Getting the runaround again...

Everyday living
1

I’ve got a - not completely wanted - physio appointment at the hospital for 22nd April.

Although my mobility on the whole is excellent, I’m a non-driver, and starting to have problems waiting for a long time at bus-stops, as there is no seat, and I find standing in one place, getting cold, is actually worse than being on the move, and I have become quite distressed at times. Plus I have the added stress that the bus might not turn up, and I could lose the appt.

So anyway, explained all this to the MS nurse, and she suggested I book hospital transport, and sent me detailed instructions of how to get in touch with them, with the appointment letter.

So anyway, having just rung them, and spent some time on the phone answering a load of questions, I also had some questions, having never used the service before - like what kind of transport it would be (car or ambulance), whether it’s door-to-door or all around the houses with other passengers - that kind of thing.

Well, I should’ve kept my big mouth shut, because she said: “Oh, have you never used this service before?” I said: “No, never, that’s why I’m sorry for all these questions.”

She said: “Oh, in that case, you can’t book it with us. The first time has to be a referral from your GP. After that, we can do it.”

So I’ve been completely misled that I could book it, and have been sent the information all for nothing. I should have been told it could only go through the GP, in the first instance.

Tina

2

Yes you should have been told that ( unfortunately, for some reason the clinical staff seem to get confused about hospital transport ) Yes, you will most likely have other patients in the car with you, you will not be allowed to have anyone accompany you unless there is a clinical need and you will not be in an ambulance unless you find getting into a car is very difficult for you, bending etc. You may also have to wait quite a while to get back home as the driver will have to wait until his booked patients have finished their appointments. You can request the front seat of the car if you need more leg room if you find it difficult to bend your legs. You can phone your gp receptionist and they will fill in the form on your behalf if you can’t get to the gp’s to fill it in. They should then fax it over to the patient transport department whereas an assessor will look at the form and decide whether you need transport. You will then either be telephoned with a decision if your appt. is very soon or you will be posted the decision if it’s a little while away. They will also give you details on how to appeal if your application is declined and they should also suggest any voluntary car schemes in you area if need be. This is how it used to be when I was working as the supervisor of the patient transport dept. at my local hospital and I had the unenviable task of being chief assessor.

3

I came within a hair’s breadth of cancelling the appointment altogether, as I don’t really want physio anyway. Ideally, I just want someone to review my meds, and possibly switch/amend doses as necessary. Other people’s GPs do this - I don’t know why I need a damn physio appointment first.

I don’t think I can really suffer all the messing about with the transport - particularly possibly being stuck up there for hours (it’s a late appointment already, and I’ve found out I’m booked in for an hour, so will probably already be quite tired after an hour of physio…)

I’m probably going to end up either cancelling, or roughing it on the bus, as usual. It’s not the bus itself, but standing around at bus stops, which are never provided with seats any more.

I’m not visibly disabled, to look at me, so I’ve got a feeling I’m going to go through all the bureaucracy, only to be told I’m not bad enough anyway. But I do have trouble if I might end up standing half hour or more in the cold. One time, it was an hour, and I was in quite a distressed state by then - especially as that had followed quite a long and physical session as well (they’d had me marching up and down the car park), so I was not in a good state by the time I got home, at all - quite shaky and upset.

Tina

4

Hi Tina

Is there a community transport scheme in your area? If so that may be a better option for you as it is likely to be a private car which you can book for the time you need. It might be worth enquiring about that at your GP surgery or asking at your local library/council office? I haven’t used it but we have one locally which is advertised in our town newsletter and I believe it is well used by patients who don’t drive and who don’t have ready access to a bus service or who are less mobile. Ours, I believe, is staffed by volunteers using their own cars.

Tracey

5

Yeah, I’m looking into that, as we speak. There’s something called “Four Towns Transport”, which, for a nominal membership fee, includes a “dial-a-ride” scheme.

Not sure I’m going to qualify for that either, though, as filling in the form, it wants to know my “Diamond Travel Card” number. Pretty sure I don’t qualify for one of those, so might not qualify for “dial-a-ride”, either.

Tina

6

Did you get to go through the questions they ask you before you let them know that you’d never used the system before? To be honest and I probably really shouldn’t be saying this, in my day it was really very easy to get hospital transport, you just had to answer yes to some of the questions. The nearest question related to you is I’m assuming " do you have severe moblity problems affecting your lower limbs ? " Please do not take the next things I’m going to say as directed to you but a lot of people simply lied on the form and said yes when they really didn’t have severe mobility problems. A lot of the drivers used to come back with the most outrageous tales of what their passengers were like. It was quite clear that they were taking the P**s and totally abusing the system, therefore denying a person who genuinely had a need for transport, a seat on that particular day. But it’s like any other system, it gets abused. It’s really up to you what you do but if you don’t relish the thought of staying at the hospital for ages ( who actually does !!! ) could you see if there are any community cars in your area, you do have to pay but they’re much cheaper than taxis and in my experience you don’t usually have to hang around for long and are more likely to be his only passenger. Oh, and another tip if you do go for hospital transport, don’t answer the question no. 1 with a yes… it asks if you have any other means of getting to the hospital…some people answered that one yes and still expected to get the transport!!!

7

Hi again Fudgey,

No, we didn’t (fortunately) waste our time getting through the whole lot before establishing I wasn’t allowed to book anyway.

She took all my contact details, and we’d established I didn’t have access to private transport, or a relative or neighbour who can take me. And I’d explained it’s not walking per se, but standing for a long time (i.e. at the bus stop) that’s the problem. I do still use buses for shopping, but sometimes I’ve had to give up and go home, when the wait was just too long. Obviously, you can’t do that with a hospital appointment, when you’ve got to be there. You’d have to hang on, even if you were going weak at the knees, and breaking out in a sweat.

Tina

8

Just as an aside Anitra, I have great difficulty with being upright for any length of time unless I can ‘jiggle about’. At times, particularly when standing in a queue, I have felt so ill I’ve felt like keeling over. I went to balance clinic last week and the specialist was talking about ‘autonomic nervous system’ (regulates blood pressure) and ‘postural hypotension’ and is going to ask neuro to referr me for investigation (possible tilt table test). Anyway, in a nutshell, it means that the longer you are upright without moving about, the more your blood pressure drops. Maybe helpful to keep up your fluid intake and if you have a craving for salty food (and your kidneys are ok), use sea salt on your food.

Mags xx

9

Thanks Mags, I don’t think it’s a blood-pressure problem, as I’ve had low blood pressure before (a side-effect of medication), and know what that feels like. I don’t feel dizzy or lightheaded; it’s more the physical strain of just standing there. I also find queueing a struggle - I don’t know why so much harder than walking. I go on organised walks, sometimes, and find the standing about in the car park, waiting to set off, more arduous than the walk itself, sometimes. It really annoys me if we don’t set off on time, because I am standing there getting tired, before we’ve even started. I also really hate meeting anyone and chatting in the street - unless they don’t mind walking with me - because I get much more fatigued rooted to the spot, than if I’m able to keep moving.

I hope you get your issue sorted out!

Tina

x

10

Hi Tina, you could get a shopping trolley with seat, there are some fairly robust ones now, they are very useful for putting coats and handbags etc. in when shops are just too hot but it’s too cold to go out without one! you can get a back pack with seat, have a look, there may be something that fits the bill. Have a look at the walk and rest one, looks quite good (maybe more than you need at the moment)

Alison x

11

That`s a good idea re shopping trolley with a seat.

pollx