Information sharing: the law and ethical guidance

We have set details out here about our campaign for lawful information sharing.

But why is this so important? For many of us, the consequence of unlawful information sharing is that professionals and the LA agree a 'line' about needs and provision which reflects the level and type of provision they are prepared to offer. This affects the child's rights under the Education Act 1996 to have their needs met irrespective of block contracts or what LAs usually give other children.

But unlawful information sharing also undermines our right to control personal information about ourselves and our families. At a the most basic level, it breaches our right to privacy and can make us feel pretty violated and abused.

So what does the law say?

I have tried to pull together here some relevant law and guidance so that you can see that both parent and child do have rights. I have also added copies of the various codes of conduct which are produced by professional bodies as they touch on ethical duties in relation to confidentiality.

If you have doubts about whether public bodies are acting unlawfully, please seek legal advice.

The Human Rights Act

The Human Rights Act 1998 brings in to force in the UK the rights set out in the European Convention of Human Rights. The rights are set out in Schedule 1 and include Article 8 of the ECHR, the right to privacy. A useful guides Article 8 can be found here and here.

The Data Protection Act 1998

The DPA is exceptionally important in helping to protect your right to privacy as it establishes a set of rules for those who handle your personal data, and gives you a number of rights over that personal data and the way it is handled.

Your rights include the right to make a subject access request (SAR) for information on a file: LA file, school, NHS file etc. It is important to note that, despite what organisations might tell you, a valid request does not have to mention the act nor does it have to be done on a particular form. You can, however, be asked to pay a fee. There are strict deadlines for compliance.

Important guidance on its use can be found on the Information Commissioner's website. Liberty also has some useful information on its site.

It should be noted that the DPA is different to the Freedom of Information Act which doesn't concern personal information but allows the public to access information held by public bodies, e.g. policies, records of meetings etc.

ICO's Data Sharing Code of Practice

The Data Sharing Code of Practice concerns "different types of disclosure, often involving many organisations and very complex information chains". It provides a framework for organisations to make good quality decisions about data sharing. 

How many LAs have read this do you think? How many apply it?

The Common Law Duty of Confidentiality

Common law is not written out in one document like an Act of Parliament.  It is a form of law based on previous court cases decided by judges; hence, it is also referred to as ‘judge-made’ or case law. The law is applied by reference to those previous cases, so common law is also said to be based on precedent.

The general position is that if information is given in circumstances where it is expected that a duty of confidence applies, that information cannot normally be disclosed without the information provider’s consent.
This is quoted from NHS Information Governance Guidance  on Legal and Professional Obligationhere. 

NHS Confidentiality: Code of Practice

The Confidentiality Code of Practice  sets out clear guidelines about the use of personal information and confirms that NHS staff must also consider their duties under the common law regarding confidential information.

NHS Constitution

The NHS Constitution  says it "establishes the principles and values of the NHS in England. It sets out rights to which patients, public and staff are entitled, and pledges which the NHS is committed to achieve, together with responsibilities, which the public, patients and staff owe to one another to ensure that the NHS operates fairly and effectively".

It deals with your right to request your own confidential information and the need to respect privacy.

Royal College of Speech and Language Therapy: Communicating Quality 3

This document sets out best practice guidance for all speech and language therapists. It comments on confidentiality at 1.7.6. The Code of Ethics and professional conduct ate at 1.6.

Sadly, the RCSLT's guidelines on the SEN process do not make any mention of their professional duties of confidentiality or the DPA. I have raised this issue with them but they seem to think that having sent the document to Tribunal panel members was the same as obtaining legal advice on privacy issues. Er, no....They are, however, soon consulting on a new draft and I have offered to be involved. It has all gone very quiet since. Was it something I said?

The Health Professionals Council

The HPC has its own guide to the professional conduct of SLTs and a guide for occupational therapists.

Code of Ethics and Professional Conduct for Occupational Therapists

The Code is found here. Confidentiality is found at p.11. Record keeping duties are set out here.

Guidelines for Professional Practice in Educational Psychology 

The guidelines for Educational Psychologists and confidentiality issues are dealt with at 2.3.

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