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(10 Posts)
met429 Sat 29-Sep-12 01:52:57

Hi I messaged on here before but I would like help please, I want to make sure about things before I make decisions.

I had a further CAF meeting again the nurse raised her voice at me as she will not accept a specialist told me my daughter has Aspergers, she insists its ADD she is very rude and says ive raised her with negativity and changed my daughters school 3 times???

Can any one help with these questions?

1/ At every meeting the school nurse has had a file with her about my daughter, I realized its her 'medical file' she said she could not bring it today as the Dr had it.
Is she allowed to have my child's medical file? my daughter has lung problems and I do not think she should have my daughters file.
The nurse told me that any one dealing with my daughter can access my daughters file, is she right?

2/ Should the school of insisted that I should go to CAF? Should it of been 'The Family File' ?

3/ Were they right to tell me I had to go to CAF and 'Family Parenting Lessons' otherwise my daughter would not get the help she needed as they could not refer her until I had done what they asked?

4/ Can the school nurse access my daughters medical records any time, even if I dont want her too ? I do not want her to access her medical records, Can I refuse to go to CAF and also state I dont want them to know anything unless I tell them what I am willing to let them know?

6/ I was refused an assessment last year on my daughter as I was told she did not have a diagnosis, I was also told as she did not have a diagnosis I could not claim benefit for her. Where can I go for help? My daughter is very hard work and I would like to help her have a sensory room.

Thank you for reading this.

Iceflower Sat 29-Sep-12 09:24:07

Hi there, have you seen this

I have C&P this excerpt which I think makes it quite clear what the rules are about information sharing.

Seeking consent
7.4 The CAF is a voluntary assessment process and, as such, a child or young person and/or their parent/carer must give their consent at the start of the process for the assessment to take place in the full knowledge of what will happen to this information (eg. how it will be stored, who will have access to it). Once the assessment has been undertaken, the child or young person and/or their parent/carer must again give their consent for the information to be stored and shared with other services, preferably through signing the CAF form in the appropriate place on the final version of the assessment.
7.5 In most circumstances (but see paragraphs 7.14 to 7.18 for exceptions), you must only record and share CAF information with the explicit consent of the child or young person or parent/carer. This should not be a significant barrier if you are working in partnership with them. You should also provide accessible copies of relevant documents to the child or young person and parent/carer as appropriate. For common assessment, it is important that you:
U obtain informed consent for undertaking the CAF and for recording the information
U work with children or young people and parents/carers to agree how information is recorded, used and shared
U obtain informed and ‘explicit’ consent for sharing the information detailing
exactly what the consent is for and in what circumstances it will apply (this
can be oral or written; written consent is preferable, eg. through a signature on the CAF and, if you have ongoing contact, review this consent regularly

It is so frustrating that sometimes the people who are meant to help us do the opposite. You can go to your GP and ask to be referred for a diagnosis. I did so as the school said they couldn't!

I'm not sure what assessment you're referring to, but if it's for DLA, a dx is not necessary; what you need to prove is the need. This guide is helpful

Hope this helps x

lisad123 Sat 29-Sep-12 09:30:13

Why is the nurse there? Who is your lead professional?
A CAF invite list is controlled by you and needs to be discussed with your lead professional.
No you don't have to have one, they can't hold it without you so you can ask for it to be closed, I did smile
You don't need a dx to get DLA it's needs based.
Can you give nurse a copy of dx letter?
Yes she is entitled to see your dd medical file, it's her job to work alongside GP.

What are the reasons for the CAF?

bochead Sat 29-Sep-12 10:46:46

If you have to change GP to one that WILL refer you to a developmental pead. The GP van also refer you to an OT to help with the sensory issues. A school nurse & teachers can't diagnose either.

If you can get there ambitious about autism does parenting courses specific to ASD.

What do you need referrals for? (so we can think of alternate ways of getting one).

Have YOU applied for a statement?

You DO NOT have to do a CAF unless YOU want to, if it isn't working for your family drop it. It's incredibly liberating to cut the deadwood out.

