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AIBU - Chemo in a waiting room.......

(42 Posts)
DignityInCare Fri 12-Dec-14 18:07:48

I have name changed for this as the story has been on the front page of our local paper and is already starting to hit the national press.

My mom has non-Hodgkin Follocular Lymphoma. It's not terminal but is something she will have to live with for the rest of her life. She was stage 3 when diagnosed so had to have an intensive course of chemo. She is now on a course of follow up chemo which is a bit less intensive.

When she went to the hospital for treatment last week she was given her treatment in a waiting room (ironically sitting directly opposite a Dignity in Care notice board) because the hospital had a bed crisis and the normal treatment room had been converted to a bed ward temporarily. This is an inner waiting room so only accessible to other cancer patients and their families / visitors - but even so, when my mom was having her cannula put it there was someone stood there gawping.

The waiting room was dirty and cramped which meant infection risk and if someone had crashed, they would have had difficulty getting to them. My mom couldn't relax or nap due to feeling so vulnerable in a public area.

The nurses were, by all accounts, doing a sterling job under really difficult conditions - there weren't enough power sockets so they were having to unplug the chemo pumps to plug in the blood pressure monitors (when my mom kicked off about it, they go maintainence down sharpish to put some gang sockets in).

My mom has been going to this and various hospitals for years and years (she has a number of other conditions) and has never had cause to complain before and she in no way blames the doctors and nurses for the situation encountered last week as she thinks they do a wonderful job.

However, the comments on the newspapers Facebook page have really pissed me off (I can't comment myself, so am ranting here instead). People going on about how stretched the NHS is and she should count herself lucky she is even getting treatment (I know I should stop looking but I can't help myself) and that it isn't so bad.

My mom is bolshy confident (as evidenced by the fact that she has taken this to the papers), but after her treatment she was really upset - I've never seen her like that before, even when she was first diagnosed. If it affected her like that, imagine how someone who was much more vulnerable might feel.

Everyone who I have told face to face about the situation is absolutely disgusted, and I am veering towards thinking that the commenters on the newspaper FB feed are just idiots but I need an MN reality check...

AIBU to think that receiving chemo in a waiting room is disgraceful? They could have used one of the day rooms or somewhere else with a door!

AIBU to think that the fact that she is getting the treatment at all is not a reason to be 'thankful' when it is delivered in such a despicable way.

AIBU to think that receiving services from the NHS should not be a race to the bottom and we should damn well speak up.

YesMudder Fri 12-Dec-14 18:12:58

That's appalling and I am amazed that people are criticising her for speaking up about it! I expect that the staff are glad that she has publicised this ridiculous situation - it's the only way things will improve,. I'm so sorry that she and you have gone through this flowers. Best wishes for her recovery

CarcerDun Fri 12-Dec-14 18:18:23

Oh my goodness, your poor mum. You must be so proud of her for standing up for herself. Ignore the dimwits, Facebook encourages some shocking attitudes.

Give your mum a hug, this made me all teary thinking how she must have felt.

amicissimma Fri 12-Dec-14 18:25:47

Well clearly your mum isn't happy and that's reasonable. And clearly things should be put in place to prevent this happening in the future.

But now, with the situation as it is, what would she like to happen? The beds are full. A solution has been found for people who need beds. There is no more space.

The choice appears to be to either cope, in the way the hospital has, or to cancel the chemotherapy of your mum, and others like her, until the situation can be sorted out. Which could take days, or weeks or months.

Alternatively she could be sent somewhere which does have space. Perhaps 10 miles away, perhaps 500. How would she travel? Use an ambulance that then can't be somewhere else that it's needed?

If your mum would have preferred to wait, or try elsewhere, did she ask about these options?

NCIS Fri 12-Dec-14 18:26:10

My Mum had the same condition 13 + years ago and sometimes received her chemo and blood transfusions in a waiting room. TBH I think she rather enjoyed it as she could people watch and it took her mind off the treatment.
I would have been the same, it really wouldn't have bother me but your Mother INBU to not like it for her personally, just don't assume that everyone would dislike it in the same way.

