Commonsense Confidentiality – A guide for carers, family and friends

This leaflet provides advice and guidance to carers, family and friends on how information can be shared by Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust.

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Commonsense Confidentiality (2Mb)

A guide for carers, family and friends

  • Introduction

    This leaflet provides advice and guidance to carers, family and friends on how information can be shared by Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust.

  • What is a carer?

    A carer is someone who, without payment, provides help and support to a friend, neighbour or relative because of frailty, illness or disability. This may include helping with personal care, medication, cooking, shopping, housework and giving emotional support.

  • The importance of sharing information with carers

    We recognise that if you are caring for a friend or family member the sharing of information between staff, and you as a carer, is vital to the care and treatment of your friend or relative.

    Providing you with information about care plans and medication, and advising you on managing a crisis, may be able to help you to deal with difficult situations until other assistance is available.

  • Issues in sharing information - getting consent to share

    Healthcare is a partnership between service users, carers, families and professional care staff. Sometimes there can be difficulties in relation to confidentiality and sharing information. When a service user wishes to withhold information then these wishes must be respected by professional staff. It is essential that you are informed of this. Staff will ensure that you receive as much information as possible to help you in your caring role.

    In some circumstances it may be possible to share information with a carer. Such circumstances would include where there is a risk of harm and sharing appropriate information with you will alleviate this risk, where there is another legal authority i.e. an Order of the Court, or where the service user is lacking capacity in relation to information sharing decisions and it is considered in the best interests for information to be shared with you.

    When the clinical team are making a decision in the best interests of the service user, they will consider the following:
    • Whether you are the person that provides care for the patient
    • Whether there is any legal documentation in place to prevent sharing
    • Whether any previous wishes are recorded which would prevent sharing of information
    • Whether there are any safeguarding issues apparent.

    As a carer, the team will ensure that you receive as much information as possible to help you in your caring role.

    As an area of good practice, the team will:
    • Discuss with the service user what particular information they wish to withhold, if any.
    • Explain they are bound by law and professional codes of conduct and have a duty of confidentiality to their patients.
    • Explain that they have the same duty of confidentiality to you as a carer in relation to any information you wish to discuss.
    • Discuss the importance of confidentiality with you at an early stage and that views on information sharing are recorded.
    • Explain to you what information can be shared and if information cannot be shared, what the reasons are for this.

  • How can information be shared?

    Issues around confidentiality should not be used as a reason for not listening to you or for not discussing fully with service users the need for you to receive information so that you can continue to support them. You should be given enough information in a way that you can readily understand to help you to provide care efficiently.

    Even when the service user continues to withhold consent, you will be given enough knowledge to enable you to provide effective care from an early stage. You will be given the opportunity to discuss any difficulties you are experiencing in your caring role with the service user’s care co-ordinator. A care co-ordinator is the person who plans the support service user get from different mental health professionals.

  • The provision of general information

    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 the behaviour, particularly in a crisis situation.
    • Contact details of the Care Co-ordinator.
    • Background information on medication and possible side effects.
    • Information about Care Programme Approach and what it involves.
    • Contact details for local and national support organisations.

  • The Carers’ Charter

    In line with the Carers’ Charter the following approaches are being implemented:

    • Leaflets on confidentiality and information sharing will be given to service users and carers and discussed at the earliest stage, usually during assessments and then at reviews.
    • The team will help service users to distinguish between sensitive and personal issues (for example, about their sexuality), which are to remain confidential, and more general information about the illness, which can be shared.
    • Issues regarding confidentiality will be recorded in the service user’s health record so that all staff are aware of any changes in the service user’s attitude regarding confidentiality.
    • The use of advance statements will be encouraged. These allow service users to plan their care when they are well, explaining what they would like to happen if they become unwell.
    • The team will help patients to understand the benefits of sharing appropriate information with their carer.
    • The care co-ordinator will provide carers with the support and help needed on issues relating to information sharing and confidentiality.
    • Carers are encouraged to ask questions. Time must be made available by the team to answer questions.
    • Professionals will involve carers in treatment plans and in major decisions about the service users as far as they can.

  • Good Practice Checklist

    The following checklist has been taken from the ‘Carers and Confidentiality in Mental Health’ leaflet produced by the Partners in Care campaign and published by the Royal College of Psychiatrists. It is designed to assist staff to work closer with carers within the boundaries of current legislation and to help carers understand their rights.

    Carers are given general factual information, both verbal and written about:
    • The mental health diagnosis
    • What behaviour is likely to occur and how to manage it
    • Medication – benefits and possible side-effects
    • Local in-patient and community services
    • The Care Programme Approach (CPA)
    • Local and national support groups

    Carers are helped to understand:
    • The present situation
    • Any confidentiality restrictions requested by the patient
    • The patient’s treatment plan and its aims
    • Any written care plan, crisis plan or recovery programme
    • The role of each professional involved in the patient’s care
    • How to access help, including out-of-hours services

    Carers are given:
    • The opportunity to see a professional on their own
    • The right to their own confidentiality when talking to a professional
    • Encouragement to feel a valued member of the care team
    • Confidence to voice their views and any concerns they may have
    • Emotional and practical support
    • An assessment of their own needs with their own written care plan (ie if the patient has a serious mental illness or learning disability).

  • What if I have a comment, suggestion, compliment or complaint about the service?

    If you want to make a comment, suggestion, compliment or complaint you can:
    • talk to the people directly involved in your care
    • ask a member of staff for a feedback form, or complete a form on the Trust website (click on the ‘Contact Us’ tab)
    • telephone the Complaints Department 0191 245 6672
    • email Please note that information sent to the Trust via email is sent at your own risk
    • We are always looking at ways to improve services. Your feedback allows us to monitor the quality of our services and act upon issues that you bring to our attention.
    You can provide feedback in the following ways:
    – the quickest way for you to do this is to complete our short online survey at
    – complete a Points of You survey, available from staff.

  • Reference

    Carers and confidentiality in mental health, May 2010 Royal College of Psychiatrists

  • Further information

    • It’s the responsibility of all care staff to work in partnership with carers so you can talk to any member of the team about your relative, friend of family member.
    • Patient and Carer Engagement Team Tel: 01670 501 816

  • Useful resources

    The following booklets are available from staff.

    • Working together to support the person you care for
    • Carers’ Charter
    • A checklist for carers
    • Getting to know you
    • Useful contacts for carers
    • Mummy is poorly
    • Resources for carers – additional information resources

    These booklets and other useful publications are also available to view/download at Click on ‘Resources Search’ and type in the title of the leaflet.

  • Get involved

    Sign up to become a Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust member

    Tel: 0191 245 6827

    Membership is completely free and as a member you can:
    • give your views on the Trust’s plans and any issues that interest you
    • vote in the Governor Elections or stand as a Governor
    • receive regular information about the Trust

  • Triangle of Care

    Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust has been awarded a Triangle of Care Gold Star Award. The award recognises the Trusts commitment to ensuring all staff adopt good practice when working with carers and families.

  • Information about content, other formats and version control

    Further information about the content, reference sources or production of this booklet can be obtained from the Patient Information Centre. If you would like to tell us what you think about this leaflet please get in touch.

    This information can be made available in a range of formats on request (eg Braille, audio, larger print, BSL, easy read or other languages). Please contact the Patient Information Centre Tel: 0191 246 7288

    Published by the Patient Information Centre
    2019 Copyright, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust
    Ref, PIC/410/0119 January 2019 V7
    Tel: 0191 246 7288
    Review date 2022