"Waiting times, communication & anxiety"

First off this is not a critique off any of the NHS staff I have come into contact with.  I was diagnosed with a kidney stone at the QEUH in July during tests it was discovered I had a 13mm “lesion” on my kidney also. After finding out that this hospital could not remove my kidney stone I was told I’d have a stent fitted and be called back for a further appointment to remove the stone.  In excruciating pain I challenged this and was moved to GRI where my stone was removed.

Prior to being moved I was informed I’d receive inpatient investigative tests (contrast CT scan) and diagnosis of the lesion whilst in hospital.   This did not happen. After being moved to the GRI I was advised my scan would be an outpatient appointment.  At my request I subsequently received an appointment for an MRI scan rather than CT, this was for a date in August.  The staff at the GRI MRI suite were outstanding and I thank them. I called my consultants secretary after 3 weeks, then 6, then 9 no results. Over 11 weeks later (only a couple of weeks ago) I was told I had a kidney tumour.  The consultant who delivered the news was a stone specialist and was limited as to what he could tell me, however he was as informative as possible and took time to answer my questions, I was to have a biopsy of the tumour to determine what it was. 

 I informed  my case would be passed to the renal surgical team where I would be discussed that Wednesday or Thursday at an MDT meeting.  A few days ago I received a jiffy envelope in the post it had an appointment letter for the end of November & a specimen bottle.  No instructions as to what to do or indeed what the appointment was for, my GP who I visited on the day the envelope arrived suggested it is a consultation.   So I’m left almost 21 weeks since this began with a specimen bottle posted in a Jiffy bag with an appointment at the end of this month.  I tweeted NHSGGC, Health minister & the First Minister only a limited response from NHSGGC saying they’d get back to me, nothing from the anyone else.  I can’t quite believe the time that has passed since this all began. My life’s been on pause.

 When I was in hospital the nurse asked me “what mattered to me” nobody is asking me that now, how can it be acceptable for someone to be kept waiting for this length of time, I’m writing this not just for me but for the others also who perhaps don’t wish to speak up. I don’t even have any contact details to find out more about my appointment at the end of the Month