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PostPosted: Wed Oct 21, 2015 10:52 am 
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Our 6yo daughter has health issues which result in her missing time off school. Attendance last year was 70% and so far this term is running around 50%.
Last year the school health team became involved, and a care plan put in place, which included options on flexible arrangements, such as mornings off, or 4 day weeks when she was finding school tiring.
She often has mornings off for hospital appointments, and often has little sleep due to her condition, so she has missed a lot of crucial morning lessons, and is often tired for those she does attend.
All in all, we have noticed a decline in her enthusiasm for school, which is upsetting, as she is considered very able and had managed to stay on top last year, in spite of all this.
I discovered last week, that she was moved from the top table, to the middle table at the beginning of term. They felt it was easier for her to slot in there on that level, after returning from a period of absence.
We have never had work sent home, no updates on what she has been missing or suggestions on what we can do to help at home, and if she misses morning book change due to hospital appointments, simply doesn't get a book. In short, she is being left to her own devices...which is now sadly taking its toll.
Does anyone here have experience with chronically ill children at school? Is there anything they should be doing to support her further? I had a meeting and they say they are understaffed (which they are) and that the best they can do is offer her work to keep the basics ticking by..rather than more challenging work which she would be taught in class. How difficult can this be? Surely a parent could help with all this?
An SEN child would have extra support, but a bright child who is ill, receives no support at all? It just seems very wrong. Or does it not matter unless they are not reaching 'nationally expected' levels of learning?


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PostPosted: Wed Oct 21, 2015 11:55 am 
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Dear mm 23292,

I feel your anguish and I am fully compassionate with you and your DD.

I do hope that your DD’s health will improve.

I will write here my gut reactions to your post, but I am sure that more knowledgeable people will be able to address your concerns better than me:

Thankfully, my DS has never been chronically ill, but I used to be a ‘pestering’ parent as soon as he had to miss primary school due to some minor illness as I would go in person to get these handouts. For example, during his two weeks of absence due to chicken box (he had had it badly), I was standing in the playground at 3:20 every working day to have a chat with a teacher and get the handouts given to his table on the day. And - I thank God for that- his teacher was a wonderful person who understood totally my stance.

I had come to realise that -sadly- if I were not doing this, I would know nothing, absolutely nothing, of the lessons given on the day.

This is the problem with the state primary schools in England: teachers tell you ’do not worry, your child is fine’ or ‘will be fine’. I have learnt not to believe one bit of this phrase and to rely on my own efforts.

And anyway, to attain a really good level at school in primary nowadays, parents cannot rely only on the curriculum taught in state schools and the teachers who - poor souls - have to take care of 30 pupils and do all the administrative work on top of that. Why would parents DIY or pay some tutors for the 11+ if topics having to be covered for the 11+ were taught in state schools?

You only, as the parent, can really help your DD and push her up…. she will be back at the top table if you do so…
Maybe also, you could consider joining some home schooling support group in your city to get more clues how you could support your child’s learning better?
Maybe someone could send you the current curriculum for primary schools?

Please, do not feel disheartened as if you were facing an impossible summit to climb. I remember a boy whose mum was on this forum a few years back. Her son had to undergo chemotherapy in year 5 and 6… Despite this major hurdle, he has been successful in obtaining a GS place. A real young hero!! :D :D


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PostPosted: Wed Oct 21, 2015 12:08 pm 
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Location: Reading
A friend of mine works for a LA teaching children who for what ever reason are not in school. This is a resource provided to local schools, though academies may have to pay extra for it.

She has told me in The past that this provison should be offered to any child who is not able to attend school. It may be worth asking why it has not been offered to you as I believe they are obliged to provide it.


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PostPosted: Wed Oct 21, 2015 1:12 pm 
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Hi,

