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04-09-2012, 04:44 AM   #1
DMac
 
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Do you pay for your supplies?

Hi

I'm interested in hearing from you about how you get your supplies. I'm
from Hertfordshire and I have a permanent ileostomy so get my prescriptions free. However, just recently we received a letter stating that things like stoma sprays, belts and non-essential items will no longer be available via prescription. I can see why that is the case with the financial struggles many local trusts face. We also have to get our G.P to issue the prescription direct to the delivery companies and have them delivered on a monthly basis.

So I'm curious as to how you get your supplies. Do you have to pay for all your supplies? If so, is it very expensive? How often do you get your products?

Thanks : )
04-09-2012, 06:08 AM   #2
shazz
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Hi Dmac,

I live in plymouth and have only just had my stoma, 9 weeks post op.
At the moment I have to pay for all my supplies as its not a permanent stoma. I have had pre payment certificates for the last few years due to being ill. It costs me 100 for the year. Considering the last lot of prescriptions I had from my gp would have come to just over 103 I think it is worthwhile for me.
I get all of my supplies - bags, belts, wipes, sprays and such all on prescription. I use saltsmedilink and they do everything for me. I just phone up when i need more supplies and they sort it.
Its wrong to say some things are non essential as they may be so to one person but someone else may rely on those things to cope.
I think if you have a permanent stoma anything, within reason, should be available on prescription.

Xxxxxxxxxxxxx
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04-09-2012, 06:13 AM   #3
Samboi
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$50 per year for membership of the local ostomy association.
The government very generously pays for all of my supplies.
These are generally around $500 per month.
I pick up my supplies monthly from the local association.
They will mail them for about $10. But I like visiting for my pick up.
And of course - they have the most gloriously appointed bathroom!!
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04-09-2012, 07:03 AM   #4
DMac
 
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[shazz]Hi Dmac,

I live in plymouth and have only just had my stoma, 9 weeks post op.
At the moment I have to pay for all my supplies as its not a permanent stoma. I have had pre payment certificates for the last few years due to being ill. It costs me 100 for the year. Considering the last lot of prescriptions I had from my gp would have come to just over 103 I think it is worthwhile for me.
I get all of my supplies - bags, belts, wipes, sprays and such all on prescription. I use saltsmedilink and they do everything for me. I just phone up when i need more supplies and they sort it.
Its wrong to say some things are non essential as they may be so to one person but someone else may rely on those things to cope.
I think if you have a permanent stoma anything, within reason, should be available on prescription.

Xxxxxxxxxxxxx
Thanks for the response. Yeah, i can see it makes perfect sense for you to pay the yearly fee and I totally agree that to some people things like sprays etc... are essential. I guess my local PCT has to balance the books and it seems that those items are taking a hit. I hope this doesn't extend to other items.

I use Amcare and they're great, but I have also heard excellent things about Salts. So you're in good hands there : )
04-09-2012, 07:07 AM   #5
DMac
 
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[Samboi]$50 per year for membership of the local ostomy association.
The government very generously pays for all of my supplies.
These are generally around $500 per month.
I pick up my supplies monthly from the local association.
They will mail them for about $10. But I like visiting for my pick up.
$500 per month is quite a lot. I guess it all adds up.
And of course - they have the most gloriously appointed bathroom!!
Always a good thing. Nothing like a fantastic bathroom. Thanks for responding : )
04-09-2012, 11:51 AM   #6
Terriernut
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I get mine free....for now. But my NHS trust is cutting back as well. I can certainly understand why though.

Thank goodness for the NHS. I dont know what would happen to me if we didnt have Health Insurance.
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04-09-2012, 01:44 PM   #7
Nyx
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I pay for all of my supplies out of pocket. I'd guess I spend about $100 month on them. Fortunately I don't need any sprays, rings, or paste so I save some money there. I also wash out and reuse my bags so I save more money there as well.
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04-09-2012, 02:38 PM   #8
PsychoJane
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I receive 700$ a year from the govt because it is a permanent stoma. The rest would be 80% covered by most insurance companies and plans if I were to have a private insurance with my job which is not the case since I am a student at the moment. So it depends of the year, sometimes I have been real good on saving on the material and having it last as long as I could without having issues so I would only have to pay ~200$. That's by reusing product. I don't know how I could afford to throw bag after each use... Doing that would put my expense at around 250$ a month...
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04-09-2012, 03:13 PM   #9
DMac
 
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[Terriernut]I get mine free....for now. But my NHS trust is cutting back as well. I can certainly understand why though.

Thank goodness for the NHS. I dont know what would happen to me if we didnt have Health Insurance.
Agreed : ) The NHS has its problems, but it does so many things wonderfully well. I too am hugely appreciative.
04-09-2012, 03:20 PM   #10
DMac
 
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[Nyx]I pay for all of my supplies out of pocket. I'd guess I spend about $100 month on them. Fortunately I don't need any sprays, rings, or paste so I save some money there. I also wash out and reuse my bags so I save more money there as well.
I applaud the fact that you recycle your bags and use them more than once. Imagine how more environmentally friendly it would be if we all did likewise. I must admit I don't, nor have I even considered it. We do have a special refuse collection that we can opt into and that allows the bags to not be thrown onto the general waste sites (similar scheme to that of used nappies) and I take advantage of that. I also make sure my bag is empty before I dispose of it. I know that sounds like commonsense, but for the longest time I didn't really give it too much thought. I read an article by a stoma nurse and that really highlighted it for me.

