A carer is anyone, including children and adults, who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.
Effective care and better clinical outcomes rely on a three-way partnership, called the ‘Triangle of Care’, between:
- people who experience mental health problems
- their families and carers
- our staff.
As a carer you have important experiences and information about the person you care for, and we want you to share this with staff. It’s only by working together that we can form the most suitable recovery package.
Our staff also want to ensure you are provided with the support you need to maintain your wellbeing. You will be offered a meeting to discuss your own needs and discuss any services which you may find useful.
Any information you are already aware of is not treated as confidential. Our staff are not prevented from talking to you about facts you already know.
Our staff cannot however share new personal information the service user has shared with them unless they provide their consent to do so – this would be a breach of confidentiality.
A service user does not have the right to prevent our staff from:
- engaging with you
- receiving information from you
- listening to your views
- giving you information, advice and support.
Find out more information about the Triangle of Care from the Carers Trust.
General information
Providing you with general information about your loved one’s illness or offering emotional and practical support does not breach confidentiality.
General information can include:
- information about mental health conditions
- background information on medication and possible side effects
- advice about withdrawal symptoms if your loved one is in the process of cutting out or cutting back on addictive substances, or to help you understand if your loved one may have stopped taking their medication
- information about the workings of the Mental Health Act
- contact details of the local or national carer support organisations
- contact details of health and social care professionals
- discharge arrangements which directly impact on you
- information about Care Programme Approach (CPA)
- any confidentiality restrictions requested by the service user
- the role of each professional involved in the service user’s care
- how to access help, including out of hours service contact details in the event of a crisis.
Confidentiality principle
Our clinical team can share with you new information given to them by your loved one, information not previously known to you, only if they have given their explicit permission to do so.
If a service user does give consent to share confidential information with their carer, our staff must document this decision in their records. This will be reviewed regularly and documented in the care records.
No consent is required to seek information about a service user, only to share it.
For full information please refer to the Confidentiality: NHS Code of Practice.
Sharing of information in exceptional circumstances
Confidential information can be disclosed in exceptional situations such as where a service user or someone else’s health and wellbeing are under serious risk, or where there is a public interest or legal reason for disclosure without consent.
Consent to share information
The use of Advance Statements (also known as advance directives or information sharing agreements) are a useful way of setting out in clear detail:
- a services user’s wishes about what should happen
- which carer(s) our staff can contact should the service user become too unwell to engage in discussions about sharing confidential information.
Our staff will let you know:
- if such a statement has been prepared
- where the statement is held
- how to access it.
Withdrawing consent to share information
Sometimes, a service user might consent to sharing confidential information while they are well, but rescind this consent when they become unwell, withdrawing from their carer and loved ones.
The care team can work with you and your loved one at a time when they are well, to document what happens when they become unwell. This will support you and the care team to continue to meet the patient’s information sharing wishes when they are at their most vulnerable.
Decision not to provide consent to share information
If your loved one decides not to consent to share information, our staff must provide you with enough information to enable you to provide appropriate care. Support can still be given to you.
Lack of capacity to consent
If a service user 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. the police)
Whilst 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.
Working with you
In general, sharing relevant information between service users, health professionals and carers benefits everyone. This is the foundation of good care.
Similarly, carers have the same rights to confidentiality of information they disclose as the people they care for do.
Our staff have a duty to both the service user and you, not to disclose confidential information, however, crucial to this process is the building and maintaining of trust between your loved one, their clinical team and you, to ensure confidence in sharing information.
Confidentiality does not prevent contact between our staff and you, therefore:
- our staff must not use confidentiality as a reason for not engaging with you
- a service user cannot prevent the sharing of non-confidential information between you and the clinical team
- a service user’s lack of consent cannot prevent you from providing information you feel is relevant to the individual’s care.
Lives may be lost if information is not shared as it should be.
Caldicott 7th Principle recognises this when it states ‘the duty to share information can be as important as the duty to protect confidentiality’.
Reference: Sharing information and confidentiality policy.
Good practice to help our staff maintain common sense confidentiality
We ask our staff to work to the following good practice principles to make sure you receive the right and appropriate information, and are supported as a carer:
- identify a service user’s carer(s)
- offer time to the carer on a one-to-one basis
- determine if the service user has capacity to make the decision not to share information (see ‘lack of capacity to consent’ above)
- 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
- agree with the service user what information or type of information can be shared and with who e.g. through the use of Advance Statements (see ‘consent to share information’ above)
- regularly review any agreement to share or withhold consent
- record any review of consent in the service user’s records and make all staff involved in the service user’s care aware of this
- encourage the exchange of information between service users, carers and professionals
- be approachable and explain any information given in an understandable format
- 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 and 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 a carer (discharge arrangements or medication)
- involve carers in discharge arrangements where appropriate.
L854, v10, 06/09/2024, (archive 07/09/27)