NHS England - Transformation Directorate

This guidance has been reviewed by the Health and Care Information Governance Panel, including the Information Commissioner’s Office (ICO) and National Data Guardian (NDG).

The panel exists to simplify information governance guidance. Have we done a good job? Let us know at datapolicyhub@nhsx.nhs.uk.

Sharing information with unpaid carers

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A carer is any adult who looks after an adult family member, partner or friend who depends on their support because of an illness, frailty, disability, mental health problem, or addiction. This guidance is specifically aimed at carers who are unpaid. It does not cover carers employed by a health or care organisation or those working for, or in partnership with, a voluntary organisation.

This guidance aims to advise those being cared for, carers and health and care professionals about how to share confidential information about an individual to support their care.

Future guidance will address access to health and care records on someone else’s behalf, for example, a child or a family member (also known as proxy access). This future guidance will cover how carers and those being cared for can make the most of online services to support their care.



Guidance for patients and service users

If you have a carer

If you receive assistance from an unpaid carer, there may be times when health and care professionals need to share relevant information about you with your carer. This would be to support your care. For example, if your carer is picking you up from hospital, they need to know when you will be discharged, or it may be important for your carer to have details of your medication if they help you to take it.

Health and care professionals will need your explicit consent before sharing information about your health and care. Only relevant information will be shared, unless you consent for your carer to have the same level of access as you have to your records. If you do not want information to be shared with your carer, your wishes will be respected but health and care professionals may provide your carer with general advice on how to care for you.

If you have concerns about your confidentiality, you can discuss this with the health and care professionals caring for you so they can support you. For example, you may be happy to share your diagnosis with your carer, but want to withhold something you feel sensitive about.

You can request the addition of a note to your record to set out your wishes in relation to access to your health and care information. If you have a health and welfare Lasting Power of Attorney (LPA) in place, your LPA representative will be able to make a decision about who your information is shared with in your best interests if you lose the capacity to make this decision yourself.

If you are a carer

As a carer, you have an important role and may have information to share with health and care professionals in order to support the individual you care for. Before you share information about the individual with the health and care team, you should be aware that the individual you are caring for may at some point access their health and care record and may see the information you have shared about them, and your name.

The individual you are caring for needs to give their explicit consent for their confidential information to be shared with you by the health and care professionals working with them. The individual can decide how much information they would like to share with you.

Health and care professionals will work with you to ensure that you have sufficient information to allow you to care for the individual safely. This may be more general advice rather than sensitive information about the individual, to respect the individual's preferences.

If you are experiencing difficulties caring for someone because you do not have the information you need, you can discuss this with the team providing care to the individual. Health and care professionals can explain to the individual the benefits of sharing information with you, however, any decision not to share will need to be respected.

If the individual lacks capacity to give consent, then information may be shared with you if the health and care team considers it in the individual’s best interests. They will share only the information which is needed to continue providing care. Information sharing can also be authorised by someone who has been appointed as a health and welfare Lasting Power of Attorney (LPA) for the individual receiving care. If you know that a health and welfare LPA exists for the individual you are caring for, please inform the health and care professionals involved in their care at the earliest possible opportunity. If you are appointed as the health and welfare LPA, then you will have access to the record.


Guidance for healthcare workers

Unpaid carers can contribute significantly to a patient or service user’s care and therefore it is important that you listen to them.

You should obtain a patient or service user’s explicit consent before involving a carer in discussions about their care. This can be discussed when you first make contact with the patient or service user and their carer. The fact the discussion has taken place, as well as the decision made, should be noted in the patient or service user’s record. Consent does not need to be requested every time you share information. You should use your professional judgement to decide if you need to check whether the patient or service user’s decision has changed or may not extend to all information. For example, if you are considering sharing more sensitive information than has previously been shared with the carer.

General advice and information about conditions can be shared with the carer as long as this does not disclose the patient or service user’s diagnosis or enable the carer to infer the diagnosis where it is not already known, unless the patient or service user has consented to this.

