"Feeling forgotten about"

My son was seen by the Gastroenterology network clinic joint between Glasgow and Lanarkshire in August 2021, for his bowel issues. This was after I had asked for a referral to a GI Dr in Glasgow as I wasn’t happy with the GI doctor in Lanarkshire. My son has significant complex needs and we needed more help than we were getting.

At this appointment it was decided my son needed a feeding tube and a  referral for a surgical feeding tube was made going forward.  Once this was established, we could look at his bowel problems.

In October 2021 I spoke personally with a doctor from Glasgow on the phone regarding my son’s surgery and also about his bowels and was assured they would come and see him on the ward when we had his surgery. Expecting this to be soon we waited patiently.  Unfortunately the surgery took some time and while waiting my son had a referral back to the doctor in GI in Glasgow by his neurologist. By Feb 2022 we had heard nothing.

In May 2022 neurology asked again for a GI opinion - many months have gone by where we have heard nothing. I’ve been told today after phoning a letter was supposed to be sent back to neurology but as far as I and neurology are aware this was never received.

In September 2022 our paediatrician from Lanarkshire again wrote and asked for a  GI opinion for my son. My son has an undiagnosed neurological/genetic condition, a chromosome translocation, hypotonia, hypermobility, macrocephaly, dysphagia, is tube fed, awaiting autism diagnosis, global developmental delay.  He is generally quite complex. At birth he passed a meconium plug and had bilious vomiting and has then had problems with his bowels ever since. We have done disimpaction regimes, we have tried every medication that Lanarkshire GI and paediatrics felt suitable – and he is still having significant issues. Hence why a more specialist opinion has been sought more than once.

As a parent I am so disappointed at what a fight it seems to be to get a doctor who has seen my son before and who told me she would see him again to actually do that. My son can’t keep going, every single day for 3 and a half years with bowel issues, its so unfair. I feel like my son yet again is forgotten about and doesn’t really matter