to everyone on infusion

Do we all have to go to the hospital when we run out of needles and soft sets ect. Does anyone know the reason why we can not get these things on prescrition from our GP surgeries. Ive asked my GP and she just said they are not available on px and if your like me leaving it till you are down to your last needle its a mad panic to get them. and tegaderm thats a knightmare Ive only now just started to get that on px after a year of being on my infusion I always had to get that from the hospital to Cheers again everyone xx

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Kerry-Anne, it varies from area to area. I get all my stuff from the local hospital some get theirs through the district nurses. Tegederm used to be available on prescription but I thought you used sof-sets you should not also need tegederm. I have a system where I have one box un-opened and one on the go for everything as soon I as finish the ""on the go"" box I order my new ones. I would suggest you talk to where-ever you normally get your stuff and ask for a double order just once so you can operate the same system. My lot think it is sensible as there has been the odd time when they have run out of sof-sets/silouettes and at least they know I am not going to have a mad panic for a day or 2 until the order comes in.

Bex

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TEGADERM

Hiya Bex ive tried wearing my soft sets without tegaderm but I get soooooo hot all the time the dressing that comes with the soft sets just peels off so instead of them lasting a week or 2 they used to come off within three days so the hospital suggested using tegaderm with them. I always have to go to the hospital for my needles ect and it depends which member of staff gives me what I need sometimes they may give me 8 weeks supply sometimes a weeks supply. Thanx Bex x

[KateMoss]

Kerry,

Do you have a district nurse? If so they may be able to order and supply your sof-sets, syringes, needles and tegaderm via a supplies place. In Essex, surgical / medical equipment & supplies such as dressings, syringes, Big sharps bins, inco pads, bath boards etc etc etc ( get the gist?) are supplied & distributed from a central supplier ( Essex Equipment Service) and the initial order put in place by a district nurse.

You could try the district nurse direct or ask your consultant or hosp ward to put in a referal to them to get a regular supply.

Equipment isn't usualy prescribeable - some is such as spacers and insulin needles etc etc .

Hope this helps

Kate

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Kate I dont have a district nurse due to me changing my own site needles and managing to sort out my needles to put in my driver I did once consider asking if I could get my things from a district nurse but thought maybe that would mean they would have to do evreything for me when im happy doing it myself. I dont mind having to go to the hospital but it costs a fortune because I can not walk very far so I have to get taxis and sometimes I just dont have the money. Thats when i panic really thanx Kate xx

[KateMoss]

Kerry, You can be registered with a district nurse and never see them!

Not seen any of mine for years! LOL. They are not all hands on and the more you can do the better for them! Get reffered! They can then either supply them direct themselves ( budgets may be involved!) or they must have a central supplies depot of some sort.

Having to go to the hospital is not good, both health and money wise!

Please ask for a refferal. Even if they say no, at least you have tried.

Or even they could courier the needles for you from the hossie.

Kate

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I will look into it like you say I can only ask cheers kate x

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Kerry-Anne if you get 3 days out of a sof-set that is fine. A week or 2 is too long. I get 2 days 3 if I am lucky they are not designed to be in for weeks,

Bex

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Bex

Hiya Bex I used to get the butterfly ones which had to be changed every 72 hours but these ones that I have now are made like a venflon and only need changing every week or 2 ive been using these ones for about 9 months and are a whole lot better it was the dr at the hospital who told me how to change them. And like a venflon the needle comes out and only the plastic stays in I hope that makes sense lol xx

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Hi Kerry-Ann I know what sof-sets and sillouttes are I used to use sof-sets until I developed an allergy to the the stuff you stick them down with, I now use sillouettes same principle but you put them in at the same angle as a needle and the stuff that sticks them down is different.

Bex

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hi i get my sons needles and stuff from the childrens community nurses surely there is community nurses for adults aswell,,, all i do is phone up and they get delievered to my house either the same day or the next day at the latest tht reminds me i must order some tomorrow lol

[KateMoss]

I use Sillouetes too - but only for 3-4 days usually - 6 if very lucky! Have tried longer but can make a mess of your skin! Anyway, It is better to move sites often as it gives the s/c layer of fat time to recover and heal.

Please look after your skin - I have had absorbtion problems in the past and infections etc.

Also more of an infection risk if left too long as they will get wet & soggy when sweating / washing etc. Sof-sets the same - used them too.

Butterflies -evil things! ( needles, not the nice insects!) Had them for years back in the early 90s. ( Have been on s/c since 1994)

I think I have been through most of the range of s/c infusion sets over the years. Minimed (Sof set peeps) ones are by far the best, and the worse were disetronics - like a sticky drawing pins - and they snapped off occasionally!

Oh and if desperate you can use a neoflon! baby venflons.

Kate

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to everyone who has been so kind in replying to my post. my skin has been soggy even sometimes smelly from leaving my needle in so long but i didnt know any different i only went by what i got told at the hospital and if wasnt for all of use I would still be leaveing my needle in a week or two i know now to change it every 3-5 days noone at the hospital said to change it even when i have been in hospital for a while. My belly is like cobbal stones and purple scars all over I dont know anyone else apart from you guys that I have spoke to on AUK with an infusion so ive never been able to compare notes so as far as I knew everything was fine but i guess not x

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If you contact AMT link below they do laminated instructions for the shilouettes and sof sets they make. It may be that on the instructions it will say how many days roughly to leave them in for. This would help your case should you have to fight your case with anyone medical.

applied-medical.co.uk/

I get my items from the district nurses although like others i dont see them and prefer not to as they have been less than helpful. The DN who orders all my stuff is lovely but the rest welll!!!

I then get bricanyl from gp on script. Most dressing are available on prescrition wand when i did use them I had them on repeat not from the dns.

Good luck