Anyone else completely lost in forest of apps and deluge of notifications?

[fourhundredandsomething]

I was expecting a phone consultation today but it didn't happen. I've got two appointments in the next two days that I know about, but no idea if I am supposed to have blood tests first, or anything, there are just so many apps and so many messages I can't work out anything. Multiple notifications seem to be duplicates, or are they for different appointments that will be happening on the same day? I can't get into the apps very easily, and if I do, I don't really understand what they are supposed to mean.

Is anyone else struggling with all of this too? Any clues? I have MyChart, NHS portal, Accu, ASKfirst, and Sensly apps, I think that is all. And the normal NHS one. And one called ASK NHS, but I am not sure if this is a separate app or the same as ASKfirst, or NHS portal.

I have the same password for all of them, but can't get in to them most of the time. I also have text messages coming at me from at least 4 different numbers, mostly telling me I have to log into the apps and do things.

Anybody have any idea what all this means? Is there one I should be prioritising? Or am I supposed to be managing them all? I don't actually think I have enough space on my phone for them all, so I think I need to delete some and use some, but it seems I am supposed to be using them all. And I am totally lost

I know one of them informed me I had a telephone consultation today, so I was hoping to ask, but unfortunately no one rang, and so I am none the wiser - I cant work out now which app the information about todays call was on. And I dont know now whether I should go into hospital tomorrow or wait at home for a phone call, or what.

Thanks for any help or advice

This sounds very confusing! Sorry I don’t really know I just wanted to bump your post.

Ask NHS is the old name for ASK First

The appointments should all be listed on the main NHS app.

Can you delete some other apps off your phone to free up space?

Do any of the messages asking you to log in have links you can click?

Why do you have so many different health apps? I've never heard of any of those. I don't even have an NHS one. It sounds like your apps are all set up to give you notifications. You can stop these by altering the settings for each app. Maybe you need to take a bit of time and look at each app one by one to decide if you need it or not and delete the ones you don't need? Is there a reason you have so many appointments?

Unhelpful. Presumably because this person is suffering from cancer, seeing as they posted in the cancer topic 🙄

You want a physical calendar. I personally can't rely on my phone or apps to keep track for me. Things like this need streamlined, you will have enough going on as it is without faffing around with apps!
My mum has them in every other room as people from all different cancer departments phone her with apps on the spot so she'll write it down on the one closest to her and when off the phone will copy it onto the others. She has to do it as she says she has 'chemo brain' - described to me as similar to baby brain

No advice, sorry OP but I totally sympathise. My mum has a different health condition but I recognise the problem of so many health apps and how they are often changing something that means your password no longer works!

I don't know how anyone is meant to navigate it all. Especially if ill and not tech savvy.

My hospital hasn't even made it to email yet! Do you have a nurse specialist to call? They might help you to work through what's important.

I'm so sorry about my earlier reply. I didn't notice it was in the cancer topic. I shouldn't reply to posts when I wake in the middle of the night and haven't got my glasses on. Hope you get it sorted out OP.

Do you need to have all these apps? I’m no in Scotland- we have one app which is purely to order repeat prescriptions from GP. We get letters for our appointments which I then pop on my calendar.

yes, they have links, but the links require all sorts of security information, and I just can't open them I try to remember how to open each one, but I can't. I know for example one needs my postcode written xxxx xxx and one needs it written xxxxxxx without the gap, but don't know which is which, and then add the different formats they need date of birth too, and if I get any apps open at all it is purely luck

But it does sound from your post that I should be able to delete Ask NHs - so thanks for that input!

I dont save any passwords on my phone, and i don't know why you are calling me disorganised, when I am struggling to navigate all this - but thanks for your input anway

Because different hospitals and departments insist that they communicate with me in different apps on different days - yes, I could turn off notifications, but then appointments get cancelled because I have not responded, or filled in a questionnaire that is compulsory, or confirmed an appointment, or responded in the appropriate way to a blood test result, or fulfilled some other condition of treatment

It is impossible isn't it! And my phone can't cope, and my brain can't cope! What are you supposed to do? Buy a separate phone for having cancer with?

Christ this is a terrible way to treat patients! What about elderly people who might not even have a smart phone?! And I’m a total technophobe, I can just about use Apple Pay!

Do you have a specialist nurse who can advise on how to streamline it all? And you need to feedback to the various departments how stressful and unhelpful it is to have your appointments managed in this way.

Yes, I have a physical calendar, where I keep a hard copy of information, but a phone call on my physical calendar that should have happened yesterday didn't come, so I think I didn't do something in some app, or something, I've lost the information telling me about it now, or it is in one of the apps I cant open, or its in an app I can open but dont know how to find the information in.

Sympathy to your mum, I am glad I am not the only one really struggling - it makes me feel stupid

No problem! thank you

Thank you - I am glad I am not the only one who thinks this is not fair - I think I am just going to call a taxi and go to the hospital today and see if I can find someone who can go through all this with me and try and streamline it

It doesn't help with the overall probelm but one thing we've started to do is to 'take a photo' of anything in an app that looks important. e.g. I take a photo of Mum's phone screen, using my phone. I then WhatsApp her the photo.

It's saved a few missed appointments because otherwise she would never find the app that has the letter that has the apt details in it again.

Of course if you don't have another phone in the house it's trickier to do this. But thought I'd mention, just in case.

actually, taking screen shots is a good idea

I sympathise OP.

Some apps seem to overlap with others, but won't accept their passwords. There are notifications that are just spam, but I'm never quite sure where they come from and then there's the text messages with appointment letters and links and where you need a password as well, and the online PatientAccess and then my GP's own website.

It's a fucking maze of ridiculousness.

I must apologise, it was the middle of the night and I didn’t read the thread properly. I just thought it was an average person being slightly chaotic. Good luck to you, OP

No problem, thank you

I find just dealing with banking apps/deliveries from fedex/notifications etc a nightmare.

I cannot help, but you have my upmost sympathy, this is a ridiculous situation.

Also, what if you lost the bloody phone?
I had to order a new SIM card yesterday as my phone needs one. To do this I had to give an active mobile number. Luckily I live with DD(15).
The whole app/iphone thing pisses me off. Let alone in a cancer situation.

It makes me feel stupid and out of control and I am only 50.

This sounds absolutely ridiculous and highlights vast inefficiencies and inequalities in the NHS.

Do ask for help and do complain. There are vast amounts of money being spent on digital transformation and they should be consulting users better. What Trust are you under? You could arrange to meet with digital leads if you want to take it further