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Consent and confidentiality 
AT CPFT we believe that carers and family members should be seen as working in partnership with those who provide clinical services. They provide important information that may help doctors, nurses, social workers and therapists to have a better understanding of the needs of service users. In order to be effective partners, carers and family members need clear information about the service user’s care and treatment, their medication, potential side effects and any circumstances that may put the service user at risk. Confidential health-related personal information is shared between care professionals such as doctors and nurses involved in a service user’s care, so that they get the safest and highest possible quality clinical care. In addition, staff need to include carers in the extended care and support team. Carers’ roles require them to be well informed to be able to provide the essential support that service users need. Effective care and better clinical outcomes rely on this three-way partnership (triangle of care) between people who experience mental health problems, their families and carers, and our staff.

Who is a carer?

‘Carers are people who provide help and (unpaid) support to a family member, friend or neighbour who would otherwise not be able to manage. We use the term ‘carer’ in its broadest sense to include the most significant people in the life of the service user, including spouses, parents and young carers. It is also important to note that the carer is not always the “nearest relative”. The term “nearest relative” is defined in the Mental Health Act. The person they care for may have a physical or learning disability, dementia, mental health problems, may misuse drugs or alcohol or may be ill or frail.’ Consent to share information. Young carers are children and young people who often take on practical and/or emotional caring responsibilities that would normally be expected of an adult.Informal carers must be given enough knowledge to enable them to provide effective care from an early stage. Carers should be given the opportunity to discuss any difficulties they are experiencing in their caring role with the patient’s staff.

 Duty of confidentiality

Service users have a right to expect that information about them will be held in confidence. Carers can expect that the information they provide will be held in confidence by the professional care team. Crucial to this process is the building and maintaining of  trust between service users, professionals and carers which  is the foundation of good care.

Duty to share information

Doctors, nurses and other members of the care team have a duty to share information about the care treatment, medication and other important information about a person’s health, in order to provide the safest and best clinical care possible. This means that sharing information must be discussed with service users early on in their care and where there are difficulties in sharing information that is crucial to care this should be seen as a major problem that requires intensive work. Even when there are problems with confidentiality this should not be used as a reason for not listening to carers or for not discussing fully with patients the need for their carers to receive information and support. Further where service users do give consent for information to be shared this must be done

Consent to share information

Confidential information about a service user should only be shared with their explicit permission. If the service user doesn’t give permission, confidential information can only be disclosed in exceptional situations, such as where the service user’s, or others’ health and wellbeing is under serious risk, or where there is a public interest or legal reason for disclosure without consent. In the absence of consent it is good to share non confidential information with carers. The care team should always revisit a service user’s refusal to share information with their carers. The support carers can offer is invaluable in supporting individuals recovery.

The care team  should  seek to understand the reasons why a service user may be declining to share information; the best outcome is always that they do agree to share at least some information.  Detailed documentation of any conversation related to consent and family or carers is imperative. Many service users often agree to sharing information with carers when their condition improves. Any decision made must be always be made in the best interest of the service user and to achieve the best possible outcome for them. The provision of general information about mental illness, emotional and practical support does not breach confidentiality. General information can include: Information about the condition and behaviour it may cause. Advice on managing, particularly in a crisis situation. Contact details of the team responsible for the service user / patient’s care.

 Principles of Best Practise

Staff should seek service users views on sharing information with informal carers / family as early as possible. This will usually be during assessment or admission.  This is the time when it is most likely the service user will refuse permission.

This may be because they may be very unwell, feel betrayed by their carer, or be very angry about the carer’s role in their assessment or possible detention.

There needs to be a clear understanding that sharing information will need to be re-visited during the care episode. Regular review of the situation by the care team is essential. The care team  should  always seek to understand the reasons why a service user may be declining to share information.

Even if permission to share information is refused at this point staff must still give general information about mental illness and treatment options, discuss the carer’s concerns or fears and signpost them to carer’s support services. If permission is given to share information with the carer it is essential that it is shared.

 Any decision made must be always be made in the best interest of the service user and to achieve the best possible outcome for them. It is essential that staff explain how and why the decision to breach consent is their best interest’.

 The carer may need help and support to understand their relative’s decision to exclude them. Deciding what information is general and what is personal will be a clinical judgement in each case.

 The same principle of confidentiality applies to information given by carers. Staff must clarify the carer’s expectation as to who the information can be shared with.

 Where the service user withholds consent or lacks capacity and cannot express their wishes clearly, personal information will only be shared on a strictly ‘need to know’ basis.

The page was last updated on 08 May 2019 by carers.editor.

Cambridgeshire and Peterborough NHS Foundation Trust
Elizabeth House, Fulbourn Hospital
Cambridge, CB21 5EF

T 01223 219400 (open 8:30am to 5pm)
F 01480 398501

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