Paperwork for continence team

[witts1973]

My mother recently had her pad type changed from wrap round pads with fixings to the slip in ones that you hold in with nets,she's bed bound,this happened even though she had a prescription renewed a couple of months ago letting her keep the pads with fasteners.
The carers said the new pads aren't long enough so if they cover the bum to catch a stool they hardly pull up far enough to cover the vagina properly to catch urine properly,so after a couple of months I have rang the continence team and now have had paperwork to do a food diary and stool inspection which comes with a key of 7 different types of stools and you identify yours(mums) to match a picture of stools numbered 1 to 7 in a provided leaflet,you then have to count all the liquids consumed and at what time at least as my mum is bed bound we haven't got to catch the urine in a jug and record the volume as this would be impossible in a bed,although we did manage to do this a couple of years ago while mum was on her feet.
I rang them and said do we have to do this as my mum doesn't have a problem with the volume it's just the pad is a few inches short in length so it doesn't cover bottom and vagina in an adequate maner,I also said being a full time carer it's not the type of thing that you want to spend energy thinking about filling forms in,they said somebody would call next week and let me know if I really do have to fill the forms in or not.
I enjoy the care side of life and of course it does bring stress and depression,but form filling and red tape is a right pain in the behind

 

[Sad Staffs]

Hi @witts1973
Your post made me angry, for you, for me, and for all of us living with someone who is chronically incontinent.

They make us go through hoops to get the most basic of products. Nor do they provide enough. Our service limit us to 3 pads for the day and one night pad. That’s it. 3 a day are nowhere near enough and I limit his fluid intake. Not good for someone with severe kidney condition.

Nor are the pads absorbent enough for my husband. So I buy booster pads to put in his night pad and I buy pull up pants to put over the top of it all. It works mostly, but it’s down to my perseverance not the support of the incontinence service. I also buy large supplies of day pads to make up the shortfall.

No one asks to be incontinent. No one can help this condition. No one would choose to be incontinent.

Incontinence is a Cinderella condition. It’s brushed under the carpet. It’s not talked about. Perhaps we should try and change that.

But when the local service, and the personnel paid to care for patients, seem unable to fully and effectively support people with incontinence, it seems to me we are losing before we start.

Perhaps the Alzheimer’s Society should begin a campaign for people with chronic incontinence to be treated with empathy and effectively.
Ok, off my high horse now! Love B x

 

[witts1973]

Hi @witts1973
Your post made me angry, for you, for me, and for all of us living with someone who is chronically incontinent.

They make us go through hoops to get the most basic of products. Nor do they provide enough. Our service limit us to 3 pads for the day and one night pad. That’s it. 3 a day are nowhere near enough and I limit his fluid intake. Not good for someone with severe kidney condition.

Nor are the pads absorbent enough for my husband. So I buy booster pads to put in his night pad and I buy pull up pants to put over the top of it all. It works mostly, but it’s down to my perseverance not the support of the incontinence service. I also buy large supplies of day pads to make up the shortfall.

No one asks to be incontinent. No one can help this condition. No one would choose to be incontinent.

Incontinence is a Cinderella condition. It’s brushed under the carpet. It’s not talked about. Perhaps we should try and change that.

But when the local service, and the personnel paid to care for patients, seem unable to fully and effectively support people with incontinence, it seems to me we are losing before we start.

Perhaps the Alzheimer’s Society should begin a campaign for people with chronic incontinence to be treated with empathy and effectively.
Ok, off my high horse now! Love B x

Thanks for your support,the day wasn't too bad until that letter came through the door asking me too inspect the shape of different types of poo etc xx

 

[marionq]

One of my neighbours who looks after an invalid wife told me he was spending £100 a month on pads. I told him about the incontinence service and he got referred and is pleased with the result. What I like is his name for it “the soggy bottom clinic”. It always makes me laugh when I’m talking to him. Makes up for the reality of it.

 

[katydid]

Hi @witts1973
Your post made me angry, for you, for me, and for all of us living with someone who is chronically incontinent.

They make us go through hoops to get the most basic of products. Nor do they provide enough. Our service limit us to 3 pads for the day and one night pad. That’s it. 3 a day are nowhere near enough and I limit his fluid intake. Not good for someone with severe kidney condition.

Nor are the pads absorbent enough for my husband. So I buy booster pads to put in his night pad and I buy pull up pants to put over the top of it all. It works mostly, but it’s down to my perseverance not the support of the incontinence service. I also buy large supplies of day pads to make up the shortfall.

No one asks to be incontinent. No one can help this condition. No one would choose to be incontinent.

Incontinence is a Cinderella condition. It’s brushed under the carpet. It’s not talked about. Perhaps we should try and change that.

