Good Practice Guidance for working with Children and Families affected by Substance Misuse
Part 4: Sharing Information and Confidentiality
"They need to make sure that everyone that needs to be is informed about cases, so you don't repeat yourself."
(For Scotland's Children)
The 5-year-old child of drug using parents did not attend school for almost one year. The education department knew nothing of the child's existence since the child health surveillance records and other information from the NHS were not passed to education.
The child's existence was picked up by education services by accident, by which stage this 5-year-old child had lost out on one full year of education at a critical developmental stage. During that time she had been living in extremely difficult circumstances and the negative emotional and physical situation of the child was probably exacerbated by her 'invisibility' to services.
For Scotland's Children
1. This section gives advice to agencies on when it is necessary to share personal and confidential information about people using their service with other professionals and how agencies can approach this complex area with greater clarity and confidence.
2. Decisions about when to involve other agencies, when to break confidentiality, when to refer to the Children's Reporter, are difficult and complex. Various factors will come into play - age of child(ren), the degree of risk from one or both parents misuse of substances, whether one or both parents inject, whether there is enough money in the household and support available from family.
"You have to get rid of 'confidentiality'."
Janis - recovering from substance misuse and mother of child in foster care
3. The parent quoted above expressed frustration that refusal of agencies to share information with each other became a barrier to helping herself and her child. All professionals and agencies offering treatment or support are required to keep confidential information given to them during the course of their work. Information given to professionals by their patient, client or service user should not be shared with others without the person's permission, unless the safety of the person or other vulnerable people may otherwise be put at risk. This general principle is enshrined in professional and ethical codes of conduct, and in human rights and data protection legislation, which acknowledge an individual's right to privacy but which also enable the disclosure and sharing of information in appropriate circumstances.
'Integrated Care for Drug Users' 31 has a helpful section on information sharing.
The legal position
4. The Human Rights Act 2000 implements provisions of the European Convention of Human Rights (ECHR). Article 8 of ECHR guarantees respect for a person's private and family life, his home and his correspondence. Disclosure of health-related information would breach that right unless it is in accordance with the law, or necessary for the protection of health. Unless there is a lawful basis for disclosing health information, such as the subject having given consent, compliance with a legal requirement to disclose, or the need to protect life, the information should not be shared.
5. Disclosure of personal information is governed by the Data Protection Act 1998 (DPA). Personal data covers both facts and opinions about a living individual which might identify that person. The provisions of the DPA ensure that personal information held about any individual cannot be used for purposes other than those for which it was originally supplied without the individual's consent. This prevents unauthorised disclosure of a wide range of information.
6. There are several important exceptions to this set out in the DPA and related guidance. These enable data to be disclosed to safeguard national security, to prevent or assist the detection of crime or to protect the vital interests of the person. This last provision is usually interpreted as 'protecting life and limb'. Common law also has a concept of medical confidence, which impacts on capacity to share personal health information. The General Medical Council only allows doctors to share information to prevent or detect a serious crime, i.e. murder, rape or serious assault. Common law enables the disclosure of information where this is necessary to protect a vulnerable person from harm. In some circumstances the police have powers to request professionals to disclose information.
7. People with alcohol- or drugs-related problems may be particularly concerned about their support services sharing information with other professionals. They may fear that they will be denied help, disadvantaged, stigmatised or blamed if other professionals or agencies are given any information about them. This may have been their experience in the past. They may also fear investigation by the police about illegal substance misuse or child protection agencies making enquiries. Contact with these agencies may be stressful even if there is no cause for concern. In most circumstances users of treatment and support agencies can rely on confidentiality as their guiding principle. But there are important exceptions to this.
If there is reasonable professional concern that a child may be at risk of harm this will always override a professional or agency requirement to keep information confidential. All service providers have a responsibility to act to make sure that a child whose safety or welfare may be at risk is protected from harm. They should always tell parents this.
