I'm may and I'm 16. I am currently studying for my GCSE's which I am finding extremely difficult due to my chronic/brittle/severe/uncontrolled asthma (Too many titles lol). My asthma makes me extremely tired, i also get alot of pain and feel uncomfortable being school on more than 2 hourly nebs.
I currently go to a main stream secondary school which has a disabled unit. I am allowed in as i am on full disabilty living allowance, but I am falling behind and school is a major struggle with the amount of work (I'm taking 10 and a half). Because i am ""able"" my school feel i should not drop any and just struggle along. My doctors and nurses feel i either need to go to a specialist school or be home tutored. I am currently getting a special educational statement.
I also have severe gastric reflux (I am sick most days), Immuno deficiency, Eczema, hayfever, Anaphalaxis to eggs and nuts, severe allergies to: wheat, soya, oats, spices, hairy animals, peppers plus others.
Here is a list of my meds:
Omeprazole 40mg bd
Ranitidine 150mg bd
Erythrimicin 250mg bd
Domperidone 20mg tds
S/c terbutaline 10mg
Prednisolone 20-60mg daily
Oxis 72mg bd (6 puffs)
Pulmicort 1600mg bd (8 puffs)
Atrovent nebs 500mg (prn)
Ventolin nebs (min 6 hourly-max 1 hourly)
cetirizine 10mg
Salbutamol inhaler prn
starting immuno s/c drug
My mum and I were wondering if anyone knew of schools good for my kind of asthma or where we could get any info.
May, there used to be one cos I remember seeing a doco on it when i was about your age. Have you tried calling AUK to see if they know of it. One other thing getting funding and a statement post 16 is a nightmare. LEA's have a duty to provide suitable education for you up till you are 16 but not after. My daughter has a statement nad has one since she was 11 (not for asthma) and she goes to s specailist school where she boards all paid for by the LEA, we choose that school becaause it had a 6th form but we are now fighting to get the funding needed to keep her there whilst she does her A'levels and she already has a statement. However it has to be possbile and I would have thought you have a good case, once you have done all the initial assesements it may well be worth you getting a a solicitor who specialises in this sort of thing, you can't get legal aid so it will cost however it does tend to focus LEA's and make them realise you are not going to take no for an answer. Good luck!
Bex
Yes Bex your right, there was one. However sadly it closed a few years years ago I am unsure why but I think it was to do with the fact that that people with disabilities are now being intergrated into normal schools.
P.s Great to hear from you May was wondering how you were doing
Wanda
May
Good to hear from you. Home tuition might be the easiest bet but you can do both. Majority of learning at home with just a few lessons in school so that you can see your friends. If you have home tution through the LEA you stay on the school role so you could say go in at lunchtime to meet up with friends.
What I would reccomend to help you through the process of statementing is contacting your nearest parent partnership. They have advisors who will help you through the process and can explain things and go to meeitngs with you. If you put parent patnership into google it will bring up their site. Statementing like Bex said is a mind field and I wish you all the best with it.
Also ask your medical team how others manage. I know one person off another site that has a different illness that attended hospital school even though she wasnt in hospital because it was better for her so people were on hand to help if need be but also understood how her health could affect her work.
Th other idea would be to look at online learning. There are a lot about. ""Sam learning"" is used with schools and if your school participate in the scheme they may allow you to aceess the rest of yor GCSE work at home. Nisai is another good one that I know a lot of children with ME have been using as it can be done at various times in the day to suit your health.
If you nbeed any more info dont hesitate to PM me.
Hi May, are you looking for a school within your county or can you apply elsewhere?
My friends daughter has just started at a specialist school for children with physical impairment. She has bronchiactasis and is treated in a similar way to children with cystic but hasn't got the gene. She also suffers from gastro reflux but has a gastrostomy as she also has an unsafe swallow and aspitates on fluids.
Her school is in Stevenage in Hertfordshire and has individual education plans according to each childs ability. Courtney currently only attends 3 days a week as she becomes too tired if she tries anymore. She has iv's when she is low and the nurses within the school give these to her. Apparently the older children have the option to stay over at weekends but Courtney is collected and droped home each day with 2 other children. The school seems to be working well for her as they cater for her needs and adjust learning to her level so she does not miss chunks when she is ill. she needed to have a statement to attend the school.
Not sure if this is the type of place you are looking for but thought it might give you an idea of whats out there.
Good luck with your studies, it's great to see you're getting on so well.
hi may
I went to a school for children with severe asthma, excema, and cf called pilgrims in seaford sussex. Unfortunatley it closed down as pupil numbers dwindled due to advances in asthma treatment. Great for the kids that the meds worked for, but not good for the true brittles left behind!!!
I was 14 when I left and no other school would take me due to my health problems. I eventually went to hospital school every morning and had a tutor three afternoons a week when i did my GCSE's. The LEA paid for a taxi to take and collect me from hosp school.
This system worked really well for me although it did mean that i wasnt able to make any long lasting friendships as the kids on the ward were always changing. However if you are already in mainstream school you should already have a good group of buddies that you can stay in contact with.
Hope things improve for you soon sweetie
Ribena
Hi may
I too have many health issues in regards to my brittle asthma. That effected my school, I have been home tutored as I have and still am too ill to attend full time school and have far to many trips to hospital. With funding from the LEA i have started to attend the local hospital school four mornings a week and back it up with home tutoring as this will be my GCSE year also. The hospital school is great you also get to go to the youth club and meet lots of people and the youth worker is great. I have reduced mine from 11 to 7, I will take more as and when I like most properly in the next academic year. I want to go on to university then medical school but I have the rest of my life to do that part for now its gcse then my health will determined how and when I take my exams but they don’t have to be done at a set age so don’t take too much on May we can only do what our health dictates always another time for exams if you feel unable to take that many do some later. When I was full time Home schooled, you only have to do three hours a day by law but there is seven days a week so I just worked on the days or even by the hour or half, I was well. I can only manage mornings at hospital schooling now which I did due to my home circumstances and my asthma. I also get a few hours from a tutor funded by the lea.
I hope you get some ideas of what you can do I do not know of specific schools but I hope this helped.
Spider x
Hey
I also went to a hospital school in my last year or so of school. I went there 3 mornings a week, Mon, Wed, Fri and to mainstream Tues & Thurs. My school employed a career to stay with me and get me to lessons. I was aloud to go home whenever I wanted (within reason obviously) and left lessons early to allow me to get to the next lesson on time and so there wasn't much bustle in the corridors. They got a stair lift installed for me when things got worse. I did most of my coursework on the ward with some of my coursework teachers that would drive to the ward in their frees to help me out or the hospital classroom teachers would sit with me and give me one to one tuition. I did most of my GCSEs in HDU, sure it was hardwork but its not impossible. I hope your school can help you like mine helped me.
tks xxxx
Thanx
Hey!
Thank you for my replies- they are really helpful. I'm going to tslk to some ppl and am contimplating taking a year out after sixth form.
Regards and hugs
may
Not quite what you asked for, but just interest here is an article from The Times giving further information about the home schooling system Nisai:
Not sure if this will be helpful but there are a couple of UK based home education Facebook groups - if you join them I’m sure you would get loads of advice there from the home schooling side of things x
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