prescriptions for babies.

Indie_Kid

Nicki wrote: »

What's wrong on an occasional basis of a breakfast of yoghurt and fruit.

I've been told that I have to limit my intake of fruit to 2-3 portions a day. Yoghurt isn't that filling either.

Specialist gluten free products do make life easier (my dd was on a gluten free diet for medical reasons for 6 months so I've been there with the meal planning) but they aren't essential and its nit on the same scale as someone's chemotherapy drugs not being in on time for example!

If I eat wheat, I can and do lose a lot of weight and end up in a lot of pain. So wheat free food is a must for me - they are a need and not a want. It's not possible to just go to the local shop and get wheat free food - they don't stock anything like that.

GlasweJen

I have a friend with PKU, it is horrendous but the restrictions ease off as the person grows up.

The PKU foods are different to the coeliac stuff so pharmacy staff wouldn't just assume she's coeliac, they do have qualifications in dispensing medicines you know!

What really annoys me is when people accuse us of all sorts when really the patient could phone us/use the repeat collections service and get an exact date and time to come collect the items rather than pitching up 10 mins before we close (and 3 hours after the specials ordering line is closed) and expect their items the next day even though we can't get the order placed until the next morning and the items are coming from the other end of the UK and there's 3 feet of snow on the roads in between.

Nicki

I think you are deliberately missing the point sh1305. I didn't say gluten free food shouldn't be available on prescription, just that it is possible to make do for a few days if the pharmacy can't get it in. If you don't want yogurt for breakfast, you could have bacon and eggs, kippers, etc. There are many options for every meal which don't involve either wheat or a wheat substitute.

Tesco and sainsburys both do wheat free products, as do places like Holland and Barrett if you were determined to have replacement products at all times. Health shops also sell rice flour and the other ingredients to make homemade gluten free bread if the mood took you.

As I say I did do this diet for my dd for 6 months without getting any of the foods on prescription, and we managed to stick to the diet fully with no deviations, including occasionally eating out, so it is possible to cope for quite long periods without prescription food, much less tide yourself over for a few days if the pharmacist has a supply issue.

Indie_Kid

GlasweJen wrote: »

What really annoys me is when people accuse us of all sorts when really the patient could phone us/use the repeat collections service and get an exact date and time to come collect the items rather than pitching up 10 mins before we close (and 3 hours after the specials ordering line is closed) and expect their items the next day even though we can't get the order placed until the next morning and the items are coming from the other end of the UK and there's 3 feet of snow on the roads in between.

What is the difference (is there any?) between the repeat prescriptions service and just ordering repeats via GP? I know with mine, we have to wait for at least 48 hours before we can collect them from the chemist.

GlasweJen

coolcait wrote: »

It may be that the 'may contain traces of nuts' warnings are just there to cover the manufacturers' backsides. That's all very well but would you eat something when the label specifies that the item can kill you? Perhaps that means that we need to deal with the compensation culture.

It may be that sterilisation procedures in factories are so lax that nut contamination is a real risk. Perhaps that means that we need to address the lax sterilisation procedures. And how does this affect what I can eat in the mean time? I still can't wander into asda and buy a loaf of warbutons - well I could but last time I did I ended up in stobhill for a week so not planning on doing that again any time soon.

Whilst I shall be sure to tell my relative (and the paramedics and the hospital and the doctor) that - anaphylactic shock episode(s) notwithstanding - clearly her nut allergy is on of the more restrictive ones, And why the hell would you tell a paramedic that someone on the internet said that they are allergic to more nuts than your relative? I never said that she never had anaphylactic reactions to nuts but if she's not having to resort to sourcing flour to make her own bread then she's extremely lucky - i'm fairly sure her doctors can confirm that there is a tiny group of people who can't have any nuts at all or most seeds because they're closely related to nuts. the fact remains that her diet, and yours as you describe it, is far less restrictive than my friend's diet. But your friend has PKU, the comments were initially about coeliac disease where food is not essential to manage it and is freely available in most supermarkets and health shops should prescription items go awry. Where I'd bend over backwards to get PKU milk in for a baby or rolls in for a person with PKU I would roll my eyes at any coeliac who burst into tears because her bread had came in mouldy and had to be returned.

