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.

My DS also has IBD so I can sympathise. Our situations aren't entirely comparable, because mine is relatively well and although he has occasional bad days which leave him in a lot of pain or completely exhausted, generally he manages to go to school. But I know how miserable and wretched this disease is so I absolutely feel for you.

It sounds as if school feel the pressure to be 'doing' something about his attendance. But I wonder if they fully understand what IBD is. Have you asked your IBD nurses to make contact with school and explain why your son may need regular absences? Having an expert on your side can help.
The other thing that strikes me is you say that your son has been traumatised by the illness. I also find it difficult to judge when my son really does need to stay off school because he is in a lot of pain, and when it's just a case of tiredness and he feels like he can't manage - but once he gets there, he's generally OK. Does your hospital have a child psychologist for IBD? I wonder if they could help him with some strategies for deciding when he is really too ill and when he just needs to be a bit brave. If you took these steps it might be a good way of showing the school that you are doing what you can to improve his attendance.

I don't know in itself whether an early help referral has to be bad news. If you can educate whoever is assigned to you on IBD you may find they can advocate for you. refusing help might look a bit obstructive, so in your shoes I think I would engage, at least to see what they have to say. If they meet you and see that you have older children doing well, they may realise you're not a useless and feckless parent and cut you some slack.

Thank you so, so much Biscuitsneeded. That is such a helpful reply and I'm incredibly grateful that you get where we are with this, as I don't know any other parents in the same boat. I'm really sorry your DS has it too, though I'm glad he is doing relatively OK.
I get what you mean about days when things are really bad and days when they can just about manage. I think for DS3 it's still so unpredictable that he gets worried it's going to mean an accident at school, but he's had a really rough couple of years with it and I think we're both short on hope, if that makes sense... he's now on higher-dose infliximab + azathioprine + pred etc etc and nothing is working very well.
Last week we moved him upstairs to his own bedroom for the first time, as he was on a single bed in mine for the past 10 years basically (once he stopped sleeping in mine!) so that's how bad it's been.
Anyway, I think you're right that the school feels under pressure to do something, given his rubbish attendance. I'm sure they mean well. I think I just got the fear that they think I'm a secret alcoholic or something and that I'm lying to them about why he isn't there. Just being paranoid probably. At least, I hope I don't come across as feckless 😁
I've already offered to get the hospital to send a letter, and the school said yes please, but that was only this morning so either they have spoken to the CNS and still think they need to do something, or else they haven't yet. I don't know; the hospital sent a really good letter to his last school, so I'm hoping they will provide something like that again.
Your idea about a psychologist is a good one. Actually our local paediatrician did suggest that last time we saw her but I haven't managed to ask about it yet, so much has been happening. Also we are a 3 hour drive from London so it might be difficult to organise unless it was local. But I will definitely chase that up.
Yes hopefully you're right and they will talk to me and get an idea of the situation... not sure I can claim the older ones are well-adjusted, but they survived childhood which reassures me somewhat...!

Thanks again for being so helpful and just for replying really. All the best to you son, too.

I think this may be in the wrong section Op. SN, Medical, Parenting, Secondary sections might get better answers.

I don't know enough about Early Help to know if it's beneficial or a threat. But why don't you address your concerns full on. ask the school : what is behind this, , ie (do they think something else is going on, inferring something else ). Or are they just concerned about attendance stats and covering themselves, box ticking to show they've done all they should have, by referring you?

And ask them, secondly, what help are they actually envisioning. The. You can tell them how all of this won't help.

But agree with pp, get a nurse to talk to school. Get her to fight for you. (Years ago I had a fab woman from NAS put my primary school firmly in their place over Ds1's Autistic traits. )

I can't help re your question but I have ulcerative colitis and I just want to say that it can take a lot of trial and error to find the right treatment but it won't always be like this. Remission is absolutely achievable and that will mean that the frequency and urgency will lessen to levels. Is he on a biologic treatment yet?

Go with it. It's not a threat. It can allow all services to work together and may open doors to new services.

Also has he an ehcp on medical grounds? Some schools use this to access the services needed to get ehcps and access to extra funding.

An early help assessment is not something to be worried about in fact it may help you get more support for example through the local provision for home based/online education for children who are unable to access school due to their needs. My local service links with the hospital school for children who are often admitted due to their medical conditions. They are often completed for children with additional SEND or healthcare needs.

Often a school nurse will be present at the Team around the family meeting (which you attend at the school normally) if one is arranged after the assessment is completed. School nurses can help with pushing through referrals for local healthcare support such as incontinence services, dietitians etc. They can also contact the GP and local paediatrician on your behalf if needed for getting repeat prescriptions sorted if you are struggling to get an appointment or get through on the phone. One thing many hospitals offer for children with ongoing healthcare needs is access to a clinical psychologist for support with trauma. The local paediatrician can definitely refer him for this if it would be easier to access locally than via his specialist team (although the specialist team may have a specialist nurse working with them who may be able to help push referrals through for this too).

