"5 phone calls and a 2-week wait for a simple answer"

I was expecting to receive an appointment for a routine CT scan, before my next oncology appointment. Waiting for appointments to come through the post is on my mind for weeks around the appointment time, as I never quite know when to expect the letter or when the appointment will be.  Knowing that a scan is imminent also brings to mind the what if questions, such as what if something shows up this time and the cancer is active again?  So it's an anxious time.

When the appointment didn't come through I had learned through trial and error to phone x-ray, which I did.  They said that there was no request on the system and advised me to call the breast care nurse.  I don't call her my breast care nurse, as unfortunately I do not feel any sense of a relationship with the team, who can be quite frosty and unhelpful. So I'm now piggy in the middle of a system, wondering if anyone is going to take responsibility of ensuring I get my scan when it's needed and having no-one in the system whom I feel I can talk to about my frustrations and worries. 

I phoned the breast care nurse the same day and left an answerphone message.  They are supposed to return my call within 48 hours but that didn't happen so I phoned them again.  Someone answered my call that time and said they would ask my oncologist to send a request through to x-ray.  

The following week, still no appointment, so I called x-ray again and explained that my oncology appointment was fast approaching and had they received a request yet for a CT scan from my oncologist.  The receptionist (at Victoria hospital, Kirkcaldy) was as helpful as they could be and even offered to check if something had been received through the post, in which case they would let me know.  

I phoned the breast care nurse and left another answerphone message, explaining the situation, and that I was now feeling quite anxious as my oncology appointment was less than 3 weeks away.

The following day I called the breast care nurse again, as I had had no response from them yet, and someone answered the phone.  As I have experienced before, the reception was lacking in warmth and interest. The receptionist said that my oncologist hadn't sent a request through to x-ray as I wasn't due an appointment, and that was it.  No follow-up question, no asking why I thought I was due a scan.  I asked the receptionist if they could ask my oncologist why I wasn't getting a CT scan and they went silent.

A moment later, just as I thought I had been cut off, my lovely oncologist came on the phone, just before the start of their clinic.  My oncologist explained that they thought I knew that my scan appointments were being extended from 4 months to 6 months, and that my December appointment with them was to discuss my latest MRI scan, not my CT scan.  The MRI scheduling isn't right either, as that's scheduled for February...but that's for another story!

I had to make 5 calls to 'strangers' to finally understand why I didn't have an appointment for my CT scan.  I had to be on the ball and assertive.  That's a big ask for many patients who may be too ill, or who lack confidence to ask for what they need. It took 2 weeks to get a resolution. That's two weeks of worry and frustration for me, and 5 calls the NHS had to manage. 

We need the Single Point of Contact to be rolled out to all cancer patients.  How much nicer it would be to call one person, who might even be friendly and helpful, and to be able to trust that they will look into the matter and update me. What a relief! 

Times might be tough, but in my view investing in SPoC for all patients is likely to save funds elsewhere.  In the meantime, perhaps some training in compassion for the breast care nurses at QMH would help them to connect better with their patients.  I hope someone checks why I wasn't informed last week that I didn't need a CT scan - was that a one-off mistake, or is there a glitch in the system that can be sorted so that this doesn't happen to other patients? I felt let down by the breast care support team.