Information Sharing With Families in Learning Disability Services: Getting Consent, Capacity and Boundaries Right
Information sharing is one of the most sensitive aspects of family and carer involvement. Providers must balance transparency with confidentiality, consent and legal duties. Within family, carer and circle of support involvement, information sharing must align with learning disability service models and pathways to support safe, lawful and person-centred care.
This article explores how providers get information sharing right in day-to-day practice.
Understanding consent and capacity
Information sharing decisions should be grounded in:
• Mental Capacity Act principles
• Individual consent where capacity exists
• Best interests decision-making where it does not
• Least restrictive and proportionate sharing
Assumptions based on family status alone are unsafe and non-compliant.
Operationalising consent in daily delivery
Consent should be:
• Clearly recorded
• Reviewed regularly
• Situation-specific
• Explained in accessible formats
Operational example 1: supporting informed consent
Context: A man with fluctuating capacity wished to control what information was shared with family.
Support approach: Staff used accessible tools to explore preferences.
Day-to-day delivery detail: Consent records were updated monthly and referenced in handovers.
How effectiveness was evidenced: Reduced disputes and increased trust.
Managing disagreements about information access
When families request information that cannot be shared, providers should:
• Explain legal and ethical reasoning
• Offer alternative reassurance
• Document decisions clearly
Operational example 2: handling contested disclosure
Context: A family demanded access to incident records.
Support approach: The provider shared summaries while protecting third-party data.
Day-to-day delivery detail: Legal advice informed responses and timelines were agreed.
How effectiveness was evidenced: Concerns resolved without escalation.
Governance oversight of information sharing
Providers should evidence:
• Training on consent and confidentiality
• Audit of information-sharing decisions
• Escalation routes for complex cases
Operational example 3: organisational learning
Context: Inconsistent practice identified across services.
Support approach: Updated guidance and manager-led workshops.
Day-to-day delivery detail: Spot audits and supervision checks.
How effectiveness was evidenced: Improved compliance and inspection feedback.
Commissioner expectation
Commissioners expect lawful, consistent information sharing that supports trust and safeguards individuals.
Regulator expectation (CQC)
CQC expects providers to respect consent, protect confidentiality and involve families appropriately.
Conclusion
Information sharing done well builds trust; done poorly it creates risk. Providers must lead with clarity, consistency and lawful decision-making.