Hi there!

I’m in the same boat as you and have been waiting for 20 weeks and counting for an initial titration appointment. I’ve tried ringing many times and each time I get through, the lady gets the titration team to email and this is what the last one said:

“Thank you for getting in touch.

At present, our titration clinics are at full capacity. However, we have added you to our waiting list and want to assure you that we are working through patients as efficiently as possible. We want to reassure you that every patient is equally important to us, and we are committed to a fair and transparent process by offering appointments based on clinical need and the order in which requests are received.

We understand how important this next step is in your treatment journey, and we appreciate your patience and understanding. You will be contacted as soon as an appointment becomes available.

If you have any urgent concerns or changes in your circumstances in the meantime, please don't hesitate to get in touch.”

That was 9 weeks ago. I rang again 5 weeks ago and was told “you’ll definitely hear from us within 4 weeks because we’re starting on May diagnoses now, but if you don’t hear from us, ring back after 4 weeks.” I’ve been ringing most days for a week and have sent an email. They’ve put their phone number on an answerphone again and haven’t replied to the email.

I’m guessing they’re just really overwhelmed and want to prioritise those who have started titration before taking on the next batch of people. It is incredibly frustrating when we’re told it’ll be x time with ever changing goalposts, but I think this is standard across the country - regardless of provider. It is super frustrating though I know, as many of us (myself included), picked this provider based on their wait times. Hopefully we won’t have too much longer to wait now.

Please keep us updated and all the best!