If you have a copy of the letter sent to the last school that would be useful to provide to them until you have managed to get an updated letter. The GP or local paediatrician could also provide a letter if you speak to the GP or the paediatric consultants secretary, although the GP may charge for this. If you are open with school about his condition and how it affects him then they will be able to help support him and the family better especially when he is unwell and unable to attend in person.

The school should consider completing an individual healthcare plan to help meet his needs. There is a template on the link:

www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions--3

The school do have attendance targets and 65% is probably some sort of threshold trigger. We had a phonecall from the local council education welfare officer when my son was younger due to his attendance. Once they were aware that he was autistic and sometimes wasn't managing the environment, especially when unwell and they could see our other children were all in school even when he wasn't they didn't have an issue at all. Never heard from them again.

I also have IBD, diagnosed at 16. I just want to say that you sound like an absolutely amazing mum. I can imagine the absolute hell you've been through with this, I remember the permanent worry on my mums face when I was really ill in the early days, it affects the whole family.

I was so terribly ill for the 1st few years post diagnosis. I weighed 6 stone, I lost my hair, I was incontinent, I couldn't sleep, couldn't eat. Desperate times and no treatment seemed to work. However, I did eventually find remission. I went on to study a levels and a degree in Biology and have worked in the NHS for over 20 years now.

Don't give up hope. Celebrate to small wins, teach your DS to enjoy simple pleasures, help him to understand that life's not a race, everyone's on their own path and happy days will eventually come.

I'm sorry that's not at all what you've asked about in your OP, I don't have any experience with the school system however, my instinct says to engage with them.

All the very best.

Early help can be useful if there is there if a specific outcome you want to achieve.

I've had Early Help involvement twice in the past, I have 2 disabled children.

I found it very helpful.

What happens is they do an initial assessment, where they ask a lot of questions, many completely irrelevant, but they are trying to find out the areas of "difficulty". Then you have meetings where they invite all the professionals involved with your child, and discuss what support you need and what actions need to be done to move things forward.

With my DC, who was having difficulty attending school, the meetings discussed referrals to services she needed (OT, SALT, CAMHS). Eventually we discussed a move to a specialist school, and the actions required to make this happen.

It was helpful because the school, paediatrician, SALT and her counsellor attended the meetings at various points. So the school got to her first hand from the medical professionals what the difficulties were which I think made them take it more seriously than just hearing it from me (shouldn't be the case but here we go!).

Also the regular meetings meant someone was regularly checking and chasing the "actions" which meant I didn't have to try and do it all myself. And if any new problems arose they could help. Also my early help social worker was an absolute gem, and dealt with the school when they were being arsey with attendance, and also got DC seen by CAMHS after they rejected the referrals from school and GP.

What @Heathcote294 said is lovely.

I have a child with an IBD and some days are tough. I would accept any help offered from school. Presumably he's still at Primary? Secondary schools can be a lot harder when dealing with attendance issues etc. Once he starts there, be prepared to shout loudly. If you have letters from his hospital consultant or appointments, send in copies of these for their medical records and ask for a toilet pass from the nurse.

He won't always be so ill. There will be a concoction of medication that works for him, and it sounds like he has good doctors. You sound like a great mum OP.

Also the good thing with early help is that you are in charge of it. You can finish any time you want, once you no longer need the help. You can decide who leads the Early help plan and meetings (we asked our EH social worker to lead ours as she was much more supportive than the school, who didn't seem to know what they were doing). The whole process is something that is done WITH you rather than TO you IYKWIM.

I work in Early Help, and from the information you have given It may not be early help needed. This is an education situation, and school need to decide if they are authorising the absence - which in this case they should be in my view - or unauthorising which needs education welfare input. If it's authorised then there is limited that school can do apart from continue to support and encourage attendance.
I would suggest you get your sons consultant to provide medical evidence that his illness can impact his attendance and provide them with that, call in each time he is Ill or going to be late etc.
I can't see why school cannot hold a meeting with you and the medical professionals for advice - doesn't need an early help worker to do this.

Declining early help isn't a red flag as such, unless of course there are repeat referrals made and unmet needs of a child that are ongoing which is then looked into case by case. Even then, if a social worker becomes involved then it's looking at getting the right services involved,

Be aware, thresholds of support needs are different in each local authority (although the basis is the same) and there are different levels of support.

