Rads Appointments Rant

Public Archive
1

I seem to be ranting a lot at the moment - perhaps the whole anger thing is really hitting me at the moment, I’m just so sick of all of this stuff.

Well, let me fill you in on St James Hospital’s phone call to me today.

I have some transportation worries because my friends all work so I don’t have anyone who can help out with getting me to and from St James on a daily basis, so I can’t arrange a rota of friends to share out the load.
I don’t have any family locally that can help out either.
My partner works daily too in another town.

We can only afford to run 1 car and my partners workplace is not within easy access of public transport.

So the only options we felt we had was for me to take my partner to work and use our joint car for my appointments as we really can’t afford for my partner to take unpaid time off work, we’re living on £60 a week for food and household expenses.

I don’t want to take patient transport because I’ve heard it’s a nightmare, that it takes 4/5 hours out of each day and people find it very depressing to have to do this daily.

However, I was concerned about my levels of tiredness due to recovering from Chemotherapy.

I want to be able to drive my partner to work , go to St James and do my appointment there, drive back - have some time in the afternoon to have a rest, I find I need 2 hours sleep mid afternoon most days, then go back to pick up my partner from work at 5pm.

I have discussed my concerns with my Breast Care Nurse and with the radiologist in a recent appointment regarding transportation to St James hospital.

I was advised not to be too worried as they are very accommodating and if I wanted early appointments then this shouldn’t be an issue and I should be able to be fit into early appointments and that I would know the schedule for all my treatments. This was causing me a lot of anxiety so when I was reassured I felt this was an end to it.

I received a call today from a lady at Bexley Wing, to arrange my appointments, she could only arrange appointments for the 1st week and had a couple of calls due to the timing of appointments in the first week. I would prefer 9:30am or to be leaving by 4:00pm to fit this around my availability for transport.

Shes’ managed to do some appointments around 10am for the first week but after that she says they can’t perform miracles, they will *try* and accommodate me but can’t promise anything, wanted to book me in for midday appointments the 2nd week at 13:34pm which I have refused due to my tiredness, I would still need to get up early to take my partner to work, come back home, then go out again to Leeds!

When I explained to her what I’d been told previously she said that the machines are “chock-a-block” and basically that I shouldn’t have been told this previously.

I’m now feeling fairly stressed to be honest. I appreciate that the machines are probably busy and that the NHS is stretched etc. However, if I would have been told in the past of this, I’d be more prepared. I now feel very confused about what is going to happen.

There does seem to be a lack of communication between all involved

She informed me that on my first appointment I could go to reception at Bexley Wing and discuss my concerns but that they can’t promise me anything.

_____________

I was really really upset after the call, feeling like my lifes being taken over again and I’m just so exhausted all the time and dont have the energy for it all.

Has anyone else had this happen? I wanted to cry, I wish I had now to get it all out of my system.

2

by the way, I wrote an email to PALS sbout this. Don’t know if it’ll make any difference.

3

When I had my planning meeting with the rads doc, I said that I would like to have early morning appts so I could go on to work as I intended working through rads, and middle of the day was silly as I live right beside the hospital. When I got my first lot of appointments, MOST of them were in the very middle of the day. Teddy out of pram, dummy out of play pen, tantrum all over the floor. They changed ALL of my appointments to be at sensible and do-able times.

Please try not to get in too much of a state about it as you may find the people who deal with the appointments can fiddle around with them for you, particularly if you explain your situation.

Good luck.

CM
x

4

Mine was the same I asked for am apt got all pm but I must admit for me they worked out fine I found pm ones better I cld go then come home and have all eve to rest rather than be tired in the morn but I must admit I was lucky I got v small amount of tiredness was just like a tired spell washed over me for about 30 min i didn’t sleep as I knew if I did wldnt slp at night but a we r all diff gd luck with rads x

5

I must have posted at the same time as Choccie, mine’s disappeared!
So sorry El K if they told you from the start it might not be possible you’d have been more prepared.
Choccie is right -hopefully you’ll gt it sorted.
I’m expecting a similar situation. Currently half way through chemo at my local hosp. All being well should start Rads early Dec.
I live at least an hour drive on busy A road from Rads hosp in another City, no parking, public transport a no no, similar to you. OH doesn’t drive due to his health.
Was hoping to fit it in with work, but that’s miles away in the other direction. I can see it taking most of the day with fatigue factored in too.
I’ve since heard that some current rads patients are being sent to yet a different Hosp in yet another County even further away!
Already getting anxious so I can only imagine how you must be feeling.
Good luck. I hope they can sort it out for you.

