I asked a while ago why NHS communication was still done using paper. I've got some more questions, because I'm that kind of girl and because I'm a service user and I happen to think service users are good places to start when you want to find the holes in a service, something Sarah Lay identified beautifully when she became Citizen Sarah.
So. Without going into too much detail, I'm now seeing one specialist in Burnley and one in Blackburn about the same problem. A third specialist was involved for a while, did the best they could to fix the problem and then discharged me, which now means my file with East Lancs Hospital Trust now has 2.5 years of contributions from my GP practice in Accrington, a specialist in Blackburn and one in Burnley. That's a lot of miles, though not as many as perhaps it would be in Cornwall or the Highlands. But the issues are the same no matter where you might live.
I noticed when visiting the nurse recently in Accrington (yes I know this is getting ludicrous but I'm not making this up, I sorely wish I was), that she had my notes on screen, and a scan of a letter sent from one of the specialists in Burnley. So, she was viewing an electronic scan of paper. So I assume what has happened is that the surgery, which is controlled by a different Trust to the Hospital, has gone digital - when I joined 2.5 years ago there was a wait as they loaded up the previous notes - but the Hospital has not. And I'm a bit confused. I know Trusts are seperate entities from each other, but surely this must be happening all around the country. And am I the only person who sees something a little bit wrong with the equivalent of a network engineer being less digitally enabled than the 1st line helpdesk technician?
How long does it take each specialist to wade through the notes the other specialist has added? I can tell you, because I've sat next to them while they've attempted to catch up, because I see someone different every single time I attend one Department in particular. 5 minutes. There's no summary, no description of each document, no keyword attribution to index by, no tag cloud to click on to ensure she sees only the notes from her own Department and not the ones from the Blackburn side or Accrington. She has to flip pages, scan read, try and work out if it's relevant and then flip another page. Is this efficient? Good use of the time of someone for whom 5 minutes in monetary terms is problem 6 times mine? No. I don't think it is.
Then there's the issue of transport. I've got one file which was being batted about between two Departmens within the same hospital. Now I've got one file being batted about between two different Departments, across two towns, never mind two sites. And there's no digital connection between the two, so one assumes they've being driven across. Well I'm so glad I'm contributing to a carbon footprint I've no control over. No really. And what happens if it doesn't turn up, gets missed or gets lost? Because the more something is moved and across greater distances, the more likely this is to happen, we all know that. Do I have to come back because my notes aren't there?
All this frustrates and worries me. I know there have been behemoth projects to try and fix this, I know the issues with costs. But we've got to fix this because frankly, I cannot be the only person seeing all this happening and wondering which century she is in. There's issues with storage as mentioned before - as my notes now wing their way back and forth across the Pennines, one assumes they live somewhere inbetween appointments - where is that, how much does it cost to rent, how many hundreds of square metres does it take to store them all and how much do we pay people to administer them, archive them, retrieve them and drive them around?
My care hasn't so far suffered for these logistical nightmares, but sooner or later there is going to be an issue because it's inevitable. Apart from anything else, there's going to need to be another file and what on earth happens then? One part arrives and gets seperated from the other, never to be seen together again?
It's inefficient, carbon creating, mind boggling, ridiculously unintregrated system design. If the government want to make a fundamental change to the way the NHS operates, they'd do well to sit up and take notice of the digital implications of the future. I am absolutely aware of the security, insurance and personal implications of my health data being electronic, probably more than most. But I think I'm finally at the point where I am boggling so much at the ridiculousness of this, getting so cross at having to sit and wait again as yet another person tries to read fast, completely misses the salient points and has to be informed by the patient what exactly the problem is and what it isn't, that I just don't care any more. There has got to be a solution. I don't care if I can't see it, I don't care if I can't log into a portal and read my notes, I don't care if it sits on a locked network like Gov Connect or GSI, I don't care if it does get hacked and distributed all over the net for all to see.
I care about the people who are not as switched on as me who are sitting next to specialists trying to skim read 30 pages of documents who aren't compos mentis enough to correct the specialist when they get it wrong in their haste to deal with the issue. I care about the specialists who seem to be doing more reading than fixing. I care about carbon footprints and things going missing, blown away in the wind. I care about joining dots and linking data, joined up thinking, tagging and indexing, descriptions and comments.
As an addendum to this, I'd like to say that 'No decision about the patient without the patient' is something neither my GP's, or any of the specialists I have seen need to be told and that I am in the hands of people who treat me as a human being, talk to me almost as an equal, listen to me, take on board my suggestions and generally are absolutely amazing. They're just being crippled a little by inadequately designed legacy systems which need updating and fast. These amazing people need to be enabled, not disabled - they want to change the world. They need the tools. Their intelligence and skills are in vastly different places to ours, so we need to help them. They could do better. So much better.