Should more be done to inform patients of shortages?

[soupdragon]

Afternoon and I tried to post this on a previous more relevant thread Creon shortages) but it is not accepting new posts or replies so am posting here.
I have just seen this report on Sky News and it does seem to be a postcode lottery as I have been getting regular supply’s and wanted to know how others are coping with any Creon shortages in their area.

Pancreatic cancer patient 'left in lurch' due to global shortage of medication that helps him digest food

Dan Godley, 31, says ordinarily he would be prescribed around 10 bottles of Creon a month, but the most he has had from his pharmacy in the last five months is three bottles.

news.sky.com

I attended an online information session run by my hospital about Creon availability. Really interesting and useful. A number of issues are contributing to the problem. A few of the points I took away:
- yes, shortages are now expected to last until 2026. A new factory is being built to manufacture Creon but won't be ready until then.
- Currently approx 90% of the amount of Creon required is reaching the UK
- The system for allocating Creon to pharmacies has changed from earlier in the summer. Now, pharmacies can place Creon on back order and prescriptions can be filled when stock becomes available. This seems to be working well for pharmacy chains but may not be the case for all independent pharmacies. It was suggested that it is worth people checking that the pharmacy they use is able to back order Creon.

For me the new system is working at the moment. For the first time since June I put in a request for Creon and received it (a bit of a delay but not much). Hoping this continues. Phoning round pharmacies.to chase supplies wasn't much fun over the summer.

 

[everydayupsanddowns]

Thanks for that update @soupdragon

Glad the tweaked system is working well for you at present. It must have been very worrying, time consuming, and pretty scary. when stocks were running so low.

Pretty grim that it’s not going to ease until 2026 though

 

[djdave]

That is grim news about shortages lasting until 2026! When I was first put on Creon back in 2019 in London I had a few weeks of "sorry we can't get hold of any" and at that time I was still trying to figure out how much I needed. My local pharmacy here in Suffolk is very good at persisting with tracking orders and my prescriptions for 7 bottles is normally ready within 5 days of asking. I stopped all snacks and changed my diet for a month to stockpile some Creon to give me a 2 week window - so far working out OK.

 

[Standup]

The new system is very much not working for me. My local pharmacy hasn't had any since end of July. Ringing the helpline didn't really help as none in my area. The Boots in the nearest big town (although its all relative) did have 95 capsules which is only a couple of days supply. I've been getting paper prescriptions and posting them to a friend in the North East of England where there seems to be no supply issues and she posts them down to me. No free prescriptions in England so there is a small cost but not sure what the other options are. Not sure if its down to which wholesaler is used or as someone said the hospitals and big chains/stores get their supplies first or simple geography.

 

[Lucyr]

No free prescriptions in England so there is a small cost but not sure what the other options are.

Why not apply for a medical exemption or do you not take medications for your diabetes?

 

[Standup]

Why not apply for a medical exemption or do you not take medications for your diabetes?

Prescriptions are free in Wales so they don't exist so far as I know because why would I be collecting my prescriptions 400 miles away in a different country? It's also why I can't use the online pharmacies as the paperwork makes it all too complex.

 

[Lucyr]

Prescriptions are free in Wales so they don't exist so far as I know because why would I be collecting my prescriptions 400 miles away in a different country? It's also why I can't use the online pharmacies as the paperwork makes it all too complex.

You can apply for an exemption certificate to collect prescriptions in England even if you live in wales

 

[Chris Price]

I see the shortage of pre-filled Fiasp pens has made it to the BBC news.
I think most regular Type 1 contributors on here are aware of such shortages and know to look at the Diabetes UK website. But, clearly, this is not known by everyone.
Should checking for medication shortages be part of our own self care or should more be done, especially when there is an obvious alternative? For example, in the case of Fiasp, the shortage is with the prefilled pens, so should there be an (automatic?) change to prescriptions for reusable pens with a note to the patient triggered by the shortage notification? Or can Diabetes UK do more to make people aware of shortages?

I have moved on Fiasp today and have been made aware of the shortage and I am starting on cartridges and smart insulin pens.