GETTING OUR PRIORITIES RIGHT (GOPR)

Appendix 1

Information on Consent to Share Information

Who can give consent?

Children Under the Age of Twelve

Where the subject is a child under the age of twelve, consent for information sharing should sought from a parent or guardian. However, the child has a right to be kept informed and to participate in the process if possible. In circumstances where the practitioner considers a child under twelve to have the capacity to understand informed consent, and where there is difficulty in relationships with parents/carers, a request by the child that consent should not be sought from parents/carers should be respected wherever possible.

Children From the Age of Twelve

Children from the age of 12 are presumed to have the full mental capacity to give informed consent and to take decisions in their own right. Children aged 12-15 years are presumed to have a sufficient level of understanding of the nature of consent and its consequences and practitioners should seek their consent. However, if this is not the case, practitioners should seek consent from the parent or person with legal authority to act on behalf of the child/young person.

Children From Sixteen to Eighteen

Parental rights and responsibilities largely cease when a child is aged 16. The exception to this is a parent's responsibility to continue to provide guidance to their child from age 16 to 18. In these circumstances, practitioners should seek to keep parents/guardians involved in issues affecting their children, but only to the extent that this is compatible with the rights and autonomous choices of the young person.

How to ask for, obtain and record consent

Where a practitioner decides it is appropriate to seek consent to information sharing, he/she needs to make sure that consent is given on an informed basis by explaining:-

• the purpose for which information is to be shared;
• what information is to be shared; and
• with whom it is to be shared.

Practitioners need to seek the consent of the service user to share their information when seeing them for the first time or when he/she decides that another practitioner, service and/or agency's input are required.

Best practice would suggest that service users are provided with information and advice leaflets on information sharing which are clear, accurate and concise. Practitioners should explain the contents of these information and advice leaflets and ensure service users understand them.

What about verbal permission?

Whilst verbal permission to share is an acceptable practice in certain circumstances, this should be followed up by obtaining written consent. The service user should be advised in writing that their verbal consent has been recorded as given.

Practitioners should record in the individual's case notes and/or on the service and/or agency's electronic system the following information:-

• the purpose of sharing information;
• what information is to be shared;
• with whom the information is being shared; and
• that consent, including the type of consent, has been given and the date given.

The concept of sharing consent should be reciprocal between practitioners, services and/or agencies, e.g. if health and social work are working together, either one can obtain consent to share information between both and on behalf of both organisations for a particular purpose.

What if consent to information sharing is refused?

In some cases, the service user may refuse to give consent. If consent is refused then, unless there are other factors about the service user's ability to understand the implications of refusal, or risk exists, in the first instance the service user's right to refuse must be accepted and noted.

Where doubt about the service user's understanding or risks exists, practitioners should weigh the balance between service user's right to privacy and their or others safety/well-being. In these latter circumstances, practitioners should consider whether there remains a need and justification to share without consent, despite permission to share being withheld.

The following indicators may override the refusal to share:-

• failure to share information appropriately may constitute a serious breach of the duty of care;
• sharing information without consent may be necessary and appropriate under some circumstances; such as:-
  • when a service user is believed to have been abused or at risk of significant harm;
  • when there is evidence of serious public harm or risk of significant harm to others;
  • where there is evidence of a serious health risk to the service user;
  • for the prevention, detection or prosecution of serious crime;
  • when instructed to do so by the court;
  • where there is a statutory requirement, e.g. where information is required by a Children's Reporter as part of their investigation of a child referred to them.

If an individual refuses to give their consent to their information or that of their child being shared, practitioners should explain the consequences of not sharing information to them. For example, a service from social work cannot be provided, on request from a health practitioner unless information is shared between the two agencies so that social work staff understand the person's needs and how to meet these.

If a practitioner decides to ignore a service user/parent's refusal to agree to information being shared, he/she need to record this in the individual's case file indicating:-

• why information was shared;
• what information was shared; and
• with whom the information was shared.

