I was diagnosed with ADHD in April 2025 and in March 2026 I started titration. Medikinet didn’t work for me at all and we started on elvanse but I have secondary stage metastatic breast cancer and have experienced some challenges with my health which have caused interruptions to my titration.
From June to August I had to stop my meds because I had problems with my bloods which may have been due to over-hydrating while on elvanse in the heatwaves in June, but could have been something much more serious. I have only just been able to get back into titration. I was started straight back in at 50mg which gave me worrying diastolic readings so I went down to 40. I don’t know if this was because they didn’t want me to build up again from 20 despite my long break and health complications. They kept mentioning getting me off the books and how titration is only supposed to be 28 days (!!), so I suspect they’re irresponsibly rushing me off.
I got gastroenteritis and just started back on 40mg 5 days ago. I am still having worryingly high BP and not feeling like 40 is working anywhere near as well as 50 did before my summer issues.
Psychiatry UK have told me they are discharging me as my titration period is over and I am happy on 40. I am not. That’s simply not true and I’ve never said that. It isn’t working that well and my diastolic is between 93-103. They made it clear my titration has taken too long and they need me off the books.
What are my rights? Can they do this? I’ve waited 5 years and I am devastated. It specifically says my dose cannot be changed once they discharge me.
I’m also worried that they don’t seem to be monitoring me at all - just asking for BP once a week despite my complex health needs. Do I have any recourse to any form of better help? I’m worried that my health is at risk because of the lack of oversight and engagement from them, I’m on the wrong dose and I have no choice or legal right to protest this. I cannot afford private so I feel lost. I’d be really grateful for any guidance on what my rights/their legal obligations are or signposting to people who may be able to help. Sorry for such a long message! My brain is scrambled as it’s all too much at the moment. Thank you for listening
Hi, I’m so sorry to hear you are going through this. If you haven’t confirmed that you are comfortable being discharged because of health concerns and your safety, your provider and GP should fully consider this if you’re going to shared care.
Private Treatment
If you have gone through a provider privately without NHS involvement, you can make a formal complaint to your provider through their complaints process on their website and request that titration continues until your complaint has been fully considered, along with any other requests based on your concerns. You can also complain to the General Medical Council if you are unhappy with the outcome or how a complaint is handled https://www.gmc-uk.org/
Right to Choose
If through Right to Choose, you can contact your GP to share/ record your concerns and ask for their guidance, as well as complain directly to your RTC If you feel that you are not being heard by the provider, you can also complain to your local Integrated Care Board (ICB) and other avenues listed on the links below.
NICE guidelines
The guidelines are for professionals to maintain best practice and make sure your needs are considered, and you should be involved with discussions about your care. Excerpt on titration guidance:
“titration should be slower and monitoring more frequent where there are other neurodevelopmental, mental health or physical health conditions”.
Link to NICE guidelines for ADHD Diagnosis and Management:
Feel free to ask other questions relating to the above or your original post. Your concerns are valid, and your safety needs to be a top priority in treatment decision making. Hoping for a shift in the process soon where you feel like your concerns have been heard.
Thank you do so much for all your help!!! I’m so very grateful. I have messaged them today and included your info. My note might be a bit emotional but it also has the NICE guidelines etc in which I hope they’ll take seriously. I’ll lodge a formal complaint if they don’t get back to me and follow up with ICB too. I truly appreciate the time you took to help me. Thank you again
