Guidance

Giving your consent for sharing information

Published 8 May 2026

Applies to England

Introduction

If you are an individual (or their representative) who has been identified as requiring an NHS continuing healthcare (NHS CHC) checklist or full assessment, you may be asked to provide consent for information about your (their) care and treatment to be shared with a third party such as family, friends or representatives. This guidance aims to explain why you may be asked to provide consent to share information with a third party and helps you to decide whether to provide that consent.

There are times when your consent is not required during the NHS continuing healthcare process. For example:

• carrying out an NHS continuing healthcare checklist
• full NHS continuing healthcare assessment or review
• sharing information between health and social care professionals and organisations such as local authorities and care providers

Furthermore, your information will be used for secondary purposes in an anonymised format in patient level data sets to help achieve better patient outcomes, better experience and better use of resources in NHS continuing healthcare.

For more information on how the NHS seeks consent and shares information, see Consent to using and sharing patient information.

For information about consent in an easy read format, see Consent and capacity easy read on the SeeAbility website.

For more information on wider consent within NHS continuing healthcare, see paragraphs 73 to 96 of the National framework for NHS continuing healthcare and NHS-funded nursing care and the Public information leaflet: NHS continuing healthcare and NHS-funded nursing care.

For an easy read version of guidance on NHS continuing healthcare, see the National framework for NHS continuing healthcare and NHS-funded nursing care (easy read).

Definitions used in this guidance

‘Consent’: giving permission or agreement for something to happen.

‘Third party’: for example, a family member, friend or representative of the individual.

‘Responsible professional’: the health or social care professional who is responsible for obtaining consent to share with third parties, normally at the checklist stage of the NHS continuing healthcare assessment process. This could include, for example:

• social workers
• registered nurses
• other clinicians or care managers or social care assistants

‘Representative’: any friend, carer or family member supporting the individual in the process, as well as anyone acting in a more formal capacity, such as someone with a valid and applicable lasting power of attorney (LPA), a court appointed deputy (CAD) or an organisation representing the individual.

Sharing your information with your family, friends or representatives and your rights

You (or your representatives) should be actively involved in the NHS continuing healthcare process, including during assessments and reviews. You can choose to be supported by a third party such as your family, friends or other representatives.

The professionals involved in your care can usually only talk to your family, friends or representatives if you agree and give your consent.

This guide explains the consent requirements, as well as your rights, relating to sharing your information with these third parties as part of the NHS continuing healthcare process.

Why your consent is required and the benefits to you

Normally, the health or social care professionals involved in your care and treatment will not talk to your family, friends and carers or representatives about your care and treatment unless you agree and give consent. This is the case for everyone, even close family members.

Giving family, friends and other representatives information about your care and treatment could make it easier to support you, but this is normally your choice and requires your consent. 

The involvement and contribution of family members, friends or representatives is usually important, meaning that the quality of the NHS continuing healthcare process may be affected if information cannot be shared.

Obtaining your consent to share information with these third parties is often the basis for meeting legal requirements around sharing information.

Giving your consent

At the start of the NHS continuing healthcare process (normally at the checklist stage), a responsible professional should explain the consent process to you and ask whether you agree to share your information with third parties.

The responsible professional should tell you how your health and social care information may be used and shared during the NHS continuing healthcare process. More detailed information is included in How personal information is used and shared during the NHS continuing healthcare process. This should normally be done at the checklist stage by the person completing the checklist.

The checklist is used by a trained health or social care professional to assess whether an individual needs a full assessment for NHS continuing healthcare.

The responsible professional will talk to you about the people you would like to be involved in the process. If you would like to, you can choose one or more family members, friends and/or other representatives. The responsible professional will check that they can share your personal information with the third party and ask for your consent to do so. You can choose to share some or all of your information. You can also choose to share different information with different people.

The responsible professional should support you to understand the implications of consenting and not consenting to sharing information with these third parties. Giving family, friends and other representatives information about your care and treatment could make it easier to support you. Their involvement and contribution to the process is usually important. If information is not shared with them, the quality of the evidence available for assessment may be affected but it is your choice whether you want them involved or not.

The responsible professional will keep a written record of your consent decisions and statement, including:

• if you consent to share your health and social care information with a third party
• if this consent covers all of your health and social care information or if there are any parts that you do not wish to share
• if consent has been given, the responsible professional will also record the details of the people who you have consented to share your information with
• your understanding that you can withdraw or amend this consent at any time by contacting any health or social care professional involved in your care

This information will be recorded, by the responsible professional, on the NHS continuing healthcare consent form.

You have the right to change your mind or withdraw your consent at any stage of the NHS continuing healthcare process. You can do this by contacting any health or social care professional involved in your care.

If you require support to provide consent

The responsible professional will decide whether you need any additional support to participate fully in the consent process. Some additional steps, or support arrangements, may include:

• using an interpreter
• using communication aids such as charts with pictures, symbols, letters or words, joystick, switch and eye gaze
• providing information in an accessible form
• considering your personal and medical or health needs
• involving someone who knows you

When you give consent to share information, you must understand the choices you are making. This is called having capacity to make the decision. The responsible professional will normally decide whether you have the relevant capacity. They will consider things like whether you understand the decisions you are making, the implications of any choices and whether you can remember what you are being told long enough to make the choice and your ability to communicate your decision by any means.

If you do not have the relevant capacity, some of the principles of the Mental Capacity Act 2005 will apply. For more information on the Mental Capacity Act, see the Mental Capacity Act - Social care and support guide.

Lasting power of attorney, court appointed deputies and ‘best interests’ decisions

If the responsible professional thinks you do not have capacity to give consent, someone else will have to make the choice about consent for you. This might be a family member, a friend, or a professional person, like a solicitor. You may also be formally represented by someone with an LPA. The Court of Protection can also decide on someone to make plans and decisions for you called a court appointed deputy (CAD).

Where there is no LPA or CAD with the relevant authority, the responsible professional should make a ‘best interests’ decision. A best interests decision means that the decision must be what is best for you, not anyone else. The best interests decision should consider all the relevant circumstances.

In all cases, the decision maker must consider, among other matters:

• any previously stated wishes of the individual regarding information-sharing (made at a time they had capacity) where reasonably ascertainable
• whether the loss of capacity is temporary or permanent