Would my son’s toileting and bedwetting needs qualify for DLA?

[YourHangryMintBear]

I know the ultimate decision is down to DLA but just wondered if I could get people's opinions on what they think please 🙏

I've just filled in the forms and sent off for my 5 and half yo boy. He has polyuria (excessive urination) and nocturnal enuresis (bedwetting).

He needs the toilet 50+ times a day, which each time needs supervision and support, has multiple accidents because he cannot hold it as his body makes large volumes of urine very quickly. He's in nappies overnight and needs changing 3-4 times a night and still gets the bed at least 1-2 times on top of this.

If he cant get to a toilet or if we go out he is constantly anxious and gets very distressed.

I don't even know if I filled the forms in properly tbh, I have a supporting letter from his GP but thats it, his school said they wouldn't give a statement unless DLA contacts them and hes awaiting referrals for multiple teams currently.

I didn't know if close friends were allowed to give statements so didn't send anything else off.

Like i said at the beginning I dont know if they will award anything but opinions would be appreciated. TIA

Not at his age. No.

I disagree with the pp. As you say OP, no-one here can say for certain, but it sounds like DS should be eligible. DLA is based on needs rather than diagnosis. It is judged in comparison to typical DC the same age. It is within the normal range for typical 5 year olds to have occasional accidents during the day and to not be dry at night, but what you describe goes beyond the normal range.

As for evidence, if referrals have been made, you can request copies of the referral letters and send them.

Does DS have an intimate care plan &/or IHCP? Does DS have EHCP? What about IEP or whatever DS’s school calls their SEN support plans?

Ooh yes I have sent the referral letters from the GP and the advanced nurse practitioner that were made- he doesn't have anything else you mentioned at the end because he was in reception and his teacher just gave him unrestricted access to the toilet (with supervision) so no formal plan was written with the SEN staff, however I do plan on changing this when he goes into year 1 in September

He goes to a mainstream school?

It is disappointing the school hasn’t been more on the ball. Have you had any conversations with them via email? If not, it is a good idea going forward to follow up verbal conversations with emails to create a paper trail. Not directly for DLA purposes, but in case you need it at a later date.

Is one of the referrals to the continence team?

Yes he does

Yes one is to Paediatrics, one to continence team and one to urology

So he’s going to the toilet with SEN dozens and dozens of times a day whilst at school?
He is being changed multiple times a day or he wear a nappy?

DC can be in MS and still be eligible for DLA.

He goes to the toilet with whatever teacher or teaching assistant is free to take him at the time, his main teacher counted one day and in the time she taught him which was about 4 and half hours of the day he went 36 times. He has 1-2 accidents consistently at school as well as at home- its mainly due to him producing large volumes of urine and having urgency to go and not making it in time.
At night he has to wear a nappy which we have to wake 3, 4 sometimes 5 times a night to change mostly because hes leaked through them so we are then also changing bed and clothes

Can he at least wear a nappy to school? 36x in a day is so disruptive for him and also the other children and the fact an adult needs to be with him who could be back in the classroom

The problem we have is that because of his age he's very anti nappy in the day time- we cant even convince him for journeys so we end up stopping so many times. So school would be a huge no from him, but even if he would wear a nappy at school it isnt normal for a 5 and half year old- same with him going so much, its outside normal toileting for his age

Would DS consider pads? Not instead of going to the toilet, but just in case for the times he has accidents?

But he is missing out on more than half the school day if he is traipsing off to the toilet 36x in a day.

and what happens over playtime? He must be missing out on so much playtime and making friends.

added to which… it will take away a much needed SEN worker for half the school day too

How many accidents is he having a day at school? Surely that must be embarrassing for him?

Your last sentence is irrelevant. If the school needs more funding in order to meet DS’s needs, including staffing related, they should request an EHCNA. They could also apply for high needs top up funding. Decisions around wearing incontinence products should not be based on the school being worried staff are being taken away from elsewhere.

Yes so I’d say the OP’s primary focus needs to be with the school. so no formal plan was written with the SEN staff,

this should have been urgently addressed before the start of reception

Yes, there should have been a plan in place before now, but the absence of a plan is not a reason to put a child back in nappies. Not at all.

I'd like to think if the school couldn't manage they would have had meetings with us by now, they have said multiple times about how much he needs to go to he toilet and the assistantce when he has an accident but haven't requested putting any plans in place- like I say going into year 1 may be different and I will be going forward asking for a meeting with the SEN team

Like I said before other than this issue he has he is a strong willed 5yo boy who for some reason cares about wearing a nappy more than having an accident, forcing him won't help the current anxieties he has around going to the toilet

He has an access card for it too so I'm trying what I can to make things as easy as possible for him but also taking into account his feelings towards it too

But surely you want better for your boy?

Surely you don’t want him missing out more than half his schooling, missing out on playtime, on forging friendships?

and if he’s having multiple accidents… then takes up even more time with clothing changes.

Course I want better, but despite these issues he has friends and he's happy- if i was to force him back into nappies when he doesn't want to, he would start to resent going to school, like I said going forward may change things but luckily reception is a lot of play still with learning mixed in and he has picked up a fair bit along they way

I’m not talking about forcing him back in to nappies

but… what’s the end game? Does this improve with age? Surgery? Or is this going to dominate his entire schooling experience?

I'm not sure what the end game is yet because we are awaiting referrals to multiple teams to hopefully get a reason as to why and then potentially treatment depending on the cause, we've been managing this for over a year already- unfortunately we our first peadiatric referral was lost by the hospital which they have admitted fault for. But if there isn't a definite reason then my hope is the continence team will help going forward

Unfortunately I feel it is like many other conditions, they affect life and you have to adapt how best fits that person, not one answer fits all

I think you need to urgently speak to the school before new year.

As he ages… he will miss out on so much crucial learning and, sadly, social development