We are going through something very similar with our daughter. She is in Y3 and has just turned 8. She's also very able (in fact has been identified as Gifted & Talented). She has been unwell since Easter and had a similar amount of time away from school, although at the moment she's only able to manage around 1 hour a day. To be honest it sounds like you've had more support than us. We've had no care plan put in place. Nothing. We're managing it all ourselves. Communications between us and the school have become frosty to say the least in the last week or so. Yesterday I spent all day, literally, on the phone to every body, department and agency I could find. I was passed from pillar to post. I spoke to The Department of Education, the Local Authority (various departments), the body that supports Governing Bodies, etc. Finally I was put in touch with SEND IASS, formerly Parent Partnership. They work primarily with SEN children. In fact our local branch told me they couldn't help, however the central office who I spoke to said that ill health can be counted as Special Educational Needs, in the sense that at present our child cannot be educated in the usual way so has a special need. You can be both able and SEN. So this morning I spoke to our local area office again who are going to refer us. In the mean time they've provided us with information on our local school nursing service (we've not even had contact with the school nurse in 6 months) and the Government Guidelines for local authorities responsibilitites for sick children. Last night I went though this document and they are failing on just about every count. Quite frankly we're at our wits end over this. There is very little consideration given to our daughter's well-being and none at all for us as parents (for instance me having to be at home for the past 6 months has had a huge toll on us financially). Until this happened I thought we had an amazing school. I feel very differently now. Both my best friend and sister-in-law are primary Head teachers/Deputies but in more challenging schools and have described this as 'middle-class' syndrome i.e. they're not used to dealing with difficulties in school and haven't got a clue what to do when faced with them. Right now we'd love to get the plan in place for flexible arrangements as our school are being very rigid. They won't send any work home. They talk about what they want all the time rather than what she needs. Our daughter also loved school before. I mean you couldn't keep her away. She did all sorts of extra activities, breakfast and after school clubs and loved it. Now she dreads going and thinks her teacher and the Head (who is new which doesn't help) hate her. I don't know what health problem your daughter has but our daughter's friend in her class has recently been diagnosed with Leukemia and has already received substantially more support than our daughter has. Her parents are doctors. It was finding this out that really prompted us over the past couple of days to try and find out what we/she is entitled to and start pushing for it. We're so concerned I've been looking at home-schooling which is really not viable (I'm supposed to be running a business not teaching!) and we'd be very concerned about our daughter's social and emotional well-being if she's not at school. Like you I'm astounded that there is so little support out there for able but sick children. ....Okay so while I was writing I've had a call from the Schools Attendance Officer for our area who is going to speak to the Head later today and try and get something sorted. She says the guidance for ill children is actually now, as of September 2014 statutory and not guidance anymore but that schools may not be aware of it. So in summary it sounds like you need to ask about the Statutory Guidlines for School for Children with Medical Conditions and see if they are complying. Then perhaps try and speak to your local Schools Attendance Officer and SEND IASS which has replaced Parent Partnership. Hope some of this is helpful. I'm sorry to hear that someone else is going through this. You hope you're an isolated case and it's so sad to hear other people are going through the same thing.


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PostPosted: Wed Oct 21, 2015 7:52 pm 
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So sorry to hear your schools are like this and mm2392 I remember your posts last year and hope you are having more luck with the medical profession than last year.

I think you both are being treated shabbily and I wonder if it is worth the hassle of trying to fight the system.

One of mine was hospitalised a few times last year and then had a few consultant visits etc and a few off days here an there as things retuned to normal. School was rubbish and I could see they would have added to the stress if this had become a longer term or more significant blot on her attendance. I emailed the EWO and told her what I thought of the school when they were hassling me and I also tracked down the school nurse and told them too.

I never had any luck getting any work out of them but the books in wh smith were more relevant anyhow.

If I were you mm3292 I would concentrate on getting your little girl back into the top groups so she feels happier with herself again. Don't send her into school on any day when she can't make a whole day, in your pinion, not theirs. Unless you have work in which case use it as free babysitting when you have to but make it clear to your daughter she is in the wrong groups at the moment and it is not her fault and you have a good plan to get her back into them.
And in the good hours she has at home get as far through the national curriculum iin maths, reading, punctuation spelling no and grammar as you can. Tell school in your notification of absence that you are doing this and you are happy with the 2 hours or so when she might have been fit to go to school to be marked as unauthorised if they choose to do this but that you are keeping a record of all the work she is doing at home during these good periods and you will use these as evidence in court that she is getting a good education and attending school as regularly as is practicable should they ever decide to refer you to the education welfare officer for fining and / or prosecution.

At the same time point out repeatedly that school has made no effort to help your child catch up on missed lessons so you are doing it yourself. Put all your efforts into helping your child forward in the hours when she is at her best and less on the silly obstacles they are providing. Keep any evidence which shows they are letting your dd drift down the groups. E.g. Write in and ask for the material she needs to cover to close the gap between the middle and the top groups and when you get no answer heave a sigh of relief as it gives you good stuff if they ever try to prosecute and also more time to just get in with it at home your own way. NC years 1 and 2 is not rocket science whatever those teacher might make you feel. They could send you week by week learning objectives if they were feeling helpful but clearly they are not.


