Having found that my husband gets on well with the convene after using a weeks supply of samples the incontinence nurse faxed through to GP a request for prescription , this prescription was then sent by surgery to chemist. When I went to collect the items I was given a months supply. Of convenes and wipes and NO bags. The pharmacist said she had not received prescription for bags and so could not dispense them.!! These blips are what we carers could do without.
My moan is .....where is the common sense , firstly by doctor who is prescribing and pharmacist when dispensing, why not give the surgery a call and ask if this is correct with no bags??? Consequently we are now waiting the obligatory 3 days for prescription, then chemist has to order them in. Nothing is simple .I could scream.Now I am back to changing bed 3 times a night after a brief spell of bliss!
Just having a rant . Hope you all have a good day xx
Written by
gypsywoman1947
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If you found ones that work, don't change them, is my advise! They messed around with S, saying there was better out there in the market place, after that couldn't get any to work. Now has a catether fitted. No wet beds or constant wet trousers! Bliss. Of course we have the extra risk of UTI's, but I can't think it's much worse, than the non draining and living in wet underclothes can bring!
We had a blip at the beginning similar to yours but then I had a phonecall from the suppliers saying the prescription should never have gone to the chemist but should have gone direct to them. They sorted it out with the GP. Now the supplier rings half way through the month to see how many we have left, they then request a prescription from the GP and a delivery is made by van. One came to us this morning with convenes, preparation wipes, plastic disposal bags and spray to get them off. We get 3 months supply of leg/bed bags at a time. The supplier has told me that many GPs give a repeat prescription but ours gives it after monthly requests. The surgery as Addressed envelopes to send the prescription to the supplier.
Stick with it. Ask the continence nurse if they will come from a supplier. In our case, it was the fault of the GP or his secretary/ receptionist/nurse, sending the prescription to the wrong place.
Oh I feel for you, gypsywoman! The sleeplessness and perpetual laundry nearly did me in. He couldn't use the convene, and the catheter was problematic, and he hated it.
But I just had an uninterrupted night's sleep. Amazing! I now have my guy wear two pairs of incontinence briefs with a pad. I poke holes in the pad, or guard, and the first brief. I don't recall which one of the geniuses here recommended this, but for us that advice has been miraculous! It wicks the urine through the layers. I use a disposable bed pad over a washable one, and the disposable one generally is needed, and is disposed of. The washable one is insurance now. Sometimes I have to change him once in the early morning. Only occasionally more. It has gone from being a nightmare to being manageable. All because of the help I was given here. (Thanks, whoever you are, if you are reading this!)
I hope you get the supplies sorted soon, gypsy. But I pass along the good advice, just in case it might help you until then!
AAAAAAhhh tha'ts my scream for you. Thank you for sharing that tidbit. Cuz you know, there is someone out there about to decide their mate needs to use this product ; and about to ask the dr for a script. Now, with your rant, they will know exactly what to ask the dr for.....so if I may, here's the list a carer needs to ask the dr to call into the pharmacy:
One month supply of
Convenes
Wipes
Bags
and an instant supply of common sense to all parties concerned!
Next part to the story.........called to chemist to see if by any chance prescription through as it was marked urgent, low and behold they have pulled all stops out and the bags are there waiting ALL10 of them !!!!!!! I now have 30 convenes, 45 wipes , 10 disposable bags !!! Pharmacist can't help as that's all that's been prescribed, he can't dispense anymore. Back to the doctors , waiting for another prescription.Watch this space, I'm sorry but I have never had much patience with incompetence. Xxx
Surely the bags last a week though. So ten bags will be enough for 10 weeks (or five if there are five day bags and five night bags).
What I can't understand is why they can't send us more than 28 days worth at a time. As this is an ongoing condition and everyone knows we will need these for the foreseeable future, why should I have to remember to request them every month. When I queried this with our supplier I was told I couldn't have more because "I would be stockpiling them"! As if I WANT to fill my house with incontinence aids! - or perhaps I might be selling them on the black market.
No actually the bags are single use throw away, I don't know why. It is clearly marked on the bag and the incontinence nurse and pharmacist had reiterated the same. Having said that it is possible to reuse one with care but is an extreme fiddle . I do believe that there are some out there which are totally reusable, I don't know whether they work with a different type of convene, I shall ask the nurse when she calls again xx
Would be much better to have reusable from a waste point of view.... You do open a tap on these to empty it's a sort of plunger but it's nigh impossible to reverse the op to reuse the bag. Like you said it would be a help to have more than a months supply as we have other meds to remember at different times, including our own. What carer of a PSP patient would have the time to sell on the black market !!!! Xx
The one they use here in the hospital is called uridome. Thanks all for the info on convenes! Seems to work well - unless the patient is sat in chair on top of his 'crown jewels' so tightly that the catheter pulls out!!! One of the happenings today!! Needless to say, he was not a happy chappy in his chair and it was as well I was beside him to not his uncomfortable fidgetting, and luckily he was able to say he had tight balls!!
Hi, all these posts, from different parts of the world.... The one common theme is, none of our health professional gives the slightest thought, to how we manage this problem. It may sound obvious, but what training do we get? One rushed nurse, who shows you, "just like that!" then leaves. The box of goodies arrive and you haven't a clue what they are for, or how to use them. I know it's easy enough to get the idea, but perhaps that's part of the problem, some of us arent!!!