Nevertheless, if you, or my relative, or anyone else who suffers from a nut allergy, felt that they should have the same entitlement to prescription foods as coeliacs or those who - like my friend - have other conditions, then I would completely support you in any attempt to have the rules changed to include you condition. Thank you but it's never going to happen, allergies aren't glamarous enough.

..........

GlasweJen

sh1305 wrote: »

What is the difference (is there any?) between the repeat prescriptions service and just ordering repeats via GP? I know with mine, we have to wait for at least 48 hours before we can collect them from the chemist.

In the case of something that needs ordered in (example for today man who needed parts for his catheter) we can take the order, call the surgery, get them to fax a copy of the prescription (make sure we order the correct size and brand). Use the faxed copy to order the items (over the phone because it's a special) call the customer back with a date the items will be in. 48 hours later the prescription arrives and get stapled to the balance slip which will be matched up with the product when it arrives in (hopefully on the specified date).

If you just call the surgery we have no idea of what's on your prescription until it comes in 48 hours after you order it and we need to start the ordering from then which means someone needs to wait 2 days on top of the usual time to get their stuff in.

coolcait

GlasweJen wrote: »

I have a friend with PKU, it is horrendous but the restrictions ease off as the person grows up.

Not if you are a woman who is trying to conceive or pregnant. It actually seems to become more restrictive then.

The PKU foods are different to the coeliac stuff so pharmacy staff wouldn't just assume she's coeliac, they do have qualifications in dispensing medicines you know!

What really annoys me is when people accuse us of all sorts when really the patient could phone us/use the repeat collections service and get an exact date and time to come collect the items rather than pitching up 10 mins before we close (and 3 hours after the specials ordering line is closed) and expect their items the next day even though we can't get the order placed until the next morning and the items are coming from the other end of the UK and there's 3 feet of snow on the roads in between.

I'm sure you'll also understand how frustrating it is for a patient when, having arranged the repeat prescription in good time, and arranged a collection date with the pharmacy, many of the items have not turned up.

Clearly, we all feel very strongly about the conditions which affect us and those who are close to us. Most people reading my earlier posts clearly made assumptions about the condition I was talking about, and as a result were scathing about my friend's reactions, and unsympathetic to her situation. Now that people know what her condition is, there may be more sympathy.

Maybe there would have been more sympathy at the beginning if I had written

"My friend is trying to conceive, and has to follow a really strict diet all the time she's ttc and all through the pregnancy or else her baby could be damaged (she has a condition called PKU). She gets food on prescription, and loads of supplement type things, but the local chemist seems to have real trouble getting all of the stuff all of the time. Usually she just shrugs it off, but she's really stressed out right now. She's been ttc for ages, sticking to this diet, taking blood tests to check that the 'levels' are OK, and worrying about not falling pregnant, and worrying that the baby will be OK if she does fall pregnant, and worrying that her 'levels' aren't quite right". Well, she went to collect her prescription, and most of it wasn't there! She was devastated! The woman behind the counter said "the rest will be here in a couple of days", and gave my friend a dirty look, as if to say "I'm sure you'll find something else to eat". But it's not as simple as that. So now, of course, my friend is worrying even more about her 'levels', and how that might affect a baby".

It's very easy to be dismissive of the idea that someone could get emotional over something as 'simple' as a prescription not being in. However, it could be -as in my friend's case - that the real reason for the emotion is the fact that the person is under a great deal of stress, possibly linked to their diet - and the missing prescription is just what triggers them into reacting emotionally.

GlasweJen

Like I've said they've probably turned up out of date or with burst packaging and had to be re-ordered again, most frustrating as one of the biggest pharmacy suppliers is shocking when it comes to speciality foodstuffs but we can't go telling people that their rolls came in algae green coloured.

Humphrey10

sh1305 wrote: »

It's not possible to just go to the local shop and get wheat free food - they don't stock anything like that.

Seriously? They don't sell fruit, vegetables, pulses, meat, cheese, milk etc etc? Are you looking in a bakers or something?

If someone's only dietary restriction is that they cannot eat wheat gluten, I really cannot understand what the problem is. If there are other restrictions then I can see the problem and why they'd need specialist food, but if it's just wheat free stuff I really don't see the problem.

liney

Just incase it's useful, my local Asda have a whole wheat free section selling pasta's, bread etc. You might find items in the larger supermarkets who I find are increasingly selling specialist foods.