I’m sure it’s not only the nhs does this kind of thing… its big companies/corporations…. its about customer related experience…its about communication.
We”ll go back to yesterday during my first chemo session I had it all explained to me about how my lymphoma was a 1e and the ‘e’ means its not usually found where it has been ie totally outside a lymphnode… the chemo I’m having does going round the blood very well but doesn’t make the leap over into the nervous system too well… so if my cancer comes back its more likely to come back in my brain/nervous system…which is a bit of a bugger in so many ways.
Now I wasn’t sure how well I take these things on board…what with the overload bombardment and the morphine and the whole new experience… but i think the NHS deals with this well by making sure its then all explained again before they proceed (probably after the first talk they tick a box that says ‘patient looks blank’)… and actually on the repeat performance today i pretty much knew wat she was talking about so had taken almost all of it in at some level.
The one thing I was clear on, and stated clearly, yesterday when i signed the consent was that I didn’t want anything near the site of my past back problems… it must be on my medical records somewhere as I had an MRIscan and needed checking out.
ok…nurse says…i’ll pass on those concerns
and i signed the form…
now thats where the breakdown in communication was.
I came away from that thinking they’d check on my medical records as to where my exisitng spinal weakness is and then we’d all meet up in the morning to do some spinal chemo in a different lumbar joint in my spine… or if it had to be where the injury already is then i’d be hoping to move on to some serious breakdown of statistics and risks as this in a preventitive procedure versus an already known weak point in my body that causes me months at a time of excrutiating pain and takes me from standing and talking normally to blacked out on the floor from an inoccuous movement such as twisting too fast… breathing wrong… bending slightly.
I think the nurse went away with my consent hearing ‘the patient has some concerns’ but as no-one else has any we’ll do it anyway.
If I’d known this yesterday I’d have gone to my GP checked myself where in my lumbar region was a no-no for me and gone back to the hospital armed with a simple piece of information today that would have saved a lot of grief.
So me and my daughter turn up this morning at the hospital.
No they hadn’t checked my records, but i had given consent…and its a very safe procedure and wouldn’t cause me any problems… its a very shiny thin needle.
Thats exactly what they said to me 19 years ago when i had my epidural for childbirth… and strangely thats when my back problems started… that have been ongoing for 19 years. [There has been research done that shows correlation between backpain and sticking needles in. But i can’t recall it as its all research i did 18 years or so ago.]
We need to ring my GP I said… its a simple check and would make me a lot happier, in fact without this information I can’t go ahead.
The hospital want to stick their nice shiny harmless needle in L3-L4 and L4 rings a bell in my memory.
Ok… can you stick it in anywhere else I ask.
Ok… my problem, as irrational as it seems, is in only one place..one lumbar joint. If its one of the one you want to go in…we can just go in the other and I will be a very happy patient.
I have no problems with the procedure (even though from experience i believe it has in the past caused me back problems)… I’m happy with the procedure somewhere there isn’t already a problem… thats based on my own risk assesment, my own irrationality… and seems perfectly logical and reasonable to me as it still gives you a whole lumbar joint to shoot into.
The trouble with Doctors is they are people of pure science… but not always au fait with psychological neurosis (which wikpedia states as a bona fide risk to be aware of when threatening a lumbar puncture), nor understanding patients sometimes have concerns that go a bit beyond ‘i’m a bit worried about this’.
As my consultant pointed out later in the morning we are at the start of along relationship… and hopefully over time she’ll learn I tend to go with the flow of most things stoically and unflinchingly… but when i say no it’s usally for a bloody good (if sometimes not wholey rational reason). I’m not a whinger or a wuss and I don’t tend to make a fuss. And i too want a good working relationship with my healthcare staff.
We all spent the next hour or so trying to chase my GP.. doctor on call… and getting Jane on the job of chasing them too.
The doctor on call came back with the name of the medical database she can access from the surgery and could see no reason the hospital couldn’t access it from the hospital as she was out on call and didn’t have access.
Followed moments later by my GP who scrolled through my notes told me L4 -L5 bad and he’s also faxed it through to my consultants secretary at the hospital.
Good… now we know where to shoot it and keep my happy at the same time.
But the Consultants are starting their rounds – can I come back at 5.
Home for scrambled egg toasted sandwich and some morphine.
An episode of Walking Dead.
Back to hospital for 5.
Consultant comes back at 5.30 and we can’t get hold of the specially made up expensive medicine as its now locked up for the night.
We can’t use it tomorrow as no appointments available and it expires Saturday.
At least next time we have the information to hand that would have made today a much easier day had there not been the initial communication breakdown over how concerns from a patients perspective need to be taken seriously.
As Jane said when I got home; this happens in all large organsisations… a clients belief in ‘how things are’ can often be as strong or stronger as any other component in the decision making process and for a process to move forward it needs to be treated with the same respect.
But they’ll get round to doing it to correspond with my next cycle of chemo…and when they do the lumbar puncture i’ll remind them to turn it all the way up to 11. *
In other news I feel remarkably fine today.
*medical/nerd reference supplied by my daughter