Diluting the solution to Isaac’s needs?

A few weeks ago I tweeted about the position Isaac found himself in regarding his prescribed omeprazole in solution.  This is what happened:

We had a letter (not a discussion) from our GP saying that they had been talking to their ‘pharmaceutical advisor’ who had said that Isaac’s Omeprazole in solution is an expensive item and that he could be moved onto dispersible tablets instead. Isaac had been on omeprazole since he was around a year old ; his reflux is bad for a period after most feeds – he is having an investigation under anaesthetic next week – and at no point had cost been an issue.  As a PEG fed child it was initially prescribed in solution and this has always been so  for 3 years.  300ml bottle ordered every 2.5 weeks or so. Isaac has never suffered any side effects and it eases the acid levels and does its job.  We did, at one point due to a problem with production at the special order pharmacy the dispensing pharmacy uses, end up with tablet form for a few days about a year ago.  Frankly, no matter how you grind it (I even purchased a pill grinder) and how long you leave it in water, it will not fully dissolve.  It was leaving residue at the connection between PEG and enteral feeding tube and blocked the fine bore element of the drug port on the tube. When Isaac’s mum Lynsey emailed the GP with concern about this he replied ‘it’s fine’.  We emailed again with a stronger worded concern and he said he would speak to the pharma advisor about it, which he did and the outcome was that they wanted to get a Gastro consultant’s view.  This took 2 weeks (during which time Isaac was issued another prescription, but for a smaller volume) and came back that giving omeprazole in solution is always preferable because of the frequency of blocked feed tubes.  In the meantime I had spoken with a nurse who works on a Paediatric MAU ward who said that she has seen a few tubes blocked by medication each year over the last 10 years or so and that she saw it as ‘par for the course’.

So, problem solved (a solution found?!) and life would be back to normal for Isaac without omeprazole-gate rumbling on.  Not quite the final chapter in the story however.

Last week Lynsey took Isaac’s prescription to Tesco pharmacy.  At this point, as i’ve already been complimentary in other blogs about the helpful staff at Tesco Chorley pharmacy I should point out that I’m not on a club card based commission plan with them – if only! The pharmacist was a new pharmacist who had never dispensed Isaac’s omeprazole previously and he spotted an issue.  The pharmacist asked if we knew why Isaac was on such a low strength solution ; 20mg in 20ml, and that surely it would make more sense for Isaac to have less volume and have 20mg in 5ml.  The obvious benefits being Isaac having less fluid – always a bonus with his reflux problems – and also that the prescription would last a LOT longer each time it was ordered.  The pharmacist asked if we would speak to the GP to ask about this issue, so an email was sent and the new strength ordered.  Problem solved.

However, theres some things for reflection I think :

1.       What was the true reason for the initial decision to change Isaacs prescription to tablet form?  Is the pharmaceutical advisor for the GP there to achieve good partnership care as a triumvirate with the patient or are they there to maximise efficiency and save money? I’m not cynical by nature, nor am I in any way averse to protecting the NHS from incurring unnecessary costs.  Isaac’s care to date must be well into the hundreds of thousands of pounds, Isaac owes his life to the NHS.  I do however get cynical when Isaac isn’t considered in decision making, and we receive a letter with an outcome presented as a fait-accompli.  Did the process start with ‘these are Isaac’s needs, lets work forwards to possible solutions’ or did it start with the output of ‘look at the cost of this child’s medication, lets work backwards’? Both are starting points but each will set you on a path to either a needs let or a resource led outcome.  The pharmacist’s first words were about Isaac having to tolerate less volume, it shows where his thought process starts.

2.   Who should spot opportunities for improvement?  For 3 years the repeat prescription email was going through every 3 weeks, dozens of opportunities for SOMEONE to think ‘hmm, I wonder?’ but it takes a pragmatic pharmacist who hadn’t had any dealings with Isaac previously to start a change.  I don’t attribute blame to a GP necessarily but systemically there appears something upside down there.

3.  As usual the best outcomes don’t come ‘naturally’ and without the need to advocate for Isaac.  We need to turn this ship around so that other people involved in Isaac’s care are some of his biggest advocates ; as a family we know zero about pharmacology or drugs.  We only knew something may be duff with the original plan because of experience.  If we’d accepted the outcome and Isaac had unfortunately proceeded  to have a blocked PEG (which he may, or may not have eventually had, who knows) and he’d had to attend hospital then who would have ever learnt anything? Would anyone reflect on decisions made earlier in his care or would it be seen as something that just happens? There needs to be a joined up process to learn from.

Anyways, sorry if it’s been a bit of an epic ‘blow by blow’ story, only sharing it because I hope some good practice can come out of it.  Right, i’m off to buy some lunch (at Morrisons, just so I can’t be accused of bias!).

3 thoughts on “Diluting the solution to Isaac’s needs?

  1. Reblogged this on Amélie~in~charge and commented:
    Following two nissen fundoplications for reflux disease and now our 2nd operation has failed as we contemplate a 3rd nissen we opted back to jejunostomy feeding.

    We have been on omeprazole 9 years including lanzoprazole we dilute in sodium bicarbonate and the tube rarely blocks. We have now been prescribed the elixir. It was initially declined because it’s “too expensive” but when we converted back to jejunostomy I argued the cost and health implications of radiographic exposure to Amélie each time the tube blocks, as the replacement needs replacing under X-ray. Only then 9 years on could we have the elixir.

    My question: why does the NHS not look at the overall costs of replacing blocked tubes, radiography and consultant clinic time verses the costs of elixir ? They never look at the bigger picture only localised costs … So much waste and unnecessary pain and procedures to our children.

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