“Doesn’t privacy mean anything to these people?”

Mum exasperated by unlawful info sharing and ‘Named Person knows best’ attitude

A mum of a child with cerebral palsy has spoken of her frustration at professionals breaching her family privacy.

She says there is a widespread culture of sharing medical information without parental consent – in breach of data protection laws – and that this could have damaging consequences in her child’s life.

Here’s her story:

My child has mild cerebral palsy. This sets the professionals off on manic information sharing because they treat it as a constant “wellbeing need” under the protocols associated with the Named Person scheme.

The existence of mild cerebral palsy would never meet the legal criteria to allow information sharing without my consent and I have made it abundantly clear that I will never consent to information sharing unless I have been briefed first.

This is because most of the advice we’ve received about my child’s condition has been very negative and unhelpful.

In any event, it is our legal right to retain full control over what information is shared.

Doctors and medical professionals repeatedly told us that the brain condition was so severe our child would never walk, talk or learn. But our little trooper has done all of those things and more and is now in mainstream school and one of the brightest pupils in the class.

In part this was made possible because as parents we chose to ignore the ‘professional’ predictions and treat our child as normal.

We do not like medical information which is overly negative being shared as it may taint the views of teachers and reduce their expectations so that negative predictions become a self-fulfilling prophecy.

Yet despite my constant complaints and threats of legal action under the Data Protection Act, I’m ashamed to say I’ve never managed to get control of the information sharing. It has been relentless over recent years as the GIRFEC (‘Getting It Right For Every Child’) mentality has taken hold.

Sometimes when I’ve challenged them for sharing without consent, they’ve claimed I did consent. This is often written down in notes by the professionals, but of course they have nothing in writing from me because it is not true. When questioned they loosely infer consent from vague conversations.

And then there’s the multi-disciplinary meetings. These involve the school, the council, and the health board. All of them are data controllers. The meetings happened frequently and usually without us present. Sensitive information flows freely across data controllers without any consent. Letters and emails containing inaccurate medical information are cc’d to mass audiences and emails ping back and forth unencrypted and unprotected.

Not long before the Named Person scheme was due to come into force, but before the Supreme Court defeat, I managed to get a complaint through to senior levels at the NHS. I spoke with an executive who proudly explained that they were planning to put in place a process for sending details of every single A&E visit straight to the Named Person (who, as we know, will often be a teacher at the council – not a health professional in the NHS and with no role in medical care).

Alarmed I said “But what about the Data Protection Act?” They clearly hadn’t given it any thought. The lack of understanding of what is acceptable in terms of data sharing was not just written into the Named Person law that the Supreme Court struck down. It’s written into the brains of officials at the highest levels.

I sometimes wonder if privacy means anything to these people.

I feel exhausted by the constant fight to try to prevent practitioners from sharing our confidential information inappropriately and unlawfully. When you have so many battles to fight over care issues, you feel you have to pick your battles.

We love our child and know their needs better than anyone else. We want to be able to decide their care and education, and we have the right to decide what, when and why confidential information is shared. Is that too much to ask?

If you have had a similar experience do write to us at stories@no2np.org.