I'm finding it impossible to cope with my daughter's school.

[purple-lou]

I have lupus.

My daughter hasn't and I hope it's OK to ask this.

She is very poorly. She struggles to walk because of severe pain. She is exhausted. So many of her joints hurt.

She has been off school for 4 weeks.

I ring every morning if she can't go in. If she does go in for a morning, she is in bed for at least two days.

I have hired a wheelchair so she can try to go in.

School are very negative with me.

They tell her that she is fine and there is no reason not to be in school. This obviously upsets her. She doesn't know why they don't believe her.

The school liaison officer and the school nurse visited us at home this week.

It was a very negative meeting. They seem to have preconceived ideas and won't deviate from this.

I was told that it's probable that I will be prosecuted. I find that unbelievable. She is ill. Just because she doesn't have a diagnosis I feel we are being judged.

I don't know what to do. It's hard enough to look after a sick child whilst I'm ill myself.

I have paid to have a letter from our gp so that's evidence that she is poorly.

Does anyone have any experience like this? Can anyone give me any advice?

Thanks so much for reading this.

Louise xx

[Carolha]

As your GP referred her to a specialist, if so I would get him/her to support you case. The higher authority has more bearing! Hope everything goes ok, try not to worry too much as it won't not just do your health harm but could upset your daughter too. Xx

[purple-lou in reply to Carolha]

Thank you.

She is seeing a rheumatologist on 18th this month.

She has seen lots of doctors and they don't know what is wrong with her.

Thanks again, Louise xx

[Carolha in reply to purple-lou]

Good luck x

[Paul_Howard Partner LUPUS UK]

I will send you a private message with the contact details for one of our trustees who often helps people in situations like yours.

[purple-lou in reply to Paul_Howard]

Thank you.

[MaryF]

Hi, the reason I wrote to you, is that I have been through exactly the same, I had hell with school and education and was painted as a mother who made up illness, my children, one has systemic lupus and hughes syndrome, the other just hughes currently but with a suspicion of Lupus. As said in my private email to you, if you get nowhere with the new appointment, we can go on to stage 2, with the organization I sometimes do stuff with and who helped me, and I can see above that the Paul also has an avenue for you. Mary F x

[purple-lou in reply to MaryF]

Thank you. I do feel that they think is in My head. They asked ridiculous questions about my social life and does she walk to the shop on her own and play in the street! When I said no to both questions, they made notes! They asked if I believed I am over protective! I really think that they think I'm making her believe that she is poorly. X

[MaryF in reply to purple-lou]

Yes I had all this, they work to a box ticking re mit, it is crucial that you keep your head, and any more appointments like that have somebody articulate that you trust with you, I was painted as a ill woman who wanted my children at home with me, as my husband explained fully, why on earth when in poor health myself, would I want to be not having them at school. Actually they are part time due to their health problems, there is no disbelief, only some rather furious back peddling. Please make a list of notes in bullet points before the appointment so you do not forget anything on the day, which is easy to do, all her symptoms, and medical history! Mary F x

[MaryF]

ps... I know longer get treated badly by either local hospital or education department, so come back to me after the appointment, and I will help further. Mary F x

[MaryF]

Hi again, you also need to URGENTLY get in touch with your local Parent Partnership Service, so that you can get somebody to support you at meetings, they will help strengthen your position and help with the pressure put on you, tell me which area and i will find them for you if you want. Mary F x

[purple-lou]

Thank you. I've just found a local branch and will definitely give them a call.

I don't feel so bogged down now! There is support out there.

Thanks so much xx

[baba]

I hope your daughter gets treatment soon. She is clearly ill. Children do get Lupus and arthritis etc. Meanwhile you and your daughter do not need extra stress from people who don't understand. Good advice above from MaryF (a well informed lady). Lupus UK have a young persons contact, if your daughter would like to speak to someone. Good luck to you both.

[bam1993]

I just want to say GOOD LUCK and stay STRONG!!!!!! For both yourself and your daughter - It is bad enough trying to get dr's to take us seriously, and I have had experience of people looking at me as if it is all 'in my head'-that's why it is so great to have this site...Great advice from Mary F-she has been through exactly the same by the sounds of it and come out of the other side-so take heart!! All the best xxxx

[purple-lou in reply to bam1993]

Thank you. This site is a life saver. Xx

[SarahHeney]

Yes. My son, 15 now missed a lot of his first year of high school and most of his second. I cannot describe the stress this put the family under. I believed one of uss would end up in prison. You have some great advice but I would add, keep a running list of every single appt that you have whether doctors/specialists/school etc to support your position that you are actively dealing with what is happening. Ours showed how much time had been spent with doctors, paediatritions, psychiatrists, educational psychologists, bloods apptsetc etc. This will tell a real story on your behalf. I have lupus as well..the stress made me very ill so I sympathise. In the end we removed him from the school as they had also turned very aggressive with us. We put him in a mych smaller school and a year on he has recovered and is happy again. Happy to support you in any way. I am on FB x

[purple-lou in reply to SarahHeney]

Thank you. Posting this question has opened my eyes. There must be lots of families out there who are struggling, just like me, and are being portrayed as criminals.