But when the local service, and the personnel paid to care for patients, seem unable to fully and effectively support people with incontinence, it seems to me we are losing before we start.

Perhaps the Alzheimer’s Society should begin a campaign for people with chronic incontinence to be treated with empathy and effectively.
Ok, off my high horse now! Love B x

My mother recently had her pad type changed from wrap round pads with fixings to the slip in ones that you hold in with nets,she's bed bound,this happened even though she had a prescription renewed a couple of months ago letting her keep the pads with fasteners.
The carers said the new pads aren't long enough so if they cover the bum to catch a stool they hardly pull up far enough to cover the vagina properly to catch urine properly,so after a couple of months I have rang the continence team and now have had paperwork to do a food diary and stool inspection which comes with a key of 7 different types of stools and you identify yours(mums) to match a picture of stools numbered 1 to 7 in a provided leaflet,you then have to count all the liquids consumed and at what time at least as my mum is bed bound we haven't got to catch the urine in a jug and record the volume as this would be impossible in a bed,although we did manage to do this a couple of years ago while mum was on her feet.
I rang them and said do we have to do this as my mum doesn't have a problem with the volume it's just the pad is a few inches short in length so it doesn't cover bottom and vagina in an adequate maner,I also said being a full time carer it's not the type of thing that you want to spend energy thinking about filling forms in,they said somebody would call next week and let me know if I really do have to fill the forms in or not.
I enjoy the care side of life and of course it does bring stress and depression,but form filling and red tape is a right pain in the behind

 

[katydid]

Completely agree, but amazed that you get,any incontinence pads free!!!!
My husband has been through pads, condoms,and indwelling catheters
When on pads I have to buy them all.
With pads it usually having to wash a complete,bed every day.
Lead me to the soggy bottoms clinic!!!

 

[Sad Staffs]

Thanks for your support,the day wasn't too bad until that letter came through the door asking me too inspect the shape of different types of poo etc xx

I just don’t understand it.
Inspecting, counting the shape of different types of poo.
I mean.... what!!
How absolutely degrading for all of you.
It seems to me to be another excuse to put off doing something effectively to help the incontinent person. And to save money of course.
I hope they never ask me to measure my husbands output. Input yes, but output no. He pees constantly into his pads. How can you measure that? I have tried weighing it when they removed a catheter some time ago. But it was beyond me.
I think it’s easier to get a boob job than it is to get an adequate supply of efficient pads.
Oh no, I’m on my high horse again! B x

 

[marionq]

@katydid are you in the UK? I thought everyone was supplied free. I can’t deny that I bought extra pull-ups as well as kylie sheets etc but the bulk of the pads are free. Speak to your GP.

 

[Sad Staffs]

Completely agree, but amazed that you get,any incontinence pads free!!!!
My husband has been through pads, condoms,and indwelling catheters
When on pads I have to buy them all.
With pads it usually having to wash a complete,bed every day.
Lead me to the soggy bottoms clinic!!!

Hasn’t your GP helped to refer you to the incontinence service?
I think you have a right to them if your husband is incontinent.
I’m afraid I would be complaining to my MP.
It really is unacceptable. Although we don’t get sufficient and I have to buy to top up, we do at least get the bulk from the incontinence service.
By the way, do you have a Kylie for your bed? I think they are really good.
Good luck, fingers crossed for you.
Love B x

 

[MothersCarer]

Dear Lord! This sounds like some kind of torture. I am so sorry for those of you being put through this.

 

[kindred]

Hasn’t your GP helped to refer you to the incontinence service?
I think you have a right to them if your husband is incontinent.
I’m afraid I would be complaining to my MP.
It really is unacceptable. Although we don’t get sufficient and I have to buy to top up, we do at least get the bulk from the incontinence service.
By the way, do you have a Kylie for your bed? I think they are really good.
Good luck, fingers crossed for you.
Love B x

Well, I had a draconian visit from the incontinence service and things changed because when I asked how much more strain and stress did they want to put us through, measuring poo and pee, one of the nurses started to cry. I got her a cup of tea and did the there there and she said she so hated her job that she volunteered one day a week at a local dementia hospital just so she could do some real caring ... Kindred. xx

 

[marionq]

Oh my goodness this is ridiculous. Nurses distressed. Carers distressed. Who are the decision makers writing these absurd policies which cause so much upset. Name and shame them. Find the designer of the poo and pee document. We the people demand it.

 

[Jessbow]

It might seem really beyond the call but I dont think it is really

Different pads cope with differering volumes of urine, in just the same way that pads that fit differently will contain bowel motions most effectively. My late mother had explosive runny poo - sorry TMI- most of the time- Slip pad? forget it! we needed the pad with the greatest beam width and gentle elastic round the legs.

Unless you get an idea of what you need to contain, how can the service provide the right fit?