Oh and sorry another thing- if you decide to electively home educate yourself child and officially deregister them from school, the LA do not have to provide tutoring and will not - well not mine anyway!
It is up to a parent to source and fund this.

The situation is different if a child is still on a school roll but cannot access due to medical needs and this is backed up with a medical professional stating a child is not fit for school

You’ve been given good advice here, OP; the only other thing I would mention is that you consider applying for DLA for your son based on his higher-than-average care needs and the impact on him, the family and his education. It’s a bit of a minefield but does open doors to accessing extra support for him.

Have you also contacted Crohns and Colitis UK.? They have literature for schools and support groups for young people with inflammatory bowel disease.

Wow, thank you all so much. I've just woken up worrying about this and come to check the thread and I'm a bit overwhelmed by all your kind posts.

Oblomov, thank you. I will do as you suggest and ask school about the nature of their concerns as they weren't very forthcoming in their email. At least that way they might put my mind at rest and stop me going nuts. I'm heartened to hear you had a good result with the NAS person. Hopefully our CNS team will have a similar effect.
Also I might ask for the thread to be moved, I was worried about it not disappearing but the advice has been so valuable that I don't want it to now.

Luckypoppy, that's a good point. No, he hasn't got one of those and tbh it sounds like perhaps it is overdue. In which case bring it on, I think.

Choconuttolata, thank you for all the excellent points you make. The idea of some psychological help for DS would be great, I'd really like him to have this, so that would be worthwhile doing this for if they can arrange it. Our local paediatrician didn't know if any was available but hopefully the EH people are better connected. I think it would be good for him as it does get him down sometimes.
We had a meeting about his health needs before he first started at the school, and I thought we had them covered, which is partly why I am a bit worried given they seemed fine about it at that point. I guess they needed to see in practice how he would cope/not cope.
GP is kind but not normally willing to treat or prescribe for DS now he's under King's as he's "too complex" so I'm afraid that's not an option (so much for shared care!) but I guess the more people involved the merrier, even so! Thank you for the link to the template, that's very useful. Also I'm very glad to hear the EWO listened to you. I think it's that word "concerns" that's doing me in a bit. Hopefully I can settle them if there are any suspicions that something is going on.

Heathcote, that is such an absolutely lovely message to read and has given me new hope. Yes it's felt endless, and he is still the same weight and height he was nearly three years ago, and sometimes it feels like I'm losing this tiny person. I will hold your words very close. Thank you.

Columbina, that all sounds extremely positive and it's really useful to hear what happens. I think you're right that people will listen to the professionals even if they don't listen to me, though it makes it difficult that his nurses are all in London and we're not. Still I guess there will be some way to organise it so school feel like they have back-up for allowing him time off when he needs it. As long as they listen to someone, I don't mind! I hope you are right that we will have some control over the process.

MermaidEyes, thank you for the hope. I'm sorry to hear you have been through this too but it is really good to hear there could be an end in sight. Thank you for the heads up about secondary, too. I will be better prepared now I know that.

Phone about to die so had best post this and will answer others in a bit.

Now charging!

Itonlytakesaminute, that's very interesting to read and tbh that's kind of what I was wondering, as in why have they done this when I already tell them everything and always call or email when he is off. I thought we were getting on pretty well so it was a bit of an "Oh" moment when I thought perhaps they are just pretending to believe me.
It's good to hear it set out so simply though, and I wonder if the thing about deciding whether to authorise or not is bothering them. I will ask.
Just for background, we live in an area with especially high deprivation and I get the feeling the school is very much used to dealing with families who have problems of all kinds, so I don't know if they are perhaps seeing things that aren't there in our situation or if they are just following the process they are comfortable with.
Good point about staying on the roll in terms of getting help with tutoring if needed. I did read that last summer but had forgotten. My instinct last night was to take him off the roll again out of fear and panic that someone would try to take him away, which I think would be a bad idea especially as school has done him a lot of good and he really needs the social interaction. I have to calm down a bit I think!
I will report back once I've spoken to them properly.

Hairyfeline, thank you for the idea. I hadn't really considered it as we do have enough money thankfully at the moment and I've heard the process for getting DLA is quite arduous, but will give it some thought.

Purplepurse, yes, I've got some literature from C&C and will check that to see if it's got advice for this kind of situation.
Thanks for the nudge.

I use to work in early help. They basically do an assessment of your situation and look at what ways you need support (if any) so they can refer to counselling and other services. Do some one to one work with your child (typically around emotions/behaviour) if suitable. They can also recommend parenting classes if required. I can't see there will be much they can do to change your situation but it may help your relationship with school if you are seen to be collaborating. Does your child have an ehcp? If not I would look at applying for one as that can state the support school needs to give your child.

