"Neurosurgery Queens Hospital"

After a fairly long period of being passed from pillar to post in my own local hospital (Colchester) I was referred for a second opinion from a surgeon at Queens.   I was seen very quickly and had the diagnosis of a brain malformation confirmed but also a new diagnosis of hydrocephalus which had previously gone unnoticed.   The surgeon I saw instantly inspired my confidence and he and his secretary worked really hard and kept in regular communication regarding my operation date, even calling me on holiday to offer me a cancellation that had become available.

My pre-op experience was great, the theatre staff did a fab job of reassuring me even when the Stealth machines needed for my operation decided not to cooperate following a routine service!   Unfortunately my inpatient stay was not as good.   I had thought I was very fortunate to have been given my own room but in hindsight I think it actually added to my feeling terrified and alone.   I was very aware of from conversations I could overhear on the doctors and nurses station that there were some very poorly people on the ward, much poorlier than me, and so I didn't want to make a fuss but on one night I just sat an sobbed in my room because I was so scared and lonely.

It didn't help that my family were travelling a distance but the fact that there was no patient tv and that I wasn't up to reading meant that the nights were physically very painful and emotionally very long and lonely.   One of the night nurses on duty was an absolute gem and if it hadn't been for her kindness it really would have been horrific but in some ways her kindness amplified the fact that other nurses at times could be abrupt and seem uncaring.

I don't blame the staff at all, I come from a family of nurses and I know the pressure they are under but I do think sometimes they need to be reminded that patients undergoing 'brain surgery' are often terrified and don't understand what is happening to them before and after surgery.   I didn't know the difference between normal post-operative pain and a complication and so a little time and reassurance would have made a big difference to me.

 My surgeon is an absolute god in my eyes but again I received no pre-operative information and was told that there was none available but five minutes on the internet put me in touch with a charity supporting my condition and the brain and spine foundation and a wealth of information and a helpline.   Just a signpost to this information would have been helpful.   I know there is a fine line between patients knowing enough and too much but for a professional like myself, my instinct is to want to know about my condition and to manage it myself so that I only need to consult when most needed.   I can see how dealing with life and death matters on a daily basis can desensitise people sometimes but this can make all the difference for a patient.   I have very respect for our nurses and doctors and count myself as very lucky to have an NHS but just a few little things like this could make it even better.