Peg very important.

One can contact the company representative on nobantu.mukuruva@fresenius-kabi.com who is aware of my post here.

Hi Seeker1; I am afraid I don’t fully understand the point. My husband had a PEG for over 3 months, but there was no machine involved. He just used a syringe to give himself feeds into the Peg, it was very quick and easy. He taped the Peg down inside his trousers whenever he wanted to go for a walk or out in the car.

So I don’t think your issue is with the PEG, it sounds like for some reason you have an unusual method of delivering the food into the PEG, and the problem is with the design of that machine. I haven’t heard of anyone else having that sort of machine with a PEG, though.

good luck with getting some improvement.

i dont know but I imagine he could eat but needed extra. The peg I am talking about is about  people who can hardly eat anything. I use my peg for 1kg of feed and average 100gm an hour, that is nearly ten hours a night non stop. I think although you havent heard about it there are many people in my position. https://calea.co.uk/healthcare-partners/fresenius-kabi-products/

has a picture of one of their pumps. Mine is something similar but I  think more advanced. You can see how big it is and it is also heavy. 

This is one from a different company. One cantS choose which company you want under the NHS.

The Abbott FreeGo pump is designed to be portable. It can be carried in a specially designed backpack, attached to a wheelchair or pushchair, or mounted on a drip stand. The Abbott FreeGo pump has a large, clear display with easy to use controls, making it suitable for patients, as well as caregivers and healthcare professionals¹.

it can be carried but it is very heavy to carry for ten hours non stop together with the feed and the bag. . 

nutrition.abbott/.../abbott-freego-pump

 Both of these are biilion pounds international companies and it will take more than a few patients for them to change. Unless every patient impresses on his doctor and hospital in  the whole world, at least in the UK one is unlikely to get any result. 

I had an Abbot feeder and did my feed overnight and it wasn't a problem, I never used the carrier, I might of had an advantage as the three weeks I was in hospital I learnt to sleep on my back slightly propped up because of all the tubes I had in me plus the patch on my leg were they took a skin graft from that hurt like hell if it touched anything. I can't remember how long it took but I think it was 6 to 8 hours and I think about 3 months after my chemo and radio finished, it could of been more but it was 4 years ago.

Sorry to hear you are having problems though, we all react differently to these things. Could you decant the feed into 120 gram lots and syringe it in every so often.

Hi Seeker 1, when my husband was fitted with the PEG and taught to syringe the Fortisips and calogen the assumption was that he might not be able to eat at all for 3 months +. In fact he did manage to swallow some things all the way through the treatment, but this was not in the plan, and it was not the majority of his nutrition which came from the Calogen which was syringed in.

Having looked at the information I can find it seems like hospitals make the decisions on which 'system' they want to adopt. If they invest in the machines like yours, the feed is much cheaper because it is a bulk product. And I guess, having invested in the machines, there is an incentive to carry on using them. The fortisips and similar concentrated drinks lend themselves to syringing easily, but are very expensive per portion. So you don't have the up-front cost of the machines, but the cost per patient for the food will probably be higher.

So I think it is probably a hospital or hospital trust decision on what they think is the best financial proposition - maybe also with a view to how long the patient will need to be direct fed (expensive Fortisips aren't such an issue if it is for a relatively short period). It isn't an issue with PEGs per se, and maybe you can persuade your hospital to let you try syringe feeding rather than using the machine? Unfortunately any hospital which has bought the current range of machines is unlikely to buy new ones quickly even if a different design does become available.

The hospital only provides the machines in the hospital. For instance my hospital used the abbot one. When I left I became under the council who use the other one so I was  given a new machine. The feed is also different for each machine and only made by the machine makers. The feed is very costly, and one often cant finish it, sometimes the stomach cant take so much. So quite a lot is wasted. With my idea more would be used and less wasted. I do know there are half litre bags. But they are also quite heavy and it uses the same heavy machine. Using half litre by night is not a good idea since you have to wake up to change them although one anyway wakes up often and I suppose they are dearer.  I will be going to the hospital this week and will show them all  what is written here. 

That's strange, I had the Abbot in hospital and when I left Or rather through chemo I was given an Abbot through the hospital and the feed was from them through my GP the training to use it was with an Abbot nurse who if needed I could get in touch with. It is expensive as my GP wanted to know when I could stop using it as at that time it was £15 a bottle, I also had the little bottles of Ensure. My point is no one else was involved but the NHS.

Maybe you live in a council who uses abbot feed. So the hospital who also used it could supply it to you. I have mentioned the name and email of my nurse above who taught me how to use it. They send me every few weeks a new supply but the doctor has to order it. My hospital used  abbot but I live in  a different council area who use the other one. I have written about my peg problem before and this nurse got me into a different hospital who solved it. My regular hospital just said take pain killers. Thankfully I dont anymore thanks to this nurse. 

Would you be able to write to your former hospital and tell them about this?  They may not be aware that there is a better solution, and you could be helping lots of their patients to come by doing this.

In a previous post i said I was going there this week and would show all replies.