The transport saga (next instalment)

Everyday living
1

OK, my hospital appointment has rolled round again, and as usual, I’ve tried to book “comunity transport” (not hospital transport), which is a sort of council-subsidised local volunteer driver scheme.

As usual, it’s the day before my appointment, and I still don’t know whether I’m OK for transport or not, as they seem unable to confirm until the day before.

I just got a call from them, and was delighted to hear it was all OK, until the nice lady asked: “It IS only one way you wanted, isn’t it?”

“Er, no, of course not - I would like to come home from the hospital!”

“Oh. Hmmm. Do you know how long you’ll be?”

“Well, not really. It has sometimes been as little as two minutes, but I can’t guarantee it, as it depends whether they are running to time, and whether or not he wants to do a full neurological examination, which would take longer.”

“OK, well I don’t know whether we can do that. I’ll have to check the book and call you back.”

So now I’m teetering on the brink again, not knowing whether I have transport. I’m absolutely positive I told them I want to go both ways. I was even told to call when I come out, and am ready for pick-up. I know it’s silly, but I get in a terrible state already about these hospital appointments, and am popping the valium. I’m sometimes tempted just to cancel them altogether, because nothing positive ever comes of them - I know they’re not going to reveal some breakthrough that will help me. It doesn’t seem worth getting in this state, and all the consequent effects on my health (I’ve actually been recorded as having a tremor I DON’T have, before, because I was literally shaking with nerves). I know it’s only once every several months, but I’m not sure it is in my best interests to keep putting myself through this stress, that usually sees no change to meds, and most symptoms dismissed as “Not MS”.

I’m in a complete state this morning, and the appointment’s not even today. I keep trying to think ahead 'til Wednesday, when it will hopefully all be over for another several months.

Tina

2

Hi Tina

My neuro appointment is on the 16th August and I’m already writing lists of things to take with me, questions to ask, train timetables etc. I’ll run through said lists umpteen times between now and then and will only settle down once I’m actually at the hospital and it’s all over.

At least I don’t have the added stress of how I’m going to get there and whether I can get back. That would put me in overdrive ‘OCD’ mode. (Apologies to anyone who actually has OCD, but I can’t think of any other way to describe my behaviour in the run up to an appointment!)

I think, in your situation, I would have to enter my ‘Victor Meldrew’ stage! Firing off letters to anyone who will listen about such a hopeless situation that stresses the patient out so much knowing that stress makes the condition much worse. I’m thinking the hospital trust, PCT etc.

Tracey x

3

Thanks Tracey, the trouble is, I don’t think it’s anything to do with the hospital, PCT etc, so no point complaining to them. The basic problem is me not driving.

I don’t think I’d be considered “bad enough”, for patient transport, and even if I was, I think I’d find it just as stressful - potentially having to be ready hours before my appointment, because we’re going to go all round the houses, and maybe not being able to go home straight afterwards either, but being stuck up at the hospital.

I know they woud say: “Well, if you’re really desperate, you wouldn’t mind all this”, but I’d honestly rather not go at all, than have it take hours, and go all round the houses. It all comes back down to the aggravation not being worth it, for an appointment that usually turns out to be pretty futile anyway.

The hospital has absolutely nothing to do with the communitty transport scheme. I appreciate it’s staffed by volunteers, so you perhaps cannot expect the same standards of professionalism you’d get from a commercial organisation, but it’s really ridiculous that a patient who rings up trying to book a return journey is only booked one way, and then asked: “That IS what you wanted, isn’t it?”

Is it common for hospital patients only to want to go one way, I wonder, because they have alternative arrangements for the way back? I would have thought the norm was that they usually need to go both ways.

Tina

x

4

Hi Tina

Sorry, I didn’t explain my thinking properly there! I appreciate that it’s not the hospital or PCT that run the community transport scheme but there has to be some alternative for patients who don’t drive, aren’t eligible for hospital transport and have no friends/relatives locally willing/able to drive them?

You can’t be the only patient affected by this ridiculous situation. Maybe they need to relax their rules about the eligibility? No doubt it is the old chestnut about funding in which case I would also write to the local MP. In my mind, there is no point keeping quiet about things which have a big impact on our lives; things won’t change unless we request a change.

Would it be worth you being totally frank with your neuro on Wednesday (assuming you can get there and back, of course) and telling him there is no point in you attending a routine check-up each year unless something changes in your condition and you request an appointment or unless he has something useful to offer you? You can tell him that the stress of getting there is simply not worth the end result.

Tracey x

5

Hi Tracey,

The transport scheme, who had earlier confirmed they could do the outward journey no problem, and were only supposed to be checking the homeward leg, left a message an my answer phone, saying they could now only do the outward leg at 2.15 - which is a whole hour ahead of the appointment - for a ten minute journey. So I’d be stuck in Reception for 45 minutes, getting more and more nervous. They left NO message about the return journey - which was what I was waiting to hear.

