Advice please where to get help re daughters school, possible fine for absence

Hello, my daughter is 12 and has so many symptoms and keeps getting ill that she misses a lot of high school. We don't have a diagnosis, the high school may impose the first fine , as we can't prove she is ill ! I send her to school whenever she is well enough but sometimes she just can't manage it . Our doctors are referring and we are possibly at the start of a long journey . I worry she will have lupus or fibro or another autoimmune . Has anyone been in this position ? Thanks so much for any advice . I feel like they will try to say she just trying to avoid school, when I know that is not the case. It is heartbreaking seeing her in daily pain.

[Mifford]

Can your doctor write a letter confirming that she is being referred? i don't have kids so no idea if it'll help but with that backing you up maybe then the school can sit down with you and come up with a plan so she doesn't miss too much but that will have the pressure lifted off her? Good luck x

[Hidden in reply to Mifford]

Thank you, I have paid to print out my daughters full medical records of which the school has a copy of this whole 2016 year, and the school have a copy of every hospital referral , appointment , and follow up letters ! This apparently is not enough ! Everyday she misses due to doc appointments I send a photo of prescription meds ! This is still not enough! They expect a gp to sign her off each time she off which a GP won't do ! IT is such a crazy situation . I refuse to needlessly take up GP appointments just to satisfy school when GP appointments so scarce, I only take her when she needs to go. It is very stressful. Appreciate reply very much .

[Lupiknits in reply to Hidden]

This sounds a very harsh policy. Even tough managers can't expect a GP sicknote for a day's illness, and you are right that it is a waste of GP time. Is it worth contacting a parent governor of the school or asking your GP to send a letter to explain they are expecting far too much from a hard pressed service? Might be best to approach the parent governor first. The school have more than enough information. Even your local councillor should be involved. If they do try to fine you, then you have plenty to appeal against. Sorry for the long answer, but this makes me cross x

[Hidden in reply to Lupiknits]

Ah Thankyou for reply, thank you for feeling my pain ! Makes me mad , they should be concentrating on real truants, parents who not care about their children missing school , I am wanting her to be in as much as she can ! Seems at moment she does a couple of solid weeks then it wiped out by an illness / or worsening symptoms, I don't know why they can't see that. Contacting parent governor is great idea , as is a local councillor . I think I also should make it clear now to school that I will be getting advice as not being forced out ! Thankyou again .

[littleeffie]

Had similar.

My kids have multiple probs.

E-mail the school ,so you have proof of contact,stating you have provided them with several copies of medical information to the on going health issues being dealt with by GP and at referral stage.

Politely request ,in e-mail,that if they wish to have further medical consideration then the school must write into GP every time there is an absence as they will provide really necessary knowledge free to Education but will charge you up to £25 per letter per day if you request and that would only be considered by yourself if the school agree to fully reimburse you for this.

Also do please see if there is a SENDIAS service or Parent partnership service in your area as they provide independent advice and back up.

[Hidden in reply to littleeffie]

Sorry to hear you have had similar issues, I hope yours resolved the way you hoped . It's sad situation. 30 hours a week is so much to handle when not at full health . It's so weird about the proof thing in that I needed to get them permission to speak to doctor - then when I said call my doctor about why she been off this week, and attendance lady said she not really supposed to chase up my doctor for me ??! Am I being thick ! Anyway, I have done everything by email , and will continue to do so , so I have my own record should it escalate . And yes that is such a good idea to say they can continue from now to seek info from doctor themselves. I haven't heard of the other two services you mention so they will be on my evenings' Google list ! Thankyou very much . I think that is exactly what need . And another lady suggest Parent Governor contact . And if goes to fine stage to write to a local councillor etc too. Thanks again for all help.

[Freckle1000]

littleeffie's advice is much sounder than mine. But when I read you post my first thoughts:

I'm from Australia - so am unfamiliar with the system there - but I would think it would be worth mentioning. - As you've provided proof of illness from Doctors ? if the school failed in their duty of care to you daughter while at school - or prolonged her illness due to their inflexibility - then they would be prone to legal action due to negligence ?

Might be worth hinting this too them ?

