The summer spent visiting my parents in a nursing home has been grim. Continues to be grim with all the terribleness of end of life care. More acronyms EOL, JIC, syringe drivers….it goes on it is awful. Their story is not mine to tell in this blog which is meant to be a record of my own medical story.

One or two things though are important to remember ahead. . The nursing home has been told by the local health authority now called ICB whatever that bloody means They only allow patients to have 3 yes 3 continence pads per day. Which of any of us only goes to the loo three times a day? I will try my best to highlight somehow somewhere, I thought the EICC guidance we authored was supposed to sort it. This, as we all suspect must be happening across the UK.

Then Daughter 1 is still struggling to recover after March surgery. Again not my story for here. But it again is a cause for concern. For some reason the hospital here use what they call ‘urgent care centre’ for out of hours GP appointments. Great. But they refuse to send msu samples for culture. They just do a dipstick. OK dipsticks maybe give a hint of infection. Sure. BUT..3 days of nitro do not cure any infection. Then the infection has not gone. So the GP does another dipstick. Then issue Co-amoxiclav because the symptoms have not gone away of course. Then, the GP issues Ciprofloxacin. In three weeks of antibiotics… no cultures have been done. The sensitivities and possible treatment is buggered. Patient is feeling ill and anxious. Then, to make things even worse the patient is told she must have kidney stones. Why? Why say that. On what evidence? The patient feeling dreadful and with no idea what to do asks me if there is something anything I can do. Of course I cannot but it so happens that I am fortunate enough to be able to ask Jerome for advice. As ever he gives it. Thus we found ourselves in London A and E all day. The first doctor is not only rude, obstructive and dismissive she refuses to even speak to Jerome. ‘ because my phone doesn’t work’. She insists that as the dipstick is clear there is nothing else to be done. The dipstick will be clear I say, because, D1 is on antibiotics. Dipsticks do not diagnose anything…I hear myself say…trying not to yell. Eventually I give in and tell Jerome… of course he helps, gets involved and sorts. What a considerable relief. The rest of the day is ultrasound scans, blood tests, CT scan and patients. Patients everywhere sitting in numbered seats. The nurses in a sort of dystopian mega nightmare just interact with their computer screens. They yell ‘ I ve lost my patient’ ‘ The patient is in the wrong chair’ ‘ Where’s the bladder scanner’ ‘The bloods are lost’ . It is absolute mayhem. The obedient patients just sort of sit there staring into space.

I should say that D1 actually feels a lot better today. Anxiety levels lowered, the stones scare has been assuaged. Be ok. Give it time. At the back of her mind is …please do not let me end up like my mum. What ever I, her mother, try to say does not make that any easier.

As for me…eating antibiotics any antibiotics at all to keep the bugs at bay. No rhyme no reason, hoping. My GP surgery has gone to e consult. Ie don’t speak to a patient. I have queried how we tricky ones will do our msu samples now. Ah was the reply – we do not want urine any more. Great. The private way of sending msu to London is also buggered as in not working either. so I just can’t send any msu. Who cares? I will just make it up.

Our GP surgery organised my annual asthma review. Bet they get paid for that. A phone call. Some poor nurse going through her questionnaire. It ended badly…I do not think I am qualified to review you…you are too complicated. I need to call a dr. No problem I say. But maybe could you possibly read your screen. Find the clinic letter from BARTs who treat me for severe asthma …It’ll explain everything. Later that day I get a text.

“

Dear Mrs E

I have spoken with the duty doctor today, and given that you are already under St Barts care, we are unable to review your inhalers without any input from St Barts. We have asked them to clarify if they want you to have a rescue pack included as they have not stated this in their letter. Once we have a reply, we will let you know asap.

“

Waste of time or what? would it be just a bit sensible to look on the notes first?

Then some other GP person rang and said I had a phone appointment. Great I said.

What for? She asked.

I do not know I said.

Then after a pause she said …oh we are reviewing your medications…why are you on these things….

I explained and I suggested the other clinic letters from all the other poor doctors who look after me. ..Oh great she said. /thats all sorted then..

This is nuts.

But the good stories are amazing. In the nursing home the staff are so patient, caring, there are not many of them, they work 12 hour shifts. But still they smile and reassure and calm. Some days are more bonkers than others the breakfast and lunch begins to merge as they attempt to get everyone washed and dressed and changed. Other days the entertainments lady I call Shloer. On account of the fact she pours that drink, pretending it’s champagne. Her Monday sing – a – long is let’s say…non combatative as in hard work. My Mum too unconscious and Dad is too busy thinking he’s on a posting abroad. I was trying to join a meeting via the flaky WiFi, (trying to work and visit has its moments) and overheard Shloer trying to drum up support. ….You may begin to guess what happened next?

There I found myself, in the patient sitting room, Shloer and me trotting out the words and vague movements to Dad’s Army tunes , the semi comatose patients seemed to smile, a bit…or was I just imagining it! Worth a try in the monstrous bubble of awfulness we are in. Next week I will attempt to get Dad in there as long as his ‘work abroad’ allows him time off.

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