To think this would be discrimination?

[ikeakia]

My son is 10, in Year 5, has Down Syndrome and a Mitrofanoff catheter. He is also in a mainstream school. I’m fairly confident that this combination is very rare in a mainstream setting and as such there won’t be any protocol on how things should be done as there would be for more common issues like diabetes. He has started to self catheterise confidently and can manage the process from start to finish with no more intervention than a short reminder of how to open the packaging, but this will be picked up quickly and requires no physical contact.

Currently I’m going in to oversee this at three points throughout the day, and I was doing it for him until he could have the independence of doing it himself. School rightly said that staff would have to be trained by medical professionals to do it for him so I didn’t have to go in. This would be at a cost to the school.

However now he is self catheterising they are still looking up protocol with Health and Safety with regards to their position. Surely if he can demonstrate that he can be in charge of his own personal care then the school should support this to encourage his privacy and independence? And if a NT child with the same equipment would be allowed to self catheterise then not allowing him to despite his ability would be discrimation?

I’m honestly not trying to be difficult and obviously keeping him safe and healthy is the most important thing, but I see no point in paying for staff to be trained in something that they don’t need to do and taking away his independence and privacy when this is something he’ll be living with his whole life.

Any advice very welcome.

There would no other way to have staff signed off as trained. It’s not possible to use a doll or similar. I had to learn practising on him.

I can't see that it's discrimination and I think it's a sensible option for the school, but I wouldn't consent to him being used to practise on. Are you sure that's the case? Catheters can obviously introduce infection so aren't given without need, so repeatedly catheterising someone for training purposes sounds bizarre. My DH is trained to insert catheters but has never done it on a person, just dummies. Perhaps it differs for different types though.

Awareness training only was what happened with my dc (different medical procedure though) because he is independent the staff trained would not be able to keep up their competencies (its not just a case of training and being able to do it). He therefore has a care plan that states when they need to call me and like you I would be on hand. The rest of the time he independently sees to this.
The NHS didn't charge for training and also wrote the care plan.

Why would there be a cost involved in training staff? All the children I know with a Mitrofanoff or stoma have had their own specialist nurse go into the school to train the staff. The nurses have done it as part of their job, no cost involved for the school.

A Mitrofanoff is not like normal self Cathing, which is why you can only practice on the person with the Mitrofanoff. Normal utethral ISC you can practice on a model.

Just spoken to the nurse. They don’t do training in schools if the child can self catheterise as the aim is for them to have independence.

We don’t have a specialist nurse. Never even met the community nurses and my doctor had to put me in touch with them.

The nurse today confirmed the charge to the school so I know this to be true for this area. The only person currently ‘trained’ is me, and that was just through practise at home, and being signed off as competent by GOSH.

She said that having DS is no reason for the school to not allow self catheterisation and that they should work with me to encourage it.