[Hidden in reply to Freckle1000]

Thankyou so much , I am just getting to grips with exactly what they seem to require, but it seems crazy to me ! At the ripe old age of 12 - she has 100plis pages of medical history, not exactly a healthy case !! And so yes as you say , me feeling forced to send her in , would potentially make her worse in the long run. I have made this point a couple of times now, that she seems to do a fulltime two week stretch ish , then get struck down with something. Schools are not best place for someone who's immune system may be compromised . Thanks again , appreciate you taking time to reply. Once we have a diagnosis and her symptoms treated or at least under control, I absolutely would want to try and do something at least to help others in this position. As must be other parents out there who feel forced to send them in ill. Or forced to homeschool them to avoid fines and Prison. ,!!!! World gone mad !!

[Freckle1000 in reply to Hidden]

Whoah. Fines and 'Prison' ?!? That's off the planet.

Pity they're not 'transporting' people here anymore.......

: )

No punitive regulations here. More on the ground volunteers dragging kids to school.

I had to miss about 9 months of school when I was a 15. Nobody blinked - the school was small - they were more than well aware I was very sick.

If you do sort this shamozzle out - 'if its at all possible' - just be sure you don't send your daughter back too soon..... I was back at school after a massive flare - but I was a bit discombobulated and couldn't quite take things in, still quite weak and dealing with lots of medications side effects. I really needed the full year off with some structured support to re-prepare me for school.

However I think the wisdom and insight your daughter will gain from this - horrible experience - is something that can't be taught and will make her far more mature and insightful than her peers. This will put her in good stead, despite the educational gap. For me, catching up on a bit of school work seemed like a small and happy luxury after what I'd been through.

GOOD LUCK with.....nanny state ?

xox

[Hidden in reply to Freckle1000]

Thankyou so much I love how you all are able to still go out of your way to advise others , and you still have humour in order to keep us going . I will keep refer to all these replies and it will certainly help us on our journey. Never mind all these reality show people...... We know what a REAL JOURNEY feels like !!!!!

[Mifford]

Looks like great advice from little Effie but in the meantime is it worth you making an appointment to go in and talk to the head? Then you could explain the nature of her illness and might help them understand and be helpful rather than judgemental. The notes and hospital letters don't really explain how she is being affected - even with my own they simply state what I have and it doesn't explain the depth of how it affects me. Things like "fatigue" on paper can never explain the effect on my daily living. If you are sat in front of them asking for help and explaining how she's affected maybe they can get on the same page and actually provide you and your daughter with some support to help you through this period and would provide a good foundation of understanding from them if the hospital appointment leads to a diagnosis. I don't know if it would help but worth a try? Much more personal than email and difficult for them to be so harsh maybe

[Hidden in reply to Mifford]

I appreciate advice, and yes I agree that needs to be my next step , daunting as it is as everything feels so emotional that I think I will be crying even in the waiting room, so it's all about holding it together and getting my point across . These things wouldn't normally phase me. But the whole year of worry has taken its toll on me , so i really need to keep a cool composed head to do the best my my daughter. If in doubt wear sunglasses and write some things down !!! And email after to add everything I couldn't say . Thanks so much for help .

[Hidden in reply to Hidden]

You have had some very good advice already but as a person who had many battles to go through over the years with my sons and their school -I would also point out that even mental health issues in young people need a degree of sensitivity and support that the school don't seem to be offering you or your daughter presently. Is there an advocacy person or a social worker based in the school who can help you fight your corner perhaps?

The other thing I thought might be helpful is that NRAS nras.org.uk/ have a JIA (juvenile idiopathic arthritis) section with helpline and advice on exactly this sort of thing. You don't need a diagnosis for them to be able to advise you on how to deal with this situation. They can also put you in touch with support groups made up of fellow parents and sufferers. If this turns out to be her diagnosis then you can join the charity and help others in similar situations once you come out the other saw as I'm sure you will. Ditto for Lupus UK.

