"My son not getting the support he deserves"

Almost seven years ago I took my son to our GP to get the process started for diagnosis. After lengthy discussions and interviews with his school, community paediatrician, child psychologist and finally a professor, it was decided that my son should be referred to neurodevelopmental services for assessment. That was in July 2022. I found a letter last year with the number of the professor my son was under, I contacted their secretary to see if I could chase up my son’s case. They assured me he was still on the waiting list, and that they were working through a backlog of covid cases. Fast forward to 2024, still no contact from this service, I decided to reach out to neurodevelopmental services for an update. 

I was totally shocked, saddened, and surprised to learn that my son has been removed from the waiting list through no fault of his own. A clerical error causing correspondence from the service to go to an old address, that we haven’t lived at for over 12yrs. Three letters have been sent to this old address, and because of no response, my son has been removed from the waiting list. I cannot understand how this could happen as my son started school, started the process with our GP, child physiologist visited our home, and the professor that made the referral all whilst at our current address. 

I cannot understand how it is acceptable for a child to be removed from a waiting list with no conversation of consent by a parent or a GP. This process has been wrong and unreliable, resulting in my son being denied the support he deserves. 

Although the administrator I spoke to was helpful, it does not change the fact my son has been sorely let down by the system designed to help him. This is so frustrating and traumatic for our family. 7yrs we have been advocating and fighting for our son’s right to access the correct services and we are no further forward.

I’m so heartbroken that my son has been treated this way, without a conversation ever taking place. Your child doesn’t outgrow neurological issues, so should never be removed for a service that is critical for quality of life. I feel so let down and disheartened. We will probably go back to the bottom of a pile of paperwork, while my son continues to struggle on a daily basis.