Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

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:
Gwennid · 27/11/2021 15:40

My mum had my stepdad at home in similar circumstances. A hospital bed was set up in her lounge and carers came several times a day. It was such a relief after her spending every day, all day, at the hospital, pre covid.

Any chance of this OP or is it too soon? My lovely stepdad was so much more relaxed at home.

Mydogmylife · 27/11/2021 15:43

@CallMeK

Why are you calling? Why aren't you there?
Just have a wee think about what you've just said!
Timeforwinterclothes · 27/11/2021 15:53

@bloodywhitecat I've followed you since your first post about your husband's health. This is just so unfair. Weekends always make it worse in hospitals as virtually nothing happens on the ward. You've had some helpful suggestions so won't repeat them, but just wanted to tell you that you are in my thoughts.

NellePorter · 27/11/2021 15:57

I'm so sorry you are going through this, YANBU. I don't have any helpful suggestions but Flowers for you and your DH.

ILoveAGlassofFizzy · 27/11/2021 16:00

@ChiaraRimini

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.
Chiara is right, even though hospital care is rubbish on a weekend, a side effect of this is that you can usually visit for longer as nobody cares.............................
Laiste · 27/11/2021 16:03

You've had great advice OP i just wanted to add that i totally believe you too.

When DM was in hospital this summer for 6 weeks i had hells delight getting anyone to answer the phone for updates. I'm her ONLY relative, only point of contact for anything she needs ect.

However, having said that they would let me visit for as long as i pleased whenever i pleased. That was mainly because i live an hour and a half away from the hospital though and was bringing her meals.

butterfly990 · 27/11/2021 16:15

A lady I met pre-covid times put up lots of photos and cards etc where she could to help remind people that her husband was a person who is loved, has a life and not just a patient.

Big hugs to you. Hope you get results soon xx

JustLyra · 27/11/2021 16:19

Please shout to everyone you can find - visiting restrictions should not apply in your husband’s situation.

The table situation is appalling care.

I’m so sorry a horrendous time is being made harder.

Purplewithred · 27/11/2021 16:24

I've just reported to our local hospitals on this kind of experience. it's completely unacceptable and we found plenty of cases of negative clinical consequences as a result of poor communication.

In addition to all the excellent advice above, find out who the safeguarding lead is at the hospital and tell them about the table on the wrong side so he can't reach food/drink - it's putting your husband at risk of harm (not to mention the falls).

Laiste · 27/11/2021 16:30

@butterfly990

A lady I met pre-covid times put up lots of photos and cards etc where she could to help remind people that her husband was a person who is loved, has a life and not just a patient.

Big hugs to you. Hope you get results soon xx

That makes total sense.

But goodness, how that hammers home - when you really think about this - the awful state of hospitals that that reminder is needed. Not 'just' a patient :(

Nocutenamesleft · 27/11/2021 16:39

Also I’d get onto PALS. Then the chief commissioner.

Marmite17 · 27/11/2021 16:54

I've heard of drinks being put out of range before. Seems a fairly common practice and has resulted in deaths. Really think your husband needs help ASAP.

Timeandtune · 27/11/2021 16:59

This might not get immediate results but you might want to post feedback on the Care Opinion website. It’s a Tripadvisor for health services. They are very good about getting replies to peoples’experiences.

GoodnightGrandma · 27/11/2021 17:01

Contact Pals and complain.

Nanny0gg · 27/11/2021 17:03

@CallMeK

Why are you calling? Why aren't you there?
Because she'd clearly rather sit in the warm than go and visit her husband?

What a stupid, thoughtless comment to make.

Soontobe60 · 27/11/2021 17:05

@Chamomileteaplease

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.

The problem is that there is a limit on the number of visitors allowed on the ward at any one time, so if one patient has a visitor for more than the designated time, it means another patient will have fewer visitors. It’s absolutely shit, but sadly that’s the current state of play in hospitals at the moment.
TheCanyon · 27/11/2021 17:11

Do you know who the medical director is? I'd be contacting them 24/7 until I got results.

kitcat15 · 27/11/2021 17:16

The (junior ) ward sister is likely a band 6 ....the matron will be a band 8 a at least .....don't get fobbed off by the ward staff.....ask for on call matron to be bleeped

Waitwhatwhy · 27/11/2021 17:20

I’m 4 months into this after my dh had a stroke. It’s horrendous and really adds to the stress of the situation.

When he was first admitted it took 2 days to get to speak to a ( junior) doctor. One day I rang the ward 72 times throughout the day and didn’t get through. Despite him being very seriously ill and needing emergency surgery a week in, I wasn’t allowed to visit at all.

I eventually got to visit daily to help with his feeding. This was how the ward sister got round the no visiting rules. Could you try that if you’re not allowed daily visits? Still only one hour, and only me not the (adult) dc.

