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Dom's back

Posts: 26
From: Shrewsbury
Registered: 16-Nov-2006

VERY aggrieved by treatment
Posted: 28-Nov-2006 20:59

Reply

Hello Guys. I'd like anyone's advice please. Firstly, I am a very patient, normally very calm, well-mannered, considerate person who has a lot of time and respect for all staff who look after me at hospital. However, today I left A&E at Shrewsbury Hosp., very aggrieved as follows: I'm five days into a two week course of IVs. On day three my long-line (put in by my CF unit at Heartlands,B'ham) packed in. Unfortunate and no complaints - it happens. I therefore went to my local General Hosp's. A&E dept to have a venflon put in (Sunday night) - despite a long wait, which I'm used to and don't mind, the A&E fixed me, but the cannula had tissued, so I had to return, same night to A&E for a second venflon. This venflon worked fine until this morning. When I returned to A&E this afternoon the Sister at A&E was reluctant to do anything for me, saying "you can't keep coming here to have your venflons changed. If everyone with CF came....". I didn't bother pointing out that there are actually very few with CF under Shrewsbury Hospital and others with CF might be nearer their CF Unit, have a port, or manage to get through their IVs on 1 long-line or a couple of venflons.. I simply told her I did'nt like her tone which suggested I was a nuisance/time-waster. She was quite happy to leave me to sort it out myself by going back to Birmingham (50+ miles away). I said I wasn't prepared to go to Birmingham simply to have a cannula changed, if it can be done at my local A&E. She wanted to speak to my CF Unit without me present which I did not allow. I made it clear I would like to be present when she made the phone call. What do you guys do when sent home on IVs which don't last the full course? Sorry this has gone on a bit, but I'd really appreciate your feedback. Dom

j j

Posts: 25
From: Staffordshire
Registered: 11-Nov-2006

Re: VERY aggrieved by treatment
Posted: 28-Nov-2006 21:05

Reply

Sorry to hear you've had such a rotten time when you could have done without it Dom. I'm afraid i tended to head back to Heartlands with any problems before i had my port, i just don't have any faith in my local CF centre.

Dom's back

Posts: 26
From: Shrewsbury
Registered: 16-Nov-2006

Re: VERY aggrieved by treatment
Posted: 28-Nov-2006 22:16

Reply

Thanks J.J. - I guess it's a case of tackling the M6 tomorrow for me. I feel a bit down about being left in the lurch, but having phoned Heartlands tonight Heartlands have come up trumps again and will sort me out tomorrow morning. I think they're great at Heartlands - pity about Shrewsbury's A&E 'incident' today. What annoyed me was the A&E Sister's obvious concern over her professional pride being wounded, by admitting that she can't cope with putting in cannulas successfully. That's not a problem for me, if only she just passes the job onto someone who can...
Thanks anyhow for your comments.
Dom

sandylizz

Posts: 97
From: Shrewsbury
Registered: 10-Nov-2006

Re: VERY aggrieved by treatment
Posted: 28-Nov-2006 23:09

Reply

Sorry to hear Shrews a being a bit of a pain.. Ive been quite lucky with my venflons lately and they have lasted the full course when Im on home ivs.. A couple of years a go I did struggle to get a n e to change them so I started to request a letter to present A and E with but havent had to for a while..
Hope the team sort you out tommorow!

xx Sandy xx

DimBloke

Posts: 102
Registered: 11-Nov-2006

Re: VERY aggrieved by treatment
Posted: 28-Nov-2006 23:50

Reply

That is pretty crappy and am not surprised that you were aggrieved. The CF comment is off and it's not as if there's ever going to be a huge influx of CFers wanting canulas changed. I think you handled it well but you shouldn't have to travel so far just to get this sort of thing sorted.

Captain_dan

Posts: 234
From: somewhere cold but its not snowing yet
Registered: 16-Mar-2004

Re: VERY aggrieved by treatment
Posted: 29-Nov-2006 08:37

Reply

Hey Dom, sorry to hear about your struggles with cannulas and A&E. I think you have every right to feel aggrieved about what was said at Shrewsbury. Heartlands are a good unit so at least they are there when you need them... shame its a bit of a trek for you. Are you thinking about lodging a formal/written complaint or something to them?
Best of luck for the rest of your IVs!

