www.incontinentsupport.org

Hello everyone,

Am new to the forum,though not so new to toileting 'problems'.
Am twenty six,severely autistic and have had lifelong 'sensory toileting problems' [mostly urine] which have never officially been given a name,as most have seen it as a side effect to being autistic and believe only classic incontinence is genuine.

The actual difficulties are to do with feel-am unable to feel the need to go toilet,until its at bursting point,and often do not make it to toilet on time.
also do not feel the pressure of weeing-as to be able to make it go properly [if that makes any sense?] and do not know when have finished-which can get messy.

Having never known any different,it hasnt been seen as an impairment to self and what other people think of it does not affect self, but for the past few years have been really fed up with having to change so often-and clothes shrinking/ruining quickly because of the washing.

mum/dad took it as an attention seeking burden on them,and have been in residential care since twenty,where have been given every nasty possible excuse to not even look into getting pull ups.
SS learning disability residential services refused to allow any nappies [uk version of diapers] or even pull up pads [the lighter version of nappies]-their excuses given for it were-the nappies woud become a routine and woud avoid using the toilet,would be lazy and just use them as a toilet,the toileting problems dont exist,its just task avoidance,its attention seeking behaviors etc.
they always refused assessment by the incon nurse,even though the support staff are not doctors to be able to judge someones need.

Was having to wear very difficult to use huge wads of toilet roll as pads which only took some of the damage.

In the residential centre am in now,they recognised the sensory problems in toileting at last, but its not what it shoud be,they only allow pull up pads [go between Boots' own brand ones,sainsburys own brand ones,and tenna lady discreet extra].
They think any stronger will encourage not to use toilet.
the pads are to thin-will still often soak through trousers,so woud like to get the nappy type,and through the NHS because am told they use up a lot of money,and am not able to get the care component of DLA [disability living allowance] whilst in residential care -which woud have paid for them.


Does anyone have ideas on how to get this taken seriously?
is there a name for the problems have mentioned? as think a name woud be a good start into being allowed assessment.
dont know whether this is connected or not-but am not able to feel most types of pain [just very deep pains such as migraines that can feel]and a wonky sense of pain is seen as a side effect to autism to,so does this sound like something to do with nerves?

Sorry if have wrote to much and thanks for getting this far!

Fearless,

Thanks for your first post and joining our forum. Hopefully we can offer some suggestions to help you out.
It sounds like nobody is willing to accept you have an incontinence problem untill you're diagnosed with a problem by a doctor. I think you need to see a urologist who can tell you your specific problem. It sounds like "Urge" incontinence.
They need to take it seriously and allow you to wear the correct protection. Their notion it's going to allow you to be lazy is hogwash.
I don't know if you can convince them, but you need to see the right doctor. Good luck! .....Paul Martin

Hi Thank you for your Post

I'm very sorry to here of your situation My heart truly goes out to you. If that isn't incontinence I don't know what it is. It sounds like Urge incontinence to me with a little over flow as well.

Care givers of disabled people can often be very shallow and close minded thinkers. You'd think after doing the amount of laundry that is being done. Diapers would be a no brainier. So what if it's intentional or not. I feel so bad for you really I do. If you were close by to me I'd march right over there and give those people a piece of my mind on your behalf!!

It sounds as if you are capable of changing yourself. So it's just an expense thing. What really sucks is your over in the U.K I'm assuming. Over there you have access to quality diapers that most of us over here only dream about. American made diapers for the most part suck There are a few exceptions. In my opinion the two best we have come from your side of the pond and are very $$$

I really wish I could do or say something more for you........Sandy

Fearless,

NHS Continence services are supposed to provide what you need for your level of continence. If they fail to do so, you can start to complain. You may want some help to do this though.

basically, if you are told you cannot have the slips (nappy type pads) you should write back pointed out that the other sorts of pads don't work. If you sleep-wet, then pads won't work how ever hard you try so unless you are 'happy' for a wet bed, then you need nappies for night time. When I was refused them some years ago when I had significant bowel problems as well as urine problems I wrote back and pointed out that my wife didn't want to wear a snorkel in bed and with a few more comments I got the nappies.

You can write bad to the head of the continence service in your area. complain to your local health authority and see if there is any help available to help Patients too. Last resort is a letter to your MP which might well work.

Incidentally which country are you in - Scotland England and Wales or N Ireland? I only ask as Scotland and N Ireland have their own version of health services and, certainly in Scotland, they seem to be better funded and more helpful. (I was paralysed whilst living in England but have done a lot better since coming to Scotland!)

Let us know how you get on.

Hi he is in cheshire which is in north west uk south westish of manchester.
I'm in uk aswell so give me a shout if you need any help i can give or info?
I can give you my email and number if you like if ok by forum rules?

Ive been speaking to a few seller that are interested in helping inco people
One is a lady that does the real nappy market and she had real problems getting for her father.

The other is www.shop4pvc.co.uk they do the gary pants/terry ones also and suprima range plus own range that are ok