LowproteinLIVING

Does anybody else dread getting their foods every month? when i go to collect my low protein foods every month from my chemist, i know i didnt get half of what i ordered. I ring companies like SHS and Promin to confirm they’re in stock of everything frequently but yet i still dont get a lot of items when i go to collect them.  This is my medication and im not receiving all of it for some reason! I am now under the illusion that it is the suppliers to the chemists that are at fault like United Drug and Permbertin. Im in Ireland and would like to know if anyone else is driven mad with this major problem?

Hi,
I am in Northern Ireland and have this problem too.  It always seems to be the same few products that we have the problem with.
I mentioned it to our dietician at the hospital and she was able to sort it out for us.  Next visit to the chemist there were no problems.
Could be worth mentioning it to them at your next appointment and see if they can help you

Hi Edel,

That’s really unacceptable that you are having problems with getting your low protein and metabolic products from your pharmacy. At the moment there are no out of stocks with any of the Loprofin or Juvela Low Protein Products.

If you contact the Irish Metabolic Freephone on (ROI) 1800 923535 or (NI) 0800 973216, alternatively you can email info@lowproteinliving.ie, we will contact your pharmacy directly and the distributor your pharmacy is dealing with to ensure this issue is resolved ASAP.

In addition, we can send your pharmacy an SHS Information Pack and we will add them to our database to ensure that they are kept up to date on all of our new products and that they have a direct contact point in the event that they encounter any problems in the future.

Hope this helps,

Caroline

I had loads of problems when I first set out getting lopro stuff. I changed pharmacies three times before I found one I liked. I am not in Ireland but I use Superdrug there fantastic. At first I worried that a large pharmacy chain like this would have less time and too much custom to be concerned with a order such as mine, quite the opposite they are amazing. They lend me food when I leave it too late to collect my scripts from the doctors, they preorder items when I phone, they deliver if I need them too, they swop and change items for me if the GP doesnt get it quite right for examle I ask for biscuits and the GP gives me crackers. The pharmacy just change it as long as the price is the same or similar. I dont know if you have Suoerdrug but I recommend them. I have had problems with previous chemists who have stated its manufacturer shortage but like you I have investigated this to find there is not a shortage. I have found the problem lies with the wholesalers the chemists use. If the items are simply out of stock the wholesaler will inform the chemist its a manufacturer shortage. I have in the past been really stern with the chemist and found this to work. My chemist has in the past ordered items directly from the manufacture and cut out the wholesaler. I always say to the chemist when it happens “you wouldnt leave a diabetic without insulin so why leave a pku person without their meds” It does make them think. I think you have to shop until you find a chemist that is good. I know its a right pain but when you find a good one you wil be glad you changed!!!!

Do they not have a Home Delivery service in Ireland? Would that be of some help? We live in the UK and our chemist use to deliver the products to us. When we moved house we could not find a new chemist to do it so now we use the SHS home delivery service which has been very helpful.

We get home delivery in Northern Ireland now.  Dont know about Ireland though

Also in Ireland your in if you live in Dublin you can get it delivered to your home or work place.. outside Dublin it depends on your chemist, found a chemist in cork willing to pick up perscription from GP order it in and deliver it to your home , if anyone wants details i’ll get them

hi i have 2 children with pku and we have the same problem they always blame the supplers, everytime we go they give me something ive not ordered. they dont deliver our things they say they are not elderly. my son has 12 tins off maxamum and my daughter has 4 boxes of pku express and what with everything else they have we have to make 3 or 4 trips there sometimes.i have made 2 complaints to there head office and nothing as changed.

Hi Edel;
I too am from Ireland and have had problems getting low protein products in the past. Some of the products I ordered were not in stock apparently and some when they arrived were only days away from their sell by date. When I ordered bread it was broken so that I couldnt get as much as one edible slice in each pack. The staff in my pharmacy are fantastic, really really supportive, as were the staff in SHS, nowadays I dont have as many problems but I’ve not ordered the bread as much...am I the only one who mourns the old tinned bread made that used to be available in the early days????? Bring it back I say!!!

