Kanga59
Nutricia are ABSOLUTELY BLOODY AWFUL aren't they?! They only make their soya feeds in the 1L size so when I had my NJ tube in last year I had to waste a load of feed as was. Not as much as the times after I stopped having feed & had meds & fluids only through NJ & drivers would leave deliveries of feed outside my house... After I contacted them to tell them I'd actually had the tube removed so wanted them to cancel future deliveries entirely they reverted from deliveries of water + giving sets + syringes to sending me boxes of feed as well. I gave a passing commuter a bit of a shock the morning I stood on doorstep & twisted up my PJ top then danced in a little circle to demonstrate to the driver trying to force me to accept the delivery that I didn't now have a PEJ instead of an NJ; & was q forceful about fact that while the cats might think that soya+ tubefeed was so delicious it was worth chewing through boxes & chomping into the packs, I wasn't about to start feeding them it... Nutricia also made me miss a whole day of my ballet course when my pump broke as I was setting it up to run my feed overnight & they messed up sending a new one out. I waited in all day & when I rang them to see when it was likely to arrive was told I'd asked them not to send someone. What I'd asked was they not send someone out THEN, as didn't fancy turning out/neighbours being woken at ungodly o'clock by advent of new pump... 
I have an awful lot (several hundred pounds worth) of anti-emetic from when I had my NJ in. That I'm embarrassed about taking to a pharmacy. A big part of the reason I had the tube put in was constant nausea & random episodes of vomiting. Which as well as the obvious weightloss & generally being miserable, for me also meant my epilepsy control going decidedly wonky. Oral antiemetics didn't work & I'm allergic to prochlorperazine, the one that comes in pastilles you dissolve in your mouth. NJ to bypass my stomach; ondansetron through the NJ; nausea & vomiting settle; I gain some weight; splendid. End of November I did my repeat prescription for the INCREDIBLE amount of ondansetron needed to get me through the month. GP mix-up means I'm given a 2-month supply. That's fine, just won't order it next month.
Except then I end up in hospital for most of December. And although I take in my own meds, I only take a couple of bottles of the ondansetron. And Daddy would've brought me more of it, I'm sure, had my tube not decided to pack up completely. (You really don't want an NJ tube to back up on you. Although the ondansetron did take the burn off things...). I got switched to Granisetron patches during that admission (there had to be A Special Meeting because NICE says they can only be used by cancer patients during chemo after trying other drugs... they don't like giving out The Magic Patches, possibly cos they're about £50 each
my consultant's argument was that £50/week is much cheaper than keeping me in hospital & that it's cheaper than some of my other medication anyway...
I have brittle asthma (type 2) and WRT the issue of prescription exemption I think the answer is exemption should be only for medications for the exempt condition[s] - in inner London practically everyone seems to receive an asthma diagnosis as a child. Obviously they get free prescriptions then anyway. However, if they retain that diagnosis as an adult...
I think prescription exemptions DESPERATELY badly need reviewing. I do wonder about making it so you'd get an exemption for drugs related only to your condition - though new treatments etc might then be hit. Ech.
Trying to keep my prescriptions in balance is impossible btw as not only does GP surgery give me different supplies of 20-something things on my repeat list; any time I go into hospital, whatever they come up with as my TTOs will always send things even further out of synch. And I use one-and-a-bit of my long acting beta antagonist & steroid inhalers each month, so have to order two & very occasionally can have a month off. The GP surgery very rarely get my repeat prescription right, which if it was sent directly to a pharmacy & I either didn't check it on collection or someone else collected for me would mean I then ended up with the wrong things. The times I've to have Daddy get it for me often there are problems as he trusts they've got prescription correct at GP... Am sure a lot of elderly people end up with things because other people control ordering stuff for them & so it just appears in their life, effectively.
Have heard awful stories about elderly people swapping all sorts of drugs round between themselves - including/especially when GPs refuse to prescribe them! And of course, because they know it's "naughty" they don't tell HCPs on admission to hospital that actually in addition to their prescribed drugs they've taken enough Valium to sedate an elephant & half a tonne of beta blockers and that might, just MIGHT, have something to do with their cardiac symptoms. Maybe...