So of course, I had to call back, they said they could only do 2.15 for the outward, and STILL didn’t know if they could do the return at all. I ask you, what is the point of that? So I told them to forget it altogether. I don’t want to get there and be sitting around nearly an hour, getting myself in a tizz, and I don’t want the uncertainty of not knowing if the journey home is OK.

I’m now deliberating whether to cancel the appointment altogether, as it looks as if it’s going to be pouring down with rain all day, and I will be having to make my way by public transport. I expect the appointment will be a waste of time, as usual. So I’m really within a hair’s breadth of telling them it’s not worth it.

I don’t think I’ll be using the Community Transport scheme ever again, as they’re too incompetent and too unreliable - quite apart from having to endure comments from the driver last time, about was I sure the MS wasn’t “all in my head”. Well, yes, it IS - but not in the way he means.

Honestly, I feel on the verge of crying in a minute, and it doesn’t seem worth it, over a routine appointment that never seems to achieve anything anyway. Unlike you, I don’t have a big list of things I want to discuss. I don’t have any at all, really.

I expect the conversation will go: “Well, we haven’t heard from you for a long time, so I suppose things are OK?”

“Yes, much the same really.”

“Have you managed to cut down your Baclofen?”

“No, I haven’t even tried.”

Then I’ll have to tell him my doctor put me on quinine, which I don’t suppose he’ll like very much, but seems to have worked much better than the completely pointless physiotherapy, which was all the hospital came up with.

So no, I don’t want to reduce Baclofen (I know how bad I am if I ever forget one), I don’t want to stop quinine, which is helping (again, I notice an immediate change for the worse if I forget it). I don’t feel brilliant - in fact, a lot of the time I feel pretty cak, but I don’t think they’ll offer to do anything about it, so why do we bother having the conversation?

I know that I “should” go, as someone should be reviewing me, otherwise I risk dropping out of the system altogether. But the appointments themselves are making me ill!

T.

x

6

Oh Tina,

What a horrid situation to be in. You’re right about the weather and standing about in the rain isn’t going to do you any good at all. We’re in the midst of a storm right now and you wouldn’t want to be caught out in one of those - the rain is torrential!

Your appointments do sound like a complete waste of time. Last year my appointment was more of a courtesy as I had been reasonably well and there was only the fatigue to discuss. It’s always useful to get my neuro to suggest meds to my GP though as my GP is so useless! Also my neuro is absolute eye candy (if I get the right one - there are two at the hospital and one is young and lush and one is old and wrinkly!). That alone is worth the 2 hour journey but don’t tell everyone, they’ll all want to switch hospitals!!

Anyway, I don’t know what to suggest. Would they really cross you off their list if you didn’t go along to futile appointments that make you so unwell and cause so much distress just by getting there? I think I would definitely ring and explain the situation for this appointment and see what they can suggest you do about it?

Sometimes, there really don’t seem to be any solutions. I hate that!!

T x

7

Oh Tina, this is chuffin` rediculous!

Of course people need to travel to AND BACK from hospital for an out-patient appointment.

And as Elmo says, you cant be the ONLY patient who needs transport, which doesn`t qualify for hospital transport. Oh I am seething for you hun.

It`s like when I ask for a hoist at medical appointments and am met with a look that seems to think I am the only patient who ever needed a hoist or a commode with a pan underneath.

Can you believe some commodes dont have a pan, as they go over a toilet. But they cant seem to offer a hoist which will fit into a toilet. When I had the kidney scan, I had to literally wee onto a small receptacle on the floor! Talk about humiliation when it splashed everywhere!

So, back to your problem. Do you have an MS nurse you can talk to? Someone HAS to take note of how upset all this has got you. As you say, what`s the point of getting all worked up and making your symptoms worse, for an appointment that has no beneficial effect?

I despair, I really do.

luv Pollx

8

I despair too…what a crock of #%€$ !! Catherine Xx

9

Hi Tina, I know the transport is run by volunteers and is not a business but even so, that is highly incompetent. I’m sure some people will only want a lift in one direction but I would have thought that most people would want to go there and back. I also get very upset and stressed before my appointment and I only see the nurse who I have never found very helpful but at least I’m on betaferon so I feel that I need to keep going to the appointments so they can keep an eye on that. If I wasn’t on betaferon I don’t think I’d bother going tbh. I understand you thinking you should go but I also understand what you mean when you say the appointments are making you ill. Good luck if you do go. Chyl:-)

