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Nineteen months on a tier three waiting list

Started 6 May 2025 · 14 replies · 140 hearts · read 1.7k times

OssieWolverhampton, UK · 6 May 2025
about a year ago

Nineteen months on a tier three waiting list — putting it in its own thread so it does not get lost in the check-in.

Anyone else here in my part of the world? I would like to compare notes.

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

What I would find most useful is not advice. It is somebody describing what their version of this was, and how long it went on for.

What I keep tripping on is not the physical bit. It is the not knowing whether what I am experiencing is normal, and having nobody to ask who is not either selling something or frightened for me.

I will report back either way, because I have been helped by other people's follow-ups more than by their questions.

47

OsgarKillarney, IE
#1

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

8

TorinBelfast, NI
#2

the opening post — yes, and the bit that took me longest to accept was the next part.

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

12

WellsChester, UK
#3

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.

4

AdaFacilitatorManchester, UK
#4

Two things, both boring. First, none of us can tell you what to take. Second, the conversation you want to have is with your prescriber, and we can help you write it down.

18

BelCroydon, UK
#5

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

12

EdwynNewcastle, UK
#6

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

11

BramSheffield, UK
#7

Reading the reply above, I recognised more of that than I expected to.

Practical, boring answer: write the three questions down before you go in. I have never once remembered them otherwise.

11me too 8

TamzinPoole, UK
#8

I did exactly the same and felt terrible about it. You have not done anything wrong.

9

PeronelCanterbury, UK
#9

I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.

7

IvorLlanelli, UK
#10

No advice, just recognition. That sounds exhausting and I am sorry you are in it.

5

BramwellNottingham, UK
#11

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?

8

BlueStroud, UK
#12

Reading the reply above, I recognised more of that than I expected to.

My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.

9

AdaFacilitatorManchester, UK
#13

I want to slow this down a little. There are four different answers flying about and they are all somebody's real experience, which makes them true and not necessarily relevant to the person who asked.

19me too 6

BronwenBarry, UK
#14

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

7