PS: Stoke City 3-0 Cardiff City!!! We're going up!!!

goff

Posts: 6
From: midlands
Registered: 27-Nov-2006

Re: VERY aggrieved by treatment
Posted: 29-Nov-2006 09:31

Reply

I was interested to read this post as my 16 year old son, Jon, is about to transfer to our local adult clinic in Coventry. The trouble is that they don't offer an in-patient service for adults unlike they do for children. This means that when he has to have IV's (which isn't that often - touch wood!) he'll have to go to B/ham which is 35 miles away. That would be ok if 2 weeks of home IV's went without any problems but usually he has to have venflons changed at least twice in that 2 week period. I had been wondering whether our local A&E depatment would be prepared to simply change the venflons - it doesn't seem like much to ask and would save a 70 mile round trip to Birmingham. What do other folks do when their main centre is miles away from home?
Cheers
Claire

annemac101

Posts: 28
From: glasgow
Registered: 12-Feb-2004

Re: VERY aggrieved by treatment
Posted: 29-Nov-2006 11:50

Reply

Dom,I have had a port in for a good few years now but before that when I had ventflons in the cf dr gave me a letter to take to my nearest a and e to have it changed if need be and I never had any problems and I wasn't as far away as you from the cf unit it was just more conveinant for me to go to a& e as I didn't have a car.We didn't have cf nurses at that time who did home visits so one time when I was too unwell to go to a &e I called out my gp and he put a ventflon in for me ,I think the cf unit gave me a few to keep at home .I'm appalled at the way the hospital sister treated you and I think you should do something about it ,when you think of the drunks and drug abusers they treat probably without comment and then refuse to treat a genuine case it is shocking and one could say if they had inserted the ventflon in properly the first time you went you wouldn't have had to keep going back .Don't let this stop you going to them in the future as its their problem with their staff not yours and you shouldn't have to suffer.

Aidan

Posts: 12
From: Bristol
Registered: 08-Nov-2006

Re: VERY aggrieved by treatment
Posted: 29-Nov-2006 14:25

Reply

I had a similar situation just before my first port went in - I could barely go a day without my line breaking down and I was continuously diving into hospital to get it fixed (over a weekend so there was no CF team to contact). They sent me to a ward which specialised in day patients and some very good nurses shoved a series of venflons in until I spoke to the CF team and, if I remember correctly, we finished the course early.

My point here is that I sympathise with A&E staff. While their reasoning was faulty (that it was common in CF patients), their concern had sensible grounds: patients are not expected to have daily - or twice-daily - venflons put in. Good veins are precious and that kind of destruction of them is not good news. If they are dying that quickly, either:
1) your veins are so bad that this should be a big kick towards getting a port
2) A&E are not very good at putting in venflons designed to last more than a few hours.

In the latter case, that A&E were not doing a good job, then quite frankly they are right not to want to put them in for you. It may be better to wait for someone more experienced to put them in than to have the hassle and vein-destruction of short-lived venflons.

In my case, we looked at each other and said it was time I had a port.

Aidan

Diploire

Posts: 13
Registered: 09-Nov-2006

Re: VERY aggrieved by treatment
Posted: 29-Nov-2006 14:30

Reply

Glad to hear that Heartlands will sort it for you Dom. I always seem to have good experiences when I have a venflon put in in Heartlands i.e. they get it in first time and it usually lasts the full 14 days. If I do have it put in at my local, they inform the MAU (medical admissions Unit) who are also very good at putting venflons in, I think it's 3/3 first time which is great for me. A&E on the other hand seem to struggle in getting venflons in, yet it's not as if they don't put them in regularly for various admissions they receive.

Venflons are a big bug bare for me. I can almost tell before the doc/registrar/resp nurse starts as to whether they'll get them in first time or, at all for that matter. Do you have respiratory nurses or registrars who can do this procedure for you at Shrewsbury?

L.k.

Posts: 36
From: Wales
Registered: 09-Nov-2006

Re: VERY aggrieved by treatment
Posted: 29-Nov-2006 14:31

Reply

I think you should write a politely worded letter asking what the hospital's policy is towards CF patients who need emergency help.
I would address it to the consultant in charge of the A&E department.
I would also ask the CF team for an emergency letter. You should not have to travel 50+ miles for this sort of thing. IV's can be disruptive enough without any additional stress.
Don't think of it as complaining think of it a clarifacation for the next time.
L.K.