If an individual has capacity and gives their consent to share information with their carer, you should be clear about what information they consent to share. For example, they may only want relevant information to be shared on a need to know basis, or they may want their carer to have full access to their record.

If a patient or service user does not consent to share their information with their carer, you should explain the implications to them. The patient or service user may, for example, be willing to share some information with their carer to support their discharge from hospital on the condition that more sensitive information is withheld. The patient or service user’s decision should be respected even if it may impact upon their care. The exception to this is where you feel there may be a risk of serious harm to others if you do not share specific information. For example, if there was a risk the patient or service user could be violent to their carer or others. If you are concerned, you should escalate it, for example to your multi-disciplinary team, Caldicott Guardian or senior staff. This will help you make a decision on exactly what information can be shared.

If the patient or service user lacks capacity to give consent, consent should be sought from the person who holds a health and welfare lasting power of attorney (LPA) on their behalf. In some cases this will be the carer themselves. You should respect the wishes of the LPA holder provided they are not obviously in conflict with the patient or service user’s best interests.

If no one holds a health and welfare LPA for the patient or service user, you will need to consider what information should be shared with relatives and carers. Information should be shared where relevant to ensure an informed discussion can take place around care decisions, provided it is in the patient or service user’s best interests. Further information on sharing information where an individual lacks capacity is available in the General Medical Council’s guidance on Confidentiality: good practice in handling patient information.

Capacity can fluctuate, so any decision to share information in the patient or service user’s best interests must be reviewed on a regular basis. The assessment should focus on the specific decision that needs to be made at the specific time when the decision is required. The BMA has provided a Mental Capacity Act toolkit which provides further information about assessing capacity.

Before information provided by the carer is added to a patient or service user’s health and care record, it is important that the carer understands that the patient or service user may, at some point, access their care record and may become aware of this information and its source. Where information has previously been obtained in confidence from a carer, you will need to speak to your IG team or Caldicott Guardian to decide whether this information should be disclosed to the patient or service user.


Guidance for IG professionals

Carer status is defined in the Care Act 2014: “Carer” means an adult who provides or intends to provide care for another adult (an “adult needing care”). Information frequently needs to be shared with carers to support their care of an individual. Carers can be given general advice to support their caring duties but the patient or service user’s preferences must be respected. If an individual with capacity expresses a preference with regard to the disclosure of their confidential information which limits the care options they can receive, their wishes should still be respected. However, it is important that the implications of this are explained to them, particularly if care options requiring information sharing are being withheld. A patient or service user’s refusal to share information may also be overridden if not sharing information will place another person at risk of serious harm, but you should escalate these cases to your multi-disciplinary team, Caldicott Guardian or senior staff.

Carers are not covered by the Health and Social Care (Safety and Quality) Act 2015 as this applies to health and care organisations who employ staff to deliver care and support. Carers are therefore not covered by the legal duty to share information with other health and care professionals.

Explicit consent must be sought from the individual being cared for to satisfy the common law duty of confidentiality and enable information sharing between health and care professionals and the carer. The consent should specify what information the patient or service user is happy to be shared, for example, only specific information or the full record. The exceptions to this are where there is a risk of serious harm to the carer or others, or if there is a legal direction in place, such as a court order.

Where a patient or service user lacks capacity to give consent, then it would be in the best interests of the individual to keep those who are close to them informed of their general condition and care requirements. You can also give sufficient information to the people close to the patient or service user to help them participate in any discussion of what the patient or service user’s views are likely to have been when any best interests decision is taken. However, information should not be shared if the patient or service user clearly indicated that they wanted it to be withheld at a time when they had capacity. You must also consider other reasons to not share information, such as safeguarding concerns.

Where information is shared with a carer, the principle of data minimisation must be met by only sharing the information that is relevant and necessary. For example, you would not share information about a previous, unrelated illness where a patient or service user has indicated that they are happy for information to be shared to support their care, because it is not relevant to the carer providing support.

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