For what it's worth I was sick a lot with autoimmunity (fatigue, anxiety, alopecia, eczema and whooping coughbplus GI problems) as a child but in those days things were much less punitive! X

[Hidden in reply to Hidden]

Thankyou so much for the link , will look at that, sounds exactly what we need . Sorry to hear you have faced these types of battles before. Until you are a part of this world yourself, you just wouldn't imagine what battles people face to get their illnesses diagnosed, their feelings taken seriously , and help given . If I didn't now know all this that I am just beginning to learn , you would assume the help and support is out there. But the stories are the same again and again and again. I can't stand to see my 12 year old daughter so upset , so Ill, being dragged from appointment to appointment , person to person, and each and everyone she comes out feeling exactly the same , no answers , no relief for her yet . It gives them a very negative view of doctors and schools and I just don't want her to have that . And I have to try to keep her positive that this is not how things are going to be for the rest of her life. Once we come thru this I definately would like to get involved in something that helps other children at this particular stage .

Regarding school have had the initial meeting with attendance officer and pastoral lady. I give them their dues that they have put in place a lot for my daughter which Is positive , an exit card, access to support room , offer to do any meds at school, and excused from all PE. And have said I must feedback any bullying issues or issues with teachers etc. I can't fault them on that . They have done a lot to help. My problem is now getting proof of every single day of illness to avoid fines / prison ! They can have a certain number of sessions missed within a certain number of weeks, but my daughter cannot meet those . And my GP won't sign her off . Maybe I have to cctv where we live so they can see her in bed / on couch poorly !!!!

Thankyou for all help and taking time to reply . Greatest site ever full of lots of very kind caring people .

[Hidden in reply to Hidden]

You are welcome. My sons didn't have same issues as your poor daughter but my eldest has statemented Aspergers and was continually up against it with certain teachers and subjects. I had to fight tooth and nail to make sure he had similar opportunities to his peers. So I do at least know how it feels to have an ongoing battle with education system.

My 14 year old nephew and several close friends have had quite similar health problems and poor schools admin treatment to yours -one with anorexia from 10 years old another another with ME from 12. My nephew has borderline Crohns/ UC. So you definitely aren't alone and nor is your daughter. I wish you much luck with getting charitable input, advice and support. Twitchy x

[Hidden in reply to Hidden]

Thank you, it sounds as if i am definitely not alone in feeling this frustration at having to fight for your child. And all the replies give me strength to keep going . When you don't know of anyone going through similar at some stage you start to question yourself. But now just have to turn the doubt into action. I hope your children are now doing well having had you battle for them, and wish your nephew well too , and anyone going through this. X

[Hidden in reply to Hidden]

My sister is going through hell with my nephew but it's more a challenging behaviour matter alongside bouts of being unwell. My sons are all doing brilliantly now and the oldest left school with very poor academic results but went on to get a first class honours in Economics followed by an MsC with distinction from St Andrews. He's flourishing in Sydney now with a very well paid job. I never would have believed this could happen when I was at your stage so please do take hope that what you put in now for her willl undoubtedly be rewarded in empowering her later in life. This has been the case fir both my sisters too who were born profoundly deaf and my late mum fought tooth and nail for them. Both very successful and happy individuals now! X

[Hidden in reply to Hidden]

Your story is so inspiring , and it is certainly going to spur me on . You have done your job and way beyond !

So many people get wrapped up in 100 per cent attendance and superb results , thinking that will be the only path to success. Fantastic for them if they can . But it doesn't have to be the only way , and you are so right that if I can help her build confidence to overcome pain and illnesses as they come then she will be stronger for it, and more determined .

The worst thing now would be to sit back and not try and let the pain beat us .

I will set up meetings this week and in the new year, and will keep going until people help us. Thankyou X

And good luck to your sister.