6

Hi Ek
I had my rads at the Beatson in Glasgow and they were very nice, we were issued with all of our appointments before we started and they were all at the same time of day in the same room. The list they gave me at first were going to run into my holidays so they tweaked some and gave me different times to enable me to still go on holiday. I also had to change the time a couple of days to make my sons sports day and to collect my take that tickets (very important thing !!! LOL) and they said that was no trouble just to come in first thing in the morn. I think that you shouldn’t worry too much and speak to the receptionist at the hospital. Hopefully you will deal with a nice accomodating person and not a dragon.
Take care and don’t get too stressed over this
Lizz xx

7

Thanks Ladies :slight_smile: Injection of reality that I needed.
You think I’d have learnt to go with the flow a bit more by now but it seems not :wink:
I’ll see what the receptionist says and take it from there, I assumed the lady I spoke to was the appointment maker but perhaps she’s not.
My stepdad says she may just be a “jobsworth” and actually when I speak to them again that they may be more accommodating, but no harm in writing to PALS. After all, the way she handled my distress was not the best really. She huffed and puffed and showed her stress quite a lot and I wasn’t being horrible to her.
I just felt like I was being a huge hassle.

8

i delayed the start of my rads for various reasons, and i thought one effect would be that my planning was got in early and i could nab the early morning appointments. But no, like you i get a printout twice a week giving me either half a week or a full week of times all over the shop. Fortunately nothing after 12.00 but still along way from the 9 oclock slots i was hoping for.

whats more, because i heard about bank holiday on here i asked what was happening and they said–oh your appointment will be on saturday instead-- i was going away that weekend!!! fortunately its not too late to change it.

But i dont think doing a choccie muffin hissy fit would work. They only have so many machines and the waiting room is always full. The good thing is that they do stick to the times and so the longest appointment delay was 5 minutes-- so i dont have to hang around.

i am lucky though, i dont work, dont have a family, still have a car and so can fit it all in. plus i did not have chemo first so at the moment am not tired. i feel like a bit of a fraud. Really feel for people like that have to juggle their lives around to fit it all in.

9

Hi

I was just thinking when I had my rads the last appt was 5.45pm could you not ask for late aptts then your OH could take you after work??? you would still have your full day as normal. I had a couple of these late appts mine were all over the place as well even though I asked for early morning, but actually found the late ones better as the wait was not as long even though I would have thought the wait would be longer as they caught up??? Not sure why but when had later appt was in and out on time!! Just a thought!

Jill

10

This system of short-notice appts is sooo stressful and it’s good to complain or else nothing will ever change. I went for late afternoon appts in the end to fit in with my husband coming home from work and found these were able to be organised - could be that lots of people want early morning slots so late afternoon might be a better option EK - fully understand your distress
x

11

Apparently everyone wants either early or late appts to fit around work :frowning: I said either after 9.30 or 4.00pm at latest.

Problem is my OH gets up at 6.30, leaves house at 7.45am to go to work, the journey is about 45 mins, at work at 8.30am in Bradford, which is “on the way” to Leeds.
Then it’d take me about 45 mins from there to get to Leeds for an appointment. So we’re already talking about 3 hours a day driving.
If I was having to take him to work, come back home, go out to Leeds again, come home, go back out to Bradford again, not only would this cost a fortune in petrol but also, It’ll mean I’m driving for 5 hours a day!!! And I’m exhausted as it is at the moment.

Anyway, I’ll see how things go with them. No point getting any more wound up about it all. If worse comes to the worse I’ll just have to do patient transport and put up with most of my day being absorbed. Urgh.

12

That was quick! I got a response from the PALS manager

"Thank you for your recent email and I can appreciate your concerns regarding travel arrangements to the Bexley Wing at St James Hospital in Leeds.

We are currently making enquiries into possible avenues for support and I will try and give you a ring sometime tomorrow to give you some information and have a wider discussion."

  • So I’ll see what they come up with tomorrow :slight_smile: Good news I hope!
13

Hi Kat, I just recently had my rads at Jimmys and i have to admit when i once wanted to change two appointments , the receptionist was less than helpful. She is the same woman by the way who sorts out all appointments! So i went straight to actual radiographer and they changed them for me straight away. Just a thought if PALS are not helpful,

Good Luck with the rads, a walk in the park after chemo!!

Sal

14

They can be helpful if they want to be!!! The leaflet I should have been sent said to phone with preferred time slots and they would try to accommodate. Only trouble is, they never sent me the leaflet, so I went to my planning appt and looked at the later afternoon slot and said “sorry, we have 40+ miles to travel, some of it on the M25 - don’t really want to be travelling in the rush hour, any chance of changing please?” off they went… five mins later all appointments are between 1 and 2.30… fine for us… then I realised the first one clashed with theatre trip with daughter (surprise for her) in London - so, would they mind AWFULLY… what is it you want to go to? Oh yes, it’s important you do that… hang on a mnute - 9am do? Couldn’t ask for more, so your bunch need pulling up to standard! Hope you get a sensible answer. Our Trust have volunteer drivers who can often help… Does you local church community do a “good neighbour” type scheme? You don’t need to be church or religious if they do (usually) - just have a need… local magazine? Jane

15

perhaps it has something to do with how many machines and staff there are. It would not make sense to have the equipment laying idle and if its fully booked, they can hardly bump someone else off to fit you in.

my lot have been realy helpfull, and whenever i ask for a change they all get round the screen and um and ah and always end up saying, no sorry its fully booked we cannot fit you in.

