I just never learnt. So there’s nothing to cover someone like me who’s never held a driving licence, and who isn’t well, but not yet ill enough for higher rate mobility.

T.

I’m wondering exactly how many people on higher rate mobility would be able to avail themselves of their free bus pass? You’ve still got to be able to get to/from the bus stop, and on and off the bus, haven’t you? So how many of those qualifying would feel happy and confident about using it?

I’ve no idea about the REd Cross, Mrs. H (sorry to read about your troubles on another thread, by the way - hope you’re bearing up!)

The council website doesn’t list them among the organisations who might be able to help - but it’s not renowned for being the most comprehensive and up-to-date source of information. Local library might be better.

Tina

x

Hi Tina Just done a quick google search…I thought they did…this might help. www.redcross.org.uk/What-we-do/Health.../Transport-service Xx

Maybe this would be a viable alternative - no eligibility critera?

http://www.bristoldialaride.org.uk/citywide.html

HTH

MrsH, couldn’t get that link to work - keep getting “bad request”. Is it possible there’s a typo in it? It doesn’t look like a proper link, with the dots in it. (Then again, mine never render as links at all, dunno why).

The Bristol one, Anon, seems similar to the scheme I’ve already tried, which is called Four Towns Transport. I’m technically in S. Glos, just over the border, not Bristol, so don’t know if I’d qualify for anything that’s supported by Bristol City Council.

However, if the prices are indicative of what the local one charges people who “self certify”, rather than being on higher rate DLA, it would still be much more affordable than a taxi. £2 each way to the hospital would be an excellent bargain, and possibly cheaper even than the bus! Taxi has been as much as £16 each way before - so £32 for a trip to physio. I don’t think so!

P.S. Don’t mean to be rude, but why did you need to go Anon for this helpful and non-controversial post? When I saw “Anon”, I got panicky, and thought it was going to be somebody giving me a load of grief over something.

Tina

x

Sorry…I’m rubbish at this I.T malarkey !! Try this http://www.redcross.org.uk/What-we-do/Health-and-social-care/Health-and-social-care-in-the-UK/Transport-service Xx

Tina,

Even if you are just on the border, might be worth enquiring anyway ? Or if not maybe this link might be closer to you?

Just feel more comfortable being anon - Glad you found it helpful. Hope it all gets sorted soon.

http://www.kingswoodct.org.uk/index.html

Hmmm, Kingswood might do it! My destination is certainly in their catchment area, yet my home address isn’t. But would it really matter which end of the journey falls into their territory, as long as part of it does?

I notice they still cross-refer to Four Towns, which is more local to me. But I’ve tried to get in touch with them three times this morning, to find out what they actually charge folks who can’t produce a bus pass. So far, engaged every time (I imagine a lot of people booking transport).

Tina

Ring them all to you get a yes! X

Success! Just tried Four Towns for the fourth time (is there a mystical significance about the number 4?), and they said they will do it for £4.70 return!

That is soooo much better than potentially up to £32 for a taxi.

The only slight fly in the ointment - they said they will phone probably Friday, to confirm they can do it. If they can’t, it will obviously be too late to try anywhere else, so I’ll be stuck with bus or taxi. Let’s hope it all comes back OK on Friday, and they say they can do it!

Phew! I do worry about what happens when (OK, I know it’s only an IF) I get too ill to chase all these things for myself. I honestly think I have to do more project management in connection with this bloody illness than I had to do when I was working! What happens to folks who can’t research phone numbers on the web, or ask here, or have the patience to try and try before anything ever gets sorted?

Tina

x

That’s great news Tina, will keep my fingers crossed for you on Friday. X

Hi Tina

I’m glad your perseverance paid off in the end (well, fingers crossed!) but where does that leave people with severe cognitive difficulties? Why is none of this information made freely available to patients upfront?

It reminds me of the planning permission notice to demolish earth in the “Hitchikers’ Guide to the Galaxy” which Arthur Dent eventually found "on display in the bottom of a locked filing cabinet, stuck in a disused lavatory with a sign on the door saying “Beware of the Leopard”. "

Tracey

Completely agree, Tracey!

The only official information I received was WRONG! They’d said I could ring up and book hospital transport myself - which I couldn’t. The first time, at least, it can only be done by referral from your doctor. Clearly, I shouldn’t have been sent info that sent me off on a wild goose chase. It’s a waste of my time and the hospital’s, if I’m ringing up trying to arrange something I’m not allowed to anyway.

The annoying thing was I was told either I OR my GP could do it. Remembering how inefficient the surgery had been about getting me a hospital referral in the first place (it took a fortnight for anyone to call back), I thought better not to involve them a second time. So volunteered to sort it out myself, unaware the rules didn’t allow it.

And nobody (except here) has mentioned that there are alternatives to the official hospital transport, or having to pay through the nose for a taxi. You would think all patients who might have mobility problems (wouldn’t that include everyone with MS?) should be advised there are organisations who might be able to help with transport.

“Beware of the leopard!”, indeed.

I’m already feeling tired, even though it’s only a little bit of research and phone calls. I do fear the day will come when I’m unable to cope with stuff like this, and end up giving up, because it’s all too much hassle.

Tina

x

It’s like that with travel costs for hospital appointments.

I had been making the trek to the hospital for a whole year (which in the first year of diagnosis and DMDs involved 6 appointments) before another patient informed me that, as I receive Tax Credits, I could be claiming the travel costs back from the NHS.

Nowhere in any of the hospital letters is this information freely given and I have since noticed that there are a few A4 size notices pinned up in the hospital but they are certainly not on display in prominent locations. A notice that small is very easy to miss especially when you are worn out having just undertaken a 2 hour journey and a lengthy walk through the entire hospital . (Why is it that the Neurosciences Clinic is such a long way away from the car park/bus stop?)

Tracey x

No wonder youre worn out with all this faffing about! Im not surprised, as mental work can be just as fatiguing as physical effort.

Fingers crossed it goes right!

luv Pollx