Early Help referral for chronically ill child - should we accept? (Sorry bit long)

[Parent235]

Hi, I'm a vintage MNer but haven't used it for several years, so it feels a bit cheeky to turn up and ask for help but I'm a bit desperate so I hope no one minds.

I have 3 DC, eldest now at university, middle taking GCSEs and youngest is 10 and has autoimmune liver and bowel disease. It was diagnosed just over two years ago and it's still not under control. He is under the care of a major London hospital and is being treated with various drugs, some of which are quite heavy-duty.

Anyway, he was missing a lot of school as you can imagine and so last spring as the pandemic was easing off it got to the point where he was struggling to go in to school, just psychologically traumatised by all the illness and having missed so much he didn't want to separate from me. So I gave up, and I think tbh the school was quite relieved too. We home edded for about six months, which I found difficult as I work pretty much full time and am a single parent, so he wasn't getting the level of education or attention he needed. During this time I made several attempts to contact education services to see if I could get him some tuition, but they weren't answering the phone, and when they did they said someone will phone you in September.

By September he had started a new treatment and was more stable, so I managed to get him a place at a school that's much closer to our home, and though he struggled a bit in the mornings, he settled in quite well. I was surprised to find he didn't need any academic help catching up etc, and he has made some lovely friends too. No behavioural issues I'm aware of.

His health hasn't been OK though. He has frequent flare-ups of his disease and has also had infections, which basically mean (TMI, sorry) he is woken in the night/early morning needing the toilet, and can have quite a lot of pain with this not to mention urgency. Obviously he has also had medical appointments, is often very tired, loses his appetite, and to add to all this his immune system is suppressed by three of the meds he's on, so he's vulnerable to other infections. Before Christmas his attendance was about 65 per cent. Obviously that is poor but it is so much better than nothing; from my perspective I think he's doing really bloody well.

He had about 8 days off (I think? Can't remember exactly) in December with a really bad cold, and then got Covid last week so missed a week with that too. I don't see how these things can be avoided; he is also late frequently because he needs to spend around half an hour on the toilet in the mornings, then will go to get his shoes on and find he needs to go again. We just get there as soon as we can, and I don't think getting up earlier would help as it happens when it happens.

Anyway, now school have suggested referring us to Early Help.
I don't think from what I've read that the sort of interventions they offer are going to be appropriate for our situation, but I'm prepared to be surprised. The thing is, after reading some threads on here, it terrifies me. It sounds like either I accept and it's a horrible intrusive nightmare, or I decline and they raise the level of concern.

First issue is that I'm worried school think something else is going on/don't believe me (obviously a huge problem if so). Second issue is I don't see how they can help unless they can make his illness go away, which seems unlikely.

Very, very stressed over this so any advice, esp from other parents of ill children, would be most welcome.

Thank you all so much. I took him in this morning then tried to approach one of the teachers on the gate and when I started to talk to her I very embarrassingly started to cry, so she made me come in and sit down for a moment and said she couldn't get hold of the teacher I'd been told would do the referral (who apparently is the mental health lead) so she would call me later. So I'm just waiting for that now.

RedHelenB, yes, I think you're right, though when he is poorly all he wants is to be near me, so I'm not sure what they can do. He's allowed to go to the toilet when he needs to, so that is already in place.

Singleandproud that sounds really lovely, perhaps they do offer something like that but no one has ever mentioned it so I will ask. It would probably help a bit when he is feeling unwell.

Thank you Oatmilk4breakfast I will add it to the list.

Londonnight thank you, that is really encouraging. We've found that the infliximab has made enough difference for him to be at school more than not, but they had to double the dose two infusions ago and I'm hoping the latest level is better. If it doesn't work there is the sister drug they give by injection, so not quite at the end of the road yet, we'll have to wait and see. I'm glad your boy (young man!) is doing better now. It sounds awful to start with... two years has been about as much as I can stand, so six must have been a proper nightmare.
I will try CICRA. I think I need as much help as I can get so this is all really helpful.

Oblomov, that really sensible advice. You will know well the chaos that is the King's booking system, such as it is... though everyone we've been treated by has been lovely and very clever. Everything just Takes So Long doesn't it. All best to you.

GoodbyeMrChips, yes it really does help. Thank you for posting and for your kind words. Your approach is very much like mine; I tend to be laid back about this stuff too, and try to avoid taking a top-down approach to the children, ie to accept that they are going to have problems of some sort or other and as long as they are doing what they can, I'm not going to worry about high achievement or super attendance because I know they are doing their best, and anything else is a bonus, in my eyes. So it is good to know I'm not alone in this, though sometimes schools seem to want to be more top-down about things.
I've been lucky so far, we've had a fair few of those letters but as you say they are easy to ignore after a while. Things have generally tended to pick up with the others, even when they had had a bad term or a bad year, but this time we seem to have reached a bit of an impasse. I'm shocked that some of your son's teachers won't let him go to the toilet. That's awful. Good for you for sticking up for him. It can get very tiring can't it.

JustKeepBuilding that makes sense now. Hopefully if we manage to get an EHCP(?)/EHCNA it will mean that if anything arises in future he will be able to access whatever provision he needs without having to worry about it too much.

I've asked for the thread to be moved though I don't know where it's going, if it's going elsewhere, but hopefully that means all your kind replies will stay put. I showed DS the first reply last night and he was really happy to see that it's not just us. Thank you all for making me feel not alone, too.

An EHCP isn’t necessary in order to access medical needs tuition. The provision should have begun once it became clear DS would miss 15 days. The days didn’t need to have already been missed or consecutive.

