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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:
madroid · 27/11/2021 12:53

You need to forget the ward and contact

the matron - make it known you are on the case. Tell them about the table. Make a fuss.

specialist cancer nurse - they should be able to coordinate treatment/palliative care with stroke care.

consultant/multi discipline coordinator - find out what the treatment plan is.

I'm afraid people slip through so many nets (more so than ever) if they don't have family advocating for them.

ThirdElephant · 27/11/2021 12:54

I am sorry, it must be an utterly miserable time for you both. Of course YANBU Flowers

We can appreciate that the system is under so much strain it's essentially non-functioning in some areas, but we don't have to like it.

IamtheDevilsAvocado · 27/11/2021 12:58

@madroid

You need to forget the ward and contact

the matron - make it known you are on the case. Tell them about the table. Make a fuss.

specialist cancer nurse - they should be able to coordinate treatment/palliative care with stroke care.

consultant/multi discipline coordinator - find out what the treatment plan is.

I'm afraid people slip through so many nets (more so than ever) if they don't have family advocating for them.

This...

How utterly wretched for you both Flowers.

Really hope he is home with the help he needs pronto

RoomOfRequirement · 27/11/2021 13:01

Sadly at this point if there is no Ward Clerk the phone can barely get answered because nurses and HCAs are busy in patient rooms and running between too many patients patients day. It's awful.

Contact PALS about the bad care issues like the table - that should never happen. But I'm not really sure how much could be done about them not answering the phone if the reason is patient care.

Are they still restricting visitors with Covid? Every hospital is different but an hour infrequently is surely not enough if you're fully vaccinated and wear a mask.

CallMeK · 27/11/2021 13:08

Why are you calling? Why aren't you there?

pianolessons1 · 27/11/2021 13:09

@CallMeK

Why are you calling? Why aren't you there?
Have you not noticed we are in a pandemic and visitors are very restricted?
MzHz · 27/11/2021 13:14

The poor man has terminal cancer… what would the risk be? He needs people there with him.

My poor love, I know this is hard, overwhelming perhaps but get hold of people as per the post up thread and don’t back off until you’re getting the care and attention needed for your h. Call your MP if you have to.

Fight on love, we’re all rooting for you and your dh

whynotwhatknot · 27/11/2021 13:14

thats terrible they wont let u stay longer he can hardly advocate for himself

Original poster
bloodywhitecat · 27/11/2021 13:15

@CallMeK

Why are you calling? Why aren't you there?
Because they won't LET me be there!
OP posts:
Original poster
bloodywhitecat · 27/11/2021 13:17

Specialist cancer nurse hasn't returned my calls. Stroke doctors are still waiting to hear from his oncologist, it's been 5 working days.

OP posts:
Original poster
bloodywhitecat · 27/11/2021 13:18

Is the matron the same as the ward sister? The sister is the one who has told me that I still have to stick to the one hour thing despite everything.

OP posts:
BabbleBee · 27/11/2021 13:19

@bloodywhitecat Get in touch with PALs, they should be able to help especially with communication with the ward.

Agree with pp who mentioned palliative care team. Could they look at getting him into a hospice or working towards that if you have one locally?

Chamomileteaplease · 27/11/2021 13:19

Most hospitals would let a spouse visit for longer if the patient has a terminal disease.

Is he in a side room, because that would help?

I second trying to get hold of the Matron and to ask for more time with him.

With regard to the table issue , which is terrible, you could leave a clear, written note on his bed or table to ask them to leave it on the correct side.

KatieB55 · 27/11/2021 13:20

Contact PALS & ask them to help with communication.
It drove me mad when in hospital and they ignored the phone. It was a teaching hospital with plenty of student nurses on the ward. They just carried on chatting and left it ringing. They also forgot to feed a lady in the bed opposite who had had a severe stroke. Her daughter brought fresh pureed food in every day. The other patients had to tell the nurses every day that she hadn't been fed. Very poor.

LettertoHermoine · 27/11/2021 13:23

This is horrendous OP, my heart goes out to you.

