Disclaimer: These notes are for guidance only. We cannot be held responsible for any action taken as a direct result of information contained herewith. we would always recommend that expert legal advice is sought. Please see our introduction page for more information.

Introduction

Whilst any decision to share personal, sensitive or confidential information requires careful assessment of legal, professional and public interest considerations, there are certain categories of patient/client where this needs even greater thought. Outlined below are some examples of two groups where this applies.

Children and Young People

Sharing of information regarding children and young people merits additional consideration for three reasons:

• The legal age by which children/young people can give consent to disclosure of their personal or sensitive personal data and assessment of capacity to do so
• Child Protection issues and the higher degree of vulnerability of children if information is disclosed incorrectly
• The greater sensitivities young people have about their private lives and information about them

Assessment of the Capacity for Young People to be able to Give Informed Consent

The ability to give consent is a complex issue and can vary from time to time and from issue to issue, i.e. a person assessed as being incapable of giving consent for one matter could be assessed as being capable to give consent to another matter at the same time.

Although primarily concerned with the issues regarding consent for treatment, the Department of Health Guidance “ Seeking Consent: Working with Children” gives good guidance on who can give consent and the differences between children under the age of 16 and those aged 16 or 17. The guidance also sets out some clear parameters regarding capacity to make decisions, which would also include decisions on disclosure of information. Children aged 16-17 should always be assumed to be capable of giving consent on their own behalf unless they are unable to comprehend and retain information material to the decision, and to weigh that information in any decision.

Seeking Consent: Working with Children” also sets out the circumstances in which someone with ‘parental responsibility’ for a child may give consent on the child’s behalf. If a young person is not felt to be capable of making a decision, a person with parental responsibility may make that decision on their behalf (although the child should still be involved in the process). A child under 16 may be considered capable of giving consent if s/he has “sufficient understanding and intelligence to enable him or her to understand fully what is proposed.” Capacity should be assessed for each separate decision being sought, and no blanket view on capacity can be assumed.

Seeking Consent: Working with People in Prison” also makes clear that detention in prison does not in itself prevent a person with parental responsibility giving consent for their child. This document also provides excellent guidance on how health workers can assess capacity.

Child Safeguarding and Protection Measures

Whilst a high degree of care should be taken with all personal and sensitive information, particular care should be taken over that applicable to children and young people. Inappropriate disclosure could have catastrophic effects if, say, a child’s confidences on alleged abuse were inadvertently disclosed to an abusing parent or that an underage girl had sought contraceptive services from a community clinic despite the religious objections of her parents.

In addition, some of the confidentiality factors regarding the personal and sensitive data of individuals may be over-ruled by requirement to disclose under the ‘The Protection of Children Act 1999’ if they are not felt to be suitable to work with children and young people.

A number of guidance documents are available that add to the considerations already given in other sections of this document including the RCGP publication ‘The GP, the child and Information Sharing’, 'Sharing personal information in the context of domestic violence’ and particularly Appendix 1 on Information Sharing from ‘What to do if you’re worried a child is being abused’

To help all children and young people involved with the justice system or in secure hospital settings achieve the five ‘Every Child Matters’ outcomes (Every Child Matters - Home Office 2004) will require active sharing of information between organisations. Once national guidance is published (September 2005) Local Authorities will be establishing databases containing information relevant to the welfare of children in their geographical area. However, as children involved in the CJS or in secure NHS placement may be located away from their home, considerable effort will be needed to ensure that information follows them and is appropriately shared in a timely fashion.

The  Children Act 2004 provides enabling legislation and a legal framework to allow establishment of secure children’s index/indexes at national or local levels and an example can be found at Section 12 of the Act. The Department for Education and Skills, as lead Government department, has established an Information Sharing and Assessment website that provides broad guidance on information sharing and links to other useful sites. The list of organisations and individuals who may be required to contribute to the indexes given at Section 11 of the Act includes NHS Trusts, Primary Care Trusts, Prisons and Youth Offending Teams.

Of particular importance for Youth Offending Teams, Secure Children’s Homes and Young Offender Institutions are the Youth Justice Board National Standards, including those for improving information sharing and exchange which are contractual obligations alongside their organisations own standards. For the Prison Service, Prison Service Orders (PSO) 4950 and 9020 set out the Performance Standards expected for managing information and for working with young people detained in YOIs

People without Permanent Homes

This group includes travellers, asylum seekers, illegal immigrants, homeless and roofless people and others who are characterized by a transient lifestyle and possibly have greater difficulties communicating with service providers. Access to their medical histories may be harder to come by and accessing services may not follow usual patterns. If they are suspected of or have committed an offence and/or are suffering from a mental illness then they may be even more vulnerable than offenders/patients from the indigenous community.

As originally obtaining information on this group may be more difficult and the overall communications between the professional and the client harder, it is important that any information obtained is communicated effectively where this is appropriate.

Although there is no specific guidance solely regarding information management and sharing for this group, a number of publications will be of use giving background details.