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PostPosted: Thu Oct 22, 2015 10:09 am 
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[quote="je55icat"]Hi,
Both my best friend and sister-in-law are primary Head teachers/Deputies but in more challenging schools and have described this as 'middle-class' syndrome i.e. they're not used to dealing with difficulties in school and haven't got a clue what to do when faced with them.

This is a very good point. We had ds the local primary school but pulled him as he wasn't thriving educationally or behaviourally and put him into private primary school. His behaviour deteriorated and I was getting calls about him not focussing in class and being disruptive, cheeky to the teachers and running full pelt around the playground and accidentally knocking kids over. He always seemed to be in the wrong place at the wrong time. We were at our wits end. We then after many hours of letter writing and meetings found out he had ADHD. It all made sense. However, the school were so unco-operative and I always got the impression that they were stuck in the dark ages and didn't believe it is a real condition, just boys being boys. I don't think all the medical and scientific evidence and brain scans proving their brains have a different make up would have made any difference. He was a pain in the neck and although they really liked him as a person, it always felt as if they would rather he moved on. Fast forward to him now being in Year 7 at a grammar and the difference is incredible. Finally they get him and have been so supportive.

So I would say that unless they can prove they are geared-up for "special" kids, the child may actually be better off in a state school. I would also say that as has been identified, you may have to fight like **** to get what you want/your child deserves. Don't be fobbed off. Make yourself a pain if necessary - hopefully they will get so fed up with you they will start to be receptive. It may also be an idea to go straight to or to threaten to go to the Education Department rather than keeping things in-house. I'm sure any school would do anything to avoid this happening as it may provoke questions being asked by those with more authority, and they may then start to play ball. It's your child and their future and they are paid to make your child's education as successful as possible.

I wish the very best for the commenters on here and their dc's; it must be so worrying for you. It's not as if you don't have enough on your plate already.


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PostPosted: Thu Oct 22, 2015 2:50 pm 
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Joined: Fri Aug 30, 2013 7:30 am
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mystery wrote:
So sorry to hear your schools are like this and mm2392 I remember your posts last year and hope you are having more luck with the medical profession than last year.

I think you both are being treated shabbily and I wonder if it is worth the hassle of trying to fight the system.

One of mine was hospitalised a few times last year and then had a few consultant visits etc and a few off days here an there as things retuned to normal. School was rubbish and I could see they would have added to the stress if this had become a longer term or more significant blot on her attendance. I emailed the EWO and told her what I thought of the school when they were hassling me and I also tracked down the school nurse and told them too.

I never had any luck getting any work out of them but the books in wh smith were more relevant anyhow.

If I were you mm3292 I would concentrate on getting your little girl back into the top groups so she feels happier with herself again. Don't send her into school on any day when she can't make a whole day, in your pinion, not theirs. Unless you have work in which case use it as free babysitting when you have to but make it clear to your daughter she is in the wrong groups at the moment and it is not her fault and you have a good plan to get her back into them.
And in the good hours she has at home get as far through the national curriculum iin maths, reading, punctuation spelling no and grammar as you can. Tell school in your notification of absence that you are doing this and you are happy with the 2 hours or so when she might have been fit to go to school to be marked as unauthorised if they choose to do this but that you are keeping a record of all the work she is doing at home during these good periods and you will use these as evidence in court that she is getting a good education and attending school as regularly as is practicable should they ever decide to refer you to the education welfare officer for fining and / or prosecution.

At the same time point out repeatedly that school has made no effort to help your child catch up on missed lessons so you are doing it yourself. Put all your efforts into helping your child forward in the hours when she is at her best and less on the silly obstacles they are providing. Keep any evidence which shows they are letting your dd drift down the groups. E.g. Write in and ask for the material she needs to cover to close the gap between the middle and the top groups and when you get no answer heave a sigh of relief as it gives you good stuff if they ever try to prosecute and also more time to just get in with it at home your own way. NC years 1 and 2 is not rocket science whatever those teacher might make you feel. They could send you week by week learning objectives if they were feeling helpful but clearly they are not.


