Hurrah another week of hospitals and trains and in between some wonderful Christmas bits.

A quick run through ..you know the background.

Monday took Dad to hospital for his eyes. Milton Keynes eye clinic was ok once past the Rottweiler at the desk , the one stop clinic was efficient, explaining everything. NHS sometimes really works. My only problem was mum, who insisted on coming too and in her own way trying to make sure she too knew all the details of the procedures. Fair enough, but morphine, age and assertiveness conspires to create tension. Not least when I find myself treating them both like children.

“Right, I cannot push two wheelchairs, one of you will have to walk” and I left them to argue it out while I parked the car!

Tuesday emergency repair of two front teeth….costly but necessary for the next bit of max fax treatment! All I need for Christmas is my two front teeth.

Wednesday I caught the 7 am train to London for the next biologic injection at Barts. It takes two hours to get there. Two hours back. The injection takes 30 seconds. No waiting. No queuing. Last month I asked if the home kit was available anytime soon. They said then, it would be and asked (again) how far away I live. Ah. Priority case. This week. I asked again. Oh yes I was told. It is ready. But we have to train you. But not today. We will do that next time. Argh., This is ridiculous. They are supposed to do observations before and after but never do. I reckon I can do it easily myself.

Wednesday night, back to Luton and Dunstable hospital Maxillofacial clinic for the next bit of jaw wiring ( good job I had gained two front teeth!) Mysteriously the trolley I have seen every month outside the scanner- in- a caravan thing, is now under the caravan. Looking rather scarily like a body bag.

Thursday, I was up at crack of dawn to get mum to Northampton for her eye treatment booked for 8am. That also went smoothly. It is a private clinic which the NHS has bought in services for the clearing of lists thereof. Mum was ok and got her home only to discover she’d got some serious issues in her leg. That meant calling in the hospice team in Milton Keynes. NHS at its best and they sped over.

Friday I snuck into eldest grandson’s nativity. Only two guests officially allowed. But using all the charm I could muster I sauntered in and charmed my way past the ferocious head teacher. Oh wow was it worth it. Totally wonderful . I loved every minute. Those little children singing their hearts out….he’s got a house full….no room in the inn…Good Luck with that…It’s a miracle….It’s so exciting …. I’m on the edge of my seat.

Saturday I trained down to London again. Long story short the usually efficient and tried and tested means of getting a private urine test, had failed…3 times. The lab suddenly seems unable to test for what we call ‘mixed growth’ . This has been a problem with the GP too. They will now sometimes, depending on who is on the duty rota agree to request an extended test. The arguing with my GP is exhausting. Hence private lab has in the past been so much the preferred option. Indeed Jerome has access to the results and can forward, advise and plan accordingly. This time the £50-a-pot lab, insist on a fresh sample, no courier, special form, special code…Jerome’s very awesome secretary has patiently guided me through it.

I know journalist, Rory Cellan-Jones has oft repeated, if you give us the information we need, the data, the procedures. We the patients, families and our providers really do know best and we could actually be helpful. The NHS app clunky as it is, can be a step forward. But looking at mine, I only see countless GP interactions. I can see Barts, appointments but no other hospital has apparently signed up. I cannot see scans or blood tests. Lots of urine though! Usually it says …’no further action’. Not helpful. I just wonder if patient power could get this NHS app improved? I guess you’ll say..’good luck with that’

Happy Christmas and Good Luck with 2024.