"twinsAdmitted for three weeks for tests from..."

About: National Hospital for Neurology & Neurosurgery, Queen Square

Was so excited to be travelling to top hospital for skilled tests early this year. On arrival our consultant left the country and only arrived back the days we are leaving! tests were done but we had no-one of expertise to discus some results. Even today 8 months later we do not know what the tests are really showing (abnormal yes). No call back, no letter from consultant...we know results are not 'normal' but have no idea what the implications are. We only got genetic/muscle tests results by plaguing the genetic and neuropathology labs ourselves. consultant away. Got some results in August (when consultant on hols) yet they were completed in June and we were not told! Feel ignored, dumped...not taken seriously. We went to Queens as a centre of excellence we are struggling at home in our country and feel utterly betrayed by Queens Sq. This is not first class expertise in operation (though we still believe the person we saw is an expert) he has not served us well or completely. all he said " but you've received the discharge summary" That was a summary written by registrar, nothing more. We wanted full explanation! We tried speaking to CEO no success. PALS have tried very hard but has not got the consultant to communicate any better. A call from consultant last week was - unhelpful as he seemed 'fed up' almost annoyed, he thought the discharge summary was 'enough'; it wasn't! Now because of our failed visit to Queens our government won't fund us to go somewhere else. In other words our consultant in Queens has destroyed our only avenue to find out what's wrong with us. Disgraceful. Only he can sort out this mess and he seems unwilling. I am depressed, worried and almost suicidal over this absolute chaos of a visit to Queens. I just cannot believe the utter mess that's resulted. We fought for our government to send us to Queens Sq ...big mistake. I am totally distraught as is my twin. We had such high hopes. We are devastated...truly devastated. Finally we have sent by recorded delivery a letter to consultant Begging him to persuade our Government E112 scheme to send us to Newcastle! You let us down. I was a nurse in Great Ormond street...but the hospital I thought was 'world renowned' is not! I would never recommend it for our suspected condition.. never. You have caused utter despair, utter fear utter suicidal feelings. How can this be 'expert' care!?

Story from NHS Choices

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