Things are hopefully on the move. This is the result of much pushing and shoving. The review of our sons care package - without which we can't plug the gap created last year by CQC changing its rules - has been stalled for over 8 months due to complete inaction by our PCT (Primary Care Trust - local NHS). So we had a meeting with them and insisted they get their finger out - a month ago. The inaction continued - so a week or so ago I planted a small 'embarrassment bomb' with a local watchdog organization and kept ringing them up for 2 days. I now have a named nurse who is due to start his medical assessment late next week. Why do I have to become a troublemaker just to get what is necessary?
On the practical front - our battles with substandard medical equipment continue. The feed pump system he uses (that supplies his nutrition, fluids, medication etc.) has been gradually deteriorating over the last few years. The tubing used to just work, the pumps got serviced every 6 months, the 'peg' (the bit that goes through his stomache wall) and connecting tubes lasted about 3 months and were replaced on a regular cycle.
These days things are a little different. The pumps are no longer serviced - they now wait until they fail and then replace them (the theory is in 24 hours - the reality is they lose your request, and only send a replacement 3 or 4 days later and 4 or 5 increasingly irritated phone calls later). The 'pegs' fail on average after a month or so and the connecting tubes fall apart literally in days sometimes.
These are medical devices. They're supposed to be made to a high standard. They used to be - but not any more. I'm fairly convinced in my mind that the pressure to keep costs down is resulting in the purchase of poorly made equipment and a complete lack of quality control. I don't have the evidence, but the recent Panorama programme on operating theatre equipment would seem to bear this out. If the physical equipment is so substandard, what confidence can I have in the quality of medicines etc.?
We have reported these failures using the NHS's 'yellow card' system (MHRA) but I'm not hopeful. Like CQC these days, it seems more concerned with 'tick box compliance' than actually solving these sort of issues. I can live without an automated acknowledgement that runs to over a page of legalese but says nothing about our actual issue.
Doubtless I'll also be labelled 'difficult' for having the temerity to flag up these failings. Maybe I am - so be it.
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You're not the only family I know who've had a miserable time with really poor service around feeding pump stuff. My authority (central Manchester) was really resistant to switching to the newest Nutricia pump but I've got to say, it's been fantastic - replacement couriered out within hours when a bit got broken (it was my care assistant's fault and all!), spare odds and ends readily available including a shiny new rucksack when a non-essential bit broke on mine. Hopefully you guys might be able to start momentum for a change of supplier, Ludd Junior and all of us who rely on such equipment deserve better than that.
ReplyDeleteThanks for the comment - at least I know it isn't just me being paranoid. The comments on the Nutrica are very helpful - the Clearstar service used to be like this about 10 years ago but has deteriorated gradually and fallen off a cliff in the last year. I'll flag your experiences up our dieticians.
ReplyDeleteThanks.
I think you guys are nearby enough that I could drop my second pump round if you're ever truly desperate - you're supposed to have two if you rely on them but I'd rather take my chances with just the one and know that your son's not going hungry somewhere.
ReplyDeleteEmail me through my Blogger profile if you're ever seriously stuck.
Thanks for the very generous offer - I'm always pleasantly surprised by the kindness of 'strangers'.
ReplyDeleteWe're OK at present as we have x2 pumps (albeit in different locations). This little episode was made especially difficult by the failure of both in quick succession.
Main thing I need to do first is to get the dieticians to acknowledge that there's a problem.