Saturday, 26 March 2011


Picture this. I'll spare you the graphics.

A fairly ordinary kind of a day. A child who just happens to be doubly incontinent wakes up. She went to bed at 8PM, later than usual, and slept the night through without waking at 5AM, when she has her morning medication. So, by 9AM, the urine sitting in her incontinence pad was fairly ripe.

Her pad was changed, and she was hooked up to her tube feed, which runs for the next twelve hours, dripping a diluted, easily digested, formula into her stomach at a rate of 140mls/hour.

At 10AM, after much discomfort, she had a fairly large, fairly loose bowel movement. Her pad was changed, and she opted to go back to sleep for an hour or so. By 12PM her clean pad was flooded with urine, her pad was changed, and it was time to go out for lunch.

Once sitting up in her wheelchair, gravity and movicol did their stuff, and by 3PM her pad was distinctly overripe. The pad held it all in, but once unsealed, a wave of liquid faeces flowed over the child, necessitating a shower. A quick hose down, much mopping with a towel. Clean pad left in bedroom, and whilst this was fetched, a good wee ensured the towel also needed washing.

All cleaned and changed, back in wheelchair ready for an afternoon party. A good party, a good evening, home, and one flooded pad needing to be changed before bed at 7PM.

One child now sleeping peacefully, one feed pump nearly finished, a good end to the day. 5 pads used plus one sodden towel, which would have been a 6th pad if a certain parent carer had been more organised. An ordinary day, no antibiotics to produce extra bowel movements, no extra fluid intake, no pad accidentally ripped as it comes out of the bag, and no middle of the night or 5AM change.

Now take another child, who is differently incontinent. Imagine having a normal diet, but having no control over when your body evacuates stool. The medics do their best, providing various different devices and procedures to ensure a good evacuation once a day, and this is reliable 13 days out of 14. But then on the 14th day, imagine seeping and leaking at intervals throughout the day. This can be six times within the six hours of a school day, it can be six times within one hour.

Imagine, at the same time, having a bladder which never fully empties, but which dribbles constantly. Imagine taking medication to control this, on top of the medication to try to control the bowel problems, and imagine trying to deal with both these issues within a mainstream school environment. Imagine having to decide - or others having to decide, on your behalf, which surgeries may or may not improve things. And in the meantime, imagine that every two hours (or more often, on the days when the bowel is playing up), you have to stop whatever you're doing, whether that's sitting in a lesson or playing at a party, and submit to someone else inserting a catheter and emptying your bladder.

Remember, even with this happening every two hours, your bladder tends to leak. So you need to wear a pad inside your knickers, to catch the dribble and prevent embarrassment.

Now imagine that you're the parent. And imagine that you've had a phone call from the continence service. It has been decided that, from now on, no child will be issued with more than four pads per day. Never mind the fact that one child has been assessed as needing five pads, and the other six. Never mind the fact that the needs have not changed, from now on, a maximum of four pads per day will be issued.

Which of the first child's pad changes will you decide to skip? Do you leave the child in the ammoniacal overnight pad, because although it is distinctly whiffy, it isn't actually fully soaked? Do you leave the child in the soiled pad, because the child has not had that morning wee yet?

How about the second child? Do you tell them that from now on, they can no longer use a smaller pad inside their knickers, and instead must go back into nappies, because these will hold more dribble, so will not leak through if left unchanged between caths, despite being damp? What does that do for self-esteem?

Ladies, imagine not being able to change a sanitary towel because each one should last six hours. Or perhaps imagine not being able to throw away a tissue, because although you have blown your nose on it, there's a corner which is still free from snot and which you should use next time.

Oh, and then, whilst you're still trying to work out how it is OK to decide not to meet an assessed need any more, imagine that the new system will mean these pads will be delivered. Good news, perhaps; it's certainly a pain having to go to the health centre every month to collect them. Well yes, that would be good news. Except that under the new system, you'll be expected to make a phone call every twelve weeks to reorder the pads which will not be enough to last those twelve weeks. And then, oh and then, you'll have to find storage space for three months' worth of incontinence pads. Two children - that means the equivalent of six months' worth of incontinence pads - adult-sized nappies. 14 pads to a bag, 4 per day = 28 per week = 24 bags per child every delivery. 48 bags of pads. Plus the extra bags we'll now have to buy privately. And the extra extra bags we will have to buy to cover the times I miss the cut off date to reorder, because life tends to get in the way of remembering to make a phone call every twelve weeks.
Now imagine someone has phoned to tell you all this at exactly the same time as the school bus has delivered two girls to the doorstep. And imagine being told "I don't like your tone, you're very hostile." when you ask who made this decision and how exactly they expect you to a) manage without the pads they know you need and b) where you're supposed to store them.

