Information for service users, families, carers and professionals
Information given by a service user will be kept confidential. A service user may choose to give consent to share confidential information with a carer and this should be documented in their records by the professional.
Working with family, friends and carers
In general, the exchange of relevant information between service users, professionals and carers benefits everyone.
Members of staff have a duty to both the service user and the carer not to disclose confidential information, however good practice can ensure confidence in sharing information.
Confidentiality does not prevent contact between professionals and carers and therefore:
- must not be used as a reason for not engaging with a carer
- cannot prevent the sharing of non-confidential information between a carer and a professional.
Lives may be lost if information is not shared as it should be. A new Caldicott principle recognises this when it states:
'The duty to share information can be as important as the duty to protect confidentiality’.
- identify any carer(s)
- determine if the service user has capacity to make the decision not to share information
- agree with the service user what information or type of information can be shared and with whom e.g. through the use of advance statements
- any agreement to share or withhold consent should be reviewed regularly
- any review of consent should be recorded in the service user’s records and all staff made aware of this
- encourage the exchange of information between services users, carers and professionals
- staff should be approachable and explain any information given, appropriately to the carer e.g. elderly carer, young carer
- explain to service users and carers what information can be shared and why some information cannot
- some information may be shared without consent, such as information needed to safeguard children
- establish information sharing expectations between the service user and carer ensuring these are available to all members of the professional team
- record and review these expectations with the service user and/or carer regularly
- ensure processes and practices are in place so everybody involved understands their responsibilities so that confidential information is not given to the wrong person by mistake
- where a care plan specifically relates to the involvement of the carer this element of the care plan should be shared with the carer
- assess any risk if information is not shared with carer (discharge arrangements / medication)
- offer time to the carer on a one to one basis
- involve carers in discharge arrangements where appropriate.
Providing carers with general information about an illness or offering emotional and practical support does not breach confidentiality.
General information can include:
- information about conditions and the behaviour it may cause
- background information on medication and possible side effects
- information about the workings of the Mental Health Act
- contact details of the local / national carer support organisations
- contact details of health and social care professionals
- discharge arrangements which directly impact on the carer
- information about Care Programme Approach (CPA)
- any confidentiality restrictions requested by the patient
- the role of each professional involved in the patient’s care
- how to access help, including out of hours service contact details in the event of a crisis.
Professionals should ensure they establish what information carers already know, such as diagnosis and treatments, as any information carers are already aware of is not to be treated as confidential.
Consent to share information
The use of advance statements (also known as advance directives) are a useful way of setting out in clear detail the services user’s wishes about what should happen and which carer(s) to contact should they become too unwell to engage in discussions about sharing confidential information. Staff should ensure carers know if such a statement has been prepared, where the statement is held and how to activate it.
Issues around confidentiality should not be used as a reason for not listening to carers or for not discussing fully with the service user the need for carers to receive information.
Even when the service user continues to withhold consent to share information, the carer must be given enough information to enable them to provide appropriate care. The carer should be given the opportunity to discuss any difficulties they are experiencing in the caring role with a member of staff.
Lack of capacity to consent
If a patient is unconscious or unable, due to a mental or physical condition, to give consent or to communicate a decision, the health professionals concerned must take decisions about the use of information.
Sharing information with other organisations (e.g. police)
While the police have no general right of access to health records there are a number of statutes which make the sharing of confidential information a requirement. This means the disclosure of confidential information to the police can actually be lawful in some circumstances. For full information please refer to the NHS Code of Practice. For advice on sharing information with the police, please contact the data protection team.
You can view a copy of our carer support strategy in our strategies area.
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