1. Care Record Development Board Your Care, Your Record Thursday 23 rd November 2006 Helping us assess the draft Children’s Care Record Guarantees Dr David C Low Dr Michael Wilks Dr Morris Zwi

2. Care Record Development Board Your Care, Your Record Thursday 23 rd November 2006 April 2005 Revised April 2006

3. Care Record Development Board Your Care, Your Record Thursday 23 rd November 2006 Care Record Guarantee - Format Introduction NHS Care Records Service Our 12 commitments to you –When we might use or share information that names you without asking you? Six things you can do in return Plans for the future

4. Care Record Development Board Your Care, Your Record Thursday 23 rd November 2006 CRDB issues - What is different? Childrens Working Group Chair Sheila Shribman Definitions –Child –Parent Confidentiality Who has right of access and to what? When is a child competent? When to use or share information? –Safeguarding children

5. Care Record Development Board Your Care, Your Record Thursday 23 rd November 2006 CRDB issues Care Record Guarantees about children Adult with Parental Responsibility & Gillick competent child Child 12+ Child 7-10 Same Format

6. Care Record Development Board Your Care, Your Record Thursday 23 rd November 2006 Definition of a Child A child is defined in English Law as a young person who has not yet reached their 18th birthday. In health care children can legally give their permission to investigations or treatment when they reach the age of 16. The law accepts that children may have the ability, or capacity to perform certain tasks, such as accessing records and allowing information to be shared irrespective of their age. This is provided they fully understand what is involved and what the outcome will be for themselves and their families i.e. they have “Gillick competence”

7. Care Record Development Board Your Care, Your Record Thursday 23 rd November 2006 Definition of a Child It is recognised that children should be encouraged to develop such capacity Even if children are not “Gillick competent” they still have the right to information about their care, in a form that they can understand.

8. Care Record Development Board Your Care, Your Record Thursday 23 rd November 2006 Parents Defining a “parent” is not as simple as it might seem! Mothers, married fathers and adoptive parents have “parental responsibility [as defined by law] which includes the right to make decisions about their child’s healthcare and access to records. Unmarried fathers may or may not have “parental responsibility “depending on their legal status In other circumstances this right may be exercised by others such as local authorities

9. Care Record Development Board Your Care, Your Record Thursday 23 rd November 2006 Who has right of access? Wicked questions –When does a child have the right to see information about themselves instead of, or as well as, the parent? –What aspects of the record can a child or adult keep confidential from each other? Supporting Information –Balance between rights of the child and responsibilities of the parent –Should a child/young person see information in their records about their family? –Recommended good practice to involve the carers or families of young people wherever possible –Conflict resolution may be time consuming and prolonged and is dependent on trust

10. Care Record Development Board Your Care, Your Record Thursday 23 rd November 2006 Competency? Wicked Questions –When is a child competent to access their own health care records? –How do you know if a child or young person is competent to access their own record? Supporting Information –What is Competency - "sufficient understanding and intelligence to enable full understanding and therefore the capacity to consent " –How do you know someone is competent - age not a good assessor –Recommended good practice to involve the carers or families of young people wherever possible –At what age could children and young people have their own "Health space"

11. Care Record Development Board Your Care, Your Record Thursday 23 rd November 2006 Information Sharing Wicked questions –When should a child’s health information be shared? –What information should be shared? Supporting Information –The welfare [physical and emotional] of the child is paramount –Relevant, "need to know basis " and within legal framework –Legal framework confusing for children and young people as well as professionals –Must gain consent from young person wherever possible unless contraindicated - ask the child –Conflict between safety and welfare of the child and confidentiality –Enquiries into child protection cases suggest failure to share early "niggling worries" may have serious consequences for the child

12. Care Record Development Board Your Care, Your Record Thursday 23 rd November 2006 Group 1: Adults with Parental Responsibility Do you think that this Care Record Guarantee would reassure you as a parent, child or practitioner about any concerns that you may have about –Information sharing –Confidentiality –A child’s access to its own health records When should parents and/or children and/or young people be introduced to their version of the guarantee and by whom?

13. Care Record Development Board Your Care, Your Record Thursday 23 rd November 2006 Groups 2 and 3: 12 years+ & 7 years+ Do you think that this Care Record Guarantee would reassure you as a parent, child or practitioner about any concerns that you may have about –Information sharing –Confidentiality –A child’s access to its own health records When should parents and young people be introduced to their version of the guarantee and by whom? Would young people be interested/understand their version of the Care Record Guarantee?