16

Its different in every hospital how they handle it.

I’m already talking about having to do 3 1/2 hours driving PER DAY for 4 weeks here. If I have to fit around them, then we’re actually talking 4 1/2 hours and me having to go midday as well. I just can’t handle all that without having 2 hours nap in afternoon! I’m utterly exhausted fatigue wise and I’m doing this myself.

I’m annoyed because the woman I spoke to offered NO solutions really at all, I was told that I’d having a planning meeting. There was no meeting, just a woman calling me up, telling me it’s not possible, huffing and puffing at me and saying she can’t perform miracles when I was being perfectly reasonable with her, she was a bit short.

Anyway, I’ll see what they come up with tomorrow, I did ask about patient transport and if I could do this instead perhaps, I’d prefer not to if it’s a day of a job, as I’ve heard on the grapevine from patients from Halifax. I don’t want to spend all day every day there thanks, perfectly reasonable of me BTW. BUt she couldn’t tell me how long it would be, how many people they pick up or anything at all really. NOt very helpful in me making decisions is it.

RANT

17

Salcha -

I just recently had my rads at Jimmys and i have to admit when i once wanted to change two appointments , the receptionist was less than helpful. She is the same woman by the way who sorts out all appointments! So i went straight to actual radiographer and they changed them for me straight away. Just a thought if PALS are not helpful.

Interesting to hear from someone at Jimmys because it’s so different in each area.
I wonder if it’s the same woman, did her name begin with “N” ?
So if theres only 1 woman, she’s basically saying to go and see her on reception on my 1st appointment?? LOL. Eh?
Was she a bit brusque as she came across that way on the phone.
I can see me giving up on trying to get there myself and being forced into patient transport which I’m really not happy about but if that’s all I can do, I can’t handle that amount of driving in rush hour traffic and when I’m tired out, I’ve only been driving for 18 months, I’m not that experienced and I know what the Halifax-Bradford-Leeds commute is like, I used to go to Horsforth! It knackered me out when I had nothing wrong with me.

18

Have you not had your planning yet then? Your tattoos? Its just when i went they did the planning and tatts and then discussed treatment times and were fairly accomodating, but does sound like you spoke to the lady that i had a run in with, she IS very short. They are under huge pressure at Jimmys with 14 machines but thats no excuse for being difficult. You will find the radiotherapists a lot pleasanter than the receptionists, so maybe wait till you get to your planning session and tell the nurse then, you get taken into a room to have a chat with her so that may be a good time to mention your worries.
I can understand the patient transport bit i spoke to some people there who waited hours for a full ‘bus’ so to speak, and to be honest its the last thing you need.

Good luck again with it Kat, i am sure you will be able to sort it when you see the radiotherapists.

Sal

19

No I’ve had no planning. We went to Hudds hospital to meet the Radiologist just to sign consent forms, brought up transport, he didn’t deal with it but said it wouldn’t be a problem.
Went yesterday to Bexley Wing for tattoos and scans.
Then had a guy call me late afternoon to basically tell me my boobs are too big for the machine I was booked into so changed all my appointments again for the worse!
NOthing he can do apparently.

The PALS manager called me back on Friday but I was driving back from Leeds and by the time I pulled over to answer my phone it was too late and she didn’t leave a number.

I’m going to bring all this up with her when she calls on Tues.

My appointment for tatts/scan was at 2pm, so I got up at 6.30am with OH, took him to work and came home (1hr 15 mins), then left to get to Bexley Wing (1hr), then back to OH’s workplace as too late to be work going home again (45 mins), then set back off home at 5pm (45 mins) I was shattered yesterday, no mid afternoon sleep or anything. And I feel rotten today as a result.

I came to the conclusion that I just can’t do all this driving, it was so stressful yesterday, rush hour city centre driving, motorway was packed, I just knew I wasn’t on top form and I’ve only been driving for 18 months, I’m still relatively new, not used to driving whilst exhausted.

So I think they are going to have to sort transport for me becaues it’s not worth being in an accident and I really felt that if I end up doing this day in day out, hours and hours of driving myself when I feel so utterly cr*p that I’ll end up having an accident.

See what she says on Tuesday.

20

hi Kat,

I am with you 100% about the driving, I wouldnt even entertain the idea of doing it at all,
arrange the transport, over in the midlands you can get a free taxi, there and back, every day,
ASK at the rads meeting, if you dont they wont tell you, at least that way you can have a snooze in the taxi, you wouldnt have to travel back and for with your oh etc, etc,

you arent up to all that driving, omg, I have only just started driving now and only if i really have to and I dont do the motorway end of,

let us know how you get on, but dont take no for and answer, honestly they must be able to sort something out for you,

hope you get it sorted Liz x