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TO: Charlotte Nemo, Medical-Supplies-Company
FROM: Kara
SUBJECT: Very Important Medication for Grenouille
DATE: 11 June, 2014

Dear Charlotte

Here is the timeline of events from my perspective:

Sunday: Discover device for administering Grenouille’s Very Important Medication is empty.  Go to get new vial & find that there are none.  Unfortunately, another carer must have changed the vial last time and thrown the box away, or I would have called a fortnight ago.  Phone your Medical-Supplies-Company, which is responsible for managing the supply of, and for delivering, this medication.  Speak to helpline worker.  Told that there is no valid prescription and that nothing can be done as it is Sunday.

Ask to speak to manager.  Speak to Matthew, who confirms that M-S-C has allowed prescription to go out of date and that even if it had not, there are no pharmacists available to dispense it at the weekend.  Explain to him how important VIM is, as G is also on Life Supporting Medication, so abrupt withdrawal of VIM is likely to cause problems with the LSM regime.  Matthew says he will send e-mail to pharmacist straight away, for attention first thing on Monday (8 a.m.).  My understanding is that he is asking the pharmacist to request immediate faxed prescription from GP so that the delivery will come out on Monday.  Matthew says he will not be in until 11 a.m. on Monday (fair enough).  Ask him to ensure that I am called on my mobile as soon as the delivery slot is arranged as I will need to make arrangements for someone to be at home to receive the delivery.  Am under the distinct impression that Matthew has undertaken to do this.

Call G’s specialist nurse and the on-call specialism registrar at the Children’s Hospital for advice on altering LSM doses.  There is no set empirical method for doing this, it will involve trial and error and a greatly increased level of (invasive)  monitoring – tests 2-hourly, day and night.

 Go short of sleep to ensure necessary overnight testing is done.

Monday:  Send G to school with revised care plan.  Speak to transport and school support teams to ensure that they understand the changes to LSM doses and testing, the reasons for the changes, and what to do if test readings are abnormal.  Go to the LDS conference.  Arrive unavoidably late and keep having to try to call M-S-C, so cannot fully participate.
No call from M-S-C received by lunchtime.  Having problems calling the M-S-C helpline from my mobile.  At my request, Eldest phones the helpline several times to try to find out what is happening.  Eldest cannot get a comprehensible answer out of anybody.  When I get home, it is to find that despite the increased testing, G has suffered an adverse health event, entirely attributable to difficulties with rebalancing LSM in the absence of VIM.
I finally receive call in late afternoon from Matthew.  Told that as the prescription was not returned by 4pm, which is when the pharmacists leave, it won’t be coming out until Tuesday.  Am given walk-through of convoluted process.  Frankly, could not care less.  Your process is your problem, I am interested in outcome, which is that G has suffered through being deprived of treatment.
I ask why non-receipt of prescription was not chased up, am told that’s the pharmacist’s responsibility. Matthew had sent e-mail on Sunday to be with pharmacist at 8 a.m Monday.  Agree that I knew Matthew wasn’t in until 11 am on Monday, but why did he not then check up, as promised?  Apparently he had a two-hour meeting first thing.  That takes us up to 1pm, why didn’t he get on to it then?  He had to meet with his own team.
NOT GOOD ENOUGH.  As important as meetings may be, they are of microscopic significance compared with doing the job of getting urgent meds out.  If this were a question of customer service, it would be bad enough, but actually, it’s a matter of PATIENT CARE and therefore is worse than abysmal.
Tell him to call me with a delivery slot when one is arranged, put phone down.  Subsequently receive self-justifying (and slightly patronising-in-tone) expectations-management voicemail from Matthew, explaining again that process is complicated.

 By now it is after 5.30 pm.  Phone GP surgery to find out why they failed to return prescription in good time.  Surgery admin staff can find no record of prescription request.  Suggest I call again in the morning when the repeat-prescription-processing staff will be back in.

Go short of sleep to ensure necessary overnight testing is done.

Tuesday:  Call GP surgery first thing (8 a.m.).  Still no record of VIM prescription request.  Speak to repeat prescription manager, who assures me (and I have no reason to disbelieve her) that surgery has not received a VIM prescription request since April.  Tells me that she will take on the responsibility of finding out what needs to be done, and making sure it is done.  Send G to school with revised, revised care plan etc.  Leave for work.
Receive phone call from Charlotte while driving back from my work appointment, she agrees to call me later.  Charlotte calls after 4.30 pm & we discuss matter.  Charlotte offers apologies and says she wants fully to investigate the errors.  I agree to send this e-mail as my contribution to the investigation.

VIM delivery arrives about 7pm.  Credit where it is due, thank you to whoever thought to include standard quantities of accessories without my needing to ask for them.    However,  to avoid overnight problems, G takes VIM in morning, so needs to stay on the revised LSM regime for one more night.

 Go short of sleep to ensure necessary overnight testing is done.

 Wednesday: Administer normal VIM dose and return to normal LSM and test regimes.

Questions I would like answered:

  • WHY wasn’t a repeat prescription requested from the GP in a timely manner?
  • WHY was the urgent request not followed up on Monday by Matthew?
  • WHY did the pharmacist make no request to the GP on Monday?
  • WHY was I given the false impression that the hold-up on Monday was the GP’s surgery’s fault?
  • WHY was Charlotte the first person to offer a genuine apology, i.e. acknowledge that M-S-C had got things wrong, AND make sure they were put right a.s.a.p?
  • HOW will you ensure that this doesn’t happen again?
  • WHAT will you do to make sure that this type of incident doesn’t happen to anyone else?