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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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:
Player456 · 27/11/2021 18:24

A lot of what's been said on this thread (and what the hospital have told you OP), is bullshit!

If someone is end of life, then relatives can be there 24/7, and it is NOT restricted to spouses, or one person at a time. The caveat is more than three wouldn't be allowed, and no children. But it is absolutely not true that there are restrictions on end of life care for any patients, despite of the pandemic.

Make a fuss, refuse to leave. Is there a hospice nearby? There is someone usually there that you can contact at weekends, who may be able to get a palliative care nurse to come up and help.

Do you want your DH home? Despite it being a weekend there are people who can help x

Waitwhatwhy · 27/11/2021 18:34

@Player456 in our trust end of life is “likely to be within 7 days”. Having just read her previous thread OPs husband has terminal cancer but not late stage so end of life won’t apply.

Waitwhatwhy · 27/11/2021 18:37

Going back to the original question, I really would push with ward manager that you are phoned daily by the named nurse on duty. I wish I had done that when my dh was unable to use his phone.

Phineyj · 27/11/2021 18:55

I think there may well be some mileage in turning up in person (depending how far the hospital is). The front desk may be able to get through by bleeping someone or calling a line they don't give out publicly? Failing that, definitely email the CEO daily and keep on at PALS.

My sympathies. My Dad was in for 2 months in late 2020 and it wasn't this bad, although they kept talking to him about treatment without giving him a chance to put his hearing aids in, which was crap and pointless.

ILoveAGlassofFizzy · 27/11/2021 18:59

The irony at the hospital we were at, PALS shut at weekends........................................... Make sure that his buzzer is ducktaped to his bedbars (they are usually placed out of reach....)

ILoveAGlassofFizzy · 27/11/2021 18:59

I would also attach a note sellotaped on the table as to which side it should be on xx

beekeepershat · 27/11/2021 19:01

It's so awful OP but in health care the squeaky wheel gets the grease. So absolutely make yourself heard. PALS is a great place to start.

TicTac80 · 27/11/2021 19:36

@MrsOvertonsWindow

So unacceptable OP. I've also read your other threads and having recently had hospital treatment I noticed the massive over staffing in the few clinics being run and the countless empty spaces where pre covid there would have been clinics / treatment happening. It's apparent some of this is a logistics / management problem. We're nearly 2 years into this and it's unacceptable that management aren't managing better. I'm not having a go at hard working hcps - but at the highly paid managerial staff and systems that are allowing situations like yours to continue - for years! Maybe you should email your MP? Their letters usually get prompt responses when ordinary people can't get responses / acceptable treatment for their terminally ill relatives?
I can't comment on the overstaffing of the hospital clinics, but a lot of those staff wouldn't be able to be redeployed to work where I work anyway: this would be due to the acuity of the patients we have (the staff would need a lot of additional training - which takes a long time to get), and that the ward is a covid ward (so not everyone can work here due to the risk if they have health issues themselves...and many don't want to come and work on the ward). I can't comment on elsewhere though!!

A lot of ward staff are leaving, which is absolutely crap! Also a lot of staff are off sick themselves, or having to isolate at home with kids etc. From the "shop floor", we are asking higher management to sort out getting more staff for us. Unfortunately, there aren't many takers! I'm betting that is the same in many other Trusts!

Nousernameforme · 27/11/2021 19:43

For all those assuming that carers can stay longer with a terminal patient, you are incorrect. We recently had a similar situation. And the visiting rules was one person one hour per day.
I know it's been said but get him into hospice as soon as you can. You can then be with him all day they also do overnights. And in hospice they develop a relationship with you the family and if he is able to go home they will still support you there.

Player456 · 27/11/2021 19:47

[quote Waitwhatwhy]@Player456 in our trust end of life is “likely to be within 7 days”. Having just read her previous thread OPs husband has terminal cancer but not late stage so end of life won’t apply.[/quote]
That doesn't apply to our trust (Bucks).

My Dbro was taken to hospital in Slough with a urine infection during the first lockdown early summer last year.

The hospital didn't look after him properly, because he developed aspiration pneumonia. To start with no one could visit him, then when he got pneumonia we were allowed unrestricted access.

We got a call saying they were taking him off antibiotics and withdrawing care. We rushed to the hospital, where I got very upset with a nurse trying to block me, till another nurse said our family was on 24/7 access.