StandByYourTesselators Fri 12-Dec-14 18:29:42

It's outrageous. I'm sure the hospital came up with the best possible solution in difficult circumstances, but those circumstances should never have arisen in the first place.

The NHS isn't something where we should be grateful for whatever crumbs we get. This is a service that we all pay for through direct and indirect taxes.

I think cancer services generally are stretched to breaking point. My mother has recently had chemo at a central London teaching hospital. Hours of delays for every appointment, and often not enough treatment spaces for chemo and always broken malfunctioning equipment. Staff were never less than heroic though.

longestlurkerever Fri 12-Dec-14 18:33:06

I hate the attitude that because the nhs is "free" we shouldn't expect anything but a third rate service. No one expects state funded universities to be anything but world class and i feel the same about the nhs. Of course difficult funding decisions have to be made but defending inadequate care or facilities on the basis it is "free" demeans the nhs and everything it stands for.

toomuchtooold Fri 12-Dec-14 18:41:41

YANBU. The NHS isn't free, it's paid for by the people of the UK, and if it's not performing the people on high need to know where and how. I think people who defend the NHS blindly are making a mistake because on the one hand it's stretched but on the other hand (compared to the systems in other developed economies) it's very cheap, and I think just insisting that all is well and we should be grateful will just allow the service to get worse and worse which will only play into the hands of people who want to dismantle it. The people of the UK should be having a debate about what they want from their health service and what they are prepared to pay for it.

TInselaffe Fri 12-Dec-14 18:45:27

amicissimma The problem with that POV is by accepting shitty treatment (and OP, YABU to any of those questions) we normalise it.

I have had some appalling treatment from the NHS over the last four months and every time people who claim to be horrified have then said, "Well, they don't have any money..." Raise my taxes then! Make different funding choices! People by and large who use NHS services are in genuine need and in a vulnerable place. I have been unable to stand up for myself a lot of the time because I'm on incredibly strong painkillers that scramble my brain. Yet I am fortunate in that my DP is able to come along and quiz doctors and my injuries aren't life threatening.

The state of the NHS at the moment terrifies me, although even worse is people's apathy to the situation. Voters won't do anything about it until we are back in a 1930s situation where you have to choose between food and paying the doctor's bills.

And I'm not exaggerating - I have been told twice now by NHS staff that if I want the appropriate care I need to go private.

TInselaffe Fri 12-Dec-14 18:45:50

Sorry YANBU - I blame the painkillers grin

WooWooOwl Fri 12-Dec-14 18:46:34

The NHS is a mess, things like this are the tip of the iceberg. I think people need to get used to the idea that for the majority of things, the NHS is inadequate.

VivaLeBeaver Fri 12-Dec-14 18:47:49

So if it was only accessible to cancer patients and their visitors how would this differ from a treatment room?

Sorry, I'm not been funny. I'm genuinely trying to work it out.

My dad had cancer and all his chemo was in this big room which to me looked like a waiting room. But that was the standard chemo room. So 20 plus chairs (nice recliner type chairs, so. Comfy ish) and lots of different people in there having their chemo at the same time. I'm not sure how an actual waiting room would be different.

SummerSevern Fri 12-Dec-14 18:50:52

My DH is due to go into the same unit fairly soon, Dignity. I'm dreading it now I've read the article.

DignityInCare Fri 12-Dec-14 18:56:50

Viva A big room with big recliner chairs would have been fine, 20 people all going through the same thing would have been fine.

Generally even in those big rooms, the only people there are the ones that need to be. However, where they put my mom was next to a busy corridor with people wondering in and out looking for the drinks machine.

There was no comfy reclining chair, there was no emergency call button - there wasn't even a sink for hand washing. There was no room to get the crash cart in should someone go into cardiac arrest and it was dirty which is a big no no with chemo due to the infection risk.

There was a day room just down the corridor that is barely used - they could have used that.

She was told by a member of staff that the request for the new treatment room to be kitted out had been in for four months and was expected to take another 8 weeks - the refurbishment of the new commercial ventures didn't take that long hmm

The poor nurses were nearly in tears and were told by a manager a one point to cheer up as there had already been a complaint made about them being miserable the day before!

