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My son's treatment

Posted By Carnj33

"My son's treatment"

About: Ottery St Mary Hospital / Urology

(as a parent/guardian),

My son is in his early 20s and is on the autistic spectrum. He attended a clinic accompanied by his father. He had a diagnostic flexible cystoscopy. Three females and one male attended. No reasonable accommodations were made for him. His permission was not sought for the number of clinicians in attendance, nor was an explanation given. He was uncomfortable during the procedure, which a trainee carried out. He asked if he could leave the room as soon as it was over. In considerable pain, he ran to the toilets. This was in complete contrast to the letter that we received afterwards. Stating that he was asymptomatic for the procedure and that the procedure was uncomplicated and tolerated well, it wasn't.

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Responses

Response from Marie Hunkin, Operations Manager (Eastern Services), Urology and Preparation for Surgery and e-surgery care group (Eastern Services), Royal Devon University Healthcare NHS Foundation Trust last month
Marie Hunkin
Operations Manager (Eastern Services), Urology and Preparation for Surgery and e-surgery care group (Eastern Services),
Royal Devon University Healthcare NHS Foundation Trust

Submitted on 09/09/2025 at 16:06
Published on Care Opinion at 16:06

Dear Carnj33

Firstly please accept my apologies that your son did not have a good experience at Ottery St Mary for his Urology procedure.

I am keen to investigate this further and would be grateful if you could contact me on 01392 404507 or email ann.hunkin@nhs.net to discuss it further.

Best wishes,

Marie Hunkin

Operations Manager, Urology and Urodynamics

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by Carnj33 (a parent/guardian)

This was, I understand, investigated further. Unfortunately, I've received no update.

Response from Marie Hunkin, Operations Manager (Eastern Services), Urology and Preparation for Surgery and e-surgery care group (Eastern Services), Royal Devon University Healthcare NHS Foundation Trust yesterday
Marie Hunkin
Operations Manager (Eastern Services), Urology and Preparation for Surgery and e-surgery care group (Eastern Services),
Royal Devon University Healthcare NHS Foundation Trust

Submitted on 20/10/2025 at 15:02
Published on Care Opinion at 15:02

Dear Carnj33

Apologies for the delay in getting back to you, I have been chasing for a response from the team who were present at the time of your son's procedure.

I will send you an update via email.

Best wishes,

Marie Hunkin

Operations Manager, Urology & Urodynamics

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by Carnj33 (a parent/guardian)

Thank you for your response. However, my son's urology is still under no overall control. It is being dealt with by creating silows. I paid for a private consultation last month because, after three years, he still has no diagnosis or treatment plan. He is still being asked to keep a diary when it was made very clear from the outset that, because of his autism, this would be a problem. I also have autism, and a reasonable accommodation was agreed very early on that there was a workaround and neither of us needed to keep a diary. It was advised that the USS completed at Nightingale Hospital is not visible on the system. What does this mean for my son's treatment? The private consultant I saw recommended that he should be referred Bristol, if his recommended blood tests were negative. They were, but he has still not been referred, and it looks to me that no one in Exeter is taking overall responsibility for my son.

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