10

Tina, it is a b*h of a situation to be in. The trouble is with the patient transport system is that there were so many people abusing it that they had to bring in the eligibility rules. Our drivers would report back with facts that there were often cars in the patients driveways when they dropped them off/picked them up and they would find out that the patients were not using their own cars because they found it difficult to get a parking space at the hospital ! I appreciate that it is notoriously difficult to get a space at the hospital at certain times of the day but that does not make a person eligible for transport. Another reason was that they didn’t like to bother their relatives to ask them to take them to the hospital. I always remember a patient whose son lived next door to her and she admitted he could drive her to the hospital but she refused to ask him as… and I quote " he is a very important person in Norwich and I don’t see why he should waste his time taking me to hospital when there are drivers who don’t have anything else to do" . Unfortunately, that is what the patient transport system is up against in a lot of cases. I must say that your community car service sounds very slapdash, it’s very likely that a patient will want a return journey and they seem as if they can’t plan anything and the comment that the driver made about your condition is unforgivable…he should be reported to the head of the scheme for that, volunteer or not. Do you have an ms nurse Tina?, Is it possible to speak to them and basically discuss anything over the phone so that you don’t need to go to the hospital. Patient transport is a pain in the ae and I’m sorry that I don’t have any answers for you but unfortunately there has to be an eligibilty criteria or absolutely everybody would take advantage of it and there would be meltdown. i do hope you can sort something out as you don’t need all the stress this is causing you.

11

Oh I’ve just had a thought Tina. Would your GP,ms Nurse or neuro be able to put a word in about your difficulty for getting transport? The hospital transport people used to take notice if they had evidence (especially from someone within the hospital ) from a clinician, that the patient needed transport . If they felt that you could not use public transport for instance ( because of difficulty standing etc. ) or that the community car service was not reliable therefore causing undue stress that us ms’ers do not benefit from, then patient transport could be allowed. Worth a try.

12

Hi Tina,

Don’t know if this helps or not, but I’ve used ‘Hospital Transport’ before - and shared a car with quite mobile people going to chemo sessions …poor people!!

I even had Hospital Transport provided for a completely non-MS appointment - just seemed to be that I was ‘qualified’ thanks to the MS and a 15-mile journey (each-way) without any other means of transport.

(Also, my mother gets Hospital Transport occasionaly, presumably because of her age. She doesn’t have any health conditions - just seems to be because she’s getting on a bit and there’s no public transport anywhere near her.)

Have to ask, for a 10-minute journey, would a minicab not be an option (…I’ve used those aswell to keep hospital appointments nearer home)? Certainly not the cheapest alternative, but would you perhaps be entitled to some kind of refund under the circumstances?

By the way, how does one ‘qualify’ for Hospital Transport? Maybe it would be worth you enquiring?

Hope you manage to get something sorted out! As you imply, this is just an extra hassle that you could really do without

Dom

13

Thanks everyone.

I know there aren’t any magic solutions, and in some ways I do feel it’s my own fault for never having learnt to drive. I think THAT is my disability, more than anything else that could be measured. But we don’t have crystal balls, and spend our whole lives planning around someday becoming ill, do we?

I also aware I’m stressing about this more than most people would - but I’ve always been that way. Whether it’s that I’m a bit OCD, as Tracey puts it (never diagnosed, but have “tendencies”), or whether MS has somehow lowered my stress tolerance, I don’t know. Probably a bit of both! I think I have a bit of a phobia surrounding the appointments in the first place. Not that anything awful has ever happened, but I think it’s the dreaded neuro tests, and being asked to do stuff I can’t do properly - or at all. Although the appointments have more often been a very brief chat, and no neuro examination at all. But that’s another thing I don’t like - not knowing what you’re going for. I don’t know what the rules are about neuro exams - whether you’re meant to have one anually, or whether it’s luck of the draw whether they want to do one or not. So for anyone who’s anxious about them, there’s the added anxiety of not knowing whether you’ll even have one, or whether you’re just going along for a chat. It’s only a little thing, but it would greatly help me if the appointment letter specified, and then I wouldn’t be worried about something that might not even happen.

I always feel much worse around the time of my appointments than just about any other time. This afternoon I have developed - quite literally - a pain in the bum! I’m sure it’s an MS thing, as I do have it from time to time - a type of spasm. So I’ve taken my Baclofen on the early side, hoping it will ease.

It’s crossed my mind that I could volunteer as a telephone bookings person with the transport scheme, and probably do a much better job. But on second thoughts, I probably couldn’t cope with the incompetence of the others, and would end up having words.

It’s not the only area where they’re been sloppy. I’m quoted a different mileage rate nearly every time I book, and then actually charged a different rate again (but don’t complain, as long as it’s lower). In the past, they’ve always called me the day before the journey to confirm it’s booked (or not, as the case may be). So when I checked, this time, whether they’d be doing the same, I was told: “Oh no, we NEVER call people back - think of the expense! YOU will need to call US on Monday afternoon!” Hmmm, strange, then, that they’d always called me back before, and even stranger that they still called this morning, to confirm it was booked, despite insisting they never do. Even though they’d forgotten the return trip, and it turned out they couldn’t really do the outward either, unless you count an hour early as “close enough”. I honestly can’t spend an hour stuck in the waiting room - the panic starts as soon as I get in there. Imagine what state I’d be in by the time I was finally called. And then it would all go down in the notes as due to the MS, rather than I’m having a panic-attack!