Confidentiality in practice
8. Confidentiality is an important factor in enabling service users to engage confidently and honestly with treatment and support agencies and this is an essential requirement for successful rehabilitation. All agencies should respect the need for other professionals and agencies to protect their relationship with their primary client and support the requirement to maintain confidentiality as far as possible. Sometimes professionals will need to share specific information with staff in their agency or other professionals in order to provide treatment or other forms of help. Where it is necessary to obtain informed consent, this should be obtained before sharing information.
9. Agencies should tell service users about the kinds of situations where they may have to share information. For example, a prescribing GP may need to discuss his or her patient's progress with a Community Psychiatric Nurse in a community drugs service, before adjusting a prescription. Agencies and services should give some indication of why, and with whom, they may need to share information and ask for their clients' consent to sharing necessary information in advance. This will save time, misunderstandings and potential conflict later. Local agencies, with help from their local Drug and/or Alcohol Action Team, should consider preparing a common proforma for obtaining informed consent at initial contact with supporting information for service users to supplement verbal information given by staff.
Forth Valley Substance Action Team have developed a common screening and referral form. The form has a section for recording client consent to information from their case file being shared and the option to withdraw this consent. Also, at the end of the form the client gives signed acceptance to support for their substance use and, as part of this, inter-agency information sharing.
10. If there are worries about a child's care, development or welfare, professionals in touch with the family must co-operate to enable proper assessment of the child's circumstances, provide any support needed and take action to reduce risk to the child. This will normally require them to share relevant information. Guidance from professional bodies emphasises that the child's welfare is the paramount consideration when deciding what they should do in such circumstances.
'Personal information about children and families given to professionals is confidential and should be disclosed only for the purposes of protecting children. Nevertheless the need to ensure proper protection for children requires that agencies share information promptly and effectively when necessary. Ethical and statutory codes for each agency identify those circumstances in which information held by one professional group may be shared with others to protect the child.'
Protecting Children - guidance on inter-agency co-operation for health professionals - p.28
The Scottish Executive, 2000
11. Nursery and school staff and teachers are particularly well placed to observe physical or psychological changes in a child that may signal emerging problems within their family. Children may confide in their teacher about their parents' substance misuse. Children may offer information about parental substance misuse in confidence. The recipient should try as far as possible to retain children's trust by explaining the need to act to protect the child, who else will be told about the problem and what is likely to happen next. They must pass the information on to the designated member of staff in the school with responsibility for child protection, who will liaise with other relevant staff and agencies as needed.
12. All agencies working with problem alcohol or drug users should have in place a child protection policy which makes clear how issues of confidentiality are to be managed.
What kind of information?
13. Agencies working with adults, families, children and young people will gather a great deal of information of different kinds. Not all information gathered or held by a professional or agency will be confidential although all personal health information is 'sensitive' under the Data Protection Act. The following are examples - by no means exhaustive - of the kinds of information to which professionals will have access:
- information may be held by several different agencies - such as a family's address, family members' dates of birth, who lives in a household, details of children's schooling, a child's status on the Child Protection Register
- information may be held by one agency - such as previous convictions (stored by the police and Disclosure Scotland), or details of response to a period of supervision under a probation order, amounts of drugs prescribed, details of injuries to a child, or allegations of assault
- information may be in the public domain - examples include court appearances or criminal convictions reported in the local paper, names and addresses on the electoral roll
- the fact that a person is in touch with an agency may be sensitive information in some circumstances; for example an addiction treatment agency may be reluctant to confirm that someone is using their service unless the need to provide such information overrides confidentiality
- information may be personal - such as details of a parent's childhood history, personal and sexual relationships, how drugs are obtained and from where, information about incidents of domestic abuse, previous treatment, alcohol use, or employment history
- other agencies may ask for a professional assessment or opinion to help them decide how they may help.
14. Any or all of these kinds of information may be relevant when assessing whether a child is safe and well-cared for in a family where the parent(s) may use illegal drugs or other substances.
Asking for, and giving, information
"The amount of information drugs or mental health workers felt able to share varied, and was sometimes dependent on agreement with patients."
