Incontinence Pads - difficult to increase supply

[padmag]

My partner has Alzheimers and is doubly incontinent. Up to now we have managed with 3 pads per 24 hour period ( 2 for daytime and one for night). Unfortunately his usage has increased to needing at least 3 over the daytime and 2 for the night time period. I have tried talking to the incontinence service who insist he goes to their surgery for another assessement. I explained that it woukd be difficult as his behaviour is inappropriate in a crowded place and would probably offend people, also he might try and do a wee in the waiting room as he still acknowledges his need to 'go'. Also his mobility is poor, he does have a wheelchair but I cannot lift the wheelchair in and out of the car or even push him in it as I need 2 knee replacements.
They said they could possibly inform the district nurse but could not give me a timescale on this. I know systems vary from area to area - I am based in the Nottingham city area. Does anyone have experience of these issues? Goodness knows its hard enough dealing with the incontinence without them making you jump through hoops to get a few more! Like a lot of carers in this situation I feel angry that we are not supported with needs that cannot be ignored. Its obviously down to cost, but to what end? The day centre that Richard attends obviously needed to change his pad more often but we did not have the available pads, he ended up with a UTI and another skin infection and was very poorly last week taking up a GP's time and costly prescription. Never mind a sugar minister we need an Alzheimers minister (or have we already got on?) obvioulsy living in a bubble I am not up to date.

 

[Beate]

We had the same carry-on when I explained that OH could not come to the Continence Clinic anymore due to mobility issues. After a lot of toing and froing, District nurses were informed and came out. They can do the same as the Clinic but they will be bound by the same financial restrictions that might hinder a substantial increase in pads per day. However, they can also order other things for you like wipeable mattresses, which was a godsend, so insist on a referral to a DN. If the Clinic won't do it, the GP should be able to.

 

[padmag]

We had the same carry-on when I explained that OH could not come to the Continence Clinic anymore due to mobility issues. After a lot of toing and froing, District nurses were informed and came out. They can do the same as the Clinic but they will be bound by the same financial restrictions that might hinder a substantial increase in pads per day. However, they can also order other things for you like wipeable mattresses, which was a godsend, so insist on a referral to a DN. If the Clinic won't do it, the GP should be able to.

Thanks Beate, I have been on the 'phone most of the morning going around in circles. My GP practice do not have a district nurse but they managed to gleam from Richard's notes that a referral has been made to the community nurse, so I will wait for this, but how do people manage without enough pads? Looks like I may have to buy some in addition to the prescribed ones, although they are very expensive.

 

[Beate]

Yes, we had to buy them in. You get some brands in supermarkets and pharmacies, and there are some online suppliers as well.

 

[Sad Staffs]

Our service in Staffordshire provide 3 day pads and one night time one that has the wraparound ends with sticky tabs. It isn’t enough but I guess I’m grateful for what I get, as up until May we were buying everything ourselves, and really struggling not knowing what to get or from where! They don’t provide anything else as they say we are having the maximum they can provide.

The company they use is Hartmanns, and I buy pull up pants, maximum raindrop ones, from them for when we go out. Always a worry, a bit like Cinderella and her glass slipper... need to be back in time before leakage. I also buy something called Strampelpeter number 2 booster pads for them to go in his night pads, sometimes put 2 in, as we get max leakage at night. I also buy Hartmanns fixation pants for his day pads, and these keep them in place quite well.

It’s all a nightmare isn’t it? You just never dream that your life will turn out like this. But just get on with it don’t we...
good luck x

 

[Bunpoots]

I live in Nottinghamshire but not Nottingham city and I suppose we were lucky that the incontinence clinic took one look at my dad struggling to walk and decided to send out the district nurse from then on. I have been told that the maximum number of pads/pull-ups on prescription is 4 a day.

So we also have to buy extra.

 

[padmag]

Yes, we had to buy them in. You get some brands in supermarkets and pharmacies, and there are some online suppliers as well.

Looks like I will have to buy some, thanks for your input.

 

[padmag]

Our service in Staffordshire provide 3 day pads and one night time one that has the wraparound ends with sticky tabs. It isn’t enough but I guess I’m grateful for what I get, as up until May we were buying everything ourselves, and really struggling not knowing what to get or from where! They don’t provide anything else as they say we are having the maximum they can provide.

The company they use is Hartmanns, and I buy pull up pants, maximum raindrop ones, from them for when we go out. Always a worry, a bit like Cinderella and her glass slipper... need to be back in time before leakage. I also buy something called Strampelpeter number 2 booster pads for them to go in his night pads, sometimes put 2 in, as we get max leakage at night. I also buy Hartmanns fixation pants for his day pads, and these keep them in place quite well.

