We keep seeing members who have received medicines without the appropriate Patient Information Leaflet (PIL).
Government guidance is absolutely clear:
Patient information leaflets (PILs)
Unless all the information is on the pack, all medicines must include a PIL, regardless of how patients get them.
gov.uk/guidance/medicines-p...
Posting this to emphasise that this is a requirement - not an option.
(This applies in the UK only, but I'd expect similar rules to apply across the EU.)
Indeed! It seems everything is falling apart… scary world.
In the days before PILs were mandatory we had to rely on our GPs for information about side effects.
Over 30 years ago I was prescribed Duphaston (discontinued in UK 2008) - no PIL provided - no Google. I wasn't told that it should only be prescribed for a few months. Eventually I began to get bleeding between periods. I asked the GP if it could be a side effect - No! No! Asked the gynaecologist - No! No! Result - after 3 D&Cs I found a book in the local library with medicines and their side effects - that's where I found out that bleeding between periods was a known side effect of Duphaston.
So 3 operations not good for my health. 3 operations costing the NHS money. Please don't let anyone say that they don't need PILs (Patient Information Leaflets).
I do think the MHRA is pretty supportive of there being PILs and, though rather slow, they have been trying to improve them.
I find it difficult to believe that anyone other than pharmacists are letting us down here. At least, they must be the ones not making sure PILs are issued even if others should be cracking the whip to make sure they do.
I was prescribed liothyronine on NHS in November 2020. I received a genetic PIL. I asked which brand of Liothyronine I'd been given. The pharmacist didn't know and told me they were merely acting as a postbox for the hospital pharmacy so I could pick up my medication local to me. I insisted I needed to know. They insisted there was no way they could find out. I asked for the phone number of the hospital pharmacy from them. They gave it to me. I rang the hospital pharmacy, and was finally told the liothyronine is been given was Mercury Pharma. Still no PIL and the hospital pharmacy and the local pharmacy were unable to supply one as they didn't have a PIL for Mercury Pharma on their system. I Googled it. I found a PIL dated 2017. Mercury Pharma liothyronine has lactose in. I'm allergic to dairy and lactose. It's on my medical record that had been sent on my referral to endo who prescribed the T3.
So mistakes are still being made. It is essential to be your own gatekeeper and get the PIL (and read it). I still haven't been given a brand of liothyronine I can take. Though to be fair, my endo is pursuing this. Maybe after my kicking up such a fuss the hospital pharmacy now provides the brand of the liothyronine they are prescribing to the patient together with the correct PIL. I'm an optimist. I can but hope.
Thanks for posting helvella. I never get a PIL from Springfield. I had to ask twice for one to be sent after my meds were posted to me. I receive 180 x 5mcgm Sigma Pharma every 2 months (3x 5 daily) I think they come in bottles of 90 and the PIL is attached to the bottle. Mine come in one brown bottle with just my name, date of dispense and saying Liothyronine, no mention of the brand. So what should I do about? Will MHRA do anything if I complain to them?
I think I would contact the pharmacy and explain that you want the PIL, that it is required they supply one and suggest it might be easier for them to supply one than for you to complain.
The people who regulate are:
pharmacyregulation.org/rais...
Maybe contact them and ask what to do (without naming the pharmacy). It is important but might be better handled by pressure than formal complaint - for now.
You can get the information from here:
I wonder if some problems with lack of PIL are due to pharmacists having to break open full bottles to dispense smaller amounts such as the amount needed per month? For example pills originally coming in bottles of 100, but the prescription says something like 2 months at 40. The pharmacy then breaks open the packaging and repacks the specified amount. The new pack has no PIL. What happens to the leftover pills?
One pharmacy I've dealt with seemed to be dispensing full bottles and rounding up the amount on the prescription. This makes a lot of sense as there are no leftovers and we get the original packaging and PILs.
Where I used to live the pharmacy were habitually repackaging everything regardless. I complained and they never did it again for me.
I've asked my current doctor to give me prescriptions for 100s so that I get the original bottles with PIL attached.
You are quite right - especially if they have had to resort to dispensing from bulk packs.
There is a wonderful device - a photocopier! 
Or download the PIL from the manufacturer or medicines.org.uk/emc/
Those are the standard, acceptable options which are suggested. Along with requesting more copies from the manufacturer.
Also, many medicines, like levothyroxine, are freqeuently dispensed several packs at a time. The rule isn't that every single pack has to have a PIL. So long as one of the two or three packs has the PIL, that would be OK. (Some PILs cover all dosages - others don't. Requires some care to make sure they get it right.)
I agree, have been getting 56 Carbizamole each month and the bottles come in 100s. Only last month for the first time did I get a PIL. I had Googled for myself as I like to know what I'm taking, any side effects but many don't. This was Boots as well who I would expect to know better.
Can you ask for your prescription to be for 100?
I have thought about that but my Endo said he will be changing it soon so will do then.
Carbimazole is one that has such important side effects - and could require URGENT seeking of medical help - that I would report the pharmacy for not supplying the PIL.
I usually recommend patients new to it to read the PIL several times.
Agree! Had it stressed to me by my GP when first diagnosed the importance of being aware of sore throats, mouth ulcers, unexplained bruising. Would have expected to receive a PIL, that time I got the prescription in a proper bottle and packaging too.
If I get a new medication, even if there is a PIL, I always down load one, they’re alll available on the internet. They’re easier to read - and sometimes they’ve been updated.
That's true. But it is a start and the basics don't change much.
But the EMC source (link earlier) is itself often out of date! And they do not include all products - such as Teva levothyroxine.
The UK links in my Medicines documents are directed to the MHRA site as that is the only place to guarantee to get the most recent approved PILs.
But the search mechanism is poor, best search using the PL number from the pack.
Thank you. 😉
I’ve just downloaded the PIL for a new transdermal opioid analgesic which the pain consultant has prescribed.
I’m not going to take it. It’s not the first time that I’ve found that a PIL contraindicated other medications that I’m on. I think that this is an area of great concern.
Ive just weaned myself off Gabapentin with great difficulty and can’t say that the pain feels a great deal worse. Oncologist is also looking to give me HRT again. This PIL informs me that sex hormones and cortisol are reduced by this medication. My cortisol is very low and so are my oestrogen levels.
Isn’t it time that physicians looked at the whole picture and didn’t leave it up to the patient to check that the drugs they’ve been prescribed are appropriate?
Not a happy bunny today ☹️
It undermines the prescriber to have recieved such a prescription and have to do your on due diligence. If the consultant had discussed, properly, you might have understand why it could be worth it despite negatives in the PIL. As it is, I suspect you have reduced what faith you might have had in him and the medicine.
That’s true. It’s an example of poly pharmacy at its worst.
helvella, I used the link to check on pharmacy inspection. Springfield has never had one and neither had a lot of pharmacies in the area
Having an inspection system and then not inspecting every pharmacy, regularly, is plain crazy.
British Thyroid Foundation - Patient information event - Thyroid Guidelines UpdateAristo Levothyroxine - some information
Availability of info leafletsInterpersonal Dimension of Online Patient Forums: How Patients Manage Informational and Relational Aspects in Response to Posted Questions
NICE - Is This What Causes Doctors To Test For TSH & T4 Only?