(Scottish Executive 2002) (c)
15. When any professional or agency approaches another to ask for information they should be able to explain:
- what kind of information they need
- why they need it
- what they will do with the information
- who else may need to be informed, if concerns about a child persist.
It is not helpful to contact another professional and ask for everything they know about Family X, because you are worried about Child A. If you are not sure what kind of information the other agency may have or what you might need to know, you should explain your task so that the other person may better understand how they may help.
16. If a professional or agency is asked to provide information they should never refuse solely on the basis that all information held by the agency is confidential. On receiving answers to the above questions they should consider:
- whether there is any perceived risk to a child which would warrant breaking confidentiality
- what information the service user has already given permission to share with other professionals
- whether they have relevant information to contribute - that is information which has or may have a bearing on the issue of risk to a child or others, which enable another professional to offer appropriate help, assist access to other services, or take any other action necessary to reduce the risk to the child
- whether that information is confidential, already in the public domain or could be better provided by another professional or agency, or the parent directly
- how much information needs to be shared to reduce risk to the child
- whether disclosure would be permanent in accordance with the Data Protection Act 1998.
17. If the professional is uncertain about what information they may share, they should seek advice from a senior staff member in their agency with responsibility for child protection. Each NHS Board and Trust should have a 'Caldicott Guardian' who is responsible for the way the organisation handles and protects patient identifiable information. If none is available, they should seek advice from one of the agencies responsible for child protection enquiries; the social work service, the Reporter or the police. The professional should consider carefully all potential consequences for the child's welfare before making a final decision about whether or not to provide information asked for. S/he should record the information which has been shared, with whom and the reasons for the decision carefully. The professional or agency may subsequently have to justify their disclosure, or refusal to share relevant information, to a court, children's hearing, professional body or other forum.
18. When a professional refers a child or family to another agency for help, or provides information to assist child protection enquiries it is good practice to confirm in writing any information given verbally. Where child protection agencies have referred a child to the Reporter, or a children's hearing, or where court proceedings are necessary, written information may be essential and may be submitted to a Sheriff as evidence.
A young woman with a history of injecting heroin has recently begun an oral methadone substitution programme, supported by a drugs counselling agency. She has one child who is now 18 months old. A social worker from the Child Protection Team telephones the agency to ask whether it can supply any relevant information for a case conference shortly to be held to consider whether the child may be at risk. The woman has not given her consent to the drug agency discussing her circumstances with the Social Work Department.
The woman's keyworker at the drug agency had heard there were worries about the child some time ago. Other workers have raised concerns about things that the woman has let slip. Other clients have mentioned that the mother has left her child in the care of other substance misusers for long periods. This contact from the Child Protection Team brings matters to a head. Two workers from the drug agency visit the family at home and become worried about what they see. The flat is very dirty, and they see evidence of needle use. The woman expects her keyworker to 'stand up for her' at the case conference.
- information from a number of sources indicates that the parent may be having difficulties that could put her child at risk; agencies have a shared responsibility to act to protect the child and need to work together to assess the family's circumstances, needs and risk, plan appropriate supports and take any necessary action to reduce risk
- on this basis, the drugs agency keyworker and the social worker need to share with each other relevant information about their respective concerns
- they should consider a joint visit or appointment with their client for an honest discussion of their worries about the child, and the respective roles of each in supporting the woman and her child
- an inter-agency assessment of the needs of each family member (including the child's father) and any potential risk to the child is needed, before, or as soon as possible after, the conference; this should explore arrangements for the care of the child and the range of supports available to the family from relatives or friends
- when a case conference is called, the health visitor or primary care team should provide an up-to-date assessment of the child's health and development; this should consider whether the child is reaching appropriate milestones and whether paediatric assessment or other specialist input may be needed
- a written plan for care and support to the family should be agreed by the agencies, setting out the role and tasks of different agencies, with one worker designated to co-ordinate the plan; this will be a child protection plan if the child is placed on the local Child Protection Register
- the social worker should agree with the parent and other agencies a period within which significant improvement in the child's circumstances should be achieved
- the drugs agency and the social worker should discuss with the parent what information they will continue to share, and how.
