Now why would anyone actually want to know what medication they're taking? Much less fun that way!

[elettaria]

Just when you think that you can't be surprised again by poor disability access, something new jumps up. In this case, I've been finding it increasingly difficult to read the product labels and leaflets on my medication, so I rang my local pharmacy to ask them to supply me versions in large print. It turns out that I was in fact asking for the moon on a stick. I've spent the day ringing round various organisations, and I think the easiest way to do this is to copy in the letter that's being sent off to the Pharmacy Division of the Health Department at the Scottish Government.

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Dear [very nice lady I just spoke to on the phone],

Further to our conversation this afternoon, here is an outline of the problems I am experiencing.

I suffer from severe ME, which includes eye problems as well as dizziness, concentration problems, extreme fatigue and memory problems. I have also been diagnosed with Meares-Irlen Syndrome a visual processing disorder which causes dyslexia-type symptoms and means that I can muddle letters, have greater difficulty reading black print on white (as opposed to coloured) background, and cannot read at all under fluorescent lighting (which is standard for all non-domestic lighting). In addition to this, I get migraines with visual symptoms. The ME fluctuates, but for much of the past year I have been unable to read at all. Even on a good day when I can read normal-size font, my ability is limited and I am unable to read for long, read small print, read under fluorescent lighting (so I can't read anything while I'm actually in the pharmacy, for instance), or read when the colour contrast is poor.

A couple of months ago my doctor decided to try me on a different painkiller as I was having problems with side-effects, so put me on co-dydramol instead of co-codamol. I contacted her after trying it to say the side-effects were just as bad as with the co-codamol, and we abandoned that approach to pain relief. About a month later I was desperate enough for pain relief for a migraine that I decided to brave the side-effects, and pulled out a box of co-dydramol. Not a single tablet was missing. We're still not entirely sure what I took the first time, probably co-codamol, but I am very alarmed that this could happen again. Co-codamol and co-dydramol are similar so there was no real harm done on that occasion, but if I had taken an opiate painkiller and then added four temazepam (sleeping tablets where the dose is a single tablet) under the impression that they were senna tablets (laxatives to control the side-effects from taking opiates), the results would have been dangerous, perhaps even fatal. This situation is a catastrophe waiting to happen.

I find that the size of print on both pharmacy-printed medication labels and the medication leaflets is far too small for me to read most of the time, and certainly too small for me to read when I am in pain, getting a migraine or particularly fatigued. I rang my local pharmacy about this yesterday, Boots in [address]. They informed me that the medication labels (for which they are legally responsible) are pre-set and there is no option to change the font size. However, when I rang back today they said that they're getting a new computer system at the end of the month which might improve matters, and urged me to ring back next week to discuss this with the practice manager.

The leaflets, however, are beyond their control. There is a relatively new scheme run by the RNIB called XPIL which provides leaflets in alternative formats, but it only covers a limited number of medications so far and it takes time for the alternative leaflets to be sent out. One snag is that you need the product license number in order to acquire the correct leaflet. At best, boxes of medicines have the PL number in a tiny font and often with poor colour contrast (e.g. white print on bright orange background), but only about half of the medicines I currently own have any PL number visible at all. Where the product was dispensed in a plain box or bottle, there is no PL number, and in some other cases the pharmacy label was put over the PL number so it could not be read. It turned out to be a long, tiring job simply to order the leaflets for my medicines, as I had to ring Boots to find out the PL numbers, and squint at lettering so small that I probably got half of them wrong and had flashing lights in front of my eyes by the time I'd finished. I have no idea when the leaflets will turn up, but it sounds like it will be a while and won't be all of the medications, and I feel it it unfair to expect disabled people to wait weeks or even months before they have essential information for their medication.

I then rang Organon, who make the migraine medication I have just been prescribed. It turned out that this medication was in fact discontinued, so they couldn't send me a leaflet, but the man I spoke to offered to find the PDF for the leaflet and print it out as large as he could for me. This was very kind, but again it took a considerable time to set up, and I don't know if and when I will actually receive it. When I asked if Organon could at least put their PL numbers in a readable font size, he informed me that it is not their decision. Apparently such matters are strictly regulated by the MHRA. Exactly why the MHRA have decided that the best font size for medication is one that is unreadable for a large proportion of the population is a question I am unable to answer.

I am quite astonished that the seemingly-simple task of obtaining medication that is clearly enough marked that I can distinguish it from other medications is impossible, and that merely obtaining the leaflets is so difficult. There must be a huge number of people who have similar difficulties. So far, I can think of: people who are partially sighted, people with eye conditions that sometimes or always limits their reading ability (my mother wakes in the morning with her eyes sealed shut, for example, and cannot see clearly for some time after she has put in her eye drops), people who need glasses to read and may not always be able to get to them (e.g. due to disability or waking in the night in pain), dyslexics and other people with reading difficulties, migraine sufferers.

