Handing over responsibility
Handing over responsibility is what parents do. Sometimes it’s really tough, but sometimes it’s a blessed relief. I’m handing over responsibility to Tamsin for ordering her prescriptions, and there’s quite a lot to learn.
Setting up systems
Tamsin’s diagnosis is nearly a year old. We first went to the doctor last June and had formal diagnosis in early August after lots of chasing phone calls. It’s such a big diagnosis but the hospital showed no urgency in letting us know. Remember Tamsin had to keep eating gluten until the diagnosis was certain. Waiting longer than strictly necessary compounded the damage that had been going on inside her body for years.
Following diagnosis Tamsin was very happy to let me handle everything. She was 14, grown up in some ways but still young enough to feel daunted by this sort of thing. We had an appointment with the dietitian, changes to make at home and school lunches to think about. On top of that we had gluten free food prescriptions to organise.
Prescriptions come every four weeks, not the same date each month, so there’s plenty of scope to miss the deadline. I set up a reminder on my phone for ordering prescriptions, just to make sure I didn’t forget. Handing over responsibility just wasn’t an option at the beginning. Tamsin didn’t show much interest in helping to form her new diet, but old habits die hard. If she wouldn’t do it, I would have to, otherwise my daughter wouldn’t eat properly.
Units
Tamsin gets 18 units a month now. Units are the be all and end all for prescriptions. Patients get different numbers of units depending on their age. Understand how many units you’re entitled to. You then need to understand how many units each item ‘costs’.
Juvela and Glutafin send out handy sheets with unit info and PIP code on them. Keep them to hand as they really are invaluable. This is a specimin order for 18 units:
- 1 x Glutafin Pasta Penne PIP: 211-5152 (2 units)
- 6 x Glutafin Mini Crackers PIP: 353-5515 (6 units)
- 1 x Juvela Fusilli PIP: 280-7980 (2 units)
- 2 x Glutafin Pasta Spaghetti PIP: 215160 (4 units)
- 1 x Juvela Tagliatelle PIP: 319-3497 (1 units)
- 1 x Juvela Lasagne Sheets PIP: 280-7972 (1 unit)
- 1 x Juvela Macaroni PIP: 280-8004 (2 units)
Ordering systems
Our dispensary used email for repeat prescriptions until very recently. I’d send them an email much like the above and it all worked fine. There’s a new system now as part of our GP’s growing online services, but it doesn’t work well for us.
The page lists each repeat item available, but there’s no option to order multiples. Tamsin’s very partial to crackers (see above) so we usually order several packs. Sometimes we stock up on bread or white mix or pasta. It’s different every month. The surgery suggests we use the comment box on the order page to tell them how many of each thing we want. I thought this was great til I realised the prescription items shown also include the quantity last ordered. That means that Tamsin’s ticking the box ‘Glutafin Mini Crackers 6 x 175g’ but only wanting two boxes, or four. She has to add a comment for each item, which seems very clunky.
I understand why the surgery wants to move to the automated system and usually I’m in favour of these systems. This time though the system makes things more prone to error and confusion, not less. We’ve agreed to see how it goes this month, and revert to email ordering if need be. My next challenge then will be getting Tamsin to use her email more. If only the surgery could come up with a prescription ordering app Tamsin would really engage with it. If she could add flower headbands and bunny ears they’d really be on to a winner.