Ordering Stoma Products

Hi Twirly,I have had problems with the GP’s.When I first had a urostomy someone from the practice was grilling me on the phone about the stoma bag usage,She was really aggressive it was a horrible experience.I have had items refused before now.I hope your order is allowed.Jane x

I'm so sorry you were treated like that, thank you, hopefully they'll allow the new order to go through.

I hope you do get what you need.It’s not as though we can do without the bags.x

Thank you, yes exactly.

After surgery the stoma nurse explained in plain terms how a pouch should be managed. She was very good. She suggested a particular type of drainable pouch that should be changed every 48 hours, plus an adhesive remover spray, adding that the spray should be used carefully, with only the minimum amount necessary. I understand that the spray is expensive. I require other prescription items not related to stoma management and have learned not to over-order supplies. Best to order 28 days' worth of items at a time as a suggestion, although stoma pouches arrive in boxes of 10, which in my case last for 20 days so I order two every 40 days. The GP surgeries have a duty to reduce waste within the NHS and I suspect there are many people in the UK with cupboards filled with medication and all the rest of it as a consequence of repeat prescriptions being churned out whether the recipient uses the stuff or not. My GP surgery assesses my requests on the basis of timely need - checking dates against previous prescriptions - and it works well.

Incidentally, my stoma supplier advised me the other day that the remover spray will be changed to an alternative on cost grounds. I was assured that it will still work OK. I have found that if the stoma nurse supports a patient's request for something not usually prescribed then the prescription is approved. With respect to admin staff who tend to mostly deal with pills each day, they do not fully understand the routines and requirements of those who have a have stoma, complicated further by the different types of pouch available and the frequency of stoma management. It is a subject that is not generally discussed and is restricted to anonymous pages such as these.

Dulac

I was advised to reorder once I got down to one box. 

I was told that once I'm down to 3 weeks worth I should re-order - my supplier takes at least that time to resupply me sometimes. We have touched on this area in another part of this forum -  I think it's called 'What I wish I knew before having a stoma' or something. The NHS is prompting surgeries to question things more on cost grounds but if you have any problems do  talk to your local stoma nurse as the GP should listen to her/him. 

Someone mentioned sprays - they are expensive, but, in my case I would have to resist hard if they wanted to change them or the bags - I was originally prescribed sprays and bags in the hospital after a skin test. The stoma nurse at home swapped them out for another brand - Stoma nurses in the community were outsourced some time ago and are now employed by a supplier/delivery company so use their products.

I foolishly went along with them (despite telling her I was allergic to lots of things and ended up with awful rashes around my stoma that needed steroid lotions to clear up (mostly) and I got the nurse to re-prescribe the bags & sprays I had been using.

Even now, 3 years later, nearly my skin remains red and itchy in patches. It was an awful experience. 

This is what we all need to watch out for in future. If you can talk to the person in the Surgery who approves your prescription before the delivery company supplies it, it can be helpful. I tried to find out who it is n my area but failed until I ended up talking to someone doing a medication check who asked me to ring them. When I did I was able to tell her about our experience and she was horrified. If you have never had a stoma or had sensitive skin a simple change or delays in getting things approved can seem unimportant. but it can mean we are unable to leave the house or feel comfortable.

All the best,

Latestart

If the GP staff were told that you were going to limit the number of sheets of toilet tissue they could use each day there would be uproar. Same difference.

Dulac

Very good point, Dulac! 

Sarah xx

Hi Twirly,

I have not had problems getting stoma products over the years, but I have had the GP practice be very poor and unhelpful on other cancer matters. I once escalated a matter to the Practice Manager - some surgeries have the Practice Manager's email address in their contact details. But I think always best to speak directly, I just told the receptonist I was distressed and was not getting the help I needed and wanted to see the Practice Manager. Well everything was sorted & I got an apologiy. If you don't get a good response from Practice Manager talk to the GP. This is not a 'nice to have', its essential - and they have a duty of care towards you. And currently they are failing. 

You cannot not get what you need for a stoma. Its like asking a 'regular' person not to go to the toilet. Also ask them to put a flag on your record so it does not happen again in the future. 

What i've realised its sometimes uniformed people making silly decisions - not thinking. If one highlights one's problem and why you need help, things happen. 

Good luck!