Consent and Choice

Where an adult has mental capacity in relation to the relevant decisions, any proposed intervention or action must be with the person’s consent, except in the public interest where other people are affected or circumstances where a local authority or agency exercises their statutory duties or powers. (Appendix 2 Legislation).

If the individual refuses to participate or engage with agencies or provide access, information obtained from a range of other sources may ‘hold the key’ to achieving access or to determining levels of risk.

Where a self-neglecting individual chooses not to accept a positive change to their circumstances, professionals working with them have a responsibility to explore that choice through respectful challenge and tactfully expressing concerned curiosity. Professionals need to explore the extent to which “choice” is in fact chosen, taking into account potential contributory factors to the individual’s situation which may shed light on their resistance. Examples could be undue influence by a third party being the reason that an individual declines intervention, a deep-seated fear of going into a hospital, or where the fear of losing one’s pet(s) stops someone from accepting intervention.

The Care and Support statutory guidance (Care Act 2014) states that it is crucial to work alongside the person, understanding how their past experiences influence current behaviour. This is often referred to as trauma informed practice.

In the most high-risk, intractable cases where an adult has been identified as potentially self-neglecting, is refusing support, and in doing so is placing themselves or others at risk of significant harm, a referral should be made as outlined in the self-neglect pathway.

An adult at risk with no disturbance or impairment in the functioning of the mind may be entitled to the protection of the Inherent Jurisdiction of the High Court if he/she is reasonably believed to be, incapacitated from making the relevant decision by reason of such things as constraint, coercion, undue influence or other factors such as mental disorder or mental illness. They may also be reasonably believed to be, for some reason, deprived of the capacity to make the relevant decision, or disabled from making or expressing a free choice or genuine consent.

Decisions about what information is shared and with whom should be taken on a case-by-case basis. But whether or not information is shared, with or without the adult's consent, the information should be:

Necessary for the purpose for which it is being shared
Shared only with those who have a need for it
Accurate and up to date
Shared in a timely fashion
Shared accurately
Shared securely

In some instances, the individual will not have the capacity to consent to disclosure of personal information relating to them. Where this is the case any disclosure of information needs to be considered against the conditions set out in the Data Protection Act and must be in their Best Interests as per the Mental Capacity Act.

The identified lead agency coordinates information gathering and determines the most appropriate actions to address the concerns. The key principles of information sharing and confidentiality are laid out in the Care Act Guidance section (14.15) which outlines the importance of obtaining informed consent, but if this is not possible and other adults are at risk of abuse or neglect, it may be necessary to override the requirement; and it is inappropriate for agencies to give assurances of absolute confidentiality in cases where there are concerns about abuse, particularly in those situations when other adults may be at risk.

Where an adult has refused to consent to information being disclosed (section 14.15) or consent cannot be established for these purposes, then practitioners must consider whether there is an overriding public interest that would justify information sharing (e.g. because there is a risk that others are at risk of serious harm).

In certain circumstances, it will be necessary to exchange or disclose personal information which will need to be in accordance with the law on confidentiality and the Data Protection Act 1998 where this applies. The Home Office and the Office of the Information Commissioner have issued general guidance on the preparation and use of information. Information sharing within these procedures should be in line with the principle of information sharing contained in the Care Act Guidance10 which will ensure information gathered at this stage is to inform:

Decision making regarding whether further multi-agency information sharing is required;
The completion of an initial Risk Assessment and ensuring any urgent actions are carried out.

Where there are concerns about the individual’s ability to make informed decisions due to a mental disorder or ill health, consideration must be given to carrying out a Mental Capacity Assessment in relation to any decisions they may need to be made regarding their safety or the safety of others.

Information gathering will aim to build an understanding of:

Any previous successful engagement with the individual.
Approaches that appeared to disengage the individual.
An insight into the individual’s wishes and feelings including previous wishes or life experiences that may inform a Best Interests decision.
The views of anyone who has or has had contact with the individual including relatives and neighbours.

When working with individuals who may be reluctant to communicate, the risk of miscommunication between agencies is greater than usual. It is important to ensure that all relevant information is available to those who undertake any assessments. Use information available on any previous successful engagement with the individual to facilitate direct communication with the individual if possible. This should be appropriate to the persons’ needs such as making use of interpreters for those who speak English as a second language or British Sign Language signers when required. This should ensure that the assessment will inform any actions to be taken and include the wishes and feelings of the individual. The following key principles must be applied.

Balancing individuals’ rights and agencies’ duties and responsibilities. All individuals have the right to take risks and to live their lives as they choose. These rights including the right to privacy will be respected and weighed when considering duties and responsibilities towards them.

They will not be overridden other than where it is clear that the consequence would be seriously detrimental to their, or another person’s health and wellbeing and where it is lawful to do so with the least restrictive option. The case record will include a complete and up to date summary record of the efforts and actions taken by all other agencies involved. Individual agencies will also need to keep their own records of their specific involvement. Accurate records that demonstrate adherence to this document and locally agreed case recording Policy and Operational Guidance must be maintained.