When we were first allowed unrestricted access, he was still being treated and they were hopeful that the antibiotics would work.

They did say that only two were allowed in at once, but no one said a word when my parents and my sister and I, all went in at once, so we could be a family together for the last time.

My dad had terminal cancer. His oncologist kept sending into hospital to check on things. We were told, the last time this happened, that they would refuse to admit him again, as his preferred place of death was home, and his kidney function wouldn't recover.

He fell at home one Sunday night, mum called the ambulance as she struggled to lift him. They insisted on taking him to hospital as he had a cut on his head.

We were allowed access again. He wasn't (at that point), thought to be in the last days of life. We had a standoff with a nurse who refused us (mum, Dsis and me), to be in there at once, until the ward clerk intervened, saying the doctor had allowed it (which is why we were all there).

Frustratingly they tried to improve dad's kidney function and refused to discharge him, as it was so bad.

We tried for a week to get him home. Then it was the weekend and they stopped the drips. We asked for him to come home immediately, as we'd arranged. The hospital refused, saying it couldn't be in place, that he was confused, it would be detrimental (though they tried to push a hospice on us).

In the end my sister said she would wheel him out herself and strip off on the roof after calling the papers, as they were so set against it.

Dad came home the next day (Sunday). He died four days later - just over a year after his beloved son died.

It may be that dad was thought to have limited time left (though they were actively treating him when we were all allowed in, as and when we wanted), same with Dbro, when we first were all allowed in (parents me and sis), he was actively being treated for pneumonia, and he was responding initially to). The fact he was allowed to get pneumonia is still a cause of distress, but I don't want to say too much in case we take it further.

OP I really hope that you can get some answers. We may be in a pandemic, but your husband isn't (or certainly shouldn't be) on a ward with Covid + patients, so there is no reason they won't let you see him. The times dad was admitted, before his final fall, we were allowed to visit him. The only times we weren't were in the ambulance or in A&E/observation ward.

bloodywhitecat · 27/11/2021 19:47

I asked yesterday if the palliative care team could get involved(we have had no input from them despite DH being told he is for palliative treatment only this time last year). A lovely nurse sat with me and went through all our issues and agrees that our experience with the hospital has not been as it should be. I told him my biggest fear is not getting him home in time. The nurse was able to see for himself how different DH's communication is with me to how it is with the medical team. DH is in pain and is nauseous which is a new symptom, he was able to communicate this clearly to me but not to the nurse. I now have the Dect phone number for the ward sister. There is now a note on DH's whiteboard to say the table must be on his left hand side. I have another meeting with the palliative team on Monday. It is even stupid stuff like no-one had asked him if he wanted a tea or coffee so he has just been having thickened water to drink (and not drinking it)

Thank you for all the kindness and the advice, I was beginning to doubt myself but you gave me the kick I needed to speak up again.

OP posts:
bloodywhitecat · 27/11/2021 19:48

The lovely nurse was from the palliative team

OP posts:
Player456 · 27/11/2021 19:49

@Nousernameforme

For all those assuming that carers can stay longer with a terminal patient, you are incorrect. We recently had a similar situation. And the visiting rules was one person one hour per day. I know it's been said but get him into hospice as soon as you can. You can then be with him all day they also do overnights. And in hospice they develop a relationship with you the family and if he is able to go home they will still support you there.
If that was aimed at me, then no I am not incorrect. The entire family was allowed in with Dbro (I have photos to prove this) and same with dad. Your hospital may be different, but Stoke Mandeville allows it (even with Covid + patients as my friend and her dad were with her uncle when he died a couple of months ago).

Wexham Park also allows it.

JustLyra · 27/11/2021 19:50

@Nousernameforme

For all those assuming that carers can stay longer with a terminal patient, you are incorrect. We recently had a similar situation. And the visiting rules was one person one hour per day. I know it's been said but get him into hospice as soon as you can. You can then be with him all day they also do overnights. And in hospice they develop a relationship with you the family and if he is able to go home they will still support you there.
That shouldn't be the case though. Lots of hospitals were incorrect in their handling of terminal patients when restrictions were eased and are still doing so.

There shouldn't be restrictions on the OP spending time with her husband right now.

