Help, missing school, GCSE options, falling behind - advice needed.

[Demolicious]

I have a friend whose daughter was diagnosed last year with a very rare condition. It took nearly a year to diagnose and during this time, she was very poorly, in and out of hospital. She is now on medication but it seems a bit of trial and error as she has good days and bad days, some days she can barely get out of bed and other days she is fine. Her grades have dropped slightly but she is doing her best to keep up. She is not getting any extra help and in fact, in a recent assessment was marked down completely because she didn't complete the test - she was away at hospital having tests !
I thought schools had a 'duty' to provide an education but we are not sure how to go about getting them to fulfill.

Does anyone have any experience of this - advice needed ?
Thanks.

Where do you live? Around here (birmingham) there is an organisation that goes into hospitals and peoples homes to teach kids too ill to go to school. Its called James Brindley School. Dont know about anywhere else!

Thanks for that, I have had a look at their website and will contact them to see if there is anything available in Slough/Bucks area.
If there are any SENCOs out there who might know what sort of help school should provide, please let me know. Thanks.

I'm a SENCo, we do lots of different things to support unwell pupils. If she is in hospital for long periods (weeks on end) then the school should be liaising with the hospital education.
Sometimes we refer pupils to home tuition through the pupil referral units. Essentially this is the same referral we'd make if a pupil was excluded or pregnant etc and couldn't come into school. It sounds good but if I'm honest home tuition is rarely more than 3hours a week!!
It sounds however that there are times when the pupil can make it to school and others when they are I'll at home. This is quite common and I've worked with pupils with ibs, me, diabetes etc where they have good days and bad days and home tuition is not enough. I have a flexible learning programme at school where a member of staff drops off and collects work to pupils twice a week. The work comes from the pupils teachers and so fits right in when they can come to school. The teaching assistant delivering the work talks it through and pupils are encouraged to email staff with questions. The key to this is the work is taken back to school, marked by teachers and returned with feedback.
Talk to the school - providing a laptop and work should not be difficult and of course they should be keen to do it because if they can prove the pupil is getting work marked and feedback they can "B code" them and it won't count negatively against attendance.
Hope that helps!