Ouch Too - a place for and about disabled people.

Forum => Health and Disability => Topic started by: RoseRodent on 02 Jan 2020 09:58PM

Title: NG tube extensions
Post by: RoseRodent on 02 Jan 2020 09:58PM
I'm copying this in for a friend, and for ease I am just making a direct copy, so when I say "I" I mean her. Thanks.

"I've tried asking this on a few specialist forums but they are so American that the suggestions are all not helpful. I can't change my home health company or my doctor, there is one company for each NHS trust and that is what you get. The problem I have is that my hospital will either give me a really long NG feeding tube that hangs down to my knees or I get one where the feed port is right behind my ear. I know there is such a thing as an extension which screws on the feed kit and then screws on the NG and they recommend using them for children so they don't catch their tubes, but adults are just supposed to not do that. I can't add it to my order with home health as that has to be prescribed. The hospital won't issue them because they are "non standard' and I 'don't need' them and 'tube feeding is really expensive' blah blah, just recommend ways I can pin up the long ones, which is stupid. I can't buy them out of my own pocket becuase the company doesn't have a setup for that, you get a prescription or you don't, it has to be the dietitcian that orders stuff. It's driving me crazy. Is there somewhere in the world I can buy my own? It's a codeEP075L on one site if that helps."

She's also desperately on the lookout for a non-Facebook forum with good traffic where she can chat about feeding tube stuff, ideally with more UK and Europe people, as the US people just don't understand where she's coming from that she can't just go to someone different, switch formulas (everyone in our area gets Nutrison unless they are allergic) and all that, and they don't get waiting lists either. She doesn't feel comfortable on a Facebook place, though, as you are meant to use your real name and that really restricts her from talking about private issues, even in a "private" group, as anyone who joins afterwards can see what you wrote with your real name and photo.
Title: Re: NG tube extensions
Post by: Sunshine Meadows on 04 Jan 2020 03:50PM
Nice to see you here :-). Your friend might already have these links. This link shows that the extension kit is available in the NHS supply chain 

https://my.supplychain.nhs.uk/Catalogue/product/fwm2721 (https://my.supplychain.nhs.uk/Catalogue/product/fwm2721)

 (https://my.supplychain.nhs.uk/Catalogue/product/fwm2721)PDF of a Product Guide has been attached to this post On Page 3 it says the following which as you can see mentions the range being available direct and also gives a phone number. I think it would be worth giving them a call.

WHERE CAN WE GET THE NEW ENFitŪ SYSTEM? INTERVENE manufacture ENFitŪ compatible syringes, adapters, NG tubes, extension sets and other accessories. The range is available direct or from NHS supply chain. If you need any further help or assistance, contact us today: +44 (0)1246 828088
Title: Re: NG tube extensions
Post by: RoseRodent on 05 Jan 2020 02:33AM
Thanks, that's basically what's driving her the most nuts, it's definitely a thing, they could prescribe it for her but won't, and the supplier won't sell it to her without it being added to her NHS list. The problem is because it's not exactly like a prescription, there a list of things you can order for free. She is happy to pay, but they won't supply them for money and the NHS won't pay. She just wants to buy some, but there doesn't seem to be a place to do so. As far as we can figure there's no equivalent of a private prescription where the dietician can say it's safe and appropriate to sell her some at her own cost, they either add it to her list or they don't. Suppliers are like "sure, we have those, get this code added to your list..they won't? Oh, can't help you then". Don't think they can be written on a prescription form to be ordered by a pharmacy or anything either. I would say there must be a way, but then it is a government system, so maybe not. 😥