I’m going to write a letter … I’ve started it…Dear Dipstick

Thankyou for organising an appointment for me today. I made sure I travelled from Edinburgh via Cumbria to be here on time.

I didn’t want to cancel as your portal told me if I did I’d be referred back to GP.

The reasons for travelling the breadth of the country are good but that’s my stuff not directly to do with you.

I arrived on time.

Your registrar whose name looked like ‘ YUCK ‘ eventually called my name after over an hour. No apology no interaction just a shift of a head to beckon me over.

The appointment was a disaster.

He started by explaining I had a bit of ureter. On the right. No shit Sherlock. Its a ureteric stump I explained to him.

Then he told me I had only one kidney. I began to lose it.

He told me my bloods and urine tests were normal. I told him they were not. I logged onto the portal myself. I showed him. Told him I needed MSU and bloods.

He asked if I self catheterised, if I’d used the gent protocol ….on it went until I said look I think it’s best if I go. It’d be better if the MDT met.

I gave the MSU to the nurse down the corridor who told me my name was Sara. Fortuitously I literally bumped into Jerome. ( what are the chances?). Jerome quickly realised and muttered that he would not! be nice to me. That would have made me crack completely. He was able to tell said nurse my name, hospital number and date of birth because by then I literally could not speak in case I burst into tears. She wrote it all down on some bit of sandwich wrap. God knows what will happen to the MSU. Me and Sara may get confusing results.

Next to bloods where the screen told me to wait. I waited. And waited and waited ..until I gave up, knocked. The nurse in her cupboard there had her feet up on the desk scrolling on her phone. She said she had called me. I said : but it says ‘please wait’ … she disagreed…

What’s the point? I could not be bothered to argue further.

I started back to the station only to get a number withheld call.

Registrar Yuck.

Where was I? He’d been looking for me.

I’ve literally just left I replied. Dipstick, he said, would like to see you.

Turns out Dipstick was having a break so if I was prepared to wait a long time he’d see me.

I suggested it’d be better to review all bloods MSU and scans. Do an MDT then schedule appointment. Having not seen Dipstick for several years it clearly doesn’t occur to anyone that this is in any way unacceptable. That delayed me further and I just missed the fast train. Of course.

Meanwhile and not unrelated :

Patient advocacy stuff… wired jaw and all…least I can do to raise awareness.

Edinburgh was the BAUN conference. Patients never get invited. But I was invited to join a supplier who looked after me, my colleague patient ambassador. We spoke and explained and tried to spread the word.

Maybe we helped a bit. The atmosphere was excellent. Sir Robert Francis was one of the keynotes: He spoke so eloquently. The highlight for me?

1.Patients’ needs are someone else’s problem.

Yes that’s what it feels like.

2.Patients do know themselves better than anyone

Yes. Complex or not patients actually do know what their symptoms and needs probably are.

3. He urged nurses to speak more loudly

4. He urged managers to encourage a no blame culture as oft quoted the aviation industry.

For me too, as I waited for bloods today…everywhere there are posters …men…prostate…get tested…PSA…blah blah…even David Cameron has jumped on this. My personal thoughts are that if we test all the worried well there is no time to look after the chronic but benign. Just saying.

In other bits I’m gradually picking g up again after the jaw breaking (!) operation. Over the years I have done lots of PPI – that’s patient involvement on clinical trials. Dipstick is on the board of a trial, where I’m supposed to represent patients. His inability to mute nor find a quiet location drives me spare. I’ve done nothing except attend meetings, online, try to make comments which get ignored and oh – I’m unpaid as yet. It’s only been over a year. It’s not about the money. I don’t care about that. It’s about respect .

But Cumbria: an amazing special wedding of my niece. My siblings, my children, my grandchildren all made it to the depths of Cumbria. That, and birth of my grandson, , I’d say are the best things to happen in the last 18 months of lurching through funerals, operations and NHSness.