Imagine all that, and imagine that several days later you're still waiting for the post to deliver the promised full details of when this is going to happen, who decided it was going to happen (since apparently the continence service have had nothing to do with this decision), and the information on who to complain to and how. Imagine that, and imagine scrubbing the faeces from your fingernails after cleaning a commode this evening. And then you'll be pretty much where I am at the moment.



Sarah said...

It's the same in Devon, if that's any consolation. No, didn't think so :(

I sometimes feel guilty when we change children 3 times a day in school, knowing that the last change takes them into their last allocated pad for the day, at only 3pm.

Catherine said...

Same system here - 4 pads a day, 12 weeks' supply and phone when next order is due. And we've still not got the right order after switching suppliers in August. Supposed to have been sent some different ones on Monday with a three day delivery, but they've not yet arrived. Foolishly, I believed them that they would be here by now, and we've run out :o( Not great!
I hope you get the complaint details very soon, and that your complaint has an effect!
C x

Anonymous said...

Hi Tia
We are having terrible problems with our 23 year old son with bowel overflow ie dreadful and chronic constipation.Needless to say we have run out of pads - this weekend is grim.Thanks Tia you have encouraged me,i do not feel quite so sad and alone.

pippinsmum said...

If the NHS got rid of some of the management layers, there would be money to supply all your needs. I just Googled this and apparently it was also a problem in 1998!

Hazel said...

Meanwhile some fat banker is still taking home their million pound bonus. I heard an interesting phrase this week... about how we "privatise gain, and socialise loss"... i.e. when there is lots of money being made, the people making the money share it amongst themselves, but when there is a big crash, the loss is shared among the already marginalised people of society. Might your local paper be interested to hear from you?

Christine said...

Tia big big hugs. I can so relate because of Alex. Love your heart! Thank you for being such an example to me.

Anonymous said...

Oh, Tia--how frustrating!!!! And what a pain!!!! I know how hard it is to either remember or to just take the time to order what you need--. With all you have to keep up with--one more thing to order can be a big inconvience--plus the frustration of not getting what you need.
Since you need more pads than they are willing to give you per day--can you not get a Dr.'s order for what you do need and then they would have to give you that amount?
I guess not--otherwise you probably would have mentioned that-but I do know that even though that is another phone call-to the Dr. to get what is needed-our state insurance will honor it and supply what is needed rather than just what they say they will pay for.

Order and Chaos said...

Tia, David "call me Dave" Cameron emailed all PCTs etc regarding this months ago. They have been told that there is no justification for only issuing 4 pads a day if the need for more is greater. Will try and find some info about this for you because it's completely unacceptable that you have been told this.

Anonymous said...

Oh Tia, I'm mad with you. Much luck in trying to appeal/complain. I have a similar but different issue here; the pads that the continence service provides are from one company only, who they have a contract with. They are dangerous for me (my GP agrees) as they cause massive welts on my legs. Despite this, they are still not allowed to provide me with any from the other provider, so I have to pay for them all. Except, when the LA means test me for my care, they won't consider those pads to be 'disability related expenditure' as they ought to be provided by the NHS. Oh joy. I did hear something about David Cameron complaining, as the above poster said, so that might be a good tack to take. Awful stuff. I'm glad to hear that your girls will still have the pads they need, even if they have to be paid for privately, but of course that means not having something else :(

Linda said...

This is just not fair. I hope that Order and Chaos can shed some light on this for you.

Anonymous said...

Is this any help to quote at someone?


Anonymous said...

we've always had 4 pads a day. Its why I started my nappy and campaign and wrote to the PM and had him round for tea. Keep writing, keep campaigning. Cos Dave said he would change this.

