Reduced school timetable due to medical conditions

[Buntingsmum]

I posted in SN children yesterday and didn't get many responses, so trying here. My DD has a rare disease and isn't well enough to attend school full time due to fatigue and headaches and just generally feeling 'meh'. She's been like this for 2 years and I don't see it changing. We are getting pressure to make her increase her hours above the 5 mornings per week she currently does. We've just had a draft EHCP through the post today, and despite me trying to explain that full time school won't work, the sensory/physical leaning outcome in part F is there as 'to attend school regularly and eventually full time'.

If she was an adult she'd have to get signed off work due to ill health! In my mind it should be possible to accept that an ill child can't do school full time too and we shouldn't be getting pressure about this, but I don't know how to get this agreed. All her medical letters say that she is missing loads of school but I've not got anyone to write a report to say that she should keep the reduced timetable that she is currently doing. I can try to ask for that.

I need to work how to get this learning outcome off the EHCP! I read the government guidance about 'supporting pupils at school with medical conditions', but even that is all about how school should be full time. I get the fact that they are trying to protect all children's rights to a full time education, but what about when it is not right for the child to do full time?! would love to hear from others about their experiences with part time school due to ill health (and even this aspect in an EHCP if possible).

Sorry so long . Thanks for reading.

[Olivo]

I am not in the Uk, but for us, in a case like this, we would simply require a letter from the consultant to let us know what was best for the child, plus a period of time or a time to review the arrangement. I would then organise this, and work with the SeNco to look at in school support fans how we could help them catch up on missed schooling within the part time day.

[PotteringAlong]

isn't well enough to attend school full time due to fatigue and headaches and just generally feeling 'meh'.

You see, I don't think she would be signed off due to ill health as an adult for feeling, in your own words "meh".

If you want it off you are going to need more concrete reasons for her not attending full time than that.

[NickNacks]

How old is she?

[BoneyBackJefferson]

The school is in a bit of a hard place as they have to be seen to be trying to get your DD in to school full time.

I am not sure that there is much that you can do other than keep records of doctors/specialist/consultant appointments, why she is having days off, and going to meetings and using the information that you have to try and keep her schools hours reduced.

Try and get the SENCO on side and if they have someone that works in a pastoral capacity, try to get them on side as well so that they can back your information up.

[Buntingsmum]

potering perhaps you are right (which does make me fear for the future). I did deliberately use light-hearted wording and obviously I'm not going to disclose her health issue because her disease is rare and it could identify her. When I say fatigue, I mean the debilitating sort, not just 'a bit tired', headaches are daily and scored 9/10 or 10/10 on pain score, 'meh' is really, proper not feeling well. Currently the mornings that she does at school are pretty much her life. She can't manage anything else (it is very sad for me to see). I guess you could compare to ME, CF, Fibro, those sorts of diseases for their invisible-to-outsiders but truly debilitating effects.

Nicknacks she is 8

BoneyB yes having read the guidance last night I realise that this puts school in a very hard place. Everything is about full time school. in her case though reduced timetable is what she needs for her health - just as some adults are unable to work. I think SENCO is on her side, but seems to be bound by these regulations from the gov.

[SquidgeyMidgey]

Is she being tutored by the Ill Health team? That might be an option to pursue.

[Buntingsmum]

She was until she could attend full mornings. Medical needs team service cuts out when child can do 50% school (around here at least).

[AnchorDownDeepBreath]

I wondered if it was ME or Fibromyalgia. Unfortunately, children with those conditions have to go to school - there appears to be no contingency for remaining part time. I suppose if she continues just doing mornings, she's going to be well behind and not be able to sit her exams. So she'd either leave school with no qualifications at all, or be twice the age of everyone else in her class, eventually. She'd probably miss out on the chance to go to college/uni at the same age as her peers, too - which might seem totally unrealistic at the moment but she might be able to cope with a uni schedule, with some help.

I expect you'd need to have a long term plan and suggest that, along with medical proof that this is what's best with her? I think I'd also consider what changes could help, incase she does try full time. Would an hour off on her own in the afternoon help, if the school could find somewhere safe and quiet? Strong painkillers given by reception? It might be that nothing will help, but it shows willing if you show you've tried.

