"Getting a supply of oral syringes for my son's meds"

About: Queen Margaret Hospital Royal Hospital for Sick Children (Edinburgh)

(as a carer),

I have a story to tell about supply of oral syringes.

My 20 year old son has a rare genetic disorder, he has a range of support needs, including having profound and multiple learning disabilities, complex medical needs, hypotonia, double incontinence and being registered blind. He cannot read, write, talk or use a communication aid. He requires adult help in every area of his life.

He also became epileptic when he was 8. Thankfully his medication has worked very well for him and his epilepsy is well controlled.

His medication is liquid Epilim and his current dose is 12ml twice a day. The cup supplied by the manufacturer is a really dreadful thing to measure with, and my son struggles to drink liquid from a container, but manages well taking it from a teaspoon.

My background is in science, so I also like using syringes to measure amounts accurately. It is said from studies that trying to measure 5ml on a 5ml spoon can result in givng an amount anywhere from 3mls (where you're frightened to overfill the spoon and think you're close enough) up to 9mls where you think two wee spoons of almost 5mls won't be too much.

In the early days of his epilepsy my son was an inpatient at Sick Kids Edinburgh and the nursing staff were using 5 or 10ml syringes to measure his Epilim, using a plastic bung that lives in the bottle under the lid until empty. I was really impressed and sought a supply from the hospital. We washed and re-used the syringes until the writing wore off and went in the bin, so we weren't being wasteful with them. I would say on average we were using one 10ml syringe a week.

Shortly after that, another of his medications was changed to a liquid form, so the syringes became an invaluable part of measuring 3 daily doses of 6ml and 2 of 12ml.

I joked that the syringes were “my precious”. Every time my son had a outpatient appointment I would get another little supply, perhaps 10 or so at a time, but as it wasn't local, it wasn't always convenient. Our local community pharmacy could only sell us such syringes at £1 a pop.

I mentioned the increasing difficulty in getting a regular supply to his neuro dr. who helpfully wrote us a prescription, but it was looked at with great bemusement and suspicion at our GP surgery. We then began getting a larger supply via the health visitor, but I got the distinct impression that she was having to sneak them out of some other supply cupboard. I feel deeply uncomfortable about putting her in this awkward position, as she was a good friend to our family.

I then thought to ask for syringes at our local hospital pharmacy, which delivered some out patient services to my son. After explaining what I wanted and why I couldn't get them from the community chemist, the pharmacist went away, to return with one syringe, and one bung, slapped it on the reception desk and was told sternly not to come back again.

I was so humiliated by her reaction, that I went to the front desk to ask who I could complain to. Initially, they said our GP, which was clearly not right, then I was given a complaints leaflet for Fife Health Board.

I wrote a letter and someone phoned me to say sorry about my experience with the pharmacist and to say that the district nurse was the person to contact. Having done that, I got the same impression that the syringes were being pochled from somewhere else. How can getting a wee thing like a syringe be like a soap opera?

I can't believe that after all the shenanigans, the time and making a formal complaint, it occurred to me to mark the syringes on the side with a serrated knife on the 6ml mark so that it doesn't matter if the writing wears off, we still have a line to guide us.

In the intervening time, we've been using the same stock of syringes for perhaps two and a bit years, our dwindling stock of brand new syringes are kept for when my son attends residential respite. I'm actually dreading when I will have to ask for more, for that purpose and not our personal use at home and I don't really know who to approach.

I also can't believe how much of a faff it became to source a regular supply of 10ml Baxa syringes and blue bungs ( or of late, luer syringes and purple bungs)

As you can imagine, I have a LOT of caring responsibilities for my son and until we marked the syringes with a knife, sourcing a regular supply of syringes became the bane of my life for quite a while. I sincerely hope that I won't face a new struggle when we run out of our supply for respite use.

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Response from Gillian Ogden, Clinical Nurse Manager, Planned Care, NHS Fife

picture of Gillian Ogden

Dear Caring Mama

Your situation sounds awful and I would like to help you with this.

Can you give me a ring on 01592 648153 to see if we can get this sorted out for you.

Kind regards

Gill Ogden

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Update posted by Caring Mama (a carer)

Sorry for not replying sooner.

It wasn't as straightforward a fix as it first appeared. I spoke to Gill, then my GP practice manager and then a practice nurse. It seems you can't prescribe syringes unless for diabetics.

I think this should be changed somehow.

Nurse got me a modest supply from her cupboard. So that was really useful.

However, whilst recently pursuing a new hospital mattress for my son, the district nurse tells me she can order by the box for me. I was astounded at the ease of that offer.

For folks like my son who take regular liquid meds, syringes ought to be made readily available. If it helps compliance, surely that's a win all round?

Thanks to the platform of Patient Opinion for letting me air this issue.

Response from Louise Ewing, Patient Relations Manager, NHS Fife We have made a change

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Dear caring mama

Thank you for letting us know the outcome and sorry it was not quite as straightforward as anticipated! I will share your post with our primary care lead to make sure that others know about this.

Thank you for sharing

Louise Ewing

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