Thanks autienotnaughty, that's reassuring. No, he doesn't have any kind of plan so far. I can imagine it might be helpful to have one in place.

Huge apologies ItsNotReallyChaos, I did read your reply but it got lost in all the scrolling on a dying phone at 4.30am so I'm so sorry I didn't reply. I'm not brilliant with phones and have never used MN on it before so it's all a bit new.
Thank you for posting and for letting me know that things might improve. That is always a brilliant thing to hear. Yes, he's on a high dose of azathioprine as well as the infliximab, he didn't respond to 5-ASAs (well he did but they made him much worse!). He seems to be one of those kids who doesn't respond in the expected manner. I'm hoping his calprotectin will come down and stay down, but last bloods the infliximab wasn't at a therapeutic level so we're not quite there yet. Sigh.
I really hope you are right that we will find the right combination. So much of life is getting sidelined while we wait.

School wan't him to attend. Ask for what he needs in order to do so, toilet pass, him not being penalised for coming late to school, working by himself if he can't face the classroom etc etc.

I think it's really important to have a proper face to face meeting with school and really explain what his difficulties are and to layout some solutions.

Things DDs school offer:
Toilet passes
A quiet room where children who aren't upto the full classroom experience can go to get on with school work, this room has individual toilets too for people like your son, it also has bean bags etc for children who haven't slept well the night before to nap, very common in many children with additional needs. It isn't as good as being in the classroom but it's better than being at home and they still get some social input from peers.

Perhaps also explore some contacts with childrens not for profit orgs like Starlight Childrens Foundation who can sometimes advocate for parents and children or at least help you meet others on a similar part? Might help add weight to your case when talking through?

My son was diagnosed with crohns when he was 8 [ he is now 22 ], so I can relate to what you are going through. We went about 6 years of hell with his IBD trying to get it under control. He started infliximab when he was 14 and it was a life changer for him. We still had lots of ups and downs, but on the whole he started to control his symptoms.
We were always lucky with his schools and their understanding, though I did take every bot of information I could find on IBD and it's impact on children. I used to email his teachers to so they had some understanding of what my son was going through, especially if he needed the toilet during class time.

Do you have a care plan in place? If not you should get one. Have you checked out CICRA? They are excellent at information for IBD and with help accessing the help you require for schools.
Also UK Parents of Kids with IBD (Ulcerative Colitis and Crohns) on face book are again excellent for their help and advice, especially around schools

You need to be organised. Have a little notebook with you. You view it like a complex court case with say 8 strands. You email, chase, and chase again, every few days. The nurse, the consultant, the GP, the counsellor, PIP application, school yet again. No one has any sense of urgency. You have to drive it.

I have some understanding. Of driving things, with ds1. Dh had diverticulitis at aged 20. It's a 'shit' condition, underrated. Being treated in London can be tricky too, I've been at Kings for 20+ years, my diabetes is so brittle, I'm such a pain no one else wants me. Good luck.

Your son sounds like he is coping amazingly well given the circumstances. To have started and settled into a new school and made friends is such an achievement and a credit to you both.

Similarly to pp, I am not convinced that Early Help would benefit you, but neither do I think it would a hindrance or risk, so you may want to see them and find out as they may offer more than they do in my area (I work in a connected field).

My son also has a complex condition that affects his bladder and thus his toileting, requires regular intervention at a London hospital and results in lots of illness and associated poor school attendance. Our GP doesn’t get involved either due to the complexity of our son’s condition.

We are led by him, and accept that his attendance is likely to be poor. We have never been contacted by the EWO. We do received the generic letters about poor school attendance which used to enrage me, but they are produced as standard and I ignore them now. To be fair, the school are understanding when I speak to them but he attends a large comprehensive and therefore not all staff are aware of the issues.

He does have a toilet pass but some teachers do ignore it or still refuse access to the toilet - we always contact the pastoral lead about this.

If he is not well enough to be in school, so be it and like your son, he seems to manage academically well enough. Personally, we don’t force him to work when he is unwell or worry needlessly, he has enough to contend with. In fact, I didn’t achieve well academically at the usual time due to different health issues but I returned to education in my twenties and have a good career and I think this has helped me to be laid back about it all.

I don’t know if that helps at all. But I do think you are doing a brilliant job and it really doesn’t matter what the school think - you know that you are acting in your son’s best interests.

I would accept the Early Help referral, it could help you secure further support.

If DS can’t attend school full time the LA should be providing medical needs tuition as well the part time DS can manage in school or instead of school depending on what is most suitable.

The reason you struggled to arrange provision last year was because you were EHE. By EHE the LA would say you relieved them of their duties to provide such provision. Parents find it much easier to get support when on a school’s roll even if their DC can’t attend.

You should also apply for an EHCNA.