With regards to your file it seems to me sometimes that kids have no confidentiality unfortunately.

met429 Sat 29-Sep-12 23:24:14

Thanks every one smile

I have told the nursery through out the 3 yrs that my daughter went that I thought she had autism, they told me nothing was wrong, it was normal for a child to scream and not be left, well, iwasn'tnt normal to me as it went on for 3 yrs, then when she moved school it continued, but they said its the change of school. Then we moved home, I said nothing, the school contacted me the 2nd week to tell me they thought my child had a problem. I had asked my Dr and mchild'sds specialist (another problem) to refer me, they both said the school are dealing with it. I have contacted different places for help, they contacted the school nurse who said "We ardealingig with it" so they would not interfere. Every timIveve stated I do not want the CAF they insisted I would get no further and I would be seen by medicaprofessionalsls of not wanting to help my child. GRRRR!
So because the school noticed my child had issues, they told me the only way I would get help was through CAF and they would get every one involved who was dealing with my child. They asked if I would agree so I said yes, I felt I had no choice!

I canceledelled appointments for my other child, the nurse made a new one and I was again black mailed to go.

I have since seen another Dr who referred me to a Dr that deals with children with different issues. I went to see him and he said he was 98% sure my child had sensory procdisorderssorder and Aspergers.

The school is insisting the CAF continue and that the school nurse continues to be involved. I am livid that the school nurschild'smy childs medical records at the CAF meetings, I have not given permission for this, but she told me she can have them???
I am upset beginninge begining they 'told' me that they were getting the school nurse to see my child in school, I was told 4 weeks later that she had seen my child, she would not tell me what she did or what she spoke about. Again 6 weeks later I was told she had spoken to my other child, I had not given permission!!! Again she would not tell me what she had discussed with my child, but in a conversation told meseparateo seperate my chilseparateo seperate bedrooms.This to me is personal and who is she to tell me.

I was told the education psychologist was coming into see my child, she actually telephoned me before she saw my child, then saw me straight after,listened she listend to the nurse, would not listen to me, fed up of the frustration.
Then they told me they were getting some one in from CALHMS, Again I was introduced to this lady at the CAF meeting, she had seen my child two weeks prior. I was very annoyed as I wanted to know when they were seeing my child and wanted to know what they thought as soon as they had seen my child, not two weeks later! I don'ttold "We dont work like that" I am disgusted!
I feel like she is not my child. I was told that some one was going to work on confidence with my child, at a CAF meeting I was told that my child had taken a friend with them while questioning my child, again I am not happy with this, this is private what is going on.

I have got appointments to see a therapist and a consultant thachild'ss with my childs conditionappointmentot an appointmet with CALHMS, but I am annoyed that the people in the CAF are interfering, I got two appointments my self, also they are wanting inchild'sion on my childs lung condition. I gave strict instructions that my child does not go out in winter, the school nurse told the school to send him out, the consultant told me not to let him out in the cold air.

I want to know if all the things they have done is wrong or arecancelingt? I am cancelling CAFF but I want to know if they can continue to child'sccess to my childs medical records via the school nurse.
I want to know if I can make a coI'mlaint, sorry but im fed up of not being a mother to my child, I feel like my child just lives with me sad

Sorry its happenedt so much has happend.

lisad123 Sat 29-Sep-12 23:45:32

yes you can cancel your CAF. This should have no effect on your child getting a dx. The school nurse is overstepping the mark.
Tell them you want a referal to the devleopemental Paed for a dx assessment. YOU control a CAF and im sick of seeing proffessionals use it as a chance to get together and bully parents.
You should only need a CAF if there is more than 3 proffessionals involved and you need joint working to impact on your childs developement.

Iceflower Sun 30-Sep-12 09:49:49

When you agreed to the CAF, you agreed to information sharing. You may cancel your CAF, but do write to all the professionals concerned withdrawing permission to share information.

appropriatelyemployed Sun 30-Sep-12 10:06:43

Iceflower is right. You need to write and specifically withdraw your consent. Quote the duty to confidentiality and the NHS Code for Confidentiality and the Data Protection Act. Suggest that they set out their legal justifications for continued information sharing if they feel they they have any.

Make it clear you are withdrawing from the CAF and emphasise the guidance set out above and the fact it is a voluntary process which cannot be used to block access to statutory SEN or clinical services.

Set out the objective reasons for the failure of the CAF in your case - be calm and polite here but set out clearly why it doesn't work.

victimofsocialharassment Tue 18-Apr-17 02:37:00

please help me how can i send formal legal notice to school to close the CAF as parentw had withdrawn consent to process and share CAF

victimofsocialharassment Tue 18-Apr-17 02:38:06

heber school head teacher is forcing parents and without our permissoin sending our data to new strangers who are causing damage to our dignity and private life.
How can i stop this CAF from school

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