Confidentiality

• Getting information
• Consent and advance statements
• Problems with sharing information
• If consent is withheld

Getting information

If you’re looking after someone who has psychosis, you need information. Finding out about the diagnosis will help you know what to expect. It will also help you to understand more about the symptoms and how they influence your relative’s behaviour. You may want advice on how best to cope, and how to find out about different services.

Mental health professionals, however, need your relative’s permission to share information about his or her illness and treatment with you.

They have a duty to keep information about their patient confidential and are bound by both the law and their professional codes of conduct to do so. They can only share information about someone if that person agrees – if your relative ‘consents’ to you being told about their health. That consent should be informed, given voluntarily, written, and documented in their notes.

NHS professionals can give information without an individual’s consent only if the patient’s safety, or someone else’s safety, is at risk, or when the public good is thought to be of greater importance than confidentiality. This might be because a serious crime has been committed, for example.

It is however entirely lawful for them to share information with you if your relative agrees, and is capable of understanding that he or she is giving consent for that to happen.

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Consent and advance statements

The person who is ill must agree – give consent – for information about him or her to be shared. To do this, he or she must be capable of making a decision. When people with psychosis are very ill, they are sometimes unable to think clearly or understand enough to make decisions – mental health professionals and lawyers call this ‘lacking capacity’.

Mental health professionals should talk about sharing information and consent when your relative is well. It is also a good idea for your relative to write down that they want information to be shared with you in a document called an advance statement. You may see this called an advance directive. When someone is in the middle of an episode of psychosis and is having severe symptoms, they may behave differently towards you, even turn against you, and not give consent to share information with you at that particular time. They can also write down in an advance statement how they would like to be treated if they have an episode of psychosis in future (see Relapse page).

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Problems with sharing information

Many research studies have shown that family members feel they are not given enough information to help them look after someone who is ill. Many feel that mental health professionals should tell them more about the person they are helping to support. They say they often feel left out of discussions about their relative’s health and treatment and don’t understand enough about the symptoms.

When family members aren’t given enough information, they may feel excluded, isolated, angry or frustrated. All this makes it harder to play an effective part in the care of someone. Studies have also shown that family members are better able to support someone who is ill if they know what mental health professionals are planning to do and understand the illness, its symptoms and the treatment plan.

Sometimes mental health professionals may be wary about sharing information because they are worried that breaking a confidence could lead to disciplinary action of legal proceedings against them.

There are various policies and guidelines for mental health professionals about the best way of involving family members in care and treatment even if the individual who is ill does not give consent. Most of them suggest training for mental health professionals about confidentiality to help them understand properly the legal and ethical issues and what information they can and can’t share.

Most of the policies say mental health professionals should talk to the person who is ill about the advantages of sharing information with family members, and, if they refuse to give consent, to try again at a later date (particularly if they refuse when they are unwell).

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If consent is withheld

If your relative decides that he or she does not want you to be told about his or her health or health care, mental health professionals should tell you this so you understand why they can’t be more forthcoming with information.

Even if consent to share information with you is refused, you should still be given enough information to offer support effectively, be given the chance to discuss difficulties with professionals and given help to try to resolve them. Providing general information (when your relative is coming out of hospital, for example) and support does not breach the rules of confidentiality.

Your relative’s right to confidentiality does not stop you telling health professionals about your concerns, nor stop professionals talking to you about how you are coping, or offering you the support you may need.