That is my scream of frustration at the NHS. I have splurged many such screams over the years, too countless to mention.
Today's farce :
I have had a really nasty chest infection. I also have osteoporosis and have managed to pop/snap/crack a rib coughing. It's the third time in 2 months that it's happened.
I also have a crohn's flare and my hospital consultant in Cambridge wants to start me on the chemo-style shots again.
Before I can start the treatment for my crohn's (priority No1), Any infection must be eliminated and there needs to be a reason I'm getting all this pain in my chest. This must be coordinated here, through my GP.
This is where "integrated care" comes in.
So, GP faithfully writes an X-Ray request that says "Chest infection, check before commencing Humira"
I know that osteoporosis fractures are very difficult to see on an X-Ray and ask the radiographer to make a note on my notes that these must be eliminated too. (Consultant specifically asked me to tell them this.)
Radiographer says it's not on the form.
I say I know, but if not checked now, I'll just be back for more radiation, which is to be avoided in someone like me as much as possible.
Radiographer pats me on the head, throws me a dog biscuit and tells me GP knows best.
I say that, no, my Consultant knows best and would it be possible to speak to someone in charge.
No, it isn't possible, now be a good girl and if there's any problem the radiographer will write to the GP, who will write to my consultant who will write back to my GP........
I explain that the Consultant stressed I must explain that the Humira is very urgent and if it would just be possible to speak to someone in charge, it might save lots of time and money.....
Radiographer is blushing and awkward - we have reached an impasse!
So this is what will now happen. A Consultant radiographer will get a heap of X-Rays tonight, glance at them, see I have no chest infection and write to my GP.
Addenbrookes will ask whether there were any fractures - the radiographer will say "I wasn't asked to check to fractures....."
And all because I'm the patient and couldn't possibly know anything about my own care.
In a few more weeks, I will have to have some other kind of test to get to the bottom of the pain and meanwhile my crohn's will get worse. If it gets too much worse for too long, I will grow another blockage and end up costing the NHS tens of thousands in in-patient stays and surgery to sort it out. All because I can't be trusted to tell an X-Ray department to simply write on the X-Ray notes - "Patient also has osteoporosis and fractures should be eliminated."
Now, as you know, I'm no fan of the coalition, but they do talk an awful lot about integrated care. If they could truly improve the system so that patient's weren't treated like a slightly slow relative you'd rather ignore, then I feel I could forgive them rather more of the disasters they are brewing.
If anything else ever goes wrong with my useless body (which it does with boring frequency) it is like trying to herd treacle to get anyone to understand that the two things have to be dealt with together, not as isolated events.
Last year, I ended up with 4 abscesses on my teeth because of the Humira (immuno-suppressants). Because of my health complications, no-one would take them out at a dental surgery, so I had to wait 5 MONTHS with raging pain and infection before they could be taken out in the hospital and I could start again on the crohn's treatment. Why 5 months? Because no matter what any of my doctors said, the maxillo-facial surgeons at he hospital just could not understand that the procedure was "urgent" not "routine". The crohn's made it urgent, but without integrated care this mattered not. The whole palava gave me a massive seizure and meant that by the time the teeth were out I had another blockage and....you guessed it.... needed expensive bowel surgery.
People like me, with serious, long term conditions are one of the largest costs to the NHS. Acknowledging that and prioritising integration of care could save billions. It could also stop me combusting one day from sheer frustration.
Bring it on condems! If you manage this one thing at least, you will have improved long term patient care immeasurably.