Patient View

Hello MMum  I haven’t heard of this so thank you! 

I do feel for you, I expect that you have been on edge all afternoon and have probably jumped a mile when your phone rang…as you say, the waiting is the worst. 

I hope that it’s good news when you do ring.

love Jules x

Hi Mmun,

 I have not heard of this ap before thank you for letting us know, I think I might have to look into this as you say the waiting is always the worst for me too, the only thing is we are always waiting for results, scans, bloods and phone calls, I hope you get some good news after this wait.

Sandy x

Just an update.  I still can't get access to this system.  I'm being advised they only allow people on dialysis to have it - a bit different to what the publicly available web page for the system says. 

Then the administrator I was trying to contact has left the job, and there's no replacement.   Start date is not for weeks/months.  

Next  they suggest they can ask a Renal consultant to "adopt" me so I can have access.  I suggest we just use my oncologist rather than Joe Bloggs who I have never met?   

No response for weeks, no call back from the Patient Liaison team who advise "we're not letting you raise a complaint because it's too simple, let's fix it today (June)!!".  Nothing happens.  Deafening silence . . . . 

I go back to my neighbouring region and ask them again.  But now they say it's a data protection rationale why they won't add me.  But they will escalate.    They tell me the new administrator in my home region has started the job so that's a new name to try :-)

Nobody in the NHS here knows anything about the system and I have spoken to quite a few people about it!  I think their claim that they are a uk wide tool available to everyone is maybe a dream.  

1. Hi Mmum, l agree with a lot of the comments. I must admit that l now totally rely on my local GP and The NHS APP, the official on

Hope this helps . I just stopped spreading the searches around. It is so frustrating tho. There seems, at the moment to be in my area a willingness to catch up on scans blood tests etc etc. But can you get the results. Bah humbug.

Love Adrian

Hi Mmum....sorry your waiting.....i was diagnosed 8th sept...Only just got 1st consultant appointment for Nov...so disappointed..Still, hopefully we can move on in our lives once we have had our op? Hoe are you in yourself? L

Hi - I gave up on the app.  I was fighting the system.  Basically Renal won't share their toys.  They need to grow-up!  I tried the complaints system, reason, pleading.  They are just stuck in the dark ages.  "We need to add a renal consultant onto your record" they say and they won't accept my oncologist.  Patient engagement - what's that then?!.  "What if you don't understand a result, you need to have a consultant" they said.  Yeah - my oncologist. 

I'm not having an op - it's already spread to my lungs so too late for that approach.  I'm on immunotherapy and it's doing its thing.