[Hidden in reply to Hidden]

Aww well it's lovely to be able to report good things althoughmy own autoimmune story has been a rollercoaster ride too -ongoing 🙄

My nephew is coming up on 27th for a week over NY -my sister is hoping that my husb and younger sons (21 and 19) will help him but in my experience all you can do is be there and love them despite some of the awful stuff they have to deal with and give out to their loved ones. It's really tough but it'll be okay in the end. I recommend you keep researching and focus on diet abs minerals and vitamin levels -making sure your daughterdoesn't have Coeliacs or Pernicous anaemia or thyroid problems. These are things that you can ask your GP to check or even get done privately.The medical progrssion don't always have the answers you and your daughterneed and they make mistakesand miss things sometimes. Wishing you much luck, hang in there and have a great festive season if possible.Xx

[Hidden in reply to Hidden]

I'm sure your sister is super grateful for your family helping , families are great . Even giving her respite is amazing. And the boys can have a great time hopefully . I am adding all your suggestions to my long new list , and will work way thru everything . At no stage have the docs said about test vitamin levels etc, but think thyroid and coeliac ticked off the list . They have the posters up about 'one ' subject per appointment which is just a nightmare but I just keep talking quickly !!! And make it clear I be back soon with the next items ! Always so many questions to ask ! Thanks again and happy holidays to you all too X X

[Lupiknits]

I think Mifford's advice is excellent. It may well be that admin in the school is acting on auto-pilot, just following procedure. Seeing the Head, or the Head of Year in person can work well. My younger son had no physical problems but was badly shaken when my ex suddenly decided he preferred a floozie. He started to refuse to go to school, I had the attendance officer on the doorstep, and I went to tell his Head of Year exactly what the problem was. It was very difficult for me to do this. In your case you will be able to explain and educate more about the physical nature of the problem. They can see your worry and concern in a face to face. Tears are no problem, they can actually emphasise your concern to do the best for your daughter.

Do email and keep records

In the case of my son, between his Head of Year and I, we wrked in unison. I know it's diffent, but when I rang her personally last to tell her that he had just graduated, she was the one in tears.

[Hidden]

Thankyou so much for reply, you were incredibly brave , firstly dealing with that situation at home, then having to disclose it to school face to face. Your son is very lucky . And credit to you that he has turned out successful and sometimes kids just need one good parent rather than two if one is falling short. It is so helpful to have all you kind people on here share your experiences and encourage me to go in and face the Head . I have always been brave and fairly pushy in all these sorts of things, but this last year of seeing my daughter suffer has come out of the blue and has drained me physically and mentally as I clearly don't cope well with something I can't control , I am used to being able to 'fix' everything . And this I can't just fix .

It has come as a complete shock that so many people have to not only battle illness and pain , but at the same time battle the health or school system to get the help they need. It is overwhelming , and there is something clearly going wrong.

Wishing everybody well, and thanks again for all taking time to offer suggestions . It is really appreciated.

[Hidden]

Thankyou for everyone's replies, all is so helpful . She has had a couple of new symptoms this week, unusual , does anyone recognise these in certain illnesses ? She said the outside of her earlobe felt like an electric shock feeling , it last couple days, she couldn't bear to touch it or brush hair near it, unable to lay on it. And then two days ago when cuddle her she say it felt odd to be cuddled all over her skin . She has never had that before. Any ideas ? My mum said sounds like nerve pain maybe ? Thanks for all suggestions , will ask GP too of course.

[Hidden in reply to Hidden]

Could be nerve pain but so many other things too. I have spells of similar issues and have something called small fibre neuropathy which I'm told is caused by Sjogrens disease. In most of the info given out on this it says that it mainly affects post menopausal women but I must say that I've had autoimmune signs and symptoms since before all my hair dropped at at nine years old. I'm highly allergic and am certain that my immune problems go right back to infant trauma (physical). Similarly I'm fairly sure my oldest son's Aspergers was caused in vitro by my very tortuous first pregnancy. I had benign horizontal vertigo throughout and eczema from top to toe -all hormonal. The most important thing for your daughter is to feel you believe her. Hopefully you will find out more soon. But if nothing conclusive shows up or if she improves without medical intervention then this is probably due to hormone fluctuations affecting her autoimmune system as it always has for me.

[Hidden in reply to Hidden]

Thankyou. If nothing else it all serves as a fantastic reason to avoid teenage pregnancy at all costs !!!! One plus point !! I will keep emphasise that to her over the next few years !

You have certainly had so much to deal with and to overcome , sounds really tough . I wonder how many sufferers now look back a long way to see the signs were there . Maybe in the future things will improve as in recognising these illnesses and early detection .

