Where were we?
I'd taken my first dose of Zanubrutinib (Brukinsa) in the form of four 80mg capsules and needed to prepare for a follow up telephone appointment on day 14 and a face to face to Derriford on day 28.
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Happy days - Telegram Sam II and I back in 2007
©Harveywetdog |
For the day 14 appointment I needed a blood test, and the consultant assured me she had specified this on the new system (EPIC) the last time we had met. From my reading of the consultation summary I could see she had - the question was would my GP surgery be able to respond to it?
Trying the direct approach I 'phoned the surgery and asked. The response was a pretty clear "the computer says no" although there was some mention of labels being required if a conventional blood test form wasn't forthcoming. I fed this intelligence back to Derriford and was told that they could see that EPIC at Derriford wasn't communicating with whatever system they use at the surgery and the best that they could do was put some labels in the post.
Of course you don't spend 50 years in the ESI without knowing the importance of having a contingency plan in place. In this case my contingency was a blood test form which I had over from a previous trip to Derriford. As nothing had arrived by the time the appointment came round I made sure the form specified the tests that were required and set off to my GP.
The appointment passed off successfully. I explained my predicament to the phlebotomist and she took the trouble to show me what the labels they expected to see looked like. She went on to say how pleased she was that Derriford were now part of EPIC; no suggestion that the surgery wouldn't be able to communicate with them! Presumably they are able to communicate with Barnstaple, so I don't understand why they can't communicate with Derriford.
As you will see below I'm having to work round this problem at present, but one thing you'll have noticed if you've studied NHS IT Systems (or even used the NHS 'phone App) is that there are a plethora of suppliers all providing services to different trusts and surgeries so it is no wonder that they are not able to communicate with one another. What this means for the security of our information as it is spread across this plethora of suppliers is anyone's guess.
Ironically, after I'd walked back from my blood test appointment, the labels arrived in the post. But all I'd been sent was A4 copies of the labels, and not the labels themselves. The computer continued to say no.
Knowing that I'd need another blood test in two weeks time (which included a bank holiday) and that I'd used up my contingency blood test form I realised that a change of tack was required. I think I'd mentioned that I'd been able to use a walk in service at Derriford on a previous visit and I decided that that was my best bet this time.
(I should have mentioned that paper blood test forms are no longer considered legal tender at Derriford and that they refuse to issue them; I'm sure they must have have a contingency stock somewhere for when the system comes crashing around their ears (damn those pesky Russian/Iranian hackers) but they weren't prepared to use one for me).
The telephone consultation passed without too much fuss. My levels all seemed satisfactory and so it was steady as she goes. At my consultation I asked for the blood test to be specified at Derriford and asked if I could pick up my next batch of drugs at the Derriford pharmacy on the same day (to avoid the trip to Barnstaple once the drugs had made it there). I was told that the consultant needed to see me before they could issue the prescription to the pharmacy, hence I could be in for a long wait while the pharmacy acted on the prescription. In spite of this warning that was the option I went for.
A week later and we're at day 21 and I still feel fine. I haven't been able to see my blood test results from day 12 yet (Barnstaple insist on leaving it two weeks before they make the results available to the patient although they are immediately available to clinical staff across Devon. This time delay varies from hospital to hospital, and is just another vagary of our fragmented NHS system.
(Slight aside - I asked AI for a word to describe the NHS and it offered Balkanised Fragmented - here's why I chose Fragmented.)
Yes, you are exactly right. "Balkanised" is a direct reference to the Balkan States of Southeast Europe.
The term comes from the history of the Balkan Peninsula, which was repeatedly broken up into smaller, mutually hostile states during the 19th and 20th centuries (most notably during the collapse of the Ottoman Empire and later the breakup of Yugoslavia). In politics and business, it became a metaphor for any large system that splits into smaller, uncooperative factions.
Since it carries a heavy connotation of hostility and conflict, fragmented is a much safer, clearer, and more professional word to use for the NHS.
Why "Fragmented" Works Perfectly for the NHS
- It implies a broken whole: It directly highlights the contrast between the ideal of "One NHS" and the reality of disconnected parts.
- It fits administrative realities: It perfectly describes how patient data, funding, and care pathways are split across different trusts and integrated care boards (ICBs) without smooth links between them.
- It is universally understood: Unlike "balkanised," it requires no historical background to make your point.
But I digress. When the consultation summary popped up on My Care I was delighted to find that according to the system my drugs are prescribed and ready for my collection. I have tried to 'phone the Boots Pharmacy at Derriford to confirm that the drugs are actually there for me to collect but they seem to have difficulty answering the 'phone.
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The Zanubrutinib squirrel
©Harveywetdog |
I have made sure my blood test is ready on the system for my visit (this seems to be one area that has improved with EPIC as we now have an e-mail address to use to request blood tests).
What a carry on; as I said before I'd hate to be ill and having to deal with the NHS. But the good news is that my body seems to have accepted the drugs without any side effects. We just have to hope now that they start to work on reducing the symptoms - we wait and see.
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©Harveywetdog/Author - David Robinson CEng FIET
David spent approaching 50 years in Her Majesty's Electricity Supply Industry before retiring
He was part of the highly successful design team on the Sizewell B Nuclear Power Station Project before spending 25 years producing safety cases to keep our aging AGR fleet generating for the good of the nation
He is responsible for the Harveywetdog YouTube Channel which he maintains as an outlet for his creative talents
David is now receiving 2L leukaemia treatment but absolutely refuses to be a victim
All views are of course his own but might be influenced by the medication he's taking
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