Would home schooling be an option?

[capsium]

Is there a clear record of her fatigue and headaches? Any recommendations of how much rest she requires?

If she were to stay at school they would have to provide a suitable place where she could rest (a bed), dispense pain medication and monitor her condition.

[Buntingsmum]

I'm disappointed to hear that anchor. But surely there must be children with eg ME, Fibro who really can't manage full time? Homeschooling would be a last resort option. School is good for her. We'd be really isolated otherwise and she'd have very little interaction with other children, which she needs. Thing is irony want to show willing and try because I know it's not right for her.

capsium every consultant she sees is aware of the health problems and missing school and writes this in their report. The fatigue has been reported as debilitating by a neuropsychologist. We're going to try a new medicine in the hope that it helps her headaches, but currently no painkillers relieve the headaches. There's no medical recommendations because she is a medical one-off (and the consultants seem to trust parents more than school). School have a quiet place by my DD does not have the confidence to ask to use it.

[Buntingsmum]

Irony = I really don't want to (doh!)

[capsium]

Could you get the consultant to officially agree, in writing, with your own recommendations? It might just add a bit more weight to your argument as to how to proceed.

Regarding your DD not using the quiet space can you diarise each time she reports to you she felt bad but did not want to use it? Could you ask the staff at school to encourage her to use her quiet space, when she shows deterioration in how well she feels? A record of the warning signs to look for with regards to a deterioration in her wellbeing would also be useful for staff to refer to.

[Leeloo2]

Would the school be willing to flexi school her? So she'd attend in the mornings, then you could home school (if/when she's well enough) in the afternoons?

[lougle]

When DD2 was home educated because she couldn't cope with school (anxiety, etc), I contacted a school and they offered to flexi school where she would come in for set sessions such as PE but wouldn't be there as a pupil because that would push up their absence rates.

Could she attend hospital school? Would the less stimulating environment be less exhausting? Could she use a wheelchair to reduce the physical exertion so she has more reserves for class activity?

[Questionsmorequestions]

How about school in morning and then going home to be "educated off site" for as much of the time as she can manage? You could also perhaps look at the timetable for lessons which would not be too much of a challenge and that she'd enjoy. I found that when we had children doing part time they missed lots of the fun stuff and friendship element of school. Could she go home for lunch and then back for an hour on some days.
Perhaps this will then satisfy the plan as there is no way any child could go from 50% to 100% but perhaps a slight increase will be a progression?

[insan1tyscartching]

Dd currently misses 1 morning and 1 afternoon each week due to anxiety. The school are quite happy with that as the alternative was going to be that she point blank refused to attend at all. We have a contingency plan of a further morning off if necessary and other options if she needs more time than that.
For now there are no efforts going to be made to have her attend more than she does and long term it is likely that even in y10 and y11 she will only attend part time (she is y8 now)
It sounds to me like it is the school pushing for full time attendance and the LA getting the flack. Dd's absences during the agreed absences aren't recorded as her being absent though so she isn't a drain on attendance figures and to be fair she hasn't missed a session since her timetable was reduced.

[AugustaFinkNottle]

Do the consultants specifically say that she cannot go to school full time because of her medical condition? If so, it's authorised absence and is part of her SEN, and the LA is not entitled to contradict them. Assuming the LA already has copies of the reports, write to them quoting the specific bits that support you and say that they cannot put in a target that is contrary to medical advice and which would actually endanger DD's health. Tell them also that the EHCP needs to include her need for home tuition in the afternoons.

If in doubt, contact SOS SEN for advice.

[Buntingsmum]

Thanks for all this . So I think that my first step is to ask for a meeting with the head teacher to talk through flex school and what they actually think outside of this EHCP 'stuff'. I'd be over the moon if they agreed to something like that. I'll try and get a consultant letter to support us, but I won't manage that in the 12 days I've got to respond to the draft EHCP. It is reassuring to hear that lougle and insan have managed to get something not full time agreed.

[Runningtokeepstill]

It's very difficult. I've been through this with my ds who hasn't been in regular full time education since the end of year 5. He also has a recognised, diagnosed condition which has predisposed him to chronic pain syndrome and pain amplification. On top of that he gets nausea, dizziness and balance problems and when very stressed his legs just pack in and he can't walk. But, as you say, he looks normal and on good days appears normal apart from a few gait issues.

