"No surgery for my son, no one is helping"

My son has complex health/developmental needs and in August 2021 it was decided he needed to be tube fed, and straight away an NG tube was passed and a referral for gastrostomy done at the same time in August 2021. We are now nearly in August 2022 and we still have no date for surgery. It took months of me going back and forward between referring doctor in Lanarkshire, gastroenterology doctors in Glasgow and the surgeon’s secretary chasing this referral from October 2021-January 2022 before it got sorted and we had a date to meet with the surgeon in March 2022.

We were told 3 months but probably quicker. We are still here no further forward. My son has significant global developmental delay, is awaiting an autism assessment, has an undiagnosed neurological/genetic condition and has no understanding at all. The mental trauma of having NG tube passed is heart-breaking, for him and for me having to do it. It’s becoming harder each time to pass a new NG tube due to the trauma of having one in for so long. Having three adults pinning down a child while they scream, vomit and thrash around terrified about what’s going to happen shouldn’t be allowed to go on this long.  The long-term impacts mentally on my little boy and us as parents is horrendous.

To not have any surgery date a year from original referral is awful and it feels like my son right from the start has been lost in the system and no one seems to be able to help or get us going in the right direction. I am really saddened at the whole situation, and feel like my son has been extremely let down and isn’t receiving appropriate care.