I have a bee in my bonnet about GP approving stoma prescription!!!

Hi Peacock,

It would make more than my blood boil! It's not as though these supplies are something that we can make last or do without. Nor can we muster up something to use as a replacement. Why don't you contact your stoma nurses and ask them to contact your GP on your behalf? It's obvious that your GP doesn't have a stoma.

I think we all get a bit anxious at this time of year regarding out stoma supplies, and we don't need a GP deciding what we do or don't need. Hope you get it all sorted out.

Linda x

Peacock62

If you have a bee in your bonnet, I must have a swarm of bees in mine!

Don't think I'm defending the GPs but they are working under instructions from the local CCG who in turn are working to the "guidelines" set by NICE. One of the definitions states "Guidelines - a piece of information that suggests how something should be done." As I have said to my GP guidelines are just suggestions and not set in stone.

I prepared a spreadsheet showing all of the items that I use monthly with the number I use on each change and discussed it with her and it was put on my repeat monthly ordering schedule result this week an item on my list that I use 5 boxes of I was prescribed two and they had to issue a prescription for the remaining three all at frustration to myself and turned a money saving exercise into extra expense for the NHS.

When I presented my spread sheet to my GP each item had a price beside it, the GP asked what the figures meant to which I replied these are this months costs taken from the current drugs tariff applicable to ostomy items. On my list I had two items which were duplicated, pouches and adhesive Remover and explained to her that I would be ordering my preferred items not the items suggested by the hospital stoma care nurse (my stoma nurse is not hospital based but a community one). My preferred pouch represented a saving of over £1000 per year and my preferred adhesive remover represented a saving of £24.00 a year but it was my choice to use them not the GP, not the CCG, and not NICE it was mine as the daily user.

The answer to the question is simply NO they don't understand what Living with a Stoma means  they understand the principle of why we have our stomas but not why we use the products we do but its not only the GP it can also be the nurses who don't understand, they've been taught the very basics of stoma management but that's all and they want to practice their skills. I am writing this from a hospital bed and since my admission last night I've had 4 nurses at my bed all saying the same thing "Let me know when you need to change your bag and I'll do it for you" so far I've not needed to change but I'm keeping quiet in case someone wants to "Help me"

Back to this swarm of bees that we've uncoveredta situation which is not going to get any better and in fact one of the suggestions being discussed is that the CCG look at the products you use and prescribe the cheapest available product without any regard to the effects it could have on our skin and I know of two areas where it is being trialled and hailed as great success by the people who don't understand anything about Living with a Stoma so what can we do about it.

We can have a discussion with our GPs and explain why we need the essential products that we use and how many of the item we use on a daily basis/change.

We as, Linda says, speak to our Stoma Care Nurses and get them to give us their approval to the items we use and give this to our GP as his authority, of course keeping a copy for ourselves.

We must make our voices heard and everyone please don't sit back and accept less that you are due - need after all we've come along way from the days that, in this country, we had to use crude containers, sponges or dirty rags to collect out poo

And they tell us not to stock pile and wonder why we do.

Hope you managed to get your blood to stop boiling now.

Ian

p.s. on the bright side you may get your reversal soon as this will all be a thing of the past, alas for me it's a ongoing battle.

Just to be a little frivolous.

As I mentioned above I'm currently in hospital bed bound and I've just had a nurse come to my bed asking about my output being watery, I've got an ileostomy I tell her again, oh she says with a straight face you've got an ostomy I wondered how you managed to empty your bowels into a urine bottle!!!!!!!!!!!

Just how do you answer that one  think it's another quote for the book I'm thinking about writing.

You've got to laugh, don't you.

Ian

Thanks that's a great idea I will call my stoma nurses on Monday, I've just got in after having an x ray and looked at my GP online and after my call to them this morning they have approved another single box x 5 of barrier cream so that will be 10 I've got now not even enough for the 12 days of Christmas.  Well my blood will have to go on a simmer over the weekend as the surgery is now shut .I won't give up till they get it right

love Peacock62 xxx 

Hi Ian 

So sorry you are in hospital, and thankyou for finding the energy to reply to my post. Yes I know what you mean about all the costs and the protocols the GPs have to follow but also know they are just guide line , I think our GP practice is particularly tight. Last year when my husband had lost a lot of weight with his cancer of the bladder the hospital advised him to get ensure from the GP. Well he went to the GP and was told he hadn't lost enough weight!! He was only a couple of pounds off the required loss amount ! It's false savings really . 