We never got anything properly sorted with his first secondary school as they couldn't get their heads round why he couldn't get in every day (despite extensive medical reports). We ended up home educating for a while but it doesn't suit everyone and he found it isolating. Then we found a much better secondary school that made lots of accommodations and let him have a reduced timetable and reduced GCSE load. He even took his exams at home. This was all within the same LA - first school became an academy, second stayed under LA control.

But fast forward a year to college and everything is breaking down again. We're just going for an EHCP now as it looks like ds will end up with no help at all if we don't. It seems to me that schools and colleges really struggle with dc that have less common health problems and many go into a default position of denying that they have unmet needs. Sorry, I know this isn't very helpful but there doesn't seem to be a set path for this situation and we're all just muddling through. Getting advice from Ipsea or SOSSEN as others have suggested sound like a good plan.

[AugustaFinkNottle]

OP, could you maybe at least get a GP's letter at reasonably short notice?

[Buntingsmum]

Thanks running, it was actually helpful . Interesting that individual school can be so different, so gives me hope that there are good heads/ SENCOs out there for this grey area situation. I hope that you can get his college sorted out without too much stress.
Yip, the charities are on my list.

[dratsea]

the sensory/physical leaning outcome in part F is there as 'to attend school regularly and eventually full time'

Your DD is attending school regularly. Every morning. Job done. Sign and return. I have no experience of the EHCP but suspect this is minor bureaucracy as the new system is introduced. I do have some experience of part-time school, though not for medical reasons.

We went sailing so home educated. In the run up to departing I asked the school if I could home educate one day a week for his last term. His teacher was helpful, the head thought it a good idea but would have to clear it with LA. They said NO. The head was really helpful and gave me the name and phone of person who made the decision. When I phoned her she said that the head had warned her that I would call and I was referred to the director or some such title. I spoke to him who said that it was not possible to home educate one day a week. I asked why not and was told that it just was not. Reluctantly I was given name and number of national head of policy (only after I said I would be going to my MP). Very sensible head of policy thought it seemed like a good idea but was unsure why it was not possible and would look into it. She phoned back shortly after having followed the chain all the way back to the head. She was almost laughing as she explained that the reason was that because no one had previously asked there was not a box that could be ticked on the myriad of forms. She sent me the original of the forms, in Word format, told me to modify them in a way that it would have a box and explain to the school that I had got the forms direct from head office. I delivered my form to the head the next day, with the form she needed to complete to send to LA and the form they needed to fill in to send up to the office at county level.

Sorry, all a bit long but basically work with the head to get what is best for DD. Good luck!

[Klaptout]

The Health issues your daughter has, is there a support group or society linked to it?
Just wondering if they can offer advice, information or point you to someone who can help with this.
Does your Dd have a nurse or outreach support from hospital ?
or a social worker from the disability team? They might be able to help.
I've heard good things about Parent partnership and IPSEA, I don't know if either of those are still around as my three are now young adults so I'm not up to date with school stuff.
I know that statements of special educational needs have been changed to ECHP? Shouldn't your DDs health needs come under the H bit?

[cestlavielife]

I don't see any harm on an outcome of eventually full time. It s a desired outcome not a given.
I don't know what her condition is but unless it s medically degenerative and she will have to keep reducing then your and her goal should be eventually full time ...even if that isn't achieved.

The main thing is short term outcome which should reflect what she can manage now. Puberty may change things for better or worse. .. long term outcome is an ideal.

My dd was out of school over two years she went from zero school too sick nausea dizzy headache thru small group few hours a week to day hospital school. Gradually building up hours ..she now hits 89 % attendance.

Unless her condition has clear trajectory i(and if its rare you cant know for sure?) then accept an eventual aim of full time but make it clear the current short and medium goal is maintaining the five mornings.

[JellyBabiesSaveLives]

On the side-issue of your dd not having the confidence to ask to use the quiet zone - would she use a laminated card with the request printed on it? That she just has to show to the teacher? And make sure the teacher is printed to agree swiftly to the request (and not jolly her along or tell her to finish her work etc).