Stoma supplies

Hi Julie1966

This is appalling I’ve never heard the like. Honestly I am flabbergasted 

I used to phone Coloplast and my GP okay the script. I was allowed to order only two items, that I was told by the stoma nurses so I always had Eakin slims and convex bags. 
Can you change your GP or can the stoma nurses sort out the products?
My blood is boiling. How dare they say your medical needs are a luxury. It’s a shame you can not lock their bathroom door see how they feel with their luxury not available 

I would check that you are allowed two products per order with your doctors and order asap. 

Second thought have you tried Sensura Mio? I couldn’t wear the flat type as my skin flared up instantly but the convex were perfect. 

I really hope that you have some support from your GP as it sounds as if there are issues there. Maybe make an appointment to see your GP face to face, it could be a admin issue 

Or a Rottweiler Receptionist 

Hi Julie1966 

I haven’t had such problems but I really feel for you as I’ve had the odd issue here and there. Nothing as serious as what you’re experiencing. 

We all know stoma supplies are expensive but they are NOT a luxury, they’re a necessity for us to be able to live our lives. Of course the people making these arbitrary decisions will not have experienced life with a stoma. Do they tell people of thyroid medication they must have reduced supply of it? Or insulin? There is still much ignorance even in the medical profession about living with a stoma, 

I would push with the community stoma nurses to be firmer with the gp practice, telling them in no uncertain terms what you need. If that didn’t work, I’d look at changing my gp practice if this is an option. I’d complain again to the practice and want a face to face meeting-we need to stand up for ourselves and be vocal when our needs are not being met in this way. 

I hope you can get a resolution-I was battling just last week to be allowed 2 cans of adhesive spray remover which must cost pennies, when I was sent a load of supplies of urostomy bags I hadn’t even ordered which would have cost hundreds of pounds. I have 2 stomas so one can is not enough. It wasn’t an unreasonable request and finally it was granted after I made yet another complaint. I do make myself heard by complaining when things aren’t right! I always go to the most senior person I can find, stay calm and reasonable and so far that has worked for me. But we have enough to deal with in our lives without things being made more difficult for us. 

Sarah xx

All I can do is agree with the others.never heard anything like it.

I know different gps work in various ways.mine for example wont take an order from the delivery company.they insist on me ordering a prescription from the gp who then send it electronically to the delivery company.they say it is because in the past people have over ordered so they like to keep an eye on things.fair enough and it works even if a bit long winded.

They have certainly never said stoma supplies are a luxury.

I do hope you can get this sorted.you dont need the extra hassle

Kath

Thanks everyone for your support.

I received my supplies today and I did receive an appropriate number of baseplates thankfully.

i’m investigating the other practises in my area with a view to moving and I’ve requested a meeting with the practise manager to discuss the issue. 

The stress of arguing for supplies is over for another month thankfully.

Well done Julie1966 

I hope things can go more smoothly for you in the future.

Sarah xx

That’s really good news but it should be a given. I hope that your practice manager is empathetic to your needs and that you can find a more caring practice 

Thats good to hear.I do hope you can get it sorted for the future ,then you dont have this worry every month

Ksth

Thought I’d update this thread.

I’ve finally had a delivery which was correct without having to argue with my GP surgery.

no response to my complaint tho, so I’ve referred the issue to NHSE

Hi Julie1966

I am waiting for APR surgery to have Colostomy and anus removed. I'm on the Anal cancer forum. 

Although I'm a prescription clerk at a local GP surgery and deal with All prescription requests from all companies.

It's not down to the receptionist or clerk to decide.   "luxury item" how dare they say that. I would be guided by the stoma nurses recommendation to what items are Required by patient. If I had to query from Pt I would then email the stoma nurses myself for advice. The Dr's at the practise also Do Not know  what items you require. They tell me to add to script what Stoma Nurses letter states. 

Unfortunately my experience of the companies who request items for patients, tell pts I hadn't issued, when I had and it was apparently lost in post when I would ring company, then all sudden found by companies. 

I would always make sure I was prompt doing these scripts and always kept copies of requests due to errors. 

Hope this helps you and you manage to get what you are due. Jinnie x 

Thanks Jennie. I’ve moved to ordering on the NHS app directly with the GP and emailing the delivery company telling them a prescription will be with them in about a week. That’s working better (2 months) correct which is a relief.

Not sure why doing it the other way around was such a nightmare but at least it’s less stressful now.

hope your surgery goes well when it comes

julie