Wish you well.

Xx

[Hidden in reply to Hidden]

Thanks - yes it has all been rather "personality building" I must say. And I thought I was well over such building - with plenty of personality already lol!

My late mum used to tell me that everything relating to my health was due to anxiety and never even took me to a dermatologist for clarification. She saved all her fights for having over my deaf sisters, which I can understand now. Initially it made me an apologist over my own health but now it's made me quite terrier like and I try to charm the pants off doctors but failing that I become fierce. Quite a few teachers and doctors have learnt the hard way with me! Hopefully you won't have to fight your corner with doctors as hard as I have though. X

Ps ha ha my late mum chaired a teenage pregnancy commission - but never knew about my autoimmunity or she would surely have used it to good effect!

[Hidden in reply to Hidden]

Yeah we have enough personality, we don't need personality building !!!! I admire your strength, and I hope you sometimes stop in the all the craziness to congratulate yourself on what you have achieved and overcome . X

[Hidden in reply to Hidden]

Hey ditto! Xx

[Hidden]

Thankyou again so much to all for all replies and all being so kind caring and taking time to reply. I also wondered if anyone might possible recognise these symptoms - as they are new this week to my daughter - wondered if rang any bells with any particular illnesses . She complained of tingly painful outer ear lobe, couldn't bear to touch it or lay on it or even brush hair near it , lasted couple of days , and then stopped then back yesterday briefly . Then she wanted goodnight cuddles but it hurt her skin like it was tingly all over, so she wanted a cuddle but it was really unforfortable ? Never had those two things before . Thanks for any ideas ? And yes will be mentioned to GP too of course. My mum said maybe nerve pain ?? Thankyou . X x

[Buffy14]

I cannot believe how the school is treating you and your daughter the world has gone mad , you have enough to worry about with your daughters health without the school making things worse . I wouldn't worry about fines and prison , if it came to that I am sure a court would be on your side not the schools considering how ill she is , concentrate on your daughters health not this insensitive school , I hope you get a diagnosis soon and treatment for your daughter , take care x

[Hidden in reply to Buffy14]

Thankyou so much , another lovely person on here. And it all boosts me to continue following my gut instincts and not allowing anyone or any group of people , or establishment , to tell me I am not right in worrying about her . I think the schools and medical professions have some amazing people,within them , lots of them . but they are stretched to their limits, and some seem to want to make it so difficult so many seeking help fall by the way side , to lighten their load ! But I hope most find strength and support to continue and follow their instincts . Thankyou again X x

[Lupiknits]

I can't give any help on the symptoms Worrymum, but can assure you that your daughter has a wonderfully caring mum. Many here have related how hard it is to get support from family, but she is one young lady who is certainly not going without your support and care x

[Hidden in reply to Lupiknits]

Thankyou,that's so kind . It's lovely to blurt it all out , and get such lovely advice back to pick me up and help me . In order to help her. Lots of happy,good wishes to you and yours . X x

[Hidden]

Worrymum I just wanted to let you know that it works both ways on here. Because of your post about your daughter I relived some of the battles I had with the awful headteacher at my son's secondary school. She was very much in the Trunchball/ Deloris Umbridge mould (fiction gets it completely right sometimes!) and no one ever got the better of her for years. But I stood up to her once in front of her staff and the school inspector because I quickly had her measure and she had attempted to shaft my eldest son on flimsy ground. I knew that she was running rings round what had previously been a very good little school. But no one outside of the school could see quite how terrible and manipulative she was, not even our MP.

Finally the entire staff petitioned the council convener with a vote of no confidence, but not until years after several members had left with depression - one even tried to take his life having been locked in a cupboard by her! So it all came out in the wash finally - just as my youngest son was going into his final year - and she fled and was never seen again. A teacher told me that seeing me standing my ground with her years earlier had inspired them on mass to finally take action.

I've just stood my ground again a few hours ago - this time with a young doctor. He backed down and I felt the truly empowered patient afterwards. So I just wanted to thank you for inspiring me by your amazing mothering story to date. It's reminded me of the skills I've acquired along the way. You will too!