I know I will eventually have a reversal ( I find out next week wether I need ) but I am going to make it my mission to make them understand !! and will not take this lying down . 

Had an X-ray today and because I look so well I have a badge from London transport saying please give me a seat. Well it worked on the way there and back in the rush hour yippee! restores my faith !

I hope they are looking after you well in hospital and wish you a speedy recovery 

Lots of love

Peacock62 xxx 

Hi Peacock62

I honestly think we should all make it our mission in life to make our GPs aware on what exactly it means to be an ostomate.

In life I have lots of stories about my supplies and like everyone else I am subjected to an annual medicine review, a few years ago my practice employed a clinical pharmacist to do them and whilst I was having mine she asked why I needed support underwear, pause whilst jaw drops, being not ashamed to get my bag out I whipped mine out and showed her the large melon I carry around with me under my bag, she answered oh my dads got a bag and he has a hernia I didn't know he could get Support garments on prescription!!!!!!!!! Do you mind if I take a note of the items you are using so I can get some for my dad, all the time I'm thinking to myself and she is employed to do my reviews  I don't think so she is employed to cut back on the budget.

Lets stand up and be counted.

Over the summer months I was invited by my local health trust to complete an online survey on ordering of ostomy products and make comments of what I could see to make it easier and for every question the answer was the same Educate the GPs and their staff on what it means to be an ostomate and why we need products.

I fly my bag whenever I can to get the message out.

Glad your TfL blue bus badge helped, I've got the badge and a credit card type one, I've also picked up a series of cards with different messages,

Please wait until seated

Priority seating required

plus a few that I have worded myself

All of which when I travelled on public transport were very useful like Urgent Toilet cards they are a must for anyone with a hidden disability.

I hope that your xray results come through with some good news.

Keep pestering your GP, I know I do and I hope everyone else reading this does so also, otherwise our supplies will be cut to the bone and leave us helpless.

Ian

Yes I totally agree with you Ian , the GPs must be made to understand , I love your story about your prescription review ,talk about getting people who know  what there talking about doing a job, In my job I am expected to know what I'm doing ! 

I love the term flying my bag shall remember that one, 

I almost wish I could take my bag off in the surgery and ask them what I'm supposed to use as I have no supplies left !! Lol  

I'm going to keep on and not take no for an answer 

Love Peacock62 xxx

Hi Peacock62

I'm sorry you’re having trouble getting supplies. It does sound like a postcode lottery with your experience. I’ve been incredibly lucky. The stoma nurses changed my type of bag to a convex one as Iept getting leaks. I phoned the supply company who had delivered my first order only a few days earlier, fully expecting a fuss. I explained what had happened and she just said okay! My doctors senthe new prescription on the Wednesday (2 days after my phone call), and my new. Again arrived on the Thursday. I’m so grateful that I’m due for a reversal next February fingers crossed. How are peoplsupposed to get on with their lives if they can’t get the supplies they need? Makes me so sad and angry. Keep up the fight.

Hi Jools63 yes it must be a postcode thing and also the GPs doing the prescriptions just don't understand how it all works . I got onto them thismorning took ages getting through then getting past the receptionists finally I got a doctor to call me back,I now have everything ordered should be coming tommorrow. So all ok till the next time I order I will keep on at them till they get it right.

how are you recovering from your op I hope you are slowly getting there. 

Love Peacock62 xxx

Hey lovely to here from you Peacock62. I think I must be incredibly lucky. I have already been driving for a while now, and my stitches disappeared leaving me with just a line! I do get tired, but adoing all the things I was doing before surgery, so really can’t complain. I hope all of you lovely folk can get some luck, especially in sorting out supplies. My GP actually has a friend living wita stoma, so he really does understand. No amount of courses can help them to really get it! Wishing you a lovely and uneventful Christmas.