Son's DLA has been declined re incontinence

[Greenqueen27]

My son is 4 years old and has suffered with bowel problems since birth. He has severe constipation and consultant at the hospital has done a lot of testing to rule hirsprungs disease.

He has never felt the urge to poo, even as a baby we have never saw him strain. He soils himself continuously 24/7. He has to have daily enemas and he goes into hospital for high enemas too but this is as and when. He has been prescribed sodium picosulphate and suppositories which now do not work to open his bowels.

he has had manual evacuation and Botox under GA.

His issue causes flare ups where the blockage will be so big it causes a temperature, larger than normal amounts of soiling and he loses his appetite for days at a time. some of the medication (mainly sodium picosulphate) results in him vomiting for days and becoming dehydrated. He does not tolerate the enemas and it takes a long time to do them. I have tried to keep this short there are lots of other ill effects he deals with on a daily basis.

i gave in lots of supporting evidence, reports from gp, dr at hospital, enema nurse, surgeon and letter from nursery. The nursery manager has said that he has fallen behind in certain aspects of his development in nursery due to be constantly removed from play settings to have a change of clothes due to the faecal incontinence. I called today because some evidence was sent separately and I hadn't checked to see if it was received and they informed me a decision was made yesterday and that it was turned down but I'll find out why in the letter which I should receive soon.

I spoke to his nursery manager and she was very surprised given the level of care he needs compared to other children.
I have a feeling it has been declined due to his age as looking online it seems a nappy solves the problem for 4 year olds and some 4 year olds are still in nappies anyway. However, his level of care is not just a child that hasn't been potty trained so if this is the case I don't think it's fair. I wasn't able to put him in the school nursery his sibling attends because they don't have the staff or facilities to clean him when he soils himself as much as he does. I don't know what will happen in September when he starts reception.

i don't really know how DLA works, I just feel upset because he struggles and I'm not the best at wording things and didn't have the form looked over so I'm not even sure if I've filled it out right in the first place. I added pages describing his condition in my own words to help.

has anyone experienced similar? Sorry if this makes little sense.

Many applications are rejected but awarded on appeal so definitely appeal and ideally with help from an advisor from a relevant charity.
Is he going to need an echp at school? If yes it’s wise to get the ball rolling

Not exactly the same but my son has a medical condition which causes him to vomit for hours on end. On the award letter it stated he was awarded high level care as he requires a much higher level of care multiple times a day and through the night, than children his age - he is 12. Was this your first application? Maybe its because your son is still very young and some children still require nappies etc? My sons was a renewal which i think is easier. I would definitely appeal.

DLA is about whether a child needs significantly more care than a child the same age without his health conditions. I imagine it would rest on how often he is needing to be changed etc as as you said yourself a lot of other children will still be wetting or soiling themselves at four. I'm not sure you could argue he's falling behind based on hw many times he's needing changing unless it's very frequently.

I would appeal ask maybe 1 of hid HCP to help with his appeal, your maybe right about his age but if he has a medical where he might not be continent then they should be taking that into consideration.

@Autumn1990 an ehcp hasn't been discussed with anyone yet but his nursery has said they will speak to me before school starts to try and help with something in place because of how anxious I am about him starting. I don't know if they're referring to this. - to be honest I don't know a lot about it.

@4Bangles i think it is due to age but I have a 3 year old who hasn't been potty trained and their needs are so unbelievably different. It's not just the effects of his condition it's the effects of the medication he has to take too. I will hold out hope for appeal - if not apply when he's older

Look at the Cerebra and Contact sites. They have guides on how to fill in DLA forms and, I would imagine, where to go from here. I think you ask them to reconsider and then if that fails take it to appeal from memory. It is all about how you word it and how much additional care your child requires compared to most children their age. From what you’ve said here the care is required throughout the day so Mid-rate care is what you should be getting.

School is acting illegally by refusing to meet his needs in the preschool. Think carefully about whether you want to send your child to a school that acts like this. Start conversations with the school about needs early!

I'm very surprised that it has been turned down. As a previous poster has said many decisions are overturned at mandatory consideration and appeal.

Is there any charity or organisation that knows about bowel conditions in children that could help and support you?

@Babyroobs he needs to be changed very frequently including through the night because of leakages even in standard nappies. The medication he takes causes pain, vomiting and often excessive diarrhoea for hours and this has to be taken daily. Very different from a child who has just not been potty trained.

I think EHCP's are so useful when applying aswell. My sons school and doctor have both written covering letters which i attached, but it was refused when he was younger and I appealed as my life literally revolves around being within 5 minutes drive to school, constant appointments, medication trials and having below 70% attendance. I think it could be your childs age, def appeal, it cant hurt. Good luck x

Sounds awful. If it is turned down I would definitely ask for a mandatory reconsideration and get help to write this. the nappies alone must costs a fortune.

