"genetic screening"

About: Royal Hallamshire Hospital

I attended a genetic counselling appointment at the Gynaecology Clinic. The reception staff were friendly, the waiting room was clean and large enough for all patients awaiting to be seen. I was seen by a consultant and two nurses. The two nurses were friendly and approachable. First of all, the appointment letter did not mention what the appointment was for. I knew my GP wanted to refer me to the Clinic because of the history of cancer in my family but we had that conversation almost half a year ago. Two months ago I spent 3 days in hospital following turning up at the A&E with a horrible pain in my lower abdomen. Pelvic Inflammatory Disease was suspected and I was told my GP would be contacted to refer me for further testing, so I assumed that was the purpose of the appointment at the Clinic. I understand the importance of being able to provide as much information as possible about the family history of cancer when being assessed for genetic risks but I feel was not given the opportunity to prepare. I only know my mother's family history and had I known what the appointment was for, I would have contacted my father's family beforehand to find out more as I know there might have been cases of cancer. I contacted my father's family after the appointment and found out there were in fact 5 additional cases of cancer involving 2 of breast/ovarian cancer (what I am being screened for)! I was not given the opportunity to have this information at hand before the appointment. The interview itself lasted 5-10 minutes and I was allowed to speak for maybe 15% of that time, only to provide short answers. I was asked basic questions such as age, whether I was a smoker, whether my cervical screening was up to date etc. I was briefly asked about my family's history but the interview was so rushed and I was completely unprepared. I tried to revisit and provide more information later but I was cut off by the consultant informing me that most patients' stories don't check out anyway. I was told a written questionnaire would be sent to me at a later date. Overall, I feel disappointed. I will be booking an appointment with a private consultant as I know I shouldn't ignore the risks and I know I can't stay on chemoprevention forever. I was repeatedly warned about the risks of chemoprevention during the appointment but no guidance was provided with regards to minimising the risk/alternatives.

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Response from Deborah Hopkinson, Patient Experience Co-ordinator, Sheffield Teaching Hospitals NHS Foundation Trust

I am sorry to hear about the poor communication that you have encountered and that at the appointment you felt that you did not have adequate opportunity to discuss your case. We would be pleased to hear from you further if you wish the Trust to look into this matter more and respond to you in detail. If you feel that this is appropriate please could you contact one of our Patient Services Team on telephone number 271 2400 or email them at pst@sth.nhs.uk and one of the team will be happy to assist you.

I will be forewarding on your annonymous comments to the service so that they are aware of your dissatisfaction and disappointment. Kind regards.

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