Appreciate the response : )
04-09-2012, 03:32 PM   #11
DMac
 
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[PsychoJane]I receive 700$ a year from the govt because it is a permanent stoma. The rest would be 80% covered by most insurance companies and plans if I were to have a private insurance with my job which is not the case since I am a student at the moment. So it depends of the year, sometimes I have been real good on saving on the material and having it last as long as I could without having issues so I would only have to pay ~200$. That's by reusing product. I don't know how I could afford to throw bag after each use... Doing that would put my expense at around 250$ a month...
Thanks for the response : )

That's why I asked the question because I had a feeling some people have to pay for some or all of their products. It certainly makes one think about how much we take for granted. I remember watching a documentary about prison life somewhere in South America and there was an inmate with a stoma, and he literally had a small cloth held underneath the stoma to wipe away the discharge. I remembered feeling really awful about the fact I have so many products and assistance at my disposal. I sometimes forget how fortunate I am.

Again, I applaud the fact that you do use your products wisely and think carefully about how you can stretch their usage. Sure gives me food for thought. Appreciate it : )
04-09-2012, 03:40 PM   #12
Terriernut
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DMAC after surgery and when I returned to work I had to use two bags every day to begin with. One smaller for work and one larger one for at night. It was awful at the time as my output was quite high at night. Now for instance today, I have the same bag on even after a nice hot shower this morning, and I will keep it on (2 1/2 days) and yes, a two piece system, in order to save the NHS money. I think personally that when you first have the surgery and output is high, you need a bit of extra help. But when it settles we can all try to save and get extra 'work' out of our bags and appliances. Only if possible....dont leave a base plate on more than 5 days folks! (if you do you may cause yourself problems)

I'm from America originally, and frankly, I am very glad to be here in the UK (for 14 years now) because if I were there, I dont know what I would do. Well, I think I'd be dead actually, because I couldnt have afforded to have surgery! (emergency)
04-10-2012, 06:25 AM   #13
DMac
 
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[Terriernut] I think personally that when you first have the surgery and output is high, you need a bit of extra help. But when it settles we can all try to save and get extra 'work' out of our bags and appliances. Only if possible....dont leave a base plate on more than 5 days folks! (if you do you may cause yourself problems)
That's a fantastic point. I would never judge anyone on how they choose to use their products or even dispose of them. I totally agree that when things are new or if we get into a routine, then its not as simple as saying that I will try to be more considerate of NHS costings or the environment. It doesn't always work like that. It didn't for me. I went for many years without giving it much, if any, thought. I have to occasionally change mine twice a day. I have always used a one-piece. So I could try a two piece and that may very well be more environmentally/economically friendly, but I am so used to doing things a certain way. I do think that is the norm when it comes to those of us who have a stoma.
04-10-2012, 12:14 PM   #14
Misty-Eyed
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Ooo who was your letter from? I've not heard about it! Is it just a Hertfordshire thing? Good job Hertfordshire is too expensive too move too in that case!
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04-10-2012, 12:51 PM   #15
DMac
 
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[Misty-Eyed]Ooo who was your letter from? I've not heard about it! Is it just a Hertfordshire thing? Good job Hertfordshire is too expensive too move too in that case!
Hi..

I live in the North East Herts area, that covers Hitchin, Stevenage, Letchworth and surrounding areas. I'm not sure if any other surgery sent out that letter, but my one did. I'm not sure if this is something that will, in time, spread to other trusts, but it seems to be going the same way it did with items like Hayfever medication, which is no longer available via prescription. Its a cost cutting initiative and "non-essential" stoma supplies are seemingly too expensive for my trust.

This will hit many people in the pocket, because sprays, thickeners, belts and other items are essential for many people.
04-10-2012, 01:06 PM   #16
Terriernut
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I didnt get a letter. But when I ordered supplies last month, Alphamed told me that things were 'changing'. I wasnt to order 2 months supplies, I was to order 2 weeks in advance, for a monthly order. When I asked for wipes they sent me the old stuff that is awful on our skin, and they only sent one package. (might as well use kitchen rolls folks) I only lucked out on getting the large and small bags because the small bags I got in Jan were faulty.

I do use two different bags, but not on the same day anymore (thankfully) But, I have to say, I can understand why things have to be cut back. I just think we shouldve NOT saved banks and perhaps saved our truly sick and infirm! (sorry for the rant folks)
04-11-2012, 08:06 AM   #17
robbo87
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At the moment I don't pay for supplies or prescriptions, and if anything is changing I am yet to be informed.

