Well a couple of weeks have flown by.

Barcelona was fantastic- surreal bumping into clinicians I’ve known for years – to see them in Barcelona. I was so well looked after. Heard some fantastic presentations, phage and endo stand out. Our bit went really well thanks to Prof Laura. My only complaint was the behaviour of delegates. Wandering around, interrupting, chatting, scraping lunch plates whilst presenters presented. Prof says the Chair in each room should police it. I agree.

I returned home to takeover the support and care of Daughter 1 who is in and out of hospital due to seizures and other neurology stuff. Taking her boys to and from school is the bestest of times. Then little O got tonsillitis , but their amazing GP saw us immediately. Twice. Drugs dispensed on site. Advice and support offered. Needless to say lots of ice cream and ‘Dengineers’ on my iPad made for a nice slow week. Daughter2 ankle fixed at last after five cancelled surgery dates.

This week however I’ve raged and ranted and even cried. A rare event. I usually see the funny side. Cutting a long story short after a disastrous telephone appointment with someone from Dipstick’s clinic I was advised me to complain. In summary here is my complaint

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To: PALS
Subject: Concerns About MRI Refusal and Ongoing Delay in Urological Care

• Recently spoke with someone from the FFR department who told me I couldn’t have an MRI due to my Nevro Spinal Stimulator and Sacral Nerve Stimulator.
• This is incorrect — I’ve had MRI scans at UCLH before without issue.
• Clinical notes confirm MRI is possible with protocol adjustments:
• MRI was first requested in 2023 to investigate recurring ureteric stump pain and infections that affect my remaining kidney.
• I felt the call showed a lack of awareness of my full clinical history and led to further delay in care.
• I’m very concerned about the dismissive tone and lack of continuity in treatment advice.

Nothing will happen. However Jerome has spoken to me – of course tears did flow , don’t be nice to me. It sets me off. He will try to knock heads together. But to end on a humorous note. …After helping my brother, I made a dash for the train. This morning. I changed shirt and shorts by my car I drove past my friend Jan’s house. I was puzzled to see her sitting on her wall. Forlorn. It turned out she’d locked herself out having been to her own NHS Land appointment.Quick thinking she jumped in my car. We legged it to my house. Grabbed a ladder. Drove back and broke in via the back door.Unbelievably I got a train, spoke to Jerome from the relative cool of St Pancras, posted a sample into the lab and made it to spinal stim appointment.That Stim appointment was full of laughter and more tears. They too have now raised a formal complaint about the MRI story. The Nevro rep made a point of saying OMG I really wanted to meet you. She too has escalated the complaints. Meanwhile we giggled our way through not least about the Baron looking distinctly like Jesus at Galilee. and they paid me such a compliment. Thank you they said to ME! we’ve never laughed so much. Good job you were the last patient.Train home was horrible. 33’ only 4 coaches. Overcrowding. I sat on the floor.

So good we can laugh. As for tears – Tomorrow is another day.

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