TheCreamCaker · 27/11/2021 13:25

You're having a terrible time and I'm sorry you and your husband are going through it all. Sadly, it seems to be commonplace for this poor level of "care" in hospital - I had a very bad time earlier on this year, when I too had a stroke (long story but the care was really inadequate in Coventry hospital). Contact PALS - the number and email address is different according to which area hospital your husband is in.

Best of luck xx

PinkiOcelot · 27/11/2021 13:25

Is your husband under a named consultant? If so, could you speak to their secretary and explain. You shouldn’t be kept to the 1 hour visit per day in these exceptional circumstances.
This is so wrong. It certainly isn’t a one size fits all scenario. So sorry for you OP x

Original poster
bloodywhitecat · 27/11/2021 13:27

@PinkiOcelot

Is your husband under a named consultant? If so, could you speak to their secretary and explain. You shouldn’t be kept to the 1 hour visit per day in these exceptional circumstances. This is so wrong. It certainly isn’t a one size fits all scenario. So sorry for you OP x
I left her a message yesterday, no reply. I think people will begin to think I am making this up but I am not.
OP posts:
Kitkatchunkyplease · 27/11/2021 13:28

I'm so sorry op. My mum died in a situation similar to this and naively I had so believed they would have contacted me if she was dying. I rang the ward 7 times the day she died, and was waiting for a call back from the doctor .
Contact pals re the table. Push and push. It's bloody awful.

MysterOfWomanY · 27/11/2021 13:37

Oh we believe you OP.

My tip, next time you turn up in person, take a notebook and pen and make a civil yet persistent nuisance of yourself. Very ostentatiously take notes. If whoever is in charge of the ward or his named nurse can't talk to you, make an appointment to do so the next time you're coming in.

This is on top of what PPs have said about PALS, hospice, palliative care team etc.

I'm really sorry, healthcare can be uneven everywhere (not just here, I've heard stories from cousins in the US even). Keep calm and polite (but feel free to look sad/anxious/disappointed/appalled) and just grind away.

Is there a friend or relative who can give you a hug and cup of tea after you've been in the trenches each day, to help you decompress? I hope there's someone who has your back. Flowers

Hadjab · 27/11/2021 13:40

@bloodywhitecat this all sounds so familiar. My husband had a brain haemorrhage leading to three strokes back in 2014, and one particular hospital was a bloody nightmare to get any info from, and it wasn’t even a pandemic. The thing I learned then was those family members who were most vocal were the ones that got results. Not suggesting you be rude at all, but you do need to leave them in absolutely no doubt that you mean business. I know having to fight on this front is not what you need right now, but push for a side room, or at the very least, push to be allowed to stay longer with your husband. The whole thing with the table, that happened a few times - I made sure to tell the staff on the day shift when I got there in the mornings, and the evening shift staff before I left, as well as cleaners etc. if it means leaving passive/aggressive notes, then so be it, they’ll get the point soon enough. Sending you hugs and strength x

nothingcanhurtmewithmyeyesshut · 27/11/2021 13:40

@CallMeK She literally said in her OP that she isn't allowed to go in and when they have let her in, it's only for 1 hour.

CPL593H · 27/11/2021 13:51

Excellent advice from @madroid. I really recommend trying to establish a channel of communication with the consultant(s) Some are obviously more receptive than others to this but don't rule it out. You need to keep plugging away, being a polite but firm and clear "pest" pays off. Your husband is clearly very ill and pandemic or not, needs the best care possible.

Please also (voice of experience) try to get some rest, impossible as I know that can seem. Flowers

HollowTalk · 27/11/2021 13:59

@Kitkatchunkyplease

I'm so sorry op. My mum died in a situation similar to this and naively I had so believed they would have contacted me if she was dying. I rang the ward 7 times the day she died, and was waiting for a call back from the doctor . Contact pals re the table. Push and push. It's bloody awful.
That is so incredibly upsetting. I'm so sorry for you. 💐
midlifecrash · 27/11/2021 13:59

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.