Once he could feed himself I am allowed in to help with his OT, massage etc of affected hand. Again, a way round the rules.

I would hope with your dh also having a terminal illness the ward staff would do their best to get round the rules.

I think you could also ask the ward for his named nurse to phone you daily, as it is impossible to get through, and would be easier for them to know it’s on their list than having to break off what they are doing when you do get through. The number of times I’ve been told he’ll ring me back and they never do is ridiculous.

Agree with pp, ask them to write on his board above his bed that table needs to be on the correct side. Doesn’t always get noticed but helps sometimes.

I have found the occupational therapists are the ones who get things done to help. Their role is massive, much more than I had realised. They’re very holistic in approach and very good at finding solutions.

Jossbow · 27/11/2021 17:21

As an essential carer you are allowed to be there longer, to help feed him etc. Stand your ground.

Ask for a best interests meeting at the first opportunity, in prson, NOT over the phone.

See if you can get him ''Fast tracked for CHC funding'' as soon as he is well enough to be moved to a nursing home if you cant get a hospice bed

TicTac80 · 27/11/2021 17:35

@bloodywhitecat, I'm so sorry you are having such a hard time getting through to the ward. I know how difficult it is for loved ones, particularly during these times.

I can't speak for other wards, but on my ward (I'm a ward sister), 1 hour of visiting per day is allowed (due to covid). However(!) exceptions can be made if a relative helps with the care of the patient (i.e. feeding, assisting with communication or if they're confused/have dementia, to help orientate/settle them*). It's not a one size fits all. Anyone coming in is informed of the risk of covid and the policies put in place in my Trust.

*disclaimer: of course we feed, care for and try to settle/orientate patients....but we are not the familiar face or voice that a relative or NOK is! And it's always good to work with families whenever we can.

If a patient is said to be "end of life" (i.e. imminently dying) by the doctors, then visiting is also relaxed.

I saw a PP mention hospice transfer...in my area, a transfer to a hospice bed will depend on the Consultant at the Hospice accepting the patient. Usually the criteria would be that a patient is very close to dying (i.e within days). Sometimes a patient will go in for symptom control, and then back home.

Re: telephone calls. During the week, we have a ward clerk between 8am and 5pm. During other times, it is just the ward staff. Most of the time, when the phone rings, we are involved in patient care (my ward is a 30 bed acute ward, with many Level 2/HDU patients - so these patients are very unwell)...so for me, the priority will always have to be attending to patients before answering telephone calls. However, I do tell doctors/the MDT (multidisciplinary team - so, physio/OT/SALT/specialist teams) to telephone NOK, otherwise I find out who hasn't been updated, get verbal consent (when I can) from the patient and then make sure the NOK is updated (and then make sure that this conversation has been documented), staffing levels permitting this. During visiting hours, assuming my staffing levels aren't too hideous (and over the past few months, my ward has been operating at about 60% - 80% of it's normal staffing levels) I will do my rounds and ensure patients and their NOK are aware of the situation and plans for their treatment.

The above is for my ward/Trust/area though, and naturally other settings will have different policies.

OP, I need to tell you that you're not being a bother, and you're not being a pest by asking what is happening and raising any concerns. I would want to know plans if it were my parents/loved ones, and anyone would. As a Sister (and yes, we are different from the Matrons), I want to know about any concerns raised by my patients or NOK, so that I can address them properly and promptly. I would want my patients and their NOK to feel comfortable about approaching me/my staff about anything. If I can help, I will. If I can't, I would escalate this and keep the patient/NOK in the loop. I would hope that this is the same for other wards too. Because in the end, I (and my colleagues) are looking after people who are very precious and much loved by others. I teach my junior staff that often all it takes is a five or ten minute conversation and that can really help things, rather than have a patient or relative sit there in ignorance and get more and more worried and upset.

So please, try and get hold of the Ward Manager (this will be a Sister or Charge Nurse - and they often work Mon-Fri rather than weekends), and the Matron for the ward. If you can't get hold of them, go for PALS. PALS a great team of people who will be able to get your concerns sent to the right person quickly. See what they say and see whether the visiting rules can be relaxed.

If you ever want to PM me for a vent, feel free. x

MrsOvertonsWindow · 27/11/2021 17:44

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?

Suzanne999 · 27/11/2021 17:49

I’m sorry you and your husband are having such a tough time.
PALS is the department to get hold of at the hospital. You’ll probably get an answerphone but leave a message and email too. Have a think about the wording so they know it’s serious and might come back on them without sounding threatening , that seems to get the best results.

Carriemac · 27/11/2021 17:59

It's terrible . I work in a large trust We are really being impacted staffing wise still with staff off with kids isolating. The OTs should ensure basic things like the table being within reach.

Waitwhatwhy · 27/11/2021 18:03

Have you been in touch with The Stroke Association too? I’m told our local team are very helpful with leasing with wards though I haven’t spoken to them as yet,