Claire said...

Tia, I can feel the frustration in your words and my blood is boiling. The NHS will hand out free drugs to junkies and others with self inflicted problems but try to limit the unpredictable need for something that keeps someone clean, dry and hygienic. Oooh it makes me so angry, these management people who make the decisions obviously have no clue as to what they are deciding. I agree with the comment above about contacting the local paper, this is an issue definatly worth shouting about.

Becca said...

I'm angry beyond words. How dare they? Fancy a s(h)it-in at the PCT headquarters or something?

I don't get any pads at all - apparently a leaky catheter means I'm just not quite incontinent enough. I have to buy all of them.

I hate this government.

Anonymous said...

We've only ever been entitled to either 4 pads OR 4 nappies. We use many more continence products than this each day. With a leaky vesicostomy and chronic overflowing constipation... T wears a pull up, nappy and a pad all at the same time. Costs so much money to us every week....but then I guess an incontinent child isn't classed as important in the grand scheme of things. To us as a family and his one to one at school, it is a daily nightmare and a major priority I hope David Cameron gets this one sorted. Clare x

Anonymous said...

you've forgotten the new supplies also have things like 'stand tall' written on them - that will really boost the self esteem for our kids!

Someone wrote a poem about 4 a day - I posted it on another site - will try and find it again!


Anonymous said...

found it!!
The regal Bison when wandering the plain
Is free with his movements (he pees with disdain).
And when Nature calls him he rations it not
But dumps pounds of manure right out of his bot!

But if you’re disabled the policies say
You only need go some four times a day.

When flying the high clouds, the Eagle does dare
To shout “bombs away” without further care
And no inclination ever crosses his mind
To number the motions of his proud behind.

Ah but if you’re disabled you have to know
Four times a day is all you can go!

The Bear is often inclined to slink
Off into the woods (to sit and think)
And oft, whilst sitting, will gleefully pass
Its motions, unburdened with statistical tasks.

But if you’re disabled keep out of the woods
Four times a day is all of your goods!

The Orang-Utang whilst munching fruit
Is often heard to break a “toot”
And if it should happen to follow through
Why then who’s counting, me or you?

But if you’re disabled the state wants to know
Four times a day is all you can go!

The man about town, when out on the lash
Does not number the times he nips out for a slash.
Nor would he take kindly, no not one iota
To be told he had taken far more than his quota.

But if you’re disabled you better learn soon
A four gallon bladder would be a real boon.

Animal and Man, from nation to nation
The whole of the planet – the whole of creation
We try to determine – Just who is it?
That tells us the number of times we can shit.

And if you’re disabled and needing to go
Who can gainsay you, who tell you NO
Your rights are the same, let’s fight this together
And go when we want to, the more times the better.

Andy Barraclough 2006.

Lucia said...

That's horrible that your kids are limited to 4 incontinence pads each per day, that is totally WRONG! They need more! This pisses me off even though I don't live in the UK. I live in the USA. I hope David Cameron sorts this out for y'all asap!

Order and Chaos said...

Extra verse to Val's excellent poem above.

You can crap when you want if they Just Call You Dave
Too posh to remember which Nappies they gave
When you visit the Queen you can borrow the throne
She won't need a hoist, you can poo on your own

But if you're disabled - that's you, or your kids
It's just four times a day cos Dave's saving the quids

Anonymous said...

Lol love the extra verse - I only got the polite version!!

Charley said...

Tia I honestly feel for you. There's a case going through on a similar sort of issue atm (the McDonald case going to the supreme court on the 4th april) keep an eye on it if you can... in the meantime please for the sake of your sanity and the kids health call the Disability Law Service and see if they can help you out with this 0207 791 9800 it's a london number but they cover the whole of England and Wales (and can signpost in Scotland and NI if anyone else needs help.

Good luck and I sincerely wish you all the best

Ginger said...

That is totally unacceptable. We get nappies and booster pads delivered for all three girls monthly, Two of the girls get moist wipes. They call me! they are allowed as many as the doctor orders. we do run short on booster pads.
I used to buy all their diapers because the ones supplied did not hold anything!
Maybe a note from your doctor!


Blog Widget by LinkWithin