DH in hospital 2 weeks and I can't speak to a doctor

[SpanishChard]

He was admitted via A&E two weeks ago.

Many problems, most, if not all of which are caused by cancer, which was identified in mid December.

They've told him treatment will be chemotherapy but he's too unwell to have it atm. It's unclear what will change to make him well enough.

I can't see him because of Covid. I'm speaking to him daily but he's in a lot of pain, on a lot of drugs and a bit vague about it all.

I've tried to call the ward but there's never any answer. He's asked them to call me, which they said they will, but they haven't.

I know they're under tremendous pressure, the last thing I want is to be a nuisance but is it unreasonable to want to be able to speak to "someone" about what's happening, what happens next and when?

DH is full of praise for the daily care he's getting but shares my frustrations regarding the lack of clarity around his treatment. If it is that they can't treat him indefinitely or for considerable time, we need them to tell us that and what the implications are. DH would like me to talk to them, he wants the support of having someone speaking up for him.

What do I do next? Should I do anything?

I would ring his consultant's secretary ( hospital should be able to put you through ) and ask for a call from the Consultant. Or does he have a clinical Nurse specialist - most types of Cancer will have a nurse specialising in that cancer type. A lot of these Nurses at the moment are being deployed to the wards but if he has a contact number for one who has been assigned to him then he/ she should know what the plan is likely to be. Likewise if he is under the palliative care team they would also have a designated team of Nurses who could be contacted.

Sorry to hear about your husband. What a worrying time for you all.
I would definitely keep phoning the ward, ask for the nurse in charge or ward manager.
Definitely not unreasonable to want to talk to someone, keep trying every day!
You have a right to know what is going on with your husbands care.

The hospital I work at have a relative information line where nurses will answer questions like this. This is a new thing since the pandemic started to try and help in these situations.

Have you checked if there's anything like this at the hospital he's at? We still try to answer the phones but obviously because the wards are so busy at the moment it can be tough.

I'm sorry. That's not good enough, regardless of what else is going on. He deserves better as a basic minimum and so do you.

No hospital patient should be treated like an inanimate object being stored indefinitely in a warehouse, which is how they're treating him at the moment.

Do not feel guilty for pushing for humane treatment and basic communication. They should be the ones embarrassed and ashamed for failing to communicate or be respectful.

Keep phoning. Was he already seeing someone for the cancer? Call and ask to speak to their secretary and ask for a call back.

Has he a social worker ? Thsy could advocate for you/him at ward level?

It's complicated by the fact that his oncologist is at a different hospital to the one has in. He hasn't actually met the oncologist, his first appointment was a telephone referral, booked before but which took place while he was in hospital, so I wasn't there.

A different set of doctors are caring for him to make him well enough to have the treatment, but I don't understand what those issues are, what needs to be done or how long it's likely to take.

I do have a number for the oncologist's secretary. Would she be the best place to try?

No social worker. He is seeing palliative care for the pain and a cancer nurse is visiting him on the ward.

He feels he's been treated very well and lots of things are happening. He's seeing numerous doctors everyday, but he's unclear about what they're doing or what the specific issues are, which could well be because of the high doses of morphine.

The found the tumours the week before Christmas, so nothing happened for two weeks and then he was in hospital.

PALS might be a place to try? Or his GP?

It sounds so hard, for both of you.

If all else fails, get your husband to call you when the doctor sees him during the morning ward round. Then you can at least hear what’s being said, and he can pass you over to ask questions.

That's not good enough, no matter what pressure they're under. Contact PALS - they must have some kind of contact framework in place, at least in theory. So sorry - a horrible situation for you to be in, OP.

@SpanishChard

It's complicated by the fact that his oncologist is at a different hospital to the one has in. He hasn't actually met the oncologist, his first appointment was a telephone referral, booked before but which took place while he was in hospital, so I wasn't there.

A different set of doctors are caring for him to make him well enough to have the treatment, but I don't understand what those issues are, what needs to be done or how long it's likely to take.

I do have a number for the oncologist's secretary. Would she be the best place to try?

No social worker. He is seeing palliative care for the pain and a cancer nurse is visiting him on the ward.

He feels he's been treated very well and lots of things are happening. He's seeing numerous doctors everyday, but he's unclear about what they're doing or what the specific issues are, which could well be because of the high doses of morphine.

I would ring and ask to speak to the specialist palliative care nurse team. They will not be based on the ward, but will be visiting him daily to give specialist palliative care advice and will have a good idea of what the plan is. It may be that his bloods are not good enough for chemotherapy yet or he is too malnourished or at risk of infection.

It’s very unusual to not be able to get through to a ward at all. Are you sure you are being put through to the right number? What happens when you just keep calling every half hour?