 

[witts1973]

It might seem really beyond the call but I dont think it is really

Different pads cope with differering volumes of urine, in just the same way that pads that fit differently will contain bowel motions most effectively. My late mother had explosive runny poo - sorry TMI- most of the time- Slip pad? forget it! we needed the pad with the greatest beam width and gentle elastic round the legs.

Unless you get an idea of what you need to contain, how can the service provide the right fit?

I might get away without giving a running commentry on my mums eating and drinking habits as I have spoken to one of the ladies saying it's not a volume issue but a matter of the pad being a few inches short lengthways,somebody should know if there is a pad that is a better fit,that covers both zones,I'm expecting a call to find out

 

[witts1973]

Well, I had a draconian visit from the incontinence service and things changed because when I asked how much more strain and stress did they want to put us through, measuring poo and pee, one of the nurses started to cry. I got her a cup of tea and did the there there and she said she so hated her job that she volunteered one day a week at a local dementia hospital just so she could do some real caring ... Kindred. xx

Bless her,she must be a lovely lady to do that on her time off x

 

[marionq]

Th assessment by the incontinence service nurse is supposed to be to work out what the PWD needs and I cannot see that filling in forms - more forms - can add anything to that.

 

[Philbo]

I cannot complain, as my wife gets enough pull-up pants for 4 a day, from the NHS. However, as I've mentioned in other posts, I had to battle my way, to achieve this.

When I initially rang our GP for advice about what was at the time, occasional "accidents", the referral to the incontinence team took quite a few weeks. The lady who visited was a bit dismissive, advising that I should get another referral if the problem got any worse (they said that occasional accidents weren't classed as incontinence - and they didn't supply pull-ups, only pads)!

So when it did inevitable get worse (and I had already started buying our own pull-ups to cope), we got an appointment to visit the team at the local clinic. I was dreading it, as they had asked me to record fluid intake and how much was passed.

Though I scribbled down roughly how much she drank, I couldn't track the amount she passed as pretty much all of it was into the pads! Well, I was pleasantly surprised that the different (slightly older) lady we saw was superb. She was very empathetic, explained their procedure for requesting supply of incontinence products and said that they would be able to supply enough pull-ups for 4 a day. Our local NHS trust had also just changed suppliers to the same make we were already buying, which was even better.

It is very galling to hear about the variations across the country and grossly unfair on those people finding it difficult or impossible to get appropriate products supplied. The fact that by performing the "unpaid" caring role, we are saving the NHS/LA truck loads of money, the least we should be entitled to is some help with supply of incontinence products.

 

[Moggymad]

Couldn't agree more @Philbo we supplied all mums inco products until she went into care then they got mum assessed by inco service who eventually supplied equivalent of 3 per day. Ridiculous as mum is doubly incontinent. Do not provide pullups so we (mum) is still paying for pullups, which the care home source for mum, as a backup. As mum is LA funded the £24 left from her pension has to pay for this.

 

[Marnie63]

Witts - I think if you continue to rely totally on the continence service, then you will be disappointed. I had free pads delivered for mum (which I was very grateful for), but mum needed such a variety of stuff to suit different needs (well, I thought so, so that's what I provided for her!) that I used Incontinence Choice to supplement the NHS provided stuff. That way I could work out what worked best and then ask for the NHS to change the provision, if needed, and if they could. I was very lucky with our local clinic as they were generally very helpful, sent stuff to try, etc.

I don't think people should have to pay for any of this stuff themselves as it's a health need, but as it stands the services in place don't seem to align to the needs of the people!

 

[witts1973]

Couldn't agree more @Philbo we supplied all mums inco products until she went into care then they got mum assessed by inco service who eventually supplied equivalent of 3 per day. Ridiculous as mum is doubly incontinent. Do not provide pullups so we (mum) is still paying for pullups, which the care home source for mum, as a backup. As mum is LA funded the £24 left from her pension has to pay for this.

Witts - I think if you continue to rely totally on the continence service, then you will be disappointed. I had free pads delivered for mum (which I was very grateful for), but mum needed such a variety of stuff to suit different needs (well, I thought so, so that's what I provided for her!) that I used Incontinence Choice to supplement the NHS provided stuff. That way I could work out what worked best and then ask for the NHS to change the provision, if needed, and if they could. I was very lucky with our local clinic as they were generally very helpful, sent stuff to try, etc.

I don't think people should have to pay for any of this stuff themselves as it's a health need, but as it stands the services in place don't seem to align to the needs of the people!

Thanks we will muddle along,mum has the dentist tomorrow which she has to visit in an ambulance so the thought of form filling wasn't too pleasing this week for the continence team,we learn to get through the week in our own way to keep the stress away and little hurdles you can do without.
I've just washed mums hair and she's happy and the sun is shining,have a good day