self cathertising in school

[hollymistletoe]

can anyone advice me what i need putting in place at my 15yr old daughters school as she is due to return after being absent for 5 months and will have to self cathertise every 3 hours

[Charlie5angel]

Hello, I know sort of what your going through, my daughter is 12 and going through exactly the same thing, I spoke to her school and basically they said she could have use of the disabled toilets and have a space to put all of her supplies whether it be in the toilet she would be using or a she could get a trusted member of staff to hold on to them until she needed them. The senco teacher also said that my daughter could have a t/a come and help her if need be or they would employ a trained nurse to help her with the procedure, unfortunately for my daughter, she cannot do it as she is so frightened of it all, we are now waiting on an op to help her empty her bladder, it's a lot to ask of any child to do this procedure, your daughter is incredibly brave and strong, I just think mine is just that little bit too young to be doing it by herself and we haven't had much help from anyone medically to support her, the hospital were fine but we had to wait for appointments to go through training to self catheterise herself which she just couldn't cope with. You would need to speak to the senco at the school and get an Educational health care plan drawn up which they can help you with as she has special needs that need addressing, and a private place such as a disabled toilet and a place to put her supplies. I hope this helps and I wish you and your daughter the very best of luck xxx

[hollymistletoe in reply to Charlie5angel]

Thank you for your help much appreciated my daughter managed to pick it up well just as well as we been told it's for life there is no treatment that can help it is a lot for our kids to have to cope with it all come out of the blue . we have. had no support what so ever from our hospital or local community nurse which is disgrace x I hope your daughter gets the support and help she needs 12 is young to have to deal with this x

[Char1987 in reply to Charlie5angel]

Hi there my daughter Is 9 years old and has to self catheterise 4 times a day , it was hard at first but now it's a part of her every day routine , her consultant is expecting her to be doing it herself which is all too much , I have to go into school once a day to do it , her senco worker is really good and has had a pull down bed put in the disabled toilet and has sorted out a care plan, she has also offered to go to the urologist nurses to get trained to do it , I said no as my daughter doesn't want this , neither do I , my daughter is academically behind 2 years , she has been tested for dyslexia/ dyscalculia and dyspraxia and has passed everything and they think the previous years of rushing to the toilet 3-4 a lesson has took on a massive effect , since self cathing she's only going once or twice a day so hopefully this will help her education.

[hollymistletoe in reply to Char1987]

my daughter has excepted nothing can be down and this is for life it's just frustrating that our community nurse has given us no support and hasn't helped school put anything in place so she is still not able to return to school i wish there was more support for these kids i wish your daughter well x

[Char1987 in reply to hollymistletoe]

We also have no help from community nurses , it's frustrating that I spend a fortune on pull ups and sanitary wear too, our senco worker contacted the school nurse who prescribes the nappies but she said their budget had been cut and only severely disabled children were able to get them at the minute and to contact the I contininence nurse at our gp surgery which I did and they only deal with adults , we see the consultant this week so I am going to ask him as she's goes through two a night , we have been self-cathing now since July last year , she huffs and puffs some days , I meet her at the disable toilet where her supplies are straight from her morning break time , my issue with my daughter learning to do it herself is the hygiene side of things , she's just too young x

[Charlie5angel in reply to Char1987]

Your daughter is incredibly brave to be doing this all by herself, I do wish my daughter had the courage to do it. It's not for the want of trying as we have had several appointments for the training of how to self catheterise, it's just she had a bad experience of one being inserted for an MRI when she was 8 and since then, it's been a real mental block for her, she already suffers from severe anxiety and all of this has been too much for her.

We are still waiting on the op for her supra pubic catheter to be fitted as it already feels like a life time 🙁 She would rather have this done than go through the ordeal of doing it herself, the consultant was great with her, speaking to her face to face and listening to what she wants, obviously we all know it would be so much easier for her to self catheterise herself but it's her body and he is very respecting of that as it's not easy for anyone to do it let alone a child, hats off to your daughter, so pleased the school are onboard with her needs xx

[Apache21]

Our 6 yr old daughter has been doing it for a year and is likely to have to do it for life. She has an individual care plan at school which highlights her specialist support needs and the school have trained and paid for extra staff to supervise her catheterising, in particular to ensure that she adheres to the strict hygiene requirements. She has use of a disabled loo where there is a cabinet that holds all of her things. Its been a long haul to get all this in place, and not without much criticism of a lack of effective toilet training, blah blah blah, but we've got there now. So far she's kept up academically but its a miracle as she's spent more time in the loo than the classroom. Good luck!