I am not a (patient) number (or statistic) to be recorded and put onto graphs to hospital management.
I've entered a system, which I want to understand, a system of checks and 'service level agreements' and 'deadlines' but the more I investigate, the more questions I ask, the more I feel me becoming that which I don't want to become.
My 'project plan' or 'timeline' so far
Wednesday 1st of February (DAY 1)
9am - Ultrasound appointment at radiology where a 'something' is found on my right kidney
6pm - my GP calls and explains it is a tumour and tells me about the two week window for treatment. A CT scan appointment will be coming through to confirm the ultrasound findings
Thursday 2nd of February (DAY 2)
11am - called with a date for the CT scan, booked 9.40am Sunday 5th of February
Friday 3rd of February (DAY 3)
10.30am - speak to my GP to confirm the details from our call on Wednesday night (I may not have been taking it all in!) Confirms the timings for treatment, it must start at 14 days from diagnosis
Sunday 5th of February (DAY 5)
9.40am - I have CT scan. The Radiologist explained the results would go to the multi disciplinary team or MDT (a group of experts made up of Oncology, Radiology and Eurology) for them to make a decision on whether treatment is needed and if so, what. The next meeting is scheduled for the next day, Monday 6th of February
Tuesday 7th of February (DAY 7)
Called with a consultants appointment which is 9.40 on Friday 10th of February
Friday 10th of February (DAY 10)
I have my appointment. Up to now things have made sense, I can see the next steps clearly from the information I have been given. But now things change.
My consultant, Mr S, explains I have a tumour, which has a 90% chance of being cancer. I will need an operation to remove the kidney. I go into 'ask questions and understand process' mode.
I'm told 'The next steps is for the MDT to meet and agree the exact treatment plan, operation date will be set after that. It will be sometime in the 30 days after that MDT meeting'
But that's ok, the MDT met on Monday didn't they? (DAY 6)
No they didn't
'don't know why you were told that'
'They will be meeting the following week on Friday 17th of February (DAY 17) They meet every Friday afternoon'
My operation date could be anytime between MDT decision date (DAY 17) and 30 days later (DAY 47) which is 17th of March. Thats 47 days from when the tumour was found.
But hold on, I was originally told, 14 days from the 1st of February but that has extended to 47????? What's happened? Why is it 47 days?
Ok, I may have misunderstood my GP and the 14 day deadline, that is quite possible.
And I get that the consultant, MrS has 30 days from MDT decision on what needs to be done (how can you book a slot when you don't know the extent of the surgery?) however I am struggling with the other delay:
The MDT actually meet every Friday afternoon, why isn't my case discussed the day of my appointment, Friday 10th of February? MrS met me in the morning, the team meet in the afternoon, simple surely? The hospital has had my ultrasound and CT scan since the Monday, they knew I was coming in on the Friday, so you'd put me on the MDT meeting, yes?
Which is actually 37 days
It feels like a whole week of wasted time, 7 days of my case being sat on a desk or computer.
But also, the cynical side of me sees this as an 'extra 7' days to meet 'targets'; that I wasn't included on the MDT that day to give extra time, to ensure targets are met.
Don't get me wrong, I am not blaming anyone I have met or will meet as I go through the 'process' or 'project plan' They are doing a difficult job and if they could give me a date the next day they would.
I'm just saying something doesn't feel right, it feels like figures are being manipulated, I've become a number, a patient number, a part of the system. Too much emphasis on the report, the number and the person. The scared person, the woman, the wife, the mother, the daughter, the sister
And its not a good feeling