So all strength to you for battles ahead - I hope you knock 'em flying with their fines and bureaucratic nonsense! X

[Hidden in reply to Hidden]

Well done you, another battle fought and won ! We have had set back here, to say the least, school are report us to 'missing children' . It's so awful. Daughter been worse, not even wanted eat at school etc, and I should be able to just concentrate on medical side of things , not justifying self with school ! I don't know what they want . But I knew this would happen. Just secretly hoped they would use a bit of judgement and common sense and grant us time to get her diagnosed. Is everyone with poss fibro , lupus, anything that takes more than five minutes to diagnosed, is everyone forced out of school system. So mad. So tired . But really mad !!!!

[johare]

Hi I am an ex school nurse and will try to advise as such. The reason the school is doing this is because of the targets they have to meet however, this does not help you. These fines are meant to be in place for people who take their children out of school for holidays etc. If you provide evidence of medical reasons for absence is chronic fatigue due to possible auto immune illness they have to accept a doctors diagnosis and send work home for the duration of the absence. Please contact your local clinic and ask for your attached school nurses, they can advise you, support you both and liase with the school. They are sometimes based with the health visitors. Good luck.

[Hidden in reply to johare]

Thankyou so much . I honestly appreciate the school trying to catch people doing wrong by their kids .

My GPs even don't seem to be support us at moment , they are referring to consultants etc , but they won't sign off each individual day off , and school say that GP should sign off . So we are stuck .

Will try contact people as you advise , and the agencies everyone has mentioned . But have received letter today , four days before Xmas , from school , saying they are report us to 'missing children' !!

I have given every letter, every doctors appointment hospital appointment , have done everything by the book , and still we are in this position.

It is so hard to fight when exhausted from seeing daughter Ill , and not knowing why, we will be forced to exit school system at this rate . It's so wrong.

My sister has received a similar letter for her daughter , who has spinal stenosis at aged 11 . . . . And had recent spine surgery .

Why aren't they going after the real truants hanging out in macdonalds . . . . . X X

[Hidden in reply to Hidden]

This is crazy. I think it's time to find the nicest GP in your practice and explain what is happening. If you can just look them in the eyes and tell them exactly what this terribly misguided bureaucracy is having on you all -their patients - then perhaps common sense will prevail?

If you still get nowhere then could you go and see your MP? If you can join forces with your sister as this is a UK wide policy and is what happens when common sense is replaced by political meddling in education and health I feel- that would be good.

To put the other side for the truanting children - my friends' son is same age as my eldest and he truanted for over a year before the school even told his parents -and they received a fine/court hearing having never been written to previously. No one ever reported to the parents that their son wasn't attending school. He left school young (15) and started self harming. He has now completely disappeared and they have had no contact with him for four long years, although they did learn from police that he was at least alive a few years ago. Like yourself, these are loving caring parents. So not all kids who truant or hang around MacDonald's have uncaring, neglectful parents. Many schools are letting families down one way or another and I feel that this is because of politicians not schools.

So if I were you I'd start with your politician as they need to know exactly what impact their endless interference is having on the health and education systems and on basic "common sense". Twitchy

[Hidden in reply to Hidden]

That's an awful situation for your friends and their child . I am so sad read something like that as every child deserves a chance . And why are the authorities so bad at picking up on where the real risks are and follow up those properly . My l,an is to get through Christmas, try make it as good as can for her . Then in the remaining week off school it's time to contact as many people,as possibly to get help , and quickly . And try get her next consultants appointments,brought forward , as at the moment need someone to believe us . Thanks for all advice x

[Hidden in reply to Hidden]

I think having the best festive season possible is a great idea as it should refresh you all to renew your battle with the energy it requires. I hope something finally gives for you all in a good way. 🎄🎁x

[johare in reply to Hidden]

Please try to find your school nurses this is their job. You should also contact you local education authority, jump ahead of the school and complain about their treatment of you. Explain it is harrasment. Citizens advice would also legally advise you. These are empty threats, however, distressing.

[cpidoc]

How is your daughter now? I hope things are improved!