What do you wish you had known before living with a stoma?

I agree about wastage…but although the NHS won’t take unused supplies back there is a charity which does, called Jacob’s Well based near Hull. 

I get far too many complimentary items, and haven’t been able to stop them coming despite asking not to get them, so I donate them to a charity which sends supplies t Ukraine. The waste of money to the NHS is very aggravating though. 

Changing companies is very straightforward-I’m on my 3rd and best now so am unlikely to change again.

Sarah xx

The system is changing (I volunteered to be on a panel discussing stomas with consultants to the Government earlier this year) but in my case the current process is:

• Stoma nurse writes the prescription .
• She sends that to the GP and isn't involved again unless she decides to change the prescription eg if I become allergic to something (when she approves any changes needed in future in a revised prescription)
• I order through the delivery company which contacts the surgery with my list to ask them to prescribe so I can have the stuff.
• The GP approves the list if it matches the current prescription and replies to the delivery company, (My GP tells me they do their best to send it straight back).

But, eg once the night bags I used were discontinued. I didn't know, neither did the nurse, the GP doesn't know anything about night bag specifications. The delivery company only told me about it when I tried to order the usual ones but couldn't tell me which of the other available bags I should get the nurse to prescribe for the future. She was on holiday... Eventually that was sorted out, just in time, fortunately.

And then, just after I put in my regular order (including O-rings that had been prescribed months before), the nurse and I decided to stop using them because they were blocking my stoma outlet and building up mucus. - leaving me with 3 boxes of redundant rings that I eventually gave to the nurse, keeping 1 in case I had to restart with them later on. I could continue. My surgery's budget was presumably affected. And the nurse may have just given them to the stoma nurses who collect unused stocks for use in war zones etc. That's probably a good thing of course. My keeping boxes of useless stuff would not have been cost effective and have taken up too much space.

During the panel I mentioned, other stoma users told us that on cost grounds their surgery has suddenly refused to order eg deodorising tablets for those with Colostomies. which means that during work meetings people think they are farting - very embarrassing. Those users currently facing push-back from GPs made the rest of us very worried.

And don't misunderstand me, I want to save costs - It was my professional duty in the past - but not for petty reasons that make patients more uncomfortable. After all, our stoma keeps us alive, but we shouldn't feel embarrassed by it, should we?

What I suggest would be a reduction in stages (manpower) and fully auditable. It should also be quicker to service, although if smaller companies can turn orders around in under 3 days I can't see why they all can't.

None of us wants to have to worry that someone who doesn't understand how nervous one gets when the delivery is delayed could be causing extra delays, I'm sure. 

All the best,

Latestart

Thanks. Yes my stoma nurse mentioned Jacob's Well. I may try that in future and also changing companies.

I also heard that there are companies that do all the ordering for one at the appropriate time, chasing deliveries etc. Though they seem to be quite local to certain parts of the country.

All the best,

Latestart xx

I was the same, Kath. I had no idea about the relationship between the hospital and preferred suppliers so just accepted for me it would be Fittleworths. They weren’t bad really, but I got lured away by something I read about Bullens and changed to them. Turned out they were awful, got orders wrong, forgot about orders etc, so I changed suppliers again. 

I found there was no information given about how to order supplies etc, and my stoma nurses at the hospital were very poor-I was discharged without ever having been shown how to change my bags. Once I was home my stoma nurse in the community was brilliant and I got lots of help and advice from her.

Sarah xx

At lest with Jacob’s Well, you know that the supplies will be used. No point in boxes of stuff languishing in cupboards in our homes and going past their expiration date! 

Sarah xx

I learnt about the supply chain in bits and pieces initially, but then I started to ask questions and learnt more. I sound confident now about stomas and how to deal with mine, but much of that took a while to accumulate. I can't imagine how it would feel to be told nothing about how to change bags before I left hospital. I've known some very good stoma nurses, luckily. 

I think that's the least we all deserve.

All the best,

Latestart

Thank you John007   Yes, it was a struggle at first - a bit of a sink or swim situation, especially since they discharged me on a Friday afternoon with 3 pouches, some dry wipes, half a dozen disposal bags and a can of adhesive remover (which I was to use sparingly as I wouldn't get another) and a parting shot of "someone will call you on Monday".  I had no idea if I was coming or going at that point.  I can laugh about it now but it definitely wasn't funny at the time.  So, a few phone calls from the hospital over the next few weeks, constant leaks, no face-to-face appointments with the by now in place stoma nurse. She kept sending samples, all flat bases, and I kept getting leaks. She had never seen my stoma to be able to judge what I needed. In the end I just phone up different makers, explained my dilemma and, luckily, I was able to persuade one company to send out some soft convex samples.  Bingo - problem solved.  When I phoned the stoma nurse to ask if I could change to these permanently she said "no" because I haven't seen you in clinic! As I was heading abroad a couple of weeks later I insisted on being seen, got an appointment for the end of that week, and she agreed to the change. All in all it took 4 months and that's the only appointment I had.  Mind you, only 1 stoma nurse covering a very large geographical area, 400+ patients on her books and no community team. Couldn't have been easy during covid.

I hope that you are managing better now and have a good routine going,

Hi Jane

There were complaints about Coloplast pouches on various other forums and, from what I saw, Coloplast seemed to deny that there was an issue.

Respond are really good by the way.  The ladies who phone are lovely.

I wish we can something like an appliance management service - it sounds very helpful.

Latestart xx

When I was told I would automatically be transferred to this appliance management service I was sceptical because it felt like another layer to the process which didn’t seem needed. The service is part of Connect Prescriptions.

However, it has worked well for me. The service has a stoma nurse, and an annual review appointment with her if required-this can be done by phone, video or a home visit. She can also authorise changes to my prescription at my request, and the prescription coordinator always asks me if everything has been ok since my last order and if I require any help from the nurse. My scepticism has gone!

Sarah xx