What to say to families when sharing information without consent
"It's important for people to be honest - we need to be told what the limits are."
Dan - father on methadone substitution programme
19. When concerns about children's safety or welfare require a professional or agency to share confidential information without the person's consent, they should tell the person that they intend to do so, unless this may place the child, or others, at greater risk of harm. They should also tell them what information and to whom that information will be disclosed. Each agency should make clear to people using their service that the welfare and protection of children is the most important consideration when deciding whether or not to share information with others. No agency can guarantee absolute confidentiality as both statute and common law accept that information may be shared in some circumstances. The Confidentiality and Security Advisory Group for Scotland's recent report 'Protecting Patient Confidentiality' 32 advises that: 'The concept of processing and sharing information without consent to protect the vital interests of a patient or patients has been widely accepted. An example would be where a health professional is concerned that a child or vulnerable adult may be at risk of abuse. Professionals who have such concerns would be expected to draw the attention of the relevant authorities.' Agencies beginning work with families affected by illegal or other forms of substance misuse should explain carefully their policy on information-sharing and confidentiality, and help parents and, where appropriate, children and young people, understand under what circumstances information may have to be shared with others without their consent.
"I found it much easier to talk to my health visitor, after she told me how she could help me and the kids. I don't worry so much about them being taken into care. I've started to be honest about my level of drinking."
Sandra - a drinking mum
Fostering good communication between agencies
20. Under the auspices of the local Drug and/or Alcohol Action Team and Child Protection Committee, agencies working with families in which parents misuse substances should agree local protocols setting out the responsibilities of different agencies and practitioners in sharing information and working together effectively when parents' substance misuse may put their children's safety and welfare at risk (see Part 6). In all cases, risks and benefits must be determined individually.
Highland Drug and Alcohol Action Team - Protocol on Information Sharing
The Highland Drug and Alcohol Action Team's goal is 'to enable individuals, families and communities in the Highlands to minimise the harmful use and effects of drugs and alcohol'. To help achieve this, the partners within the Action Team (who include: police, health, social work, Scottish Prison Service) have agreed a joint information sharing protocol to:
- share general information, and where appropriate confidential information, regarding the misuse of drugs, having due regard to the law, human rights and data protection
The protocol is designed to ensure that the relevant statutory agencies and others as appropriate have effective co-operative working arrangements in place to address issues that arise from substance misuse.
21. Regular communication and co-operation between these agencies and professionals will help them develop appropriate and well co-ordinated care plans for their clients, whether these are children or adults. Alcohol and drugs agencies should seek parents' consent to pass new information that may have a bearing on how well parents are coping to agencies supporting the child so that they can make proper assessment of the family's needs. Where such information indicates that a child may be at risk of significant harm, they should seek advice from agencies responsible for child protection (see Part 3). In turn, agencies working with children should inform agencies supporting the adult(s) in a family when there is a social worker, or keyworker, involved and what contact they are having with the family. Any care plans should include the respective roles of different practitioners. Service users should be given copies of care plans or equivalent information in writing about what the agencies' plans are and how these will be carried out. Agencies should review their care or treatment plans regularly with other agencies and with the parents and, where appropriate, children and young people, usually by bringing them together in inter-agency meetings.
22. All professionals and agencies should keep clear, legible and up-to-date records of:
- contact with parents and children;
- information held and consents on information sharing;
- the assessment, care plan and any changes as a result of reviews of these;
- contact with other agencies, including the date and content of information shared or discussions held.
23. Records should be dated and should identify the person recording the information. Agencies should comply with the principles of data protection legislation and guidance.
While the principles and protocols for information sharing have been addressed by the Confidentiality and Security Advisory Group (CSAGS) and its sub-group on information sharing, work on developing the technology to support information sharing is going forward within the Modernising Government Fund (MGF) sponsored eCARE programme.
This programme is intended to provide a generic standard framework for information sharing between health and social care organisations, across Scotland, which could offer opportunities to support integrated drugs services.