I have been given a number of suggestion by well-meaning people from the RNIB (e.g. putting tablets in dosette boxes - unsuitable for medication taken on an as-needed basis rather than daily; making a master list and then putting numbers on the boxes instead - too complex to handle when in pain, fatigued or confused), none of which solve the problem. I believe that it is my right under the DDA to obtain medication from the NHS which I can use in the same way that a non-disabled person could use, so that it is always safe for me to pick up a box or bottle of medicine and know what is inside it, and be able to read the leaflet the moment the prescription is given to me, rather than having to wait weeks or months, and make so many phone calls to obtain the leaflets that I am exhausted for the rest of the day. Personally, I would be happier if the standard font size for medication labels and PL numbers at the very least were increased, and if alternative options were available to suit a range of disability and health needs. For instance, I am currently experimenting with sticky labels in different colours to indicate different types of medication (painkillers, sleeping tablets, stomach meds), size and shape to indicate strength, and number to indicate dose (two labels = two tablets). It's awkward to manage, difficult to remember, and the labels tend to fall off. If something could be printed on the pharmacy labels along these lines, even if it were just two black bars indicating that the dose was two tablets at a time, it would be enormously helpful. I would be very interested in seeing research done to determine how many people are at risk of misreading medication labels and leaflets, some sort of scheme under which such people could register with their local pharmacy and automatically get accessible medication, and exploring non-text ways of printing labels to indicate matters such as dosage.

Kind regards,
elettaria

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It's a bit long, but depending on what she's going to do about it there are various details that may be useful, so I shoved them all in. I'll keep you posted as to what happens. If anyone is in a similar situation and wants to get involved too, please hop in. I'll campaign for this if I have to, it's an appalling situation and I bet there are plenty of illnesses and deaths it has caused. I just hope I don't have to take my lovely local pharmacy to court. Judging from what the chap at XPIL said, it might be necessary to have a disability discrimination court case from an individual to get the law moving on this.

In other news, my new laptop has got so ridiculously unwell that John Lewis have agreed to exchange it for me. As it's been discontinued, I now need to decide which computer to get as a replacement. Apparently they'll match the spec, and since mine is discontinued and there hasn't been a direct replacement, this means moving up to either the nearest Toshiba (apparently it has 3GB of RAM rather than the 2 shown on this page) or a Sony Vaio. The guy at John Lewis reckons to go for the Toshiba, the spec's a bit better in most ways - apart from the audio card, which is making me pause slightly as the first problem I had with this Toshiba was the sound distorting. Any advice?

Comments

[rymenhild.livejournal.com]

What a horrific situation. There must be millions of people in the world with difficulties reading those drug packages, and it's disturbing that your pharmacies don't have quick and regularly-implemented solutions to the problem.

[elettaria.livejournal.com]

Now that is exactly the phrase I should have used. I'm probably a bit wordy due to the brain-ded-ness induced by hours on the phone to Boots, the RNIB, the EHRC (Equality and Human Rights Commission), Boots, XPIL's horrible automatic voice thing which claims to let you speak you a human but won't, the pharmaceutical company behind XPIL, the actual human beings staffing XPIL, Boots, the XPIL folk again, Organon, Grapevine (disability rights info), the NHS helpline, the MHRA (Medicines Health and Regulatory Authority), and finally the Scottish Government. Yeesh, no wonder I'm tired.

Isn't it insane? D's been really worried about me since the co-codamol/co-dydramol incident, every time he sees me take a tablet he grills me to make sure I know what I'm taking. The bit that really stumps me is when you get told that oh yes, these drug packages are all strictly controlled by an organisation who has decided that they should all be in size 8 font. By the time I was trying to read PL numbers which were either in tiny white text on orange background or actually under the pharmacy's printed label (with the pricier drugs they give you small quantities at first to make sure they work for you, which means small boxes), it had turned into a farce.

That said, I know I sound whiny as hell here but the reason why I'm thinking of actively campaigning is because it's something important, worryingly neglected, and not at all depressing to discuss, unlike a lot of other disability stuff. I'm actually relatively chirpy.

[garpu.livejournal.com]

I don't think it is being whiny. You've got a legitimate complaint that could cause serious (even life-threatening) issues. jazmine601 is a pharmacist here, and she might have some ideas that would work.

[elettaria.livejournal.com]

Hmm. US rather than over here, but she probably still knows heaps about how the systems work. Throw her in this direction, would you?

[garpu.livejournal.com]

Yah sure. She's a sweetie.

[catnip-junkie.livejournal.com]

That is more than a little disturbing. Especially considering that people with disabilities/the problems you outlined are so much less likely to be able to read labels in such a small and awkward font. Even I have to squint sometimes, and with glasses my eyesight is fine.

I hope you get a half decent response to your letter, because that is truly, truly appalling.

[mirrorshard.livejournal.com]

That's a truly ridiculous, not to mention Kafkaesque, situation (though I'm now wondering whether there should be a Godwin's Law equivalent). I admire your response to it immensely.

[elettaria.livejournal.com]

Silly, isn't it? I managed to wander out to D's shop yesterday and popped into another local chemist to ask if they do large print labels. They promptly printed off the largest they could manage. The font was clearer to read than the Boots one, but I don't think it was more than a point or so bigger. This could be an interesting journey.