First-time house renovation

jamtart6

http://www.uhbristol.nhs.uk/patients-visitors-and-carers/patient-support/complaints.html

i've been digging and investigating via my nursey friend - she said complaints system is the only way to go - unless you can find a higher up managers name

tell him the house renovation team won't let him be a doormat, and we'll personally come and get him and take him to bristol kicking and screaming

ETA: "they need to phone the unit up every day asking about beds ask to speak to the bed manager or admissions manager" - I'd say phone several times a day and also "get their gp, mp and local consultants involved with writing and phoning" is what else she said

TomsMom

Thanks JT.

I've just had a picture flash through my mind of all of us renovators going to Bristol with our placards "Give TomsDad his transplant NOW" and staging a sit in :rotfl: .

I really am itching to know what the reason for the bed no longer being available is. OH mentioned the word "shortage", so other than physically removing a bed from the ward since Wednesday I don't get it. If someone else's transplant has not gone to plan and the patient, say, has developed an infection, they wont know this far in advance whether that bed would be unavailable next Wednesday.

There are no emergencies admitted to that unit, it is all pre-planned with lots of staging to get through before a transplant can be done.

It can't be that the transplant consultant is on holiday as that would have been booked in advance and OH wouldn't have been given a date.

I really will have to stop thinking about this (I do far too much thinking, OH does far too much accepting!) and be patient, hopefully I'll get a bit more information tomorrow but something tells me OH has told me all he knows.

There's no chance of getting answers over the weekend but I'm hoping that I may persuade OH to start asking some questions on Monday.

Thanks for caring guys.

I think I'll have to go and put the TV on and watch something, I'm hearing unfamiliar noises and not liking it! Probably the weather has something to do with it, heavy showers and high winds on and off, or maybe a seagull tap dancing on the roof . I wish I had a dog, the cat's not very protective of her mom in these situations.

jamtart6

http://www.uhbristol.nhs.uk/who-we-are-and-what-we-do/trust-board.html

the names of the trust! - i think these are a good bet!

Don't be scared! The weather is very very bad here too, and all kinds of knocking noises going on

andrew-b

I've been reading up on bone marrow transplants and lymphoma on nhs website and noticed a link to the Lymphoma Association "[FONT=Verdana, Arial, Helvetica, sans-serif]UK charity that provides accurate medical information and support to
lymphatic cancer patients, their families and friends."[/FONT]

Not sure if you were aware of this organisation already from reading your previous posts..if not well you are now!

Hope that helps in some way

Andy
[FONT=Verdana, Arial, Helvetica, sans-serif]

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TomsMom

Oh thanks for that Andy, I didn't know about it. I'll have a read through, I think it could be very helpful.

Found out what the noise was - I'd pulled the blind down in the kitchen not realising I still had the window ajar from when I cooked my tea and the wind was blowing it silly me!

Kaz2904

OK, Don't know if this is any help TomsMom but I work at Weston general hospital. Last night we were on red alert for beds which meant we had no beds in the hospital. I work on CCU but often we get non CCU patients when we have beds available.
I don't know if our bed state has had any effect on Bristol (I doubt it) but I do know that our area has a massive influct of patients at this time of year. We can't turn emergency patients away and as was said earlier if a patient has got an infection or such like they can't be discharged.

TomsMom. As I said earlier, I work at Weston General. I live in Weston super mare. If you ever need a break when you are in Bristol, I'm only 1/2 hour away. You can bring washing with you too! (I have a TD).
It would be a pleasure to help you out if you need to get away and get some non Bristol air. Please PM me if you're interested.

andrew-b

Found an excellent booklet there on the bone marrow transplant See here..think this is the relevant one and not the autologous one. Loads more info than the NHS site. Like i said before from my own experience someone should tell you at the time of diagnosis of these support organisations..shouldn't have to search them out on the internet!

Andy

TomsMom

Kaz2904 wrote: »

OK, Don't know if this is any help TomsMom but I work at Weston general hospital. Last night we were on red alert for beds which meant we had no beds in the hospital. I work on CCU but often we get non CCU patients when we have beds available.
I don't know if our bed state has had any effect on Bristol (I doubt it) but I do know that our area has a massive influct of patients at this time of year. We can't turn emergency patients away and as was said earlier if a patient has got an infection or such like they can't be discharged.

TomsMom. As I said earlier, I work at Weston General. I live in Weston super mare. If you ever need a break when you are in Bristol, I'm only 1/2 hour away. You can bring washing with you too! (I have a TD).
It would be a pleasure to help you out if you need to get away and get some non Bristol air. Please PM me if you're interested.