A decision to agree not to share information with other agencies if consent to share is refused also needs to be recorded; the practitioner should discuss with their Line Manager/Supervisor and have the decision endorsed. In some circumstances failure to share may result in serious consequences for the practitioner.

It is important that the basis for information sharing or not sharing information is recorded and noted in the case file notes/electronic file and that the service user is informed of the decision. Anyone who receives information, which has been shared without consent, should be made aware of this and the basis on which the decision was made to share the information.

What if consent is withdrawn?

Individuals have the right to withdraw consent for information sharing. If an individual withdraws their consent to sharing their information, the considerations about sharing without consent still apply. In these circumstances, the practitioner needs to:-

• fully explain the consequences to the individual;
• advise their Line Manager/Supervisor;
• record the decision in the case notes; and
• advise any other service and/or agency receiving information that consent has been withdrawn and that they should cease processing the information from that point onwards.

An individual cannot withdraw consent retrospectively. If wrong information has been shared the individual has the right to ask for wrong information to be corrected. The receiving service and/or agency should be notified accordingly and the information should be corrected.

What if someone is unable to provide informed consent?

If an individual cannot give consent to share information the practitioner should ask the following four basic questions:-

1. Does the person (including children aged 12-15) understand the nature of consent and its consequences?

2. Is there a legitimate need to share information?

3. Will failure to share mean that assistance and support will not be provided?

4. Will the child or young person be at risk?

The practitioner should discuss sharing without the individual's consent with a relevant, e.g. a parent/carer, named person, GP etc. Reference to a third party should apply so long as it does not leave the individual at risk while debating the issue; serious concerns about a child's well-being would override the withholding of consent.

Where an adult or child is deemed not to have capacity, the practitioner should record in the individual's case file notes/electronic record:-

• why the decision was made;
• who was involved;
• the purpose of sharing the information;
• What information was shared, with whom and the date.

Practitioners should inform the recipient of the information on what basis the decision to share information was made. Practitioners should endeavour to ensure that anyone lacking capacity to consent to share their information understands the implications of their information being shared. In addition any parent or primary carer should also be informed unless this might place the child, young person or adult at greater risk e.g. the parent or carer is a factor in such concerns.

What about sharing information without seeking consent, or overriding a refusal to share information about a child or adult at risk of harm?

In general, information will normally only be shared with consent or where the refusal to consent has been over-ridden by concerns about possible harm to a child. However, where there are concerns that seeking consent would increase the risk to a child or others or prejudice any subsequent investigation, information may need to be shared without consent.

The decision to share information without consent can be a difficult one and can pose challenges for staff whose primary involvement is with a member of a family or extended family and a concern is raised about another family member. Practitioners should make an assessment of the risk of significant harm and whether the risk is greater than any breach of privacy, which sharing information about the person may pose.

What about sharing information pre-birth?

Sharing information about an unborn child presents additional challenges. Practitioners should involve parents-to-be in decisions about sharing information, unless this would increase the risks to the unborn child.

Practitioners caring for a pregnant woman should always consider if the unborn child may be endangered by the adult's condition, behaviour or lifestyle. This includes sharing information prior to the birth of a child to ensure planning as necessary during the pregnancy to inform protective planning from the moment of birth. Where there is a concern about the foetal development and its impact on the child when born or the mother's state of well-being, practitioners should try to secure consent from the mother to share data as necessary.

If the pregnant woman refuses to give permission for data sharing, and there are concerns about the well-being of the unborn child, an assessment should be carried out to decide whether data should be shared. The well-being of the unborn child will always be the paramount consideration. If a decision is taken to share data about an unborn child without consent, the pregnant woman should be informed. In all instances, the decision not to share information does not rest with one practitioner.

The decision process together with why, what, when and with whom the information has been shared should be recorded in the individual's case file notes and/or the service and/or agency's electronic system. The recipient of the information should be informed of why it was decided to share the information.