Hi everyone,

In the Republic of Ireland, Central Pharmacy provides a Home Delivery Service for people living in the greater Dublin area.

In Northern Ireland, SHS provides a Home Delivery Service for SHS Protein Substitutes and Low Protein Products. This service is provided free of charge. For more information on this service, please call 0800 973 216.

If you are having problems sourcing SHS Protein Substitutes or Low Protein Products, please call the SHS Metabolic Freephone (ROI) 1800 92 3535 (NI) 0800 973 216 and we will help you resolve this problem.

Kind regards,

Caroline

Hi All,

This is a problem for chemists in general, because the quantities are so small they never stock these items. They then have the problem of getting the stock from a wholesaler/distributor. Again, because the through put is so small they too are likely to be out of stock or have short shelf life. They don’t really like these products at all. Thats not to say that poor service is acceptable.

We built up a really good relationship with our local pharmacy, and he would ring us before our perscription was due to get an idea of what we needed. It worked really well: so building a relationship might help, but its worth going to the smaller local ones.

Pete.

Hey all

Yep - I’m fed up to the back teeth with this problem!!!

I don’t live in Ireland - I’m near Reading in England, but every month I dread getting my food. I’ve just signed up to SHS Homeward recently and at least it means I won’t run out of formula, but the products I use the most, like the fate baking mixes, still have to be ordered through the pharmacy.

I don’t just have problems with pharmacies though, it’s doctors as well! Until I started Homeward my doctor refused to prescribe me the correct amount of Lophlex and I had to get a new prescription every 10 days. Its an absolute nightmare to be honest.

Because I live in a small village my doctors is a dispensing surgery. They are always claiming they can’t get things and even insisted to me that the Lowprofin Pasta Spirals didn’t exist! When I first registered with them they left me for two months without any low protein foods or medication - not ideal when you’re trying to force yourself to be back on diet!

SHS Homeward has been a lifesaver, though I do find it a pain because generally what I need changes on a monthly basis. I’m not sure how to change my prescription regularly or even if I can?

Kate

Dear Kate,

It is possible for you to change your prescription for low protein foods from SHS on a monthly basis. I suggest that you contact the Homeward Team and discuss how this will work for you. Once you have decided what products you wish to have, the Homeward Team will request the amended prescription from the GP for you.

Also ask the Homeward Team to arrange for a Low Protein Food Guide from SHS - this details ALL low protein products available from SHS and should help you make your choice each month.

You shoud also check this website regularly as this will be where new low protein product launches will be detailed.

Just a note on the Pasta Spirals - your GP may infact be correct. This product has been renamed as ‘Fusilli’ so they may not be able to find Spirals on their system as we have made that product obsolete. The Fusilli is exactly the same shape as the sprials however. All 10 pasta varieties are listed in the guide and on this website.

The number you need to call to get some further advice from the Homeward Team is 08457 623 605.

Kind Regards
Hannah

Thanks Hannah Actually, they told me that Fusilli didn’t exist either. They are still insisting. Luckily now though, it’s not a problem Seems to have been sorted since I signed up to Homeward!

K

Hi,

I’m new on here but am not new to the diet and the supply problems.

My son has Homocystinuria and i have terrible problems with both the doctor and pharmacies. I have to fax through the prscription to the doctor and the pharmacy and have to ensure that all spellings are correct or they just comeback with that the computer cant find theitem. Its so frustrating.

I used to have a fab manager at the pharmacy who ordered in advance for me but she has since left and the current pharmacy is no longer willing to do anything to help. if the warehouse says they have no stock they do not contact SHS direct they just wait for it to come into the warehouse which culdbe days. he worst thing is that the SHS main building is 2 miles away from where i live in Liverpool.

I got so short of the main ingrediant of my sons formula thati had to go and pick it up from SHS once by special arrangment.

I think that the home service would be useful to me as i have no end of issues, how do we sign up for it?

Thanks
Janette.