It’s all a nightmare isn’t it? You just never dream that your life will turn out like this. But just get on with it don’t we...
good luck x

Wow, thanks for all that information, I will get online today, see what I can find. Looks like I will only manage to get one extra pad and definitely need more. We are managing on Richard's pension and attdce & carers allowance, so not much room there for purchases but it is obviously very important and something else will have to give....

 

[padmag]

I live in Nottinghamshire but not Nottingham city and I suppose we were lucky that the incontinence clinic took one look at my dad struggling to walk and decided to send out the district nurse from then on. I have been told that the maximum number of pads/pull-ups on prescription is 4 a day.

So we also have to buy extra.

Thanks Bunpoots, all this aggro for 1 extra pad yikes! I wonder if people with medical conditions are able to access enough pads/pants as I know Alzheimers isn't classed the same.

 

[witts1973]

In your circumstances I'm surprised that the continence team wont visit, my mums mobility was very poor when they first visited and they have just visited again now that she is bed bound,the last time they came they tried to reduce her to 3 pads and I live and look after my mum and told them that she has 4 care calls for a pad change so she needs 3 and they said yes we could have 4.
I often call out nurses what I thought were district nurses are community nurses,there aren't many district nurses it will be a community nurses that visit the home they are lovely and we haven't ever had to wait to long for the visit,they have just provided us this week with a Repose inflatable cushion that covers all the surfaces of mums recliner,they will supply v shaped pillows and all sorts of stuff.

 

[padmag]

In your circumstances I'm surprised that the continence team wont visit, my mums mobility was very poor when they first visited and they have just visited again now that she is bed bound,the last time they came they tried to reduce her to 3 pads and I live and look after my mum and told them that she has 4 care calls for a pad change so she needs 3 and they said yes we could have 4.
I often call out nurses what I thought were district nurses are community nurses,there aren't many district nurses it will be a community nurses that visit the home they are lovely and we haven't ever had to wait to long for the visit,they have just provided us this week with a Repose inflatable cushion that covers all the surfaces of mums recliner,they will supply v shaped pillows and all sorts of stuff.

I
Hello Witts - hopefully I won't wait long for a visit either. In the non too distant future I can envisage being unable to wash and change Richard so expect the community nurses may be able to help, sounds like they are being a good help to you. Best wishes to you looking after your Mum.

 

[Prudence9]

Our Continence Team sent a nurse out as Mum was bed-bound.
They could only supply 2 "nappy"- type slips per day so we had to continue to buy in.
This site is great, good prices and service and fast delivery:
https://www.incontinencechoice.co.uk/

 

[padmag]

Our Continence Team sent a nurse out as Mum was bed-bound.
They could only supply 2 "nappy"- type slips per day so we had to continue to buy in.
This site is great, good prices and service and fast delivery:
https://www.incontinencechoice.co.uk/

Thanks Prudence9 I can see me having to buy in, this is the only place to get good realistic advice, thanks everyone for your help as always.

 

[witts1973]

I
Hello Witts - hopefully I won't wait long for a visit either. In the non too distant future I can envisage being unable to wash and change Richard so expect the community nurses may be able to help, sounds like they are being a good help to you. Best wishes to you looking after your Mum.

Hi when you get to that stage there is help so don't worry about it,we had a care package arranged by social services,my mother could no longer weight bare and she then had to have a hospital bed for use in our lounge and a hoist to place her in her recliner,it will be carers that are sent to wash and change pads when you get to that point.
I wish you and Richard all the best,any problems just ask away on the forum,I assume you have the number for community nursing as if it's a weekend or an evening and your worried about any health matters and feeling in a panic they are nice to talk to,and should be able to put you at ease

 

[witts1973]

Hi when you get to that stage there is help so don't worry about it,we had a care package prescribed by social services,my mother could no longer weight bare and she then had to have a hospital bed for use in our lounge and a hoist to place her in her recliner,it will be carers that are sent to help with this.
I wish you and Richard all the best,any problems just ask away on the forum,I assume you have the number for community nursing as if it's a weekend or an evening and your worried about any health matters and feeling in a panic they are nice to talk to,and should be able to put you at ease

 

[Marnie63]

It seems very few areas will provide the full quota of incontinence pads and pants that is needed to cope with incontinence (which kind of means it's a bit of a weird 'continence service', but there you go!). Initially when my mum was still mobile and I was able to help her to the toilet, we were allocated some small stick in pads for day time, and a larger one for overnight. Fortunately the allocation usually lasted for the 3 months they supplied for. But, we had very few incidents then, so that worked, and any leakage was usually quite minor. Then after mum's stroke, we were allocated a load of Tena slips, but they were far too thin (nearly a year later I still have two packs of the damn things, but I cut the paper bits off to turn them into a large pad, and am using them up inside stretchy pants when mum is left in bed occasionally during the day). Later, I told them these weren't working at all overnight, so we got the Tena Comfort large pads for night time (I had to practically beg for the top absorbency), and the large stick in ones (which we used to use for night time) for day use. Now it's tricky as mum's mobility and general state is very up and down, so I am hesitating to re-order as I'll get a load of stick in pads which I may never be able to use up if she suddenly becomes mostly bed bound again. I have such an assortment of stuff under the stairs, but this works as I think I have something for every situation! I find buying my own things easier as I can order what I want, but the stuff provided by the NHS is a useful top up to this, provided you can get them to supply what works for you and the situation you have.