T.

x

14

How far to the hospital is it ? could you save yourself some stress by getting a taxi there and back,seen as its not that often,i only go once ayear,just to ‘keep me in the system’ i dont drive anymore,and if my partners working i book a taxi,there and back,it costs me about £16 but worth it because i wouldnt want to try to cope with what you are having to cope with.

jaki xx

15

Hi Tina

What a ridiculous situation with the transport arrangements, as if you would

only want to go one way!

As these appointments stress you, and I completely understand, would it not

be worth saying to the neuro that instead of having annual assessments, could

you make an appointment if you required one. They surely can’t strike you off

their books, if the appointment was left open ended.

Hope it all works out for you, both the transport and the appointment.

Pam x

16

P.S.

Sorry Liam, our posts crossed.

In effect, the criteria for hospital transport appear to be much the same as for the higher higher rate mobility component of DLA (as was). As I’d have no chance of getting even lower rate, I don’t think I’d even be on the scale, as far as “needs” are concerned. Not having a car - or a licence - are not factors that would be considered relevant.

As far as mini-cabs are concerned, Bristol fares are the dearest in the country. With hindsight, I’m sure I was being ripped off, but I used to pay about £16 each way - meaning more than £30 the return trip. Round the corner to the station - a journey of more like five minutes - is over a fiver, so I suppose the hospital is not out of proportion, but still a rip-off.

When I was still employed, I used to just grit my teeth and pay it, but since I was made redundant last year, I can’t justify £30 for a routine hospital visit.

If it was chemo, or some other essential procedure, and I might be unsafe to make my way home on public transport afterwards, I suppose I’d have no choice but to stump up. But I deeply resent it for a routine outpatients appointment.

Tina

17

Hiya Pam (and Jaki!)

Yeah, at one point (my first appointment, I think), it was even suggested I could cancel the next if I was still doing OK. But maybe they now feel I need monitoring more closely, because he wasn’t happy with how much my Baclofen use has escalated.

Yes it has - there’s no getting away from that. I’m now on 3x20mg a day, which he thinks is a lot, for someone who seems pretty able-bodied and unaffected. But maybe I ought to turn up one time without the Baclofen, as an experiment. So he can see what I’m really like if I haven’t taken it! I’m not surprised he usually finds I’m “not too bad”, when I’ve already taken every muscle relaxant and painkiller it’s legitimate for me to take, before I’ve set off for the appointment.

As I find them so stressful anyway, I certainly don’t want to tackle them with insufficient medication.

Tina

x

18

Hi Tina,

Would your neuro allow you to have a telephone appointent with him? No worries about having an examination, no transport problems, just the chance to chat things through. Would it be worth calling the hospital tomorrow morning and asking do you think, if you explain about these ridculous transport problems you’re having?

Hilary x

19

Hi Hilary,

Do you know, I’ve never, ever, thought of that! I’ve started doing it with the GP quite often, because, let’s face it, there’s often little to see with MS - she doesn’t need to see me in person for me to explain the problem. Plus transport is starting to be an issue with that too, since they took off the only direct bus. So phone is much less hassle, plus I can often get a much sooner appointment. If I insist on face-to-face, they may say: “Hmmm, she hasn’t got anything now 'til next month now”, whereas if I say: “Phone would be OK!”, she may miraculously be able to call back the same day. I suppose it allows them to exploit one of the many missed appointments.

It never crossed my mind whether consultants might be similarly flexible. I’ll probably keep tomorrow’s appointment, as it’s a bit late to start messing them about the same day. BUT, I will mention that I’m getting very stressed, and that increasing problems with transport aren’t helping. I know I’m lucky I do still have the option of getting the bus, but I hardly relish it, and I expect the day will come when I can’t face it at all any more.

Then again, I think the hospital is supposed to be closing next year, and all the services relocating to a nearer one. Still not exactly walking distance, but a bit more choice of bus. Not positive whether that will include the MS clinic, or whether that’s staying where it is, but there’s at least a chance I might not have so far to go, in the longer term, and it will be a bit better served by public transport.

That might be another thing to ask tomorrow: do they know if they are moving, or when?

Tina

x

20

Hi, if the neuro doesn`t offer a telephone appointment, what about your MS nurse…assuming you have one of course.

In the days when it was thought I had PPMS, the MS nurse held a clinic and sometimes a home visit.So it wasnt always necessary to see a neuro.

Is that a possible option?

I look forward to reading about how it went tomorrow.

luv Pollx