My long-term experience with the UCLH Autonomic Unit has been deeply distressing, and I feel obligated to warn other patients especially those with severe autonomic disorders.I have lived with a rare, degenerative autonomic neurological disease since 1986. I suffered cardiac arrest during a tilt-table test, have severe noradrenaline deficiency, and rely on medications like Droxidopa, which UCLH has in stock but has repeatedly refused to prescribe, despite it being the only effective treatment for my condition. Instead, I have had to import my own medication for decades.Under Prof. Christopher Mathias, my diagnosis was mishandled. When errors became apparent, the response I experienced was not transparency but avoidance and obstruction. After this, I found myself unable to access other specialists, repeatedly redirected to doctors I did not choose, including Dr Iodice, and prevented from seeing anyone outside the same group. Referrals were blocked, rerouted, or rejected without explanation. Over time, this created the clear impression of a coordinated effort to control my case, leaving me with no freedom to seek appropriate care.The issues with my medical records have been even more alarming. Essential test results have been missing, altered, or unreadable. Recent MRI images were provided as cropped, low-quality screenshots rather than proper films or full scans. Some documents I know existed have disappeared entirely. In two cases, I received images marked “Taken From Disk,” raising serious concerns about how my files were handled and why the original scans were withheld. This pattern has continued for years.Because of these repeated actions denied treatment, blocked referrals, missing files, altered documents, and lack of transparency I have come to believe there is a pattern of obstruction centred around the past involvement of Prof. Mathias and those connected to him. From my side as a patient, it feels like a long-standing conspiracy to prevent any external specialist from reviewing the mistakes that were made.Even when I escalated these issues, including serious data concerns and failures in care, the Ombudsman did not address the misconduct I raised. This left me without answers, without treatment, and without accountability.My condition has worsened needlessly because access to essential treatment and honest medical documentation has been repeatedly delayed or denied. What I have experienced at UCLH has caused profound harm, both medically and psychologically.
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