It's really bad that we have to fight for these things, and pay for any extras ourselves, if we are coping with incontinence at home with a PWD (which I have found to be the hardest symptom by far … so far). But, this is the world of dementia, a bit forgotten somehow and not really supported. But you'll all already know that!

 

[witts1973]

It seems very few areas will provide the full quota of incontinence pads and pants that is needed to cope with incontinence (which kind of means it's a bit of a weird 'continence service', but there you go!). Initially when my mum was still mobile and I was able to help her to the toilet, we were allocated some small stick in pads for day time, and a larger one for overnight. Fortunately the allocation usually lasted for the 3 months they supplied for. But, we had very few incidents then, so that worked, and any leakage was usually quite minor. Then after mum's stroke, we were allocated a load of Tena slips, but they were far too thin (nearly a year later I still have two packs of the damn things, but I cut the paper bits off to turn them into a large pad, and am using them up inside stretchy pants when mum is left in bed occasionally during the day). Later, I told them these weren't working at all overnight, so we got the Tena Comfort large pads for night time (I had to practically beg for the top absorbency), and the large stick in ones (which we used to use for night time) for day use. Now it's tricky as mum's mobility and general state is very up and down, so I am hesitating to re-order as I'll get a load of stick in pads which I may never be able to use up if she suddenly becomes mostly bed bound again. I have such an assortment of stuff under the stairs, but this works as I think I have something for every situation! I find buying my own things easier as I can order what I want, but the stuff provided by the NHS is a useful top up to this, provided you can get them to supply what works for you and the situation you have.

It's really bad that we have to fight for these things, and pay for any extras ourselves, if we are coping with incontinence at home with a PWD (which I have found to be the hardest symptom by far … so far). But, this is the world of dementia, a bit forgotten somehow and not really supported. But you'll all already know that!

It's tough,you have to be quite assertive but in a polite way or you can just get fobbed off,it probably depends on who you speak too,if I think somebody has been useless,I ring again at a later date hoping to find somebody with a little more common sense and empathy

 

[padmag]

I don't have any community nurse numbers, and could not be given it although I did ask the GP receptionist today for it - she said she didn't have it. Deep breath here....
I will await for the community nurse visit and hopefully they can answer my questions. Feel very alone with this dementia and know that if they can't help me care at home then so be it over to 'them' (I'm probably overtired and don't mean it)

 

[padmag]

It's tough,you have to be quite assertive but in a polite way or you can just get fobbed off,it probably depends on who you speak too,if I think somebody has been useless,I ring again at a later date hoping to find somebody with a little more common sense and empathy

Thats a bit of good advice, will try it, although i do try to always be polite.

 

[padmag]

It seems very few areas will provide the full quota of incontinence pads and pants that is needed to cope with incontinence (which kind of means it's a bit of a weird 'continence service', but there you go!). Initially when my mum was still mobile and I was able to help her to the toilet, we were allocated some small stick in pads for day time, and a larger one for overnight. Fortunately the allocation usually lasted for the 3 months they supplied for. But, we had very few incidents then, so that worked, and any leakage was usually quite minor. Then after mum's stroke, we were allocated a load of Tena slips, but they were far too thin (nearly a year later I still have two packs of the damn things, but I cut the paper bits off to turn them into a large pad, and am using them up inside stretchy pants when mum is left in bed occasionally during the day). Later, I told them these weren't working at all overnight, so we got the Tena Comfort large pads for night time (I had to practically beg for the top absorbency), and the large stick in ones (which we used to use for night time) for day use. Now it's tricky as mum's mobility and general state is very up and down, so I am hesitating to re-order as I'll get a load of stick in pads which I may never be able to use up if she suddenly becomes mostly bed bound again. I have such an assortment of stuff under the stairs, but this works as I think I have something for every situation! I find buying my own things easier as I can order what I want, but the stuff provided by the NHS is a useful top up to this, provided you can get them to supply what works for you and the situation you have.

It's really bad that we have to fight for these things, and pay for any extras ourselves, if we are coping with incontinence at home with a PWD (which I have found to be the hardest symptom by far … so far). But, this is the world of dementia, a bit forgotten somehow and not really supported. But you'll all already know that!