Support over privacy NHS care

[worriedwife201]

Dropping the DH for cancer screening (symptom positive) tomorrow and worried sick. Reread the leaflet and I cannot stay with him to protect privacy and dignity!! Erm sorry I would lie in my birthday suit (which wouldn’t be pretty) in the town centre if it meant I could be there to support him and he would do the same. We live in a world where everything can be hacked, who actually expects privacy. Once this is all over I see a campaign coming but need to know I’m not the only one

I’m being unreadable - privacy trumps support at a time of insane worry
I’m not being unreasonable - support is more important than privacy

It's a bit of both I think. My own DH went through a LOT of tests and procedures that I was not allowed in for. He eventually was diagnosed with bowel cancer that metastasised to his liver. All I wanted was to be in the room for support, or hold his hand. It was so hard to just wait. But I do understand the need for privacy. Just because things are hacked these days, doesn't make privacy any less important. I think there should be a choice for people to have support if they want it. But also some procedures, it's just not possible to be in the same room. I'm sorry you are going through this, I do hope tomorrow goes as well as it can.

When he is alone with the doctor he can ask them to waive confidentiality and request they allow you along to provide emotional support . it is up to the clincians but they may agree. Some things like xrays cant be attended, of course.

See even that I think should be a choice for the person to make, I would take the radiation risk if it was for my child DH I would be outside the door unless he really needed me in which case meh it’s only a therapeutic dose. This isn’t even about being in the room he’s being taken down for a procedure and if he was a child I would meet him in recovery but as he’s an adult I can’t which to me is insane. He also has to wait to go down on his own again insane. It also should be the patient not the clinicians choice. He cannot face the news on his own so is going to demand I’m brought in or they can tell him in the waiting room so I don’t imagine this is going to be pretty.

I hope your husband is okay now.

Very similar position but we can’t even wait in the department for him, I’ve never known anything like it. He’s was in theatre for me having DS and on the ward afterwards. Why an investigation unit requires more privacy than a delivery unit is beyond me right now. You see all the adverts that no one should face cancer alone yet it’s perfectly acceptable for someone to go through screening and diagnosis alone. We’re hopeful if it is bad news it will be very early stage disease and it’s something we are really passionate about trying to change. Don’t get me wrong if he was going in for a a knee replacement etc you can keep him but this is very very different. I wish we had pushed to have it done in the private sector as they seem to be a lot more understanding of the mental needs actually being greater than the clinical need at this stage but not the NHS 😡 time is critical right now otherwise I think he would be cancelling the appointment to go private.

I think as the 1st generation to grow up with the internet I can’t be convinced anyone actually has privacy anymore it’s more a concept we try to pretend exists. Someone was live streaming an accident near us a few hours back from a drone. Our house is converted by multiple cameras and we all broadcast our location 24/7. I actually had to have a conversation with DS that hacking was illegal a few years back as by age 10 I was worried he had the skills to do it. Leaving DH at the unit door tomorrow will be heartbreaking he needs me right now and I’m actually angry with why as even if a video of his procedure was leaked he would be like oh cool can I watch it I don’t know what they are actually protecting. All I know is we are both on the verge of tears and being a split up at the point we want to be together the most.

OP I’m sorry you can’t be with your DH. That seems very wrong to me. I hope the news is good for him.

Mine has prostate cancer and I attend every appointment with him. When he had surgery and scans, I could only go so far, but whenever discussions are happening I’m there. He has signed paperwork that I’m entitled to know everything and have access to his results. Quite frankly, he’d be adrift if he had to listen to all the medical lingo by himself as he doesn’t really understand it all.

I think it's.swings and roundabouts. Not having a dedicated waiting space/ option for a.loved one / supporter feels a bit off. It should.also definitely be patient choice if they have someone there for results.
But for actual investigations etc.. then I'm not sure if it should be automatic that somone else should be there.in the procedure room.

For example I've had a colonoscopy and would not have wanted DH in the room for that.
Equally I'm not sure.it would have been practical/ helpful for the staff to have another.body in the room. Space was limited, people doing the procedure need to concentrate and it's all done with minimal staff so if the supporting person couldn't handle it then I'm not sure there would be spare staff to sort them.out.
I'm also guessing depending on the procedure they can be increased infection risks the more people they let in etc...although that is just a guess and I'm.happy to be corrected.

OP I am sure you will be present when it comes to DH hearing the results, that is normal. They don't usually tell the patient anything while the tests are going on. I do hope he is OK.

@OrganisedOnTheSurfacewe manage it for c sections so actually any the procedure where the patient is awake I don’t see the issue. I would want DH in a colonoscopy if I was awake which is the challenge and why it needs to be patient choice.

@Morecoffeeneedef nope he will have the procedure using Entonox as he doesn’t want to be alone for any longer which he would be with a sedative. They will then discuss the result and return him to me in the waiting room it’s appalling. He’s been up half the night and is waiting for our local private provider to open to see if their any chance of a booking this week. If there is we are going to pay for that, I’ve talked him into going ahead if it’s longer than that but will be making a fuss and potential kicking off if he rings and I’m not taken to him when he wants me.

once today is over I think we are going to push for change but it’s so close to the appointment nothing is going to benefit him out of it.

@worriedwife201

The reason for relatives not being allowed in to treatment rooms is usually about infection and lack of space rather than privacy. However it should be remembered that not all relatives have their loved ones best interest at heart and the NHS has to be mindful of that and are conscious of coercion.

You would rightly not be allowed in where a colonoscopy is taking place because it's a sterile space. You would of course be allowed to attend subsequent appointments.

Relatives who want to be with patients is increasingly becoming a problem and some adults are terrified of being on their own for only a few minutes. Letters saying relatives and friends can't accompany patients into waiting rooms because of infection risk and/or lack of space are often ignored and they turn up taking seats whilst patients have to stand. Chemotherapy suites are often rammed because of people accompanying patients which makes the working space for nurses difficult. I waited with urgency to use the patient toilet when I had colon cancer to find that it was a relative/friend using it.