Visits daily whilst sister in ICU which everyone agreed helped her recovery now no visits allowed on ward side room. What can we do?

[Beanyynwa]

I am delighted to say that things have moved so rapidly over a week and my sister has progressed to the point where tracky removed today and she is being moved to ward in an hour into a side room. Great, we are so happy.

She has been in ICU for 50 days and critical for 36 days. After 3 weeks of no visits, I asked doctor if we could visit her and for 2 weeks one of my sisters were allowed to see her for an hour on Mondays and Fridays. When she started to respond positively to visits, they recommended weekly visits and we have been doing this daily for between 1 and 4 hours ( one or on two occasions two of us) depending on how tired and sleepy she is. We are now told by ICU sister that Ward Sister stated that once she moves we can only visit for 30 mins on Tuesday for her birthday.

ICU sister will email Ward Matron and advocate for three short visits a week as this is in her best interest and for her mental health and prevent potential depression.

I respect NHS staff and understand the need to protect everyone. I also know that other relatives are in the same situation but I have to advocate for my sister.

I am concerned that without visits my sister will get depressed and already suffered from depression and anxiety before contracting coronavirus. Our mother died two weeks before my sister was admitted to ICU and she did not see her or attend her funeral and there has had no chance to grieve. Being with her enable her to ask questions and be given answers and be comforted. Yesterday she thought we were going to take her to see mum before the funeral and I had explained that mum was buried over a month ago. This was distressing for her but I was able to explain and comfort her.

We can get her a tablet and she has her mobile phone but is unable to use her fingers and hands fully.

ICU sister suggested I contact ward sister on Monday afternoon a re visiting three times a week and if no joy speak with Matron. I will if needed talk to PALS and ask for psychologist assessment.

Any guidance would be greatly appreciated. Thanks.

[LeopardGecko]

I'm so pleased to hear how well she is doing 🙂

I had to stop visiting my husband when Covid cases began to rise and I know that it had a negative impact on him (and myself). Unfortunately I didn't manage to get very far as the hospital was inundated with Covid cases and I couldn't really argue with them. One thing that I did do was to keep in contact with his physio team who were able to facilitate an occasional outside visit. I know that you want to be able to visit your sister more frequently so this might not really help you.

I think everything you have suggested already is what I would have said - ward manager and PALs. I also had some contact with a nurse who was in charge of overseeing rehabilitation.

My husband had very limited use of his hands and fingers after a long stay in ICU and HDU. I bought a tablet holder which they could attach to his bed for video calls and he gradually developed the ability to operate it himself to watch iplayer, Netflix etc. This might be something you could try as well as trying to have the regular visits.

Happy to chat to you more on Tuesday in the relatives group if you want. Sarah x

[FamilyHistorian]

As Sarah says PALS may be the way forward. Simon

[Beanyynwa in reply to FamilyHistorian]

Thank you Sarah and Simon. Very helpful.

One of the nurses told me that I could see her for 10 minutes tommorrow which is something. I asked if they could help her access her mobile tonight so I could have a quick chat with her and they agreed but for some reason this didn't work. Nurse asked me to video call but no answer despite trying several times. I was later told that the nurse was busy and that I should call back later.

I hate to moan and am so glad she has progressed and grateful to ICU staff but this feels like frustrating and unnecessary challenges. My sister's physical health has improved and visits have been a significant factor. Continued contact with family and her mental wellbeing are crucial to her recovery. I would have hoped that there was a more reliable and accessible way for us to keep in touch with her but even phoning for a quick chat is not possible. When my mum was in hospital with a different trust nurses had access to a mobile she could speak with us on.

I will get her a tv card tommorrow so she can watch the telly so she doesn't get bored . I will get her magazines and books too.

I will talk to the physiotherapists and rehabilitation team on Monday. I willcontact the chaplinacy too as they might be willing to call me when they are with her. I thought that hospitals were adopting a trauma based approach.

I really understand the need to keep infection under control but we were going into ICU daily with minimum PPE - apron, mask and gloves and lately only a mask. I am more than happy to have regular pcr tests (lateral flow tests are not reliable) and wear full PPE which my other sister who is a carer can provide.

I will be happy to see her tommorrow for the 10 minutes and then pray that we can see her at least once a week.

[FamilyHistorian]

When I stepped down to the wards the staffing levels were so different and the staff just didn’t have time to stop and talk. Not only that some don’t appreciate what being an icu patient means

[mswde1972]

Morning , the wards are under so much pressure, many staff have left and off sick themselves due to the pressures over the last year. Your sister will be followed up by the outreach team and possibly the my may have a critical care rehabilitation team also ( my role ) they help fill the gap between ICU / ward based care . You could get a white board so staff can write what day it is and where she is, what her needs are . I pad / DVD player/ radio ????? Arrange a time which is convenient for staff and you to call / face time . Once she’s moved speak to the sister ( band 7) try to work out something between you and then you can speak to matron or pals . Sometimes if possible the Rehab can facilitate visits , even outside. I know your sister is your priority but everyone of one the ward is there’s. 30 patients all desperate to see family and the nurses are stuck between families and the system. Wards have had infection breakdowns and patients then died . Fingers crossed you come to a suitable agreement xxxx

[Beanyynwa in reply to mswde1972]

Thanks very helpfulUnfortunately she is back in ICU and ventilator again 😭😭😭

[Delel]

Your story is so similar to mine that I could have written it myself! My sister also is out of the worst after 3 months in ICU and now tracheo remove.

We can't see her as well due to restriction but I am calling her everyday on WhatsApp so I can see her aswell as speaking to her and she really appreciate this.

If your sister cannot hold the phone, get her a free stand to hold and call the nurses beforehand to warn them you're going to call her so that they can help her answer the phone.

She will soon be able to do it herself though!

Very happy that your sister is doing better!

[Sepsur]

What a bloody nightmare.

Got to dash out - will respond more fully later.

On the plus side - so pleased for you all with all the positive moves forward

[Sepsur]

I would pursue the approach that you are taking. I cannot stress enough how important visits were from my family. The anticipation was immense - if anyone was even the slightest bit late, I would be frantic - assuming something awful had happened to them - my capacity for catastrophising was increased a thousandfold.

I don’t know how you get around the visiting issue beyond tablet/mobile device - I was very like your sister & couldnt use my hands fingers very well - but I could do it a enough to text & answer phone.

There is a good phone app by society of critical care medicine called the ‘patient communicator’ but your sister maybe more progressed for this. 😊

[Beanyynwa in reply to Sepsur]

Omg just got call from doctor in ICU. Sister is back in ICU and on ventilator due to bleed. Source not known. Could be tracky bleed into lungs or ulcer in stomach. She is on 60% oxygen and high pressure from ventilator. BP is fine but heart rate fast. They have said we can come now and I am in cab. We CAN'T lose her. 😭😭😭😭

[Sepsur in reply to Beanyynwa]

I hope that it isn’t the awful news that you are anticipating. Your poor sister & you have been through so much.