"Lack of information and compassion"

In June I was seen at Ophthalmology in the New Victoria Hospital because my optician noticed some swelling on my optic nerve. After my tests the consultant’s view was that it was probably due to IIH, which I had read about prior to my appointment. I was very upset and started to cry, and while the consultant was kind, he didn’t seem to understand my distress and didn’t give me much information about it other than that he would refer me to neurology for a CT scan of my head. 

I have had my scan now, which was fine, but I subsequently received another letter for an appointment with a neurology consultant at QEUH. I hadn’t been told about this so wasn’t expecting it and it made me very anxious. I repeatedly tried to contact Ophthalmology at New Victoria to get some more information as well as my scan results. The first time I was told by the secretary my message would be passed to the consultant, but I didn’t ever get a call back. The second time I got through to an answering machine so I left a message, but again was never responded to. The third time I was again told by the secretary I couldn’t be given my scan results on the phone but that my message would be passed on and I would receive a call back but again. I have never heard back and have given up trying.

Yesterday I had my appointment with the neurologist and it was a complete waste of time - should have been a phone call which would have saved me the approx £13 I spent travelling there (the location is really inconvenient and public transport links are very poor) and avoided ruining mine and my partner’s afternoon. The neurologist was not really interested in listening to me and barely gave me time to speak or ask questions. He said he wanted me to be seen by their specialist eye clinic to make sure the swelling on my nerve was really IIH and not pseudo swelling, and also said something very worrying about how a diagnosis of IIH would ‘follow me around forever’ without explaining what this meant.

The eye clinic was closed due to the bank holiday so I couldn’t be seen there, and he said he would refer me to be seen in the next couple of weeks. I don’t know why this couldn’t have been ascertained ahead of my appointment, as it would have avoided wasting everyone’s time and causing me a lot of additional stress. So I was in and out in five minutes with no answers and will now have to make yet another expensive and stressful trip to QEUH in the near future.

All of this has left me with huge levels of anxiety about potentially losing my eyesight as well as about a possibly dangerous cause of the swelling, given I have not had any results from the scan. I have not been able to get any reassurance and don’t feel like any of the doctors understand the debilitating stress this is causing me to the point my quality of life is affected. When I have managed to get through to a secretary, they are brusque and unhelpful and make me feel like I am doing something wrong by trying to get basic information about my care. It is especially upsetting to spend weeks waiting and worrying about my appointments only for the outcome to be further uncertainty and no information.