"I have been kept in the dark about my own health"

I’ve been in the system since 14. I’ve seen NHS professionals from CAMHS to adult services. I’ve been on waiting lists for extremely extended periods of time, had calls to say my data has been lost, told I am being referred and then realising months later that no action has been taken.

I had to go private to get help, I’m now in a lot of debt, can’t afford the medication, and STILL have not received help after a shared care protocol was submitted.

I feel I have been kept in the dark about my own health. Time lines are not given, solutions are not provided. My work is being compromised and my life quality has plummeted in recent years.

The most painful part is I found something that works, and now cannot afford the care. The deterioration is intense and impacts relationships, physical health and professional life. Still no action is taken.