Is your husband with it enough to put you on speaker phone when drs round?

It’s also very unusual for nobody to have contacted you at all and in my experience a failure to attempt contact is the least likely explanation.

In fifteen years in my experience, every time a relative has complained they haven’t been contacted by a dr one of three things has been true: multiple attempts to contact but phone unanswered/engaged/disconnected; multiple attempts to contact but relative’s number not recorded accurately or at all; multiple conversations by female dr announcing herself as a dr dismissed as a phone call from a nurse.

Is the nurse that's visiting him a specialist Nurse for the type of cancer he has ? Most different types of cancer will have a Nurse specialist so if it's a gastric cancer for example there will be the Upper GI Nurse specialist, sometimes some of them have the Macmillan title in their name.

In fifteen years in my experience, every time a relative has complained they haven’t been contacted by a dr one of three things has been true: multiple attempts to contact but phone unanswered/engaged/disconnected; multiple attempts to contact but relative’s number not recorded accurately or at all; multiple conversations by female dr announcing herself as a dr dismissed as a phone call from a nurse.

I think they're not contacting me because they're dealing with him. The numbers on his hospital records are definitely correct, they've been used in the recent past, but not during this hospital stay. DH has been able to contact me every time he's tried so definitely working, I'm even keeping it with me and on when in meetings. I certainly haven't dismissed anyone as "just" a nurse, I'd be delighted to hear from a nurse, I haven't been able to contact anyone.

@Babyroobs

Is the nurse that's visiting him a specialist Nurse for the type of cancer he has ? Most different types of cancer will have a Nurse specialist so if it's a gastric cancer for example there will be the Upper GI Nurse specialist, sometimes some of them have the Macmillan title in their name.

I don't know, but I don't think so.

We have just been through this with my father in law. The only times we have received phone calls is the day after we put a complaint in with pals so I suggest you do that. Sorry xxx

Contact PALS & they will help you get in contact with the ward.

Next time the oncology nurse visits, he needs to phone you when she is in the room, and get her to speak to you.
She will probably be able to give you the best information.
Hope you get some answers soon.

I understand how busy they must be- there are a couple of options that may work.
When the doctors do a round, can your husband FaceTime you so you can hear what they say and ask questions? (your husband would probably need their consent if they are going to be on camera). Or they may agree to come back after ward rounds and do a video call with you and your husband. Worth your husband asking.

Or you could contact PALs, in my experience this is fairly effective and you should get a call back.
Even if you do get through on the phone, it's quite likely you will be told they can't discuss clinical information over the phone! I know this is the case in most hospitals I have had experience in.

I am sure it differs at different hospitals, but when my husband was initially diagnosed the cancer care nurse had a number she could be contacted on.

If you ring the oncol secretary, she should be able to give you a contact number for the cancer nurse who deals with his specific type. Ours has been very helpful and if she didn't know something, she'd find it out.

I'm sorry you're going through this. My husband was admitted at the point we were informed of the diagnosis with a view to getting him strong enough for treatment. Thankfully, they managed to build him up enough and he finished treatment just before Christmas.

I work on a ward which sounds similar to the ward your dh is on. A medical ward where the specialists come to see you rather than a specialist ward.
Phone early - about 8am and ask to speak to the nurse in charge or ward manager. Get an update from them and ask for the dr to phone you. Phone again at 11 If dr still hasn’t called, then again at 2. You need to persevere- it’s frustrating but it’s not acceptable for you not to hear anything. Alternatively go through PALS. They will phone the ward on your behalf.
I hope your dh is ok.

@SpanishChard

I do have a number for the oncologist's secretary. Would she be the best place to try?

That would probably be the best place to start as she can talk to the oncologist who will have the details of his treatment and would be able to contact whoever can help you with what's going on, if it's someone other than him.

Nightmare, OP.

My only remaining elderly relative is in hospital too - just over two weeks - and seems to be going from bad to worse (it's obvious to us that she's become severely dehydrated but trying to get that through to them has been virtually impossible - until this morning they finally put up a drip when somebody noticed how extremely confused and withdrawn she's become).

We have been able to speak to doctors and the ward manager, but continuity is the main problem as unless we can get the ward manager it's a different person almost every time, and they often don't know my relative.

I did speak to a doctor y/day for prolly 15 minutes because it took that long to go through the things that needed to be discussed. It was a polite conversation, on the whole, but he mentioned several times how busy he was and I had to remind him that we needed the information and weren't able to get it in any other way as we're not allowed to visit and the ward doesn't facilitate FaceTime.

I think you'll need to ring and ask for the ward manager, OP. Try to find out when the daily ward round is and ring after that to try to speak to a doctor. Very best of luck to you

I'm sorry, OP - I mentioned your father when I meant your DH x