I love my daughter and it is agony to see her in so much pain. She is only 8,but she knows that people at school don't believe her.

I am also very angry because a day after the meeting at home, the school nurse and family liason officer questioned her alone at school. I worked in schools before I was ill so I know that this isn't following protocol.

School only care about their attendance. That's all.

It's comforting to know that you have managed to come through a similar situation.

Thanks xx

[SarahHeney in reply to purple-lou]

A couple of things. Noticing her age, is she in the first year of a new primary school. Secondly is she aware of how ill you are? Children of ill parents ofter subconsciously worry something may happen to them while they are at school. Also if this is a new school something about it may be making her unhappy. It helps to explore all these possibilities as tge cause may be psychological, or as with my son it may be a combination of both x

[Hidden]

Hi - I had a month at primary school where I felt terribly sick and ill and my mum had to take me to a psychiatrist. We were told it was school phobia but I never really knew why . Then decades on my oldest son had loads of problems at his Scottish primary school. The school would summon us weekly and make us feel like terrible parents. He suffered from chronic and severe eczema and at the age of 8 was diagnosed with Asperger's syndrome after we had referred him ourselves.

Even after getting statemented as autistic many teachers and education department staff would make us feel responsible for his eccentric behaviour (he was never violent). It turned out in several occasions that teachers were bullying him and this in turn would be a free card for his peers to bully him too. He is very clever (maths) and I think some of the less emotionally intelligent teachers held this against him. Now he is in his fourth year at uni a long way from home studying economics. He still struggles with eating certain colours of food and has terrible eczema as I had. But basically the problems he encountered as a kid have given him strength to fight for himself and I'm very proud of him.

Even if your daughter's issues turn out to be psychological the school shouldn't be persecuting you but should be helping. But the school aren't specialists and the rheumatologist might diagnose something such as JIA or JRA or Lupus so they should be supporting you not threatening legal action?

This awful time you are having will surely come to an end and you and your daughter will come out the stronger for it. Best of luck and please don't give in to the bullying educationalists who should know better. X

[pigsty]

You got some great advice here and I hope you get the situation resolved.

The school are monitored and have pressure put on them by local authority and Ofsted concerning attendance...they too have to provide evidence of what they have done to improve attendance

BUT there is no need for them to be do aggressive in their dealings with parents.

[stiff19 in reply to pigsty]

Well said and yes the schools are all about attendance. But it’s no less appalling and just feels so unjustified, the poor lady and daughter unwell yet have to do all the work to prove it and possibly suffer because of it.

My daughter is like me and seems to pick up any bug going and especially tonsillitis. The school say send your child to school when I’ll and they decide wether to send them home. I did this against my better judgement to gat a text from daughter saying please come and get me. I went and she was sat and had been for hours, not participating in lessons but sitting with head in hands burning temp and deadly pale. I took her straight to docs and told give her something immediately to bring temp down and antibiotics she had tonsillitis.

People’s well being should come before figures. It’s appalling that this goes on.

Education is so important but so is wellbeing, ill health is not chosen at any time whatever it is, and unavoidable and there are blatant truants or people who don’t take education seriously but those are obvious, the system is wrong and my son missed periods of school with ill health but did not damage his education as is preached infact he left school went to college and left with awards of distinction.

Beaurocracy gone mad.

[Hamptons]

My advice as a teacher would be for the GP to write a clear letter to the school outlining the symptoms and how they can affect your daughter. There may not be a diagnosis but a medical practitioner has agreed she is symptomatic. If there are referrals to specialists then I would give copies of those to the school. I would also chase specialist secretaries to get the appointments through explaining the risk of prosecution.

I hear what you have said about the preconceived ideas but my understanding is that after 15 consecutive days absence due to illness there may be possibilities for a Hospital school referral. In our area that is short term but it may give chance for the specialist visits to happen.

Again, I hear they have ideas but a discussion around a healthcare plan in school (not an EHCP) that uses the gap information to plan appropriate measures - maybe lessons in one area. Most schools have nurture areas. Short days in for core subjects then home. Lessons to be sent home. Home for lunch to sleep.

Even without diagnosis there is a duty of care once they have the go letter but it needs to lay out symptoms and reasonable expectations.

Sadly, attendance is such a hot potato things get overlooked.

Contact the county attendance office directly and ask for advice. Also parent groups -Kent have IASK which is a neutral body that supports parents with those procedures.

Good luck.