My son has had Type 1 diabetes since 2001. He's never had good control. He's described as a "brittle diabetic" but that's a label not a diagnosis.
Since he hit puberty his control is off the clock. His school attendance has dropped over the last 2 years until last term he was making only 1 or 2 days a week. Deciding whether he's fit to attend isn't subjective - we've got a protocol from the hospital. We do his blood sugar every morning, and if it's above or below a certain reading he can't go in. The school were always having to send him home too. Bill has had 5 hospital admissions since September - these are never more than 24 hrs, and sometimes only 12.
At the end of the summer he got a new diabetic specialist nurse - a man with Type 1 diabetes! Bill was so pleased! The consultant sees us for 10 mins every 4 months. The nurse prescribes, changes doses, provides equipment - the nurse is Bill's key worker.
Then in October the nurse revealed that Bill had been self-harming. I had no idea - he'd burnt himself in places that were normally covered by clothes. But thank goodness he had the sense to tell his nurse. Counselling with CAMHS was arranged, and his counsellor is lovely. The new nurse was brilliant - either Bill or me - mostly Bill - spoke to him most weeks last autumn. Then in mid-November the nurse went off sick and never came back.
By half term Bill had given up hope on his education. The school describe him as an "outstanding student" but with 10% attendance his GCSEs were going to be pitiful. He was suicidal. He stopped even trying to go to school.
The counsellor from CAMHS has been amazing. The EWO has been supportive. But the school has not. They've sprung a sort of trap on us - and I suspect it may be to protect themselves legally.
In December we had a meeting at school - staff, SENCO, EWO, but no one from the hospital or CAMHS. It seemed really positive. They suggested a Common Assessment Framework (CAF) document to protect Josh's interests - he'll be 16 in the summer but he wants to do A level and go to uni. The CAF would help guarantee he gets the services he needs. Sounded great!
Two weeks ago we had the follow-up meeting. It was a nightmare. The SENCO had written a CAF full of really serious lurid allegations about me. Apparently I allow truants to hang out at our house, don't wash Bill's clothes for weeks, and my house is a well known hang-out for teenagers using drink and drugs!!! And that's just the highlights. Makes me sound like Fagin - and it's rubbish. 
I tried to talk calmly, but I was so hurt and so shocked I burst into tears and ran out. Luckily there was a loo nearby. Bill's CAMHS counsellor came in and hugged me. She said she didn't believe a word of it - he couldn't be the lovely, emotionally-intelligent boy he was if I was the neglectful parent described in the CAF.
We went back into the meeting and she pointed out that self-neglect was a symptom of depression. I told them Bill refused to shower even after I told him he was smelly. She also said that serious emotional problems were common in teens coping with Type 1 diabetes.
She also said that she didn't think Bill would mind her telling them that he'd kicked a friend out of the house a few weeks back because he'd had drugs with him. Bill told her he's got enough troubles without adding drink and drugs to the mix.
Bill was supposed to be at the meeting, but he felt too sad and anxious to attend. The SENCO said it was such a pity he wasn't there. Thank goodness he wasn't! The school intended to spring this document on my hugely vulnerable 15 year old in a room full of adults! 
It was bad enough for me. I can't believe they thought this was OK. The CAF also breaches Bill's medical confidentiality, and CAMHS are very concerned about this.
I refused to sign the CAF. The CAMHS woman gave me a lift home and said I'd done well not to sign it, that I shouldn't sign it until I felt the CAF was fair and helpful. The CAF is entirely voluntary.
At the end of the meeting the SENCO said she'd send me a revised version of the CAF that I could sign. The new version they emailed had tiny changes - all the serious stuff was still in there. None of what his counsellor had said in the meeting was included.
Bill asked to see the document. He's got the right as he would have to agree to the CAF too, so I let him - though I warned him it might be upsetting. He was devastated. Called it child abuse, abuse of power and character assassination.
He showed me that instead of a x against the CAF option at the top of the document, it's got an x in the box for Child Protection!
Bill is so angry. He says that if this is what the school think of his family and friends he never wants to see any of them again. But all the other 6th form places round here will have gone by now, and the school have already agreed to take him if he gets 5 A-C GCSEs, which he should just about manage. Grandparents are paying for home tuition. His current school may not be ideal, but they may be his only option.
The CAMHS counsellor told me to postpone telling them I wasn't going to sign for as long as possible. Bill's 6th form application is going through, and it would be best if that's confirmed first. Also Bill sees the cons. psych for the first time this week and his views are key. We may not need the CAF. The psych can make them provide everything we need - LEA home tuition, etc.
Tomorrow I'm going to have to let the school know I'm not going to sign their CAF. If the x against Child Protection isn't a mistake, then I'm terrified of what they'll do next.
The CAMHS counsellor read through the whole of Bill's hospital notes. She also looked through his brother's. She says all three of us - but specially Bill - have been let down by outside agencies again and again. She called a CAMHS team meeting and did a presentation about all the injustices and harm done to Bill, his brother and me. She tells me the whole CAMHS team are on our side. She assures me that CAMHS have no Child Protection concerns.
She said "I'm going to be Bill's champion. And I'm going to champion you and Mungo too"! But I've been this way before - I don't trust the processes - and I'm not sure what she can do to protect us from the school.
I suspect that the whole CAF thing is to protect the school. Bill is very, very bright. He's always well behaved and always does his homework. What did I do to deserve him? His education has suffered because of his health but has the school always done all it could to help him?
The answer would have to be "No". Vague promises of work sent home which never materialised. No support when his erratic attendance left him feeling lost, both socially and with the curriculum. Bill says the SENCO, who wrote the vile CAF, hasn't had a one-to-one with him during the 4 years he's been at the school. The SENCO has a reputation for being a class A b*tch.
But if the school can produce a document that shows his home environment was appalling, they can use it to show that there wasn't much they could do. After all, they were fighting a losing battle with my lousy parenting...
On top of all this, when I rang the diabetic clinic to find out what cover had been arranged they told me that the service has been cut. Now Bill's only diabetic care is 10 minutes every 4 months with a consultant. There's no one to help or advise us day to day. This is appalling. I'm going to see if Diabetes UK can help, and am expecting a call from our GP on Monday. The GPs locally don't deal with Type 1 diabetes, but our GP's going to have to if there's no one else.
OK, they can't take Bill away - he's 15. But I am a mass of anxiety and this horrible sense of injustice and fear of what people may do or may be planning. It's totally screwing me up - I can't sleep, I can't eat, I obsess about it. I'm a nervous wreck. Which isn't good for my kids.