"Impossible to deal with"

About: Queen's Medical Centre

We were referred here from our local hospital at the beginning of the year due to my 15 year old daughters loss of vision. During the consultation, we were promptly dend more more tests and transferred from neuro-opthamology to neurology. At this stage we were impressed. Sadly that was not to last. After being advised that my daughter would need genetic testing and the process would take some time (and being called in for a series of evoked potentials over 2 days), we were told that she may have Dominant Optic Atrophy. Being a former nurse, I asked if she may have LHON but my suggestion was dismissed out of hand. Hearing nothing for several months (whilst my child tried to cope with increasing sight loss and the knowledge that she may go blind), I phoned the consultants secretary. I spoke to a colleague who agreed to forward a series of letters which should have been copied in to us, so we at least knew the situation as it stood then. Not wishing to wait, we visited our GP who read their copies of the letters which stated my daughter was now being investigated for LHON and would be reviewed in August. Today alone I have been on the phone for over 3 hours trying to see when her appointment will be so we can book our family holiday. If my child is going blind, I would rather like to be able to take her away before she can no longer see where she is going! Noone ever answers the phone. All we have been advised is that genetic testing takes a long time. Having consulted with the LHON society, the Royal Marsden Eye hospital and our local HO, we have now been told that they take a few weeks, not the months that QMC are claiming. All have advised us that we should never have been kept waiting this long under any circumstances. Meanwhile, we are trying to cope with our distraught child, who is terrified every day that she will go blind, with no information, care or support. We feel abandoned and treated with contempt by this department. Why can noone tell me when her next appointment is? Utterly bewildered.

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Response from Queen's Medical Centre

Thank you for taking the time to leave this feedback, especially at what must be a difficult and emotional time for you and your family. I’m sorry you’ve been having such difficultly getting in touch about your daughter’s appointment and appreciate how frustrating this must be. This is certainly not the experience we want for our patients and their families. If you need assistance with changing or chasing appointments you can contact our PALS service (0800 183 0204, pals@nuh.nhs.uk). However, if you would like to get in touch with me directly please email susan.arnold@nuh.nhs.uk or call 0115 9249924 ext. 67579. Kind regards, Sue Arnold. Matron, Neurology.

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