VivaLeBeaver Fri 12-Dec-14 19:03:23

Ok, I understand now. That's awful. As an nhs worker I'm happy for patients to complain about this sort of stuff. Its often the only way that senior managers listen and that things change!

HicDraconis Fri 12-Dec-14 19:07:04

Chemo patients in my hospital routinely receive their infusions in a waiting room. It's got comfortable chairs and lots of power sockets but they are sharing the space with patients waiting for surgery, patients having blood or iron transfusions, family members waiting with other patients - services are stretched and we can't have space that's empty 4 days out of 5 so it's a multipurpose area. (Chemo only on Wednesday mornings).

The patients chat to each other and their families, they share stories, they give us marks out of 10 for the cannulation experience - there have been no complaints that I know of.

Your situation sounds a little different but as a PP said what would you like them to do? They came up with a makeshift compromise in the face of extremely stretched resources. Aside from long distance travel to another centre, cancelling chemo, or discharging the sick patients to make space how were they supposed to manage?

And yes actually. I do think she's lucky to have access to the kind of medical treatment we have available in the UK.

cabbageandgravy Fri 12-Dec-14 19:11:06

Op your last comment about the nurses being near tears & being chivvied over it is disturbing - how long can we expect our precious, wonderful NHS staff to carry on when they find it so upsetting?? Hurrah for you & your DM for making a public issue of this, we can choose to afford to run a decent humane NHS in ths country if we want to.

mommy2ash Fri 12-Dec-14 19:25:24

it's not ideal but what is the alternative? of course it shouldn't happen in an ideal world but when faced with the situation im sure the doctors and nurses did the best they could. No matter what course of action they take someone will be unhappy. if they had cancelled the chemo people would suffer if they sent people elsewhere some people wouldn't be able to access the chemo. they can't win

CheeseBuster Fri 12-Dec-14 19:30:13

I don't think it's disgraceful but not ideal. It's just not what you are used to in this country.

Libitina Fri 12-Dec-14 19:36:29

I know which trust this is about and they are reaching breaking point. The patient load has increased substantially in the last couple of years and whilst steps are being taken to expand and shuffle services offered, as well as wards (2 new wards and a temporary A&E expansion) it's still early days as yet.
Winter pressures are only just beginning and already elective surgery is suffering due to there being a shortage of beds.

DignityInCare Fri 12-Dec-14 19:39:21

Viva yeah senior managers listening - mom demanded someone from the Chief Execs office come down when the PALS manager offered her a comments card and asked her if she complained a lot hmm

They have asked her to make a video of her experience so that they can learn from it!

Since the Stafford scandal the trust has been hoovering up services left right and centre - perhaps they need to concentrate on delivering the services they already have instead of expanding the empire.

Hic There is a big difference between a waiting room set up correctly and patients being aware of the protocol and an ill equipped makeshift compromise. 3.5 days nurses were having to change plugs over due to lack of sockets. Maintainance soon appeared with a load of gang sockets when my mom complained.

They could have used a day room, they could have purchased the service from the local Nuffield and given the Chief exec a smaller bonus this year. When it became clear what was about to happen they could have speeded up the maintainance request for the new unit. With enough workers it could be turned around in a few days!

DignityInCare Fri 12-Dec-14 19:40:33

mommy no-one is criticising the doctors and nurses. They were fab.

DignityInCare Fri 12-Dec-14 19:43:38

Libitina If you know the Trust you also know that the Chief exec keeps crowing about how profitable the hospital is and how their business model is so great they will be able to handle the Cannock expansion and additional Stafford services.

I know the Trust too - not just from a patient perspective.

Libitina Fri 12-Dec-14 19:44:30

DIC - likewise. wink

cansu Fri 12-Dec-14 19:58:17

Why should people feel grateful for a service they pay for? I really don't think it's acceptable to have chemo in a waiting room. The fact that some people do speaks volumes about where we are in terms of the NHs

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