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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Is it unreasonable to expect to be able to have a daily update on DH?

112 replies

bloodywhitecat · 27/11/2021 12:48

Currently in hospital after a stroke, non-verbal, poor memory and poor
understanding, can't use his phone to message or call me. For several days now I have had to ring the ward for hours to get an update, they have told me I can't call before 11 but since that time today I have tried every five minutes without success. No-one lets me know anything about what is happening with him. He also has terminal cancer. He has fallen out of bed and every time I manage to get into see him (for a whole hour) his table is on the wrong side (he has no use of the right side of his body) so he can't reach his drinks etc.

OP posts:
Original poster
bloodywhitecat · 27/11/2021 14:08

@midlifecrash

What a rubbish situation. As recommended contacrPALS. The fact is he has care needs which it appears cannot be met unless you are with him for longer. If they are short staffed even more so. They may wish you to wear PPe etc but they ought to be welcoming your help.
I'd wear a space suit and sing the fandango if it meant I could spend more time with him and get him home.

I did speak to PALS on Friday who agreed it was an awful situation but nothing seems to be happening, I will call again over the weekend and if I have no joy there I am going to go as high as I need to go.

Thank you for all the replies, if I could just know that he is OK every day I wouldn't feel quite so het up but the ward are making me feel it is unreasonable to want to know how he is.

OP posts:
Finals1234 · 27/11/2021 14:09

To add to the great advice you have already been given, please also consider complaining to the hospital head/chairman - I am not sure of the official title.

My aunt died under similar circumstances earlier this year and contact was so difficult even though her daughter went to the hospital every morning and evening and they also complained to PALS. The only thing that worked was an email to the top of the chain, and this was followed by nurses letting her daughter in for an hour a day.

I can't even think about my aunt with terminal cancer spending her last few weeks utterly alone in a hospital bed with rubbish care. She died with her daughters by her side, and that was just a coincidence really. It was during their one hour visitation.

The situation is horrendous and in my opinion utterly immoral. Nobody should be left either seriously ill or terminal ill without the chance to see their loved ones. So often it's the visitor by the bedside who is carrying out care and ensuring the patient is eating, clean and comfortable, easing some of the pressure off the staff. Visitors should be able to stay as long as they want following a negative PCR test.

I don't think keeping visitors out is helping the situation at all. It is utterly disgraceful.

Shimmyshimmycocobop · 27/11/2021 14:21

I think this is disgraceful and was under the impression that if a patient terminally ill then the usual visiting times do not apply.
My mum died last year in the midst of the pandemic and while in hospital she was allowed 1 visitor to stay as long as we wanted.
It seems as though different areas interpret the rules differently.

ftw163532 · 27/11/2021 14:34

I absolutely believe you. I have witnessed the same systemic neglect happening to patients when I have been admitted.

Do not feel bad for one second about making as much fuss as necessary for them to get their fucking act together. Covid or not it is disgraceful.

I am so sorry you are in this position.

BigYellowHat · 27/11/2021 14:41

Has he got a white board above his bed? Ask the nurse (or do it yourself) to write where the table should be positioned. The OTs will hopefully have given him an orientation board. Basically a small whiteboard (usually) which is updated daily with things like the date/location/why he’s there/goal of the day. I’m an ex OT so used to do this sort of thing a lot. It sounds really crap for you but sometimes you just have to take the initiative and do things yourself because no-one else does.

BigYellowHat · 27/11/2021 14:41

He should keep the orientation board in reach at all times.

EmeraldShamrock · 27/11/2021 14:45

Oh dear that is very hard.
You must be going out of your mind. Flowers

Helpstopthepain · 27/11/2021 14:46

Does the ward have an email address (ours does)?
Or can you get an email for the ward sister?

I’m really sorry that you are going through this.

Sharletonz · 27/11/2021 14:50

Are you formally caring for your husband? If so, then yes you're allowed to visit. Contact PALS, they will refer it to whoever is the Director of Infection Control at the Trust who will make a decision on your visiting arrangements, partners who formally cere are allowed to visit.
I would also contact the ward manager to ask for updates.

Sharletonz · 27/11/2021 14:51

Care*

Sharletonz · 27/11/2021 14:54

Actually, I'm fairly sure you just look up whoever is the CEO or Director of Infection Control on the trusts website, just email them directly.. I work in a hospital Trust and see many, many, many people do this.