Tim Davies-Moss

Posts: 145
From: Shropshire
Registered: 06-Nov-2006

Re: VERY aggrieved by treatment
Posted: 29-Nov-2006 15:41

Reply

Shrewsbury has always been great to me, i will put you in contact with the long line specialist at shrewsbury.. her name is carol tune and she works in HDU.. she is amazing and soooooooo polite.

She is always more than happy to see me when i have a blockage .. just call 261000 and ask to speak to her next time.. she will sort everything

P.s unrelated.. what school did you teach at Dom ?

tim

Dom's back

Posts: 26
From: Shrewsbury
Registered: 16-Nov-2006

Re: VERY aggrieved by treatment
Posted: 29-Nov-2006 15:59

Reply

Thanks for your responses guys. Reassuring to know there are people like you out there who fully understand the trials/tribulations of long-lines/venflons. Heartlands, needless to say, sorted me out with a new long-line today, without hesitation.

Sandy: Thanks. Jo Osmond typed a letter up for me to replace the one I'd left at RSH on a previous visit. That should help.

Dimbloke: Yeah, the CF comment was both presumptious, if not insulting and unnecessary. Yeah, 100+ miles round trip is crazy for a venflon, when A&E are qualified to put one in and we, as tax-payers are entitled to that treatment.

Dan: Yes, a written complaint is being thought about now. Not complaining at A&E Dept, but targeted at the individual concerned. On a lighter note, I'm delighted that Stoke beat Cardiff, which helps Blues of course too! What price Stoke and Blues for automatic promotion?!! Hope you're keeping well.

Goff: I'd suggest, as Sandy said, getting a letter from your CF Unit to cover your son when going to A&E. Also, I recommend going to A&E if possible Mon-Thurs. daytime when it's quieter. Bear in mind, incidentally, that they aren't qualified usually to put in long-lines, but venflons are not a problem.

Annemac101: Thanks for your comments. True what you say about accepting drunks, druggies etc.. on Sat./Sun.nights ,no questions asked. I've witnessed it myself before, and did so again on Sunday night. A prat handcuffed to a Police Officer was treated ahead of me, no questions asked and whilst waiting for my venflon, a drunk girl was yelling at A&E staff, but got treated?!!! Need I say more...?

Aidan: I understand some of your reply, but also stress that the damage to my veins was not the reason for rejecting me initially, until I persisted. It was insinuated that if I were given replacement venflons then they'd be expected to do the same for "all the other CF patients" - not true, as pointed out, and irrelevant. The point you make about the veins packing in, therefore time for a port, is a fair point that I also brought up today at Heartlands. I accept that. However, the first venflon put in at Shrewsbury never had a chance to work as they'd 'tissued' the site. I don't have a problem with A&E per se. I ,indeed, have sympathy with A&E staff generally too and stress again that apart from one person there the rest of A&E have been superb (they know I appreciate them). It's the one individual who I was unhappy with, who objected to giving venflons flatly due to her inability to do so successfully. I don't have a problem with that either, but simply ask for her to pass it on to a colleague who is more competent. She eventually did, when I persisted, and I was grateful for the guy who then did a very good job with the venflon. Thanks for your input though which is interesting.

Diploire and L.K.: I'll be checking with my careshare Consultant at Shrewsbury to see if there's anyone who can put a venflon in without bulking at the idea of it. It'll save me a longer journey to Birmingham for the same treatment.

Thanks again to all. Dom

Em

Posts: 6
From: Dumfries
Registered: 06-Nov-2006

Re: VERY aggrieved by treatment
Posted: 29-Nov-2006 20:15

Reply

Hi
When my longlines have failed in the past I have always gone to A&E without any problems. They haven't failed quite as often as your saying though. The last time I was on ivs my hospital arranged for me to get a cannula fitted at my gps. It lasted a day and a half and I then made the 60 mile journey to my hospital because I wasn't wanting the pain of having about 5 more cannulas to finish my ivs, I did need bloods doing as well though. It is shocking that they would act like that.
Take care Em

Dom's back

Posts: 26
From: Shrewsbury
Registered: 16-Nov-2006

Re: VERY aggrieved by treatment
Posted: 30-Nov-2006 11:11

Reply

cheers for the phone number/contact,Tim

I taught at Ercall Wood for 2 years. before that I taught in B'ham.

Dom