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The test took over 3 years to come back

Posted By sagittamp36

"The test took over 3 years to come back"

About: Ninewells Hospital / Clinical Genetics

(as a service user),

I was told my test for my genetics would take 4 months. It was for my eyes and sent to a lab in Aberdeen. The test took over 3 years to come back. I have autism and anxiety and have panicked constantly about what the results would say. I put off going to university for 2 years because I wanted to know what type it was, and if I would have enough eyesight left for the course to be worth it. This whole experience has left me disheartened and on edge for a long time. When the results came, it’s just a letter, so I can’t ask any questions. It states an appointment would be made, but I feel it would be better if this came hand in hand with the letter so I know when my questions will be answered. The staff at Ninewells were always helpful and very apologetic, but something so important taking so long to hear about has really affected me and my family. There were also very limited updates in between; it often took me phoning to find out what was happening. Overall, this is one of the most negative experiences I’ve ever had with the NHS.

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Responses

Response from Kirsten Henderson, Genetic Counsellor, Clinical Genetics, NHS Tayside 3 months ago
Kirsten Henderson
Genetic Counsellor, Clinical Genetics,
NHS Tayside

Submitted on 22/01/2025 at 11:58
Published on Care Opinion at 14:11

Thank you for flagging up this concern, it is really helpful for us to be able to share how these delays impact on the individual patient.

Sadly there have been significant challenges in delivering this particular gene panel due to a combination of issues. This is a test that has only been available in Scotland since June 2021 and was previously offered by a Laboratory in England who had similar issues with delivery of this very specialised, complex test.

There has been a significant increase in the number of tests that Genetic Laboratories are able to offer in the last 10 yrs and while that growth does mean an increased number of genetic diagnoses are being made for patients, it has not been matched with an increase in staffing in these services or indeed funding. This is currently under review by Scottish Government who I am sure would be well placed to hear your concerns.

We hope that we can answer your questions at the appointment which has been scheduled for you and that you can appreciate the challenging circumstances that we are trying to deliver services in.

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