Carers Rights & Confidentiality

The Trust’s policy states that staff should be “sensitive to the service user’s wishes and confidentiality requirements; engage with family members and carers as care partners”.

To ensure the rights of confidentiality for the service user staff will always seek consent from them to share information with their family and friends.

Service users are entitled to decline to give consent for information to be shared with their family and friends, or they may set specific limitations to information that can be shared.

For consent to be given the service user must demonstrated that they:

  • Have the mental capacity to make the decision whether to consent or refuse.
  • Have been provided with all of the relevant and sufficient information.
  • Not be under duress or excessive pressure. However, carers, family and friends also have rights to confidentiality which means that they must be offered the opportunity to pass on their thoughts and/or information to the nursing and medical team involved in the care of their loved one.

Carers can ensure that their voice is heard by speaking to the nursing staff or the responsible clinician.

Carers, family and friends can also give or decline consent, for information that they share, to be passed onto the service user.

If you do give information you wish to be kept private from the service user please ensure that you inform the staff member of your wishes at the time of sharing the information.

It is important that Trust services have your up-to-date contact information, so that we can continue to include you in your relatives care planning. We would ask that you advise us of any changes to your contact details, at the earliest opportunity.

In order for mental health staff to help address your needs please let them know your role, are you a friend, next of kin or first contact, and if you have any special requirements, such as are you are a young carer.

Comon sense guide to confidentiality

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 or patient, including spouses, parents and young carers. It is also important to note that the carer is not always the “nearest relative”. Some carers may not always recognise they are a carer.

Why is it important to share information with carers

At LPFT we believe that those who provide clinical services should work in partnership with carers and family members as well as the patient. As a carer, you provide important information that can help our staff to have a better understanding of the needs of the service user or patient.

Communicating effectively with carers can also help avoid unnecessary hospital admissions and help prevent serious incidents. Not only this, but involving you as the carer can help you maintain your health and wellbeing and result in better health and outcomes for the person you care for.

Effective care and better clinical outcomes rely on this three way partnership between people in our services, their families and carers and our staff . Working together this way is known as the Triangle of Care.

What is confidentiality and why is it important?

A duty of confidence arises when one person discloses information to another in circumstances where it is reasonable to expect that the information will be held in confidence. It is generally accepted that information provided by patients or service users to a health or social care service is provided in confidence and must be treated as such so long as it remains capable of identifying the individual it relates to.

All staff working in health services are bound by law to a duty of confidentiality to their patients and to carers. A breach of confidentiality can lead to mistrust between the service user and the professional which could affect care.

Carers are also entitled to confidentiality

It is important to note that the same principle of confidentiality applies to information given by carers, family and friends. You should be given the opportunity to discuss any difficulties you are experiencing in your caring role and staff must clarify with you who the information can be shared with. In certain cases you may not wish for any information disclosed by you to be shared with the service user or patient and it is within your rights for staff to respect this

What is consent?

Consent is the approval or agreement for something to happen after consideration. For consent to be legally valid, the individual:

  • must be informed,
  • must have the capacity to make the decision in question and
  • must give consent voluntarily.

Getting consent to share information

The easiest way for staff to be able to share information to the carer or relative is to have a conversation with the service user or patient at the start of their treatment. This will help them better understand who their personal care network are and who at home best understands their needs. On occasion the service user or patient may not be well enough to make decisions for themselves. This may result in staff needing to undertake a capacity assessment so that they can better support the service user or patient with making decisions about their care and sharing appropriate information.

When a patient wants to keep personal information private, then these wishes should be respected by staff. As a carer or relative if you feel that certain information should be shared with you then you may ask for the professional to seek further advice from the Information Governance team.

When can confidentiality be broken?

Any decision to break confidentiality must always be made in the best interest of the service user/patient and to achieve the best possible outcome for them. It is essential that staff explain to you how and why the decision to breach confidentiality is in the patient’s best interest.

Where the service user withholds consent or cannot express their wishes clearly, confidential information can only be disclosed in exceptional circumstances. This could be 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.

Similarly, a carer’s confidentiality can only be broken in exceptional circumstances such as risk to their own or others’ health and wellbeing, public interest or for legal reasons

As an area of good practice staff will:

  • Discuss with the patient/service user what particular information they wish to keep private.
  • Explain to the patient/service user the importance and value of sharing information with those who care for them.
  • Explain to you at an early stage what information can be shared, and if information cannot be shared explain the reason for this.
  • Share this leaflet with you and answer any queries you may have on this topic.
  • Ensure that you receive as much information as possible to help you in your caring role.

Issues around confidentiality should not be used as a reason for not listening to you or for not discussing fully with patients the need for you to receive information so that you can continue to support them.

Types of information

The nature of the information shared can vary according to circumstances, and there are three identified types of information.

General Information

This includes information about conditions that’s contained in publicly available leaflets, published materials, websites, side effects of medication, legislation including the Mental Health Act, welfare, rights for carers, contact information for local and national services and their availability and generic information on how to access help, including out of hours service in the event of a crisis.

Personal Information

Personal data is information that relates to an identifi ed or identifi able individual. What identifies an individual could be as simple as a name or a number.

Sensitive Information

This data is personal data that needs more protection because it is sensitive. This will include specific information about the person you are caring for including any health information, for example:

  • the diagnosis
  • the care plan
  • discharge care planning
  • contingency planning.

The type of information that is classed as sensitive personal information includes:

  • racial or ethnic origin
  • political opinions
  • religious or philosophical beliefs
  • trade union membership
  • sexual orientation.

There is further information on sensitive personal information also known as special category data at Providing you with general information about an illness or offering emotional and practical support does not breach confidentiality. Staff should also check with you what information you already know, such as diagnosis and treatments, as any information you are already aware of is not to be treated as confidential.

Why is consent important?

Good practice checklist

The checklist below has been adapted from the “Carers and Confidentiality in Mental Health” leaflets produced by the Partners in Care Campaign and published by the Royal College of Psychiatrists. It is designed to assist staff to work more closely with carers within the boundaries of current legislation and to help carers understand their rights. Although written with mental health services in mind, the principles of this are transferable to any health setting.

Good practice guidance

Carers are given general factual information, both verbal and written about:

  • A diagnosis
  • What symptoms/behaviour may occur in people with this diagnosis, and how to support the person
  • Medication – benefits and possible side effects
  • Local health services available
  • What different care and treatment might be used for people with this diagnosis or health issue
  • 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, emergency care/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
  • Assessment of their own needs with their own written care/support plan
  • Triangle of Care leaflet