Allthelols · 27/11/2021 19:52

This makes me incredibly sad. This is not acceptable care by any stretch of the imagination in a civilised society.
I work in palliative care. I’m so very sorry you are going through this.
Would they consider moving him to a hospice if he isn’t yet up to going home?
Can I ask roughly where you are in the U.K.?

Buttermaflooby · 27/11/2021 19:52

I couldn't not comment on this. Currently in the same situation. DM in hosp with undiagnosed illness. They think maybe progressed Parkinson's but also some nerve compression. She's in absolute agony with no movement in her right side. She's been in 4 and a half weeks and on Friday we heard from a Dr for the first time. After a million calls to pals. The first two weeks she was on a covid ward (tested positive from past infection - no symptoms) I finally went to see her last week and was assaulted by another patient (apparently brought up from a&e but on drugs) on the ward. (Backhanded round the face). DM has had some shocking HCAs who have been downright bullies. Telling her off if she pushes her buzzer for help etc. I can't believe the lack of communication at all. It's been shocking. No one answers the phone. You literally get nowhere unless you're on the phone to pals every single day. It's heart breaking. My DM was a nurse herself and seeing the fear in her eyes when we leave her to their mercy knowing she may well not get what she needs is awful. Please phone pals daily until they start paying attention to you!

Player456 · 27/11/2021 19:53

@bloodywhitecat I am so glad you've got the phone number.

Palliative care nurses are worth their weight in gold, they are very special people.

Ask for special sliding sheets if your husband is not mobile. Ask them to put in a package of care ASAP.

You should be given a special hospital bed (and the sliding sheets), possibly a syringe driver, depending on his condition.

I really hope you get the resolution you desire Flowers

Player456 · 27/11/2021 19:56

@Buttermaflooby I am so sorry about your Dmum Flowers, it is so inhumane and frustrating for the staff who do care.

StopGo · 27/11/2021 20:01

@CallMeK

Why are you calling? Why aren't you there?
Because we CAN’T be there with our loved ones. I lost my husband 18 months ago in similar circumstances. The hospital promised me that lessons had been learnt and no family would go through such distress ever again.

Guess what, they lied. I’m walking the same path with my elderly DM.

DontKeepTheFaith · 27/11/2021 20:02

What an awful situation😢 I’m so sorry for what you are going through.

This is where the COVID rules just become inhumane. I know no one wants COVID spreading but in situations like this, family are so important.

Contact Pals in writing, they are obliged to forward it to the ward to respond to. Also, on Monday call and ask to speak to the ward manager and share your concerns. If you don’t get anywhere ask for the Matron’s contact details. They are above ward managers.

I’m an RMN so the role names are slightly different but I think ward sister would be Band 6 so ward manager above and matron above that.

Waitwhatwhy · 27/11/2021 20:14

Great you spoke up for yourself, well done it’s hard when you’re so ground down with the situation. I hope the palliative care nurse continues to be helpful.
Remember to take care of yourself, easier said than done

TicTac80 · 27/11/2021 20:15

@bloodywhitecat, I'm so glad that you have spoken to the palliative team and got a number for the ward manager!

@Nousernameforme, from all the posts I've read here, I think it's pretty clear that visiting policies vary widely from hospital to hospital. I know the rules for visiting on my ward, and they differ from what you posted.

Anyway, OP I hope you manage to talk to the ward manager on Monday and get a clear idea of what is happening. x

Waitwhatwhy · 27/11/2021 20:15

That sounded incredibly condescending, I didn’t mean to be, I just know how hard it is as I’m dealing with the hospital too

PerfectlyUnsuitable · 27/11/2021 20:30

@bloodywhitecat we’ve just gone through the same with my FIL. It’s awful and I think this is because the whole system has been relying on family being the patient’s advocate but with no visits allowed (or very few), it’s just not happening.

I have found too that the palliative care team is the best bet. They are the only ones who got things done and kept in mind for everyone that FIL was terminal rather than any other patient with no life limiting issue.

I hope they will be able to liaise with everyone and he can get back home soon.

PerfectlyUnsuitable · 27/11/2021 20:31

@TicTac80, yep the variation from one ward/hospital to the next is crazy.
In FIL case, NO visit at all were allowed. He spent his last 3 months in hospital alone because of that :(