But it’s still worth applying for an EHCP SS the provision via that can be so much more than what is available via medical needs tuition. It can also include mental health support without the need to sit on any waiting lists and often more frequently/for longer than what is otherwise typically available.

Is he Year 6. Secondary next year? Do you know the Senco yet? Start making preparations for that aswell, get organised. All your documents in a folder ready to send.

JustKeepBuilding that's interesting that they didn't offer it initially. I think I will push for one even if that isn't what this is about, as it sounds quite important. Thank you.

Oblomov no still Y5. Though he looks like he's in Y3. Not sure which school he will be going to, but I'll take your advice once we get to that point.

Sadly LAs never offer EHCPs or medical needs tuition voluntarily. Parents have to fight for support, often enforcing rights via legal proceedings. But whatever you do, don’t deregister again even if DS can’t attend.

I work in Early Help and the way it should work is that it opens doors to more support for you for your other children for your son. It’s a way or working and a process. It’s not a referral.

Have you been in touch with your local parent carer forum- they are fantastic in giving YOU the support you need to navigate the balance of schooling/medical needs.

EH might put you in touch with a family intervention worker and IME they have been great in being an advocate and conduit between you and the school too.

I hope your son continues to feel well and school really work in partnership with you.

Thank you Bunce1, it's nice to hear of another positive experience.

Still waiting for school to get in touch, but in the meantime have sent them the letter we had from the hospital last time and a link to the CICRA page for schools, which is excellent.

So much useful advice on this thread. We have a different challenge with one DC and what has always worked for me was embracing all help... but taking charge as much as possible of referrals etc. and being very clear on what help you actually need rather than letting the other side guide things and tell you what they think you need. For instance we had a particular behavioural problem and they offered me a parenting course that was not going to help, and in fact would be counter-productive. I shared with them lots of documents that detailed the very specific behavioural challenges we faced and the solutions, and of course what we were already doing (all in writing) and asked for someone with these specific skills only.

I would be thinking of all the things you need (and this could be really wide ranging, not just support with the school) and asking for someone to help you with specific knowledge in these areas. This has meant in our case, they have either actually offered things that were useful (that I have identified) or backed off when they realise they aren't equipped to help us.

School have emailed back and said that they hope I am OK and that they don't agree with the referral to Early Help. It is a huge weight off my mind as I assumed it was their idea, but I think that must have been the school nurse, who doesn't know us. Anyway they also said it's just a process they have to follow re attendance, and not to worry about it, and that they don't think I'm failing.

Bit embarrassed now to have got into such a state. I will still ask about the EHCP though, and I'm really glad to have started this thread as it's been amazingly useful in all sorts of ways.

Thanks again for all your help.

BigotSpigot, sorry x-posts as I had the page open and didn't get the little refresh sign. Thank you, that is really good advice about taking charge of what he needs. I will bear it in mind as we go through this. Still not sure what they are going to suggest, but I have some starting points now thanks to the replies here.

I'm glad you've had a positive response from school and you mustn't be embarrassed about crying, you've been through years of trauma.

Hopefully they'll help with the transition to secondary.

I know you're not looking for health advise and you may well have already tried this but I found reducing carbs to an absolute minimum and increasing protein as much as possible really helpful (on top of medication of course). It really eliminated a lot of the bloating and mucus I was passing.

Hey Heathcote, that is really interesting. It sounds like it would be worth trying this. We haven't had any advice at all about diet so I was kind of wondering whether there are things that can make a difference. King's don't seem to have any views on what he should or shouldn't eat but I can't see that trying it would do any harm.
Thanks again for sharing.

Yeh i think diet is a very individual thing. Certainly what works for me is protein, minimal fruit (really just apples, avocado and melon) and well cooked veg. No greens, no grains. I can tolerant ice berg lettuce and cucumber well.

It sounds very counterintuitive as its drummed into us that grains and fruit and veg are so good for us but I find them too hard on the digestive system.

I tolerate protein extremely well, lots of fish, chicken, quality sausage, bacon, turkey steaks. I'm fine with dairy too.

Just worth a go. I've always needed medication but I do see an improvement when I est carefully.

Both consultants I've had have been very clear that changes to diet can be a useful short term measure (6 weeks absolute max) just to lessen symptoms so they interfere less but that diet will not impact the inflammation level and it's important to be getting all food groups/nutrients.

Rather than remove stuff from my diet I try to have more of the stuff that's good for the gut. Bone broth has definitely helped me as has probiotic kefir.

There are veg you can still eat even on the low residue diet (carrot, squash family, asparagus) and blueberries have been proven to be good for gut health.

Absolutely and I was àlso thinking that with him being a teenager it might be worth getting some professional advice and carbs are probably important for them at that age.

that's good that the school have said they don't feel early help is needed - if it was it would just be a supportive measure but as I said before , from the information you have given, I wouldn't feel this needs an assessment in my view. This is a child with diagnosed medical needs that needs reasonable adjustments made - and assessment wouldn't show anything different to this!
Ask school to do a care plan or pastoral support plan. Like PP have said - toilet card, use of disabled toilets- get your sons consultant to write a letter suggesting some adjustments that can be made.
Don't remove him from the school roll- as then you will be in your own to educate him and won't get any funded home tuition from the LA.

It would be worth asking for a copy of his attendance certificate to see what his absences or lates are recorded as.
If when he is late it's a L code that's a late, if it's a U code it late after register closes with is classed as unauthorised absence which could lead to EWW involvement - its best to be aware and open the communication straight away