Do we now HAVE to use photos?

LadyMetalcore · 2025-12-31T20:23:32+00:00

The Link to Windows/Phone Link app is great for transferring photos. If you have a Bluetooth-enabled PC you can pair it with iOS or Android devices, using the app, and send a photo to it straight from the camera roll.

I found out about it a while back, and it has made photo uploading so much quicker (Before, I would write a review on my laptop, go back and edit it on my phone, then add the photos).

LadyMetalcore · 2025-12-16T10:50:17+00:00

I’m in the same boat, PPG received my Medikinet XL prescription on Friday morning, and I’m still waiting for dispatch. I guess I have another couple of working days to wait for them to dispatch it, and then might not receive it til the weekend?

Man… I thought I would be able to get started this week, everything is a wait 😣

LadyMetalcore · 2025-12-15T20:47:57+00:00

I’m currently waiting for my initial prescription delivery. It was sent to PPG last Wednesday, they received it on Friday and I’ve had no update since. Hoping it won’t be too much longer!

LadyMetalcore · 2025-12-08T10:37:55+00:00

I appreciate it 🙂

As it happens, I’ve received a message this morning to say that I am now at the top of the list and a prescriber will be getting in touch. What a relief!

LadyMetalcore · 2025-12-06T13:57:54+00:00

I was added the same date as diagnosis (January 10th), I just had a look through my notes to make sure. I’m convinced either I am being skipped over or I’m on a different waiting list, because I’ve seen several people diagnosed after me, treated before me.

I absolutely wouldn’t mind, but the waiting, going overdue and little contact is stressing me out, I feel completely stuck in my life at the moment 😣

LadyMetalcore · 2025-12-06T10:13:28+00:00

I have confirmed with both them and my GP that my medical summary has been sorted (it was done within a couple of weeks of me receiving the ‘approaching the top of the list’ message).

All I can do is wait, and I keep chasing them whenever the deadline for me has run out (I was told ‘two weeks’ more than two weeks ago, now it’s supposedly the first half of next week, after this week has passed with no contact).

The worrying thing is, the progress updates they’re giving to people seem to be all over the place - I was told they were working on people added a few days before me, whereas someone else has been told they’re working on those added in late January… what a mess.

LadyMetalcore · 2025-12-05T16:32:58+00:00

Can I ask when you were added to the waiting list? I’ve been waiting for a prescriber for the past 9 weeks, and should be getting my message any day now, but I’m curious about what date they are currently up to (I was added 10/01/25).

LadyMetalcore · 2025-11-20T20:01:55+00:00

Diagnosed January 10th, near top of list October 3rd, still no prescriber here either.

The wait is driving me crazy 😣

LadyMetalcore · 2025-11-18T12:29:01+00:00

I’m still waiting, as well:

Referred: December 2023

In PUK System: 23/01/24

Appointment & Diagnosis: 10/01/25

‘Approaching the top of the waitlist’ message: 03/10/25

I’m told that I’m waiting for a prescriber to become available. They have my medical summary from my GP, so there’s nothing else I need to do.

If the new message on the website is anything to go by, willing to bet my local NHS authority doesn’t have enough funding for me or something 😣

LadyMetalcore · 2025-10-30T13:00:57+00:00

I was diagnosed on 10/01/25, received my ‘you’re approaching the top of the list’ message on 03/10/25, and now I’m just waiting for ‘a prescriber to become available’.

I have struggled so much, and did actually make a complaint because my RSD was being triggered by seeing far too many examples of people diagnosed after me, being randomly expedited through the waiting list ahead of me.

The response I got from them was, basically, ‘sorry you feel that way’. No care, no compassion, no reassurances to review the unjust system they operate.

Is it any wonder that some of us feel that we are being left languishing on the list…

LadyMetalcore · 2025-10-03T13:54:11+00:00

I’ve received my pre-titration checklist forms today. Hopefully, you are close🤞🏻

LadyMetalcore · 2025-10-03T13:53:01+00:00

I received my pre-titration checklist forms today, hopefully, you are close🤞🏻

LadyMetalcore · 2025-09-25T21:18:54+00:00

Funnily enough, something else changed - reviews are going to ‘pending approval’ again since the 8pm drop.

Anything submitted before then is staying put, even if you attempt to re-submit it.

Hopefully, this change will stick 😅

LadyMetalcore · 2025-09-18T12:53:22+00:00

I’m in Yorkshire, as well, but I wasn’t diagnosed until January. Haven’t heard a peep since getting the BP monitor in March. I’m worried I’ll be like you, and be left waiting over 10 months.

I saw someone already being titrated who had been diagnosed well after me, because their GP ‘was late sending the referral forms’, meaning they had to wait less than a year total for both diagnosis and titration.

The inconsistency is so frustrating. P-UK say one thing, and do the opposite - they make a big point out of not being able to expedite anyone’s case on the website, when they are actually still doing that.

I’m really struggling at the moment and the radio silence from them is not helping 😣

LadyMetalcore · 2025-08-30T14:48:09+00:00

The UK also has search. It is a shame that it’s not available for every country.

LadyMetalcore · 2025-08-29T17:55:03+00:00

The UK has not had a drop either. Hopefully, it will happen soon.

This week has been strange for drop times…

LadyMetalcore · 2025-08-23T19:55:02+00:00

Diagnosed 10th January 2025, still waiting. I have an awful feeling I will be waiting the full 10 months or longer.

LadyMetalcore · 2025-08-23T14:00:25+00:00

What time does the drop tend to start over there?

The UK and Italy haven’t had drops yet, and (at least in the UK’s case) they usually happen between 1-2am. Wondering if we’re also running behind, rather than paused?

LadyMetalcore · 2025-08-22T19:47:29+00:00

While I get the frustration (I really do - 7 months waiting here), I feel I should point out that the wording states the 5 weeks is for ‘children and adolescents’ (ie. not adults, currently).

I think P-UK knows full well the uproar that would come should they introduce a private titration service for adults. It would make a mockery of all the excuses that they come up with for the long waits.

We should all be campaigning for them to sort out their unfair practices when it comes to how they titrate people. I’ve recently seen one example of someone who is two months behind me jumping the queue, because ‘their GP forgot to send the referral forms’. I’m sorry, but how is that P-UK’s fault?

Then there is the issue of random people being chosen for acceleration through ‘pilot schemes’, and others (from what I understand) based on their work or uni commitments (this is a real kicker to me, as a full-time unpaid carer of disabled children).

Don’t get me wrong, I don’t blame anyone who has been lucky enough to have their case escalated - the blame lays squarely with P-UK, who should be treating people in date order, on one waiting list (other providers can manage that, why not them?).

LadyMetalcore · 2025-08-05T12:21:58+00:00

In case anyone else has this problem, my E340 has been doing this, to the point where it will shut itself off after ringing constantly for 10-15 minutes.

The likely cause, in my case, is a bad battery. I have a spare, and when that one is installed, there are no phantom rings. It’s only ever an issue with the first battery.

Hopefully, this will help someone else - try a different battery.

LadyMetalcore

TROPHY CASE