Communication regarding Covid in care home

[MrsCat1]

My mum has lived in a very nice care home for the last 18 months. She has dementia and very limited mobility. Recently I had a call to say that someone on my mum's wing at the home had tested positive and all residents would now have to stay in their rooms. Two days later a brief email from the home mentioned 'some' cases. An off the record phone call with someone at the home revealed that half of the residents on my mum's wing were positive. I have spoken to the manager and asked for more information about the outbreak, the number of official cases, how things are going etc. She will provide no further information. I feel that they should be more open and upfront about things, and I desperately want more information. Am I being unreasonable? I realise how awful it must be for the home staff and how frantically busy they must be, but I still feel that there should be more information.

YANBU OP. My mum is also in a home which has had covid cases. They have had their jabs but only recently, and there have been "some deaths". I am being met with a similar reticence on the part of the management. We relatives have been receiving monthly newsletters from the owner of the home, but there has been nothing so far this month, so I will be interested to see what is said when it does come out. It is annoying to have to chase up information about such an important matter, when really they should be keeping relatives in the picture.

Thank you @exiledfromcornwall. Things may now change as yesterday evening I heard that my mum had tested positive. Hope that communication improves for you.

My mum is in a dementia care home and they have Covid in the home my mum has it too and is confined to her room, the manager hasn't been very forthcoming in giving updates. I know of one death but only because it's a family friend. I call every other day for updates but get very vague updates.

Thanks @lollipoprainbow. My brother just called for an update and they were too busy, which I understand. But I am so desperate for news. It is a case of managing expectations and being open and honest I feel. Hope that things are ok with you.

I understand you wanting to know but you have no right to other residents medical information including whether they have died. And what would you do with the information if you had it.

@helpfulperson It's not a question about other people's medical information which is of course confidential. It's a question of knowing basic information such as the number of positive cases, whether people have got better etc. For me it is about managing expectations and being transparent about what is going on in the home given the horrendous situation that families like mine find ourselves in.

It's a question of knowing basic information such as the number of positive cases, whether people have got better etc. Does that information actually help you in any way? They told you that there was Covid on your mother's wing, and they've put measures in place to stop its spread. Whether other people recover or die has no bearing on your mother's experience of Covid.

@helpfulperson @MereDintofPandiculation yes I would like to know actually so that I can get a feel for the number of cases and how serious it is. Why don't you both get off your high horses !!!

Yes it is a question of knowing how serious things are. I guess I've spent a lifetime dealing with stats and they would provide important information for me to manage my own expectations. Otherwise I'm in the dark (and expecting the worst).

Turn the question around, on what grounds are they right not to share non-identifying information. What protections do they have to say that families should not be informed how safe (or not) it is for their loved ones?

What protections do they have to say that families should not be informed how safe (or not) it is for their loved ones? I'm not sure the actually number of cases says how safe or not it is - what says how safe is the precautions that are being put in place, and that is information that should be shared. I too have had the experience of knowing a frail and vulnerable loved one has tested positive - knowing how many others were also positive didn't help. Nor do stats help in terms of an individual's experience. Knowing the death rate for the over 90s didn't help me one bit.It is a horrible experience knowing that you can't see them ... and that if you are allowed to see them, it will be the last time you do.

My MIL is also living in a care home and feedback has been very patchy. But the home have tried to facilitate regular contact so we can see that she is fine. They've had some Covid too but haven't given any indication of how many were affected and if anyone died. I'm not sure we would want to know as it would just make my DH more worried.
Sorry to hear your mum has tested positive though. That's not good news.

MrsCat1 Sorry to hear your mother has tested positive, it must be such a worry for you. Can't believe some of the responses on here, it's not like you are demanding to know actual names of people who have died or have had it.

My issue with not being told anything is I've no way of knowing how effective their precautions are. This matters, because it also impacts whether or not (and usually not) we are allowed to visit. It makes me feel like they have something to hide.

It makes me feel like they have something to hide. I suspect a lot of care homes are trying to hide things at the moment - back in July it seemed that about 50% of care homes had had a Covid outbreak if I read the figures correctly, and presumably that's gone up since. Admissions are down - you can see from MN that people are trying to postpone care home admissions till after Covid, vacancy rate is up, and homes work on a business model of full or near-full occupancy, so are desperate to attract residents. So you can understand why they are being cagey. And I don't expect any of us wants "our" home to go bust.

@MereDintofPandiculation they shouldn't be hiding anything.

@MereDintofPandiculation I am sure that you are right and some care homes will definitely be trying to hide things. These are challenging times and I feel that we are all owed the truth, whatever that may look like. In my experience the truth always comes out in the end.

Just trying to get my mother's care home to answer the phone is a challenge in itself, let alone extracting any information.

I think you should be able to have more information. My grandparents care home’s manager has been doing weekly live zooms which are recorded and sent out. Since December when they have had cases they have given the numbers of residents and staff who have tested positive, in hospital or are having to isolate or who are still off work. They’ve also explained all their PPE, decisions around visiting etc. It’s been very reassuring, and even though the news hasn’t been good (they had to borrow staff from a neighboring home and asked for volunteers one week) it has felt that they were making sensible decision and being honest and accountable throughout a very difficult time. I think your care home could do better.

Josie That's very impressive. And brave.

@MereDintofPandiculation sorry why is it brave ?! It's what they should be doing? You seem to think homes should be keeping information to themselves ! Are you are care home owner ?? Bizarre.