Top top top advice, iin my opinion. If you are able to be at home its a win win as far as your daughter's confidence and catch up are concerned. Top advice. So much out there to support home ed. Look up Home Education/home schooling groups in X (where x is your region) - they are hugely supportive of 'education otherwise', even if its a bit of both.

All the very best, with both her health and her education.


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PostPosted: Thu Oct 22, 2015 3:16 pm 
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Weird thing is, you've got schools like this sending KS1 children down the groups to demoralise them and then you've got other schools like ours who reckon the national curriculum means one size fits all and won't teach beyond what is set out in a non-statutory programme for that year group.


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PostPosted: Fri Oct 23, 2015 9:39 am 
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Thank you all for your kind replies, it is sad but not surprising that we are few of many.
Hi Mystery, nice to see your name again! Yes we have somewhat moved on from the medical inertia of last year, having been referred to tertiary care, the immunologist there also referred her to individual specialities within the hospital, so she is finally getting the attention she has so long deserved.
We are hopeful things will get better, but of course these things can be unpredictable, so only time will tell.
I am sorry to hear of your battles JT, I agree it is totally frustrating. I too have seen the statutory guidance for education sick children, and while it covers why, what and when an LA should be acting, it makes no mention on whose responsibility it is, to identify those children.
This is an extract…
14. The law does not specify the point during a child’s illness when it becomes the LA’s responsibility to secure for the child suitable full-time education. Schools would usually provide support to children who are absent from school because of illness for a shorter period, for example when experiencing chicken pox or influenza. In some cases, where a child is hospitalised, the hospital may provide education for the child within the hospital and the LA would not need to arrange any additional education, provided it is satisfied that the child is receiving suitable education. More generally, LAs should be ready to take responsibility for any child whose illness will prevent them from attending school for 15 or more school days, either in one absence or over the course of a school year, and where suitable education is not otherwise being arranged.

Our daughter has far exceeded 15 days in every year since she started school, yet not once has this been flagged. The school nurse was involved last year, more as an assurance for us to prove the reasons for our daughter’s absence, and the delays we were experiencing in getting her referred. Unfortunately having 3 life threatening episodes of illness in one year, did not even get the wheels of upward referral moving in motion…it was quite shocking really. And the educational welfare is managed no better. Schools are more concerned with absence data and Ofsted impact, than they are with children actually reaching their natural potential. It is somewhat irrelevant in the whole scheme of things, and I have actually had this said as such, by our own HT.
My daughter returned to school having had one maths lesson in 3 weeks, no work sent home and no advice on what she should do to ‘catch up’, and they sat a progress test on her first morning back. I expressed concerns to the teacher at her sitting a test with no prior input whatsoever. Oh but she did amazingly well! So everything is fine..I have nothing to worry about. Hmmm...something just does not stack up here..and her teachers seem so entrenched in their ‘doing fine’ mantra, that I doubt I will ever hear much beyond.
My elder daughter had 3 weeks off for an operation a few years back, and her independent school were amazing. Rang me to discuss, sent work home for her to do when she came out of hospital, and she had catch up meetings with all her teachers when she returned. I am definitely losing faith in the state approach, but that’s another tangent..
I couldn’t agree more, our parental input is key, and I have no doubt that her progress this far has been largely down to her time at home, than her time at school. But of course, we want her to be in school, and that is what she wants too. It is just sad that she is losing her enthusiasm for learning while she is there, because providing her with a little bit of challenge, is a step too far.


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PostPosted: Fri Oct 23, 2015 10:06 am 
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Stressed?Moi? wrote:
je55icat wrote:

So I would say that unless they can prove they are geared-up for "special" kids, the child may actually be better off in a state school


That's interesting SM...we are currently pondering our next move, so it's good to hear the negatives too.
My nephew had similar issues to your boy, but positively thrived at prep, because as you say, they understood him completely. From our perspective, we do not want our daughter's health issues to hold her back. She may be ill frequently, but she is also a feisty little spirit, and bounces back with enthusiasm to learn. We do have a couple of good prep offers for next year, and we also have a few 'good' state options nearby. But our experience so far is making is feel that the prep route might enable her to be challenged more 'flexibly'... they would be less concerned with authoritarian data and more concerned with their pupils achieving their potential. But like you say, it does very much depend on the school.
Thanks for sharing, I hope your boy continues to thrive at GS


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