@tothelefttotheleft he was under our areas continence which may have helped but he missed two appointments because we moved house and they failed to update the address when they were notifies so was discharged. Now we are waiting to be referred again but I should have got them to help in the first place.

I think it’s because some children are still in nappies / pull ups at that age and the needs need to be substantially greater than other children . My son has very similar issues and although had had dla since age 2 it was never given due to his continence issues until he was older than 6

Just noticed you said he needed changed through the night too. He’d possibly be entitled to high rate. If you don’t work (much) once you do get DLA don’t forget to apply for carer’s allowance.

Def ask for a mandatory reconsideration as well though it’s always worth doing that

It took me a while to get the hang of the DLA forms as I didn't realise all the stuff that was obvious to me as a result of various bits of evidence I provided didn't necessarily translate to exactly what extra help my DC needed.

When you appeal, make sure you really are stating the obvious and listing all the extra support DS needs, as iME, no-one at the DWP will put two and two together from the evidence you provide, and if you haven't stated that you need to do x task for DS, they won't be able to award a point for x task, even if you've provided evidence that makes it bloody obvious!

@LonginesPrime I think that's where I have gone wrong. I am kicking myself for not getting help with the form - I always think I know everything!

@Troglo yes he wakes in the night too. Both with soiling and pain. I did put it on the form but I really think I've maybe filled it in wrong. Or it's just down to age.

Dd has ASD and it was only on our third application when she was 5 that we got an award.

I went belt-and-braces with the last application. Got supporting letters from the school and her NHS Speech Therapist which they were both happy to provide. Would your dc’s nursery be happy to do the same?

I filled out the form itself, but also attached a bullet pointed additional page where I went into more detail and gave explicit examples of her additional care needs in day to day situations. That part ended up being 1200 words long as I provided additional information for every question on the form.

We have DS who is a year younger and I made direct comparisons between what level of care they both needed- ie although ds was younger, dd needed more support.

Remember to be really clear about how many times and for how long you need to help your dc overnight, ie. When you’d otherwise be sleeping.

Best of luck- it was soul destroying feeling like I was begging and focusing on how dd was so different. We ended up getting an higher award, which I never thought we’d have got in a million years.

We've all been there - I couldn't believe it when ours got refused the first time as I sent them loads of evidence...

I also naively thought the DWP would obtain DD's medical records from the GP direct as they asked for our consent to do so - then, when I spoke to them after the rejection, I realised that they (obviously!) don't have time to go through everything themselves and that I was supposed to tell them literally everything I wanted them to take into account myself - it was a real lightbulb moment as I had no idea that was how it worked!

That sounds tough! How do you cope with his skin? We had trouble with DC before we realised it was dairy intolerance. Keeping skin healthy against constant diarrhoea is hard! That’s worth a mention. And the washing!

@FirstFallopians thank you that's actually a good idea to make a comparison. I have a daughter 17 months younger who isn't yet potty trained and I couldn't even compare their needs. His nursery have said they will help me appeal and they're really shocked he didn't get it to begin with. I don't think I was clear enough at all on the forms so I definitely won't do the appeal myself. Do you know how long appeals take? Or at least MR?

@LonginesPrime I feel like I added lots of evidence but I have a feeling it was my explanation that wasn't clear rather than not having the evidence to back it up if that makes sense? The form is so confusing I don't think I was very clear at all. It was that long ago I filled it out I have no idea what I said!

As the mother of a child who witholds but not even anywhere near dealing with the level of issues you are, I think then declining the application is ridiculous. Poor you. Definitely appeal it and I wish you luck. X

@pickledandpuzzled i vaguely mentioned this but I really should have gone into detail because he does suffer with his skin. He has had steroid creams in the past because of how irritated the skin is, i do lather him in Vaseline down there each time he's cleaned To create a barrier which helps but the skin on his genitals are constantly sore.

I went to MR with both denials, and to tribunal for the second one.

We’re in NI and things don’t seem to take quite as long, but it was about six weeks for MR.

I know other parents on MN have had success at tribunal, but it was horrific for us. The panel were horrendous- I ended up in tears sitting infront of them while they accused me of lying. Fucking awful experience. We withdrew and I submitted another application a few months later and that’s when we got the higher award.

@Hungrycaterpillarsmummy thank you so much - I think any sort of issue with going to the toilet can be so frustrating. We thought he was withholding but we only found out two years ago the fact he didn't have his first black poo til he was days old was actually a cause for concern!