SleepWhenAmDead · 27/11/2021 14:57

This is another vote for calling the Matron at the hospital.

In my own case after finally getting through to the ward and being updated about an unsigned DNACPR which we were consulted on.

I phoned the switchboard who put me through to the safeguarding matron who cover 24/7. She actually answered the phone, looked on the computer then said she would need to walk to the ward to check what was written. I never heard from her again but a doctor from the ward called within 30 minutes.

I imagine your safeguarding concerns would include things like drinks being placed out of reach. However, if he is non-verbal, does he have mental capacity to consult on treatment etc. If not, they need to liaise with you about treatment etc.

Sending you all my best wishes

Nydj · 27/11/2021 14:59

@bloodywhitecat, I’m so very sorry for all that you and your poor DH are going through. If you are able, perhaps try and contact PALS again with a list of what you want to happen and see what, if anything, they can help with.

Ritasueandbobtoo9 · 27/11/2021 15:00

Can he come home with a hospital bed in the lounge, an air mattress, some slide sheets and pads/bottle to pee in? Can the community palliative care team make it happen?

Tomeeornottomee · 27/11/2021 15:03

@CallMeK does it make you feel better to be berating the OP when she’s clearly upset and at the end of her tether? Especially when you clearly haven’t the post properly... have a biscuit love.. and maybe think of name changing to callmeC

LIZS · 27/11/2021 15:14

When Dh was in last year I found weekends more tricky to get a response than weekdays as often the ward clerk was not around and the phone would ring out or be constantly engaged. Find out when the multidisciplinary meetings are during the week and time your call for after those as the information will be fresh. Avoid shift change times (7-8 am and pm) and immediately after as nurses will be preoccupied with obs and personal care. Visiting policy will be reviewed each week, we were allowed one consistent visitor for an hour, prebooked. Hope you are able to get support soon and visit.

tass1960 · 27/11/2021 15:15

This sounds horrendous. What about if you phone the clinical manager for the department on Monday. They react very quickly in my experience - at least they do in the department I work in. Doesn't help for the next couple of days but there might be someone who covers out of hours. Names, tel numbers and email addresses are usually listed on the trust webpage.

NovemberNovemberDarkNights · 27/11/2021 15:17

@bloodywhitecat

I'm so sorry to hear about DH's stroke and the subsequent Shute care he's getting & that you're being made to feel the way you do.

Do you have people who can look after your little ones if you can get more time on the ward?
Contact as high up as you can & keep contacting the ward his specialist & anyone dose you can. Push pals & everyone as much as you have the strength to do
I hope you can get him home (with help) ASAP

Much love
X

BabbleBee · 27/11/2021 15:21

This might be useful info to have in your back pocket so to speak. If you get nowhere with PALs then bollocks to the process and go straight to the top.

NHS Trust CEO emails

Crinkle77 · 27/11/2021 15:22

@CallMeK

Why are you calling? Why aren't you there?
Oh my god seriously? How fucking judgemental. You have no idea about the OP's situation.
ILoveAGlassofFizzy · 27/11/2021 15:23

I am so very sorry, but gear up as much fuss as you can today as virtually nothing gets done on a weekend (which stinks as clearly no one is ever ill over the weekend.................................Angry. Also if you can manage to get in a visit sat or Sun, there will be less staff to know if you stay longer. Usually there are only support staff around on a weekend and generally they dont care if people are visiting all day..... Its definitely key to visiting for longer (I have vast experience over the last year.)

MiddleAgedLurker · 27/11/2021 15:26

This reply has been withdrawn

This has been withdrawn by MNHQ at the OP's request.

ChiaraRimini · 27/11/2021 15:28

If it's not too far away I'd be tempted to just turn up at the ward during normal visiting hours and try and blag my way in, the staff actually on duty (esp at the weekend) may not be that bothered.

Cattitudes · 27/11/2021 15:28

Depending on his care needs can you see if he can be transferred to a hospice or similar?

DuckbilledSplatterPuff · 27/11/2021 15:35

@CallMeK

Why are you calling? Why aren't you there?
Unnecessary, unhelpful guilt tripping. Why even bother making a comment like that?

I hope you make some headway with these suggestions. It is actually very difficult if you've never had a person in hospital to know your way around their systems and who to speak to. Some good advice on this thread tho Flowers