We had a genetics referral for DD done back in September 2023 (age four, diagnosed GDD and ASD, has significant developmental delays in everything except gross motor skills). Haven’t heard anything since and every time I follow up the waiting time seems to double. They’ve now told me she’s unlikely to even be triaged until September 2024. She’s not even registered on their main system yet as a patient - her referral literally hasn’t been looked at in the over seven months since it was sent.
I think the maximum wait time is meant to be 18 weeks for routine, non-urgent conditions, which would have been January. It mentions here for example that “You have the legal right to ask for your appointment to be moved to a different provider if you're likely to wait longer than the maximum waiting time specified for your treatment.” https://www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/
I wanted to ask for a referral to the next trust over, which is meant to have a much shorter wait time, but both they and the GP have told me the referral is unlikely to be accepted because it’s done by catchment area. 🤷🏽♀️
Is the whole patient choice thing just a lie? Is there anything we can do? Or do we have to just lump it with a wait time of over a year just to be triaged?
We’re really keen to have another child but want to know more about genetic risk first. I’m in my mid-late 30s, husband in his 40s, we’re not getting any younger. And I know there will be lots more long waits for appointments, tests and results even once she is eventually triaged.