My stoma isn't "permanent" as such, but I do have a medical exemption certificate, I was advised by my nurse that any stoma is permanent until the surgeon says otherwise... and either way my gp agreed and signed the form. otherwise I would be spending an absolute fortune on prescriptions and supplies.
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04-11-2012, 10:39 AM   #18
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I've have a permanent ileostomy since 1997, I get all my supplies free and haven't heard anything. I'm in Yorkshire. I have a 2 piece that I change every 3 days, I don't use sprays or pastes or anything other than babywipes, which I buy myself. I couldn't imagine having to pay prescription fees for this that must be hard.
04-11-2012, 12:59 PM   #19
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I have to pay because Im working I get the yearly NHS prescription card. without it my monthly prescription cost would be around 40
04-11-2012, 01:05 PM   #20
Spooky1
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I think the brits must check online. i researched recently who qualifies for free scripts. if you have a fistule you get everything free. look up medical exemption charges. its worth looking into.
04-11-2012, 01:39 PM   #21
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happily my fistula was sorted.....unhappy because that means I pay! win some lose some
04-12-2012, 01:00 AM   #22
kossy
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I have to pay all out of pocket for everything. It's just under $200.00. That includes bags, pastes, powders, sprays.. and so on.
I lost my health insurance last year and with a "preexisiting" condition only one insurance company will cover me. Sadly I can't afford the monthy fees. I tried several times to get goverment aid and have been rejected for making to much money. But this is a whole other story.
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04-13-2012, 03:56 AM   #23
DMac
 
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[robbo87]
My stoma isn't "permanent" as such, but I do have a medical exemption certificate, I was advised by my nurse that any stoma is permanent until the surgeon says otherwise...
That's interesting because when I had my temporary ileostomy, I had to pay for all my scripts (Purchased a yearly one). I had no idea, as I'm sure many others don't, that that loop hole exists. Thanks for sharing.
04-13-2012, 04:12 AM   #24
robbo87
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That's interesting because when I had my temporary ileostomy, I had to pay for all my scripts (Purchased a yearly one). I had no idea, as I'm sure many others don't, that that loop hole exists. Thanks for sharing.
I wouldn't take my word on it, and im not even sure its a "loop hole" as such I just wasn't sure what to do but when I told my stoma nurse that I was paying for all my prescriptions she went mad and told me to apply for it so I did. My doctor must have agreed anyway because he had to sign it.

It's nearly 9 months on now and I'm still no nearer having a possible reversal and seeing as i've not yet been able to return to work theres no way I'd be able to afford prescriptions.Just to add tho, I think because of the ESA that I receive I think im entitled to free prescriptions anyway. But its all so hard to understand.
04-14-2012, 08:57 PM   #25
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Like Nyx I am in Ontario and unless you have private insurance (which of course unless you are working or your spouse has a job with insurance, which of course is negative for both in my situation), you have to pay for all of your supplies out of pocket. The government gives a yearly "allowance" of $600.00. My monthly bill is approx. $150.00 -$200.00 depending on my luck with my base plate. I have a rather flat stoma so I need convex/rings/paste etc.... all the time. I also use things for as long as I can 5 days ave if lucky. Oddly enough, it is the opposite here, if your ostomy is temporary your supplies are totally covered....WTF??? At least the majority of our health care is free and most of the time top-rate =)
04-14-2012, 09:07 PM   #26
glum chump
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I'm in Canada, also, but unlike Neko and Nyx, our BC health plan is different from Ontario. Our costs are based on income, and since I have a horrendously low income, my deductible is $250, and after that, my supplies are covered by the medical plan for the remainder of the year. It covers my essentials: bags, flange, belt, barrier ring and adhesive remover. I am so thankful and grateful.

And yep, most of the time, the medical service I receive is fantastic. It's not the health care plan's fault that some doctors are supreme jerks!

Kismet
04-14-2012, 10:20 PM   #27
Nyx
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I get the $600.00 annual grant for having a permanent ostomy as well, but they give it out in 2 installments of $300.00 and is pretty much useless (I suppose it's better than nothing...but still). I don't have insurance, and my fiance is self employed so doesn't have insurance either. Prior to my surgery I was supposed to go on Remicade so I applied for Trillium (the government insurance program) and the deductible was going to be $3000.00 (my fiance makes pretty good money). They almost denied me coverage because my fiance makes good money...but almost $10,000.00 a pop for drugs is waaaay out of our budget...I'm almost glad I burst my insides and got the ostomy instead....lol
04-15-2012, 08:04 AM   #28
DMac
 
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[Neko76]Oddly enough, it is the opposite here, if your ostomy is temporary your supplies are totally covered....WTF???
That does seem odd, but I guess they're assuming they will only have to pay out for a limited time and can afford to do that. What on earth happens to people who are very poor and use products on a daily basis?

Thanks for responding : )
04-15-2012, 08:47 PM   #29
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Hey Nyx, I have the Trillium drug plan, but I assumed it only covered Rx drugs (I.e. it doesn't cover dental), does it cover Ostomy supplies ????? I might actually be a complete idiot if so...lol. And yes $600 is totally ridiculous!!!!! It hasn't changed in over 20 years so I've been told.

Kat
04-15-2012, 09:44 PM   #30
Nyx
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Hi Kat, I don't know if Trillium covers ostomy supplies or not, as I don't have it (didn't need the Remicade so they stopped my coverage almost immediately). Would be worth looking into though for you!
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