Kaz - thank you so much, how lovely that you should make such a generous offer. And thank you for the information about the bed situation in Weston. There could be a problem that we don't know about that is affecting the area.

I've just spoken to my son who rang OH in hospital last night (after I had spoken to him) and apparently there is another patient who was scheduled to go to Bristol on Thursday next week and she's had it cancelled too. I will have to wait until later on today to find out if OH actually asked why there was a sudden shortage of beds but I can more or less guarantee that he didn't.

At the moment, when the transplant goes ahead, my plans are still very uncertain but provisionally I will be going down at weekends. The accommodation offered to patients is in the Premier Apartments and I've looked on their website and they look very nice. They have washer/dryer facilities in each flat so that should present no problem but thank you for your offer.

I will keep your very kind offer in mind when the time comes and if I find myself needing to get away for a while.

This site illustrates just how many kind and lovely people are in the world, we often forget that, but you've all made me feel like I've got a wonderful adopted family.

TomsMom

andrew-b wrote: »

Found an excellent booklet there on the bone marrow transplant See here..think this is the relevant one and not the autologous one. Loads more info than the NHS site. Like i said before from my own experience someone should tell you at the time of diagnosis of these support organisations..shouldn't have to search them out on the internet!

Andy

Thanks so much Andy, that is a wonderful find. A lot of that information was covered verbally when OH and I went to Bristol to meet the transplant consultant, and the meeting was followed up with a letter outlining what was discussed. But we have never been given a copy of that booklet. I've just had a quick flick through it and will go and read every word later, but it seems to cover more than we've been told. Considering how much information you are bombarded with, it would be nice if it was standard practice to at least point you in the right direction for further help/advice.

I'm just hoping that now the central line is in the transplant is rescheduled very quickly cosidering that the IV tube he had in his arm for months was the cause of his Bacteremia a couple of months ago, and he was very lucky to get over that. Infection from lines is apparently quite common.

When I was talking to OH yesterday he was actually planning to ring the furniture shop and rearrange delivery for two weeks' time as he will probably still be here! That will be a week after the end of his chemo, the time when he feels crappiest, and he plans to be directing them up the stairs and round the bends, "up a bit, left a bit, stand it on end, try it this way, try it that way" :rotfl: . Well, we'll see!

Thanks again Andy for finding all this information. I'd gone to bed when you were doing that. You're so kind.

TomsMom

Just to follow up now that OH is home.

He was told about the email from Bristol just about 5pm, the doctor came and prodded him out of his woozy state. That makes me think the email had not long been in their possession but he did not ask if it arrived before his op. As I expected, all the staff were as devastated as we are.

He was told that it was a case of the bed that was going to be available for him would not be vacated in time as the current patient in it was not going to be discharged in time as recovery was not going as well as expected. Now that is quite plausible to a degree, but I still find it difficult to accept that they can predict there wouldn't be a turnaround within the next five days and that patient moved on to wherever the next stage of recovery is planned (i.e. a flat if he's out of the area like OH, or home if he's from closer to Bristol) - but I shouldn't really make assumptions. But what really makes me wonder if he's not getting the whole story is the fact that a second patient from Bangor has been put off too - so that would mean two patients in Bristol are having recovery problems at the same time and the hospital has decided that neither of them will be improved enough by Wednesday and Thursday next week. I'm an old cynic!

I personally think they should have gone ahead with getting him to Bristol and if the bed was unavailable on the day then send him home, that's the way they seem to do it for other planned admissions for other operations. It's also what happened to someone I know in Scotland whose OH was due for an autologuous transplant (self-transplant) rather than an allogeneic (donor) one. He arrived at the unit at the appointed time to be told there was no bed but it did become available later in the day so it went ahead after all.

OH is booked in for chemo at Bangor Tues-Fri next week so on Monday he is going to ring Bristol to try and find out what their plans are and see if he can get some kind of time scale for rescheduling his transplant. He's not sure if they can do their chemo immediately on top of Bangor's chemo, although it is a different sort of chemo doing a different job so different drugs.

He wants to find out if he's going to be at home in two week's time and if he is he'll arrange for the furniture to be delivered :rolleyes: .

Andy - that link to the booklet is fantastic, so informative. We've both read the whole lot. Some of the information was given to him verbally at Bristol, some in the information pack he had, but there is still quite a lot that has not been mentioned and is new to him. It has been very very useful and I've saved it in my favourites so that we can go back and check on things when he does eventually go.