The bladder giving up, effects us all SOOOOOOOOOOOOOOO much, even in the PSPA booklets, not is mentioned much. It ruins our lives for a good couple of years, if not more, until like S, a Catether is fitted, but now we run the constant risk of infections. These are valuable moments we are missing with our loved ones, by constantly being stressed and tired from the never ending clear up operation!
This is not just a PSP problem, so I just can't understand, why in this day and age, more has not been done to try and make urine incontenance easier to manage. Even more importantly, that the medical profession, don't take the issue far more seriously. If you add up all the hours sleep loss, we have all had to endure, then times it by the people not on this site, plus others with different illnesses, well, you don't need to be good at Maths to work out the answer!!!
Rant over, it's just breaking my heart to constantly read this never ending problem and the powers at be, don't give a ####!!!!!!!!!!!!
I agree Heady, I actually cried in the chemist , convenes ,wipes and no bags meant changing the bed at least 3 times in night from leaking pads . I explained it was the last straw in the life of a 24/7 carer. When I went back the next day to see if everything was sorted the assistant said she jumped for joy when she took delivery of them for me. Imagine a doctor writing a prescription for 30 convenes and wipes and no bags, then to crown it all only orders you 10 single use bags !!! It beggars belief. It's certainly not helpful for stress levels.xx
It's never ending. When S had his Catether put in, they sent bags that have to stay on for a week. Guess what, the back is made of material, so it doesn't rub the skin, Great! The problem is, they get wet in the shower and you can't dry them, so S had a soaking wet bag strapped to his leg, every morning!!! Thought process and brain cells do not seem to go together. Like you say, we just don't have the strength to fight these stupid errors.
Yes !! Its a major problem emotionally as well as physically. I want to ask them all if they have ever had to care for someone with these issues. They are so casual. I took ages sorting out how to fix things.
I also have cried because it is so hard to deal with. It gets out of perspective because its constant. And tiring.
Like nanna B I have to order directly from supplier every month. It doesn't sound much but there are so many small things to remember.
I agree with Heady that the whole problem isn't faced when there must be so many struggling with continence issues as they age.
You know it! I had no dea what incontinence could entail until this started up. What a BAD design humans have for waste disposal. I'd better start living right so I can hope to have a word with the party responsible!
Very frustrating to run out of supplies and meds. I have the same issue with my wife's catheter supplies and even her feed for her PEG tube. Insurance companies don't want to supply more than 30 days in case the patient either expires or you cancel your insurance policy. And hospice doesn't want to supply more than 2 weeks, because most hospice patients expire within 2 weeks. But PSP hospice patients are a lot different than most terminally ill hospice patients. PSP patients seem to be more resilient and can last a lot longer if properly cared for. We've now been on hospice for over 6 months and I'm pretty sure Kim will be with me for at least another 6 months (God willing). So yes, I do stock pile!!! Let me know if anybody needs anything.
Supplies, supplies.......the troubles that we have had in the past!
I have needed to change the type of pads that my husband has needed a few times now, as his continence has progressed, and each time I have had to wait until the end of 8 weeks until this has been able to happen, making it very difficult. I would normally re order on the internet but when I have needed something different, I ring the OT and then she has to get it authorised( which can take a week) and then if it is authorised, the new order can only be put forward, after 8 weeks of the last order!!! We are only aloud 4 products in 24 hours, which is 2 daytime pads and 2 nighttime pull-ups. I can cope ( and I cope on my own) as long as I have everything that I need to do the job with. Any little hiccup with supplies is just extra stress!
I quite agree, we need things to be as smooth running as possible. That's a really low quota of pads to be allowed. We found the pads pretty useless , it meant changing bed twice a night most nights and a shower every morning as soon as my husband was awake. The convenes have given a total new experience, dry bed, plenty sleep , less washing , less stress all round. Today I collected the bags that were owing as Dr gave prescription for 30 convenes 10 bags. On collection there were 50 bags for me. Why can't they get it right , we will have had 30 convenes, 45 wipes and a total of 60 bags. It's driving me nuts !!!!!
I wish my husband could get on with wearing convenes but we did try in the beginning of his incontinence and had no luck, so we have the pads for now and have to make do, which means,we have wet bed changes during the night and not enough pads!!!!
We have not found the convene a problem at all, long may it continue as it is a godsend, no wet beds , no calls in the night . I can deal with the day so much better . Xx
Oh dear, we haven't reached this stage yet, so as a former girl guide I need to 'be prepared' and therefore print out all your posts for future reference and buy extra bedding!!
Everyone here has (unfortunately due to PSP) so much expertise to share which puts the health care professionals to shame. Lots of love to all, Nanny857
I have found that buying a couple of quilts that actually fit into the washing machine very useful, as are washable bed protectors and disposable bed protectors to go over the washable bed protectors!! But I don't want to overload you with information about all of this stuff that you have to fill your loft with!!!!!
I too recommend the washable bed protectors, especially ones with flaps that tuck in. It all helps, no health professional thinks to tell you of such things. X
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