I had a brilliant phone appointment with Consultant Awesome Infectious Diseases . She’s amazing. Upshot is she agrees 1. Need to do something while we awaitNHS elective surgery for new SNS. 2. Need to sort grumbling infection. Urgent. 3. Agrees with Jerome a bladder Teflon type non stick application called cystistat might be good idea as a holding pattern.

As the week wore on it was evident she was pushing all the buttons to make NHS allow cystistat. But the NHS is in paralysis 

Jerome suggested I speak to Dipstick privately. To ask his opinion on cystistat or it’s derivatives.. This way Dipstick would have to give me time and would have to update himself on ( lackof )progress. 

So made an appointment. Thursday 11:30. 

Thursday 8:00 his office sent an invoice for immediate payment. £195. I ignored it. 

Thursday 10:00 am his office rang me. Please would I pay. Sorry I’m driving was my reply. Because I was. To do an emergency parent visit. 

I deliberately did not pay. But at 1045. Ie early ! my phone rang. At my parents. It was Dippy. EARLY.

10 minutes of consultation. £19.50perminute.

This is the upshot.  the decision to make. 

1. Wait for NHS to approve cystistat 

2. Agree to Dip prescription private. 6 doses. One per week. £120 a shot. £720 plus £19.50 per minute Dipphone. £3k ish

3. Agree to Dip doing the instils in clinic. Cost ? £19.50 per minute. £1170 perhour x 6 = £7020 plus 6×130 £8k ish

4. Do instils myself at home £120 x 6 = £720 plus weekly phone call to Dip 6 x £195 = £1170 £2k ish

5. Usecheaper instil which Dip has to concoct himself. He can do the instil. 6 x 19.50 per minute plus instil cost . £9k?

6. Buy 2 instils. Administer it myself at home. Hopefully the next 4 come from NHS. Otherwise buy 4 more through Dip. £240 plus Weekly Dips £1170 plus maybe £480

What would you do ? 

Meanwhile broken foot is – broken 

Bladder is – raging 

Kidney is – painful

Daughter 2 is exhausted tearful not well and her very own AandE department have not looked after her. That’s is UNACCEPTABLE 

ZOOMS were tense this week. Zoom Fatigue maybe is a condition? What really pisses me off is that some angry patients are so angry. They have been listened to. Their individual stories are dreadful. BUT. We’ve made an audacious recommendation for change. Furthermore we have implemented the change. Our work is complete. A patient decision aid to help support and advise. Specialist centres have been established. The normal text heavy NHS leaflet has been overturned by an amazing graphic designer who just so happens to be an old colleague of mine. But still they moan. Still they need their day in the court of NICE or niece as one mispronounces it. I have not coped well. I find myself irritated crazily determined to persuade them to shut the f up. My psychological advantage is that one of the surgeons, whom I know well, is texting throughout. Her views my views. They are mirrored. So it’s not just me. Mind you her coffee mug is totally outrageous.

Meanwhile hospital has sent response to my letter of December 2020. Amongst other things they apologise for the time spent all night on a trolley in AandE despite Dip having rung ahead. They apologised unreservedly for every mishap. They stated this all fell beneath the expected standards. This particularly applied to the poor HCA who fell asleep after she was supposed to keep an eye on a poor old lady. Given that I had been asked to ring my bell if the old lady tried to move. I had been grateful for the HCA. until she snored!

With the pointlessly banal “this is not the standard we expect”.
When the opposite is ludicrous, there is no point making a comment. “We encourage all our staff to have a snooze during their shift”