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Effective Interventions Unit - Young people with, or at risk of developing, problematic substance misuse: A guide to assessment
Chapter 8: Information Sharing
One of the most important elements of effective assessment is the
sharing of information with young people and with other individuals involved in the assessment. The evidence shows that that there are deficiencies in information sharing. This is a key area for action if the assessment process is to be effective for young people and lead to the appropriate and relevant treatment, care and support.
Why is information sharing important?
For the client, poor information sharing can result, for example, in delays in getting access to treatment, care and support, or referral on to inappropriate provision. This, in turn, can lead to disillusionment and non-attendance, or drop out from services. (EIU 2003, 2002). Understandably, however, agencies and service providers have concerns about how the information sharing process will work and how confidentiality will be handled. 'Integrated Care for Drug Users' emphasises commitment from partner agencies to the
sharing and safeguarding of client information as essential to the provision of optimum treatment, care and support for individuals.
Some of the current issues in information sharing
One of the key issues is how to decide
what information needs to be passed on and
to whom. 'Integrated Care for Drug Users' notes that:
where service providers are referring on to another service, they should be
mindful of the information needs of the receiving service
service providers have a
responsibility to clients to share only that information which is necessary to ensure that they benefit fully from the service
It has been suggested that information should be shared on a
"need to know" basis, but that still requires agencies and service providers to develop a common understanding and agreement about the type of information, the level of detail and confidentiality arrangements.
'For Scotland's Children: better integrated children's services' (Scottish Executive 2001) identifies "
the need to repeat the same information to each agency; the "
absence of mutual awareness among service providers and
services pulling in different directions" as some of the main problems with services, as perceived by service users. Meanwhile, service providers criticise other agencies for their "failure to communicate, co-operate or work together" .
The EIU's consultations with practitioners working with young people (and consultation, via services, with young people themselves) confirmed
multiple assessment and poor information sharing as a problem for young people and agencies.
"Yes, very repetitive, same information"
"Sometimes I get annoyed at the same stuff"
"Same questions" |
Practitioners felt that part of the difficulty was that there can be
so many agencies involved (even more so for young people than for adults), all with their own preferred assessment tools and processes, and
their own definitions of confidentiality. There can be a lack of willingness to share information with colleagues in other agencies -
agency preciousness. Deficiencies in information sharing also exist
within organisations. Most commonly the concern is individuals and agencies getting
too little information. But getting
too much information can be a problem too
: for example, workers in the voluntary sector complaining that social workers give them information they do not need.
How can information sharing be improved?
The EIU's consultations with practitioners identified potential
ways of improving information sharing practice. We set out below the most common themes and ideas from the consultations, together with examples of information sharing initiatives already underway.
Obtain, and adequately record, the young person's consent to information about them being shared with others (including agreement on with whom the information can be shared). It is important to be upfront about circumstances (e.g. where there are child protection concerns) where information may be shared without their consent. There should also be regular reviews of the consent as circumstances may change over time. 'Integrated Care for Drug Users' highlights the need for information sharing to take place within an environment of
informed client consent. To achieve informed consent
"the client must be advised of the implications of giving or of refusing consent, amongst whom their personal information is being shared and the purposes for which it is being shared". It is important also that "this process is not undertaken in a manner divorced from the rest of the dialogue between practitioner and client". For example, discussing with the young person their needs and how these can be addressed presents an opportunity to consider the necessary information sharing.
Guidance/leaflets on confidentiality and information sharing for young people (and workers). These materials must be simple, clear and accurate. They should incorporate assurances that data will be held securely and will need authority to be viewed. They should also explain who may want to access the information and for what purpose.
EXAMPLES OF INFORMATION SHARING MATERIALS FOR YOUNG PEOPLE and workers |
NCH Scotland Gael Og Mentoring Project have a
Client Contract, incorporating a statement of their
Confidentiality Policy. They also have
'Guidelines for Young People' setting out what their rights are, 'What the project expects of each young person who receives the support of a mentor', 'What a mentor can and can't do for a young person they are supporting', young person and parent/carer contact details and details of who the mentor may contact. Contact:
mikemawby@nch-gaelog.fsnet.co.uk Hype provides support to young people in Edinburgh experiencing difficulty with drug, alcohol or volatile substance use. In
Chapter 4 we included an extract from their leaflet 'Your Rights and Responsibilities as a Client of Hype'. The leaflet incorporates the service's expectations of clients and young people's rights as clients of Hype. This includes their
right to a confidential service (except in the circumstances specifically referred to in the leaflet)
See Appendix 7. Contact: :
schype@mail.nch.org.uk Healthy Respect is developing a booklet on rights, responsibilities and the law, dealing with confidentiality and its possible impact on child protection, to support professionals working with young people in the area of
sexual health and relationships. There will also be versions for education professionals, health professionals and voluntary sector youth workers, and one for young people, explaining their rights to confidentiality. Contact
healthy.respect@lhb.scot.nhs.uk or
www.healthy-respect.com The East Sussex Information, Referral and Tracking (IRT) Project, a more detailed case study on which is included on page 49, has produced guidance on information sharing
for practitioners. This guidance aims
to enable them to share information confidently and appropriately. It includes a helpful checklist of 'questions to ask if you want to share information about a child or family'. The guidance is available at:
http://www.eastsussexcc.gov.uk/socialcare/policiesandplans/childrenandfamilies/trackingchildrenatrisk/trainingpacks/download.htm |
Clarity between agencies on parental rights of access to information about problems with their children.
'Services for Young People with Problematic Drug Misuse' (EIU 2003) recognises that "sharing of information is a
potential source of tension between parents and health and social care professionals. Although agencies share information, parents may be refused access to this information on the grounds of maintaining a young person's confidentiality (Clelland and Sutherland 2001). The Children (Scotland) Act 1995 gives parents responsibility for the young person's welfare, but
not necessarily the legal right to access confidential health information about the young person". Further guidance is available on page 17 of the guide.
Establish trust between workers and between agencies. Trust between individuals in services is important but, if that kind of relationship does not exist between the agencies, there are likely to be problems when the individuals move on. Relationships may go with them.
Regular inter-agency staff training can help promote understanding of what other people do and the different ethos within different agencies.
Develop inter-agency information sharing protocols (
see 'Integrated Care for Drug Users': Chapter 6, Information Sharing). There is work underway within the Scottish Executive to examine existing information sharing protocols that have been developed (within both adult and children and young people's services). The intention is to develop a 'gold standard protocol' /protocol template which can be adapted to meet local information needs. The aim is to encourage consistency and best practice in protocol development and to avoid duplication of effort. It is also intended to provide templates for staff and client leaflets and guides. Contact:
Tina.Yule@scotland.gsi.gov.uk
Develop information technology to support information sharing across agencies and localities. A significant effort is now being put into the
eCare Programme, a partnership between the Scottish Executive, health bodies, local authorities and other agencies, which seeks solutions to the present lack of electronic information interchange between agencies. In
England, ten
identification, referral and tracking (IRT)
Trailblazer Projects have been established to develop and test new ways of information sharing and multi-agency working (note: these are now part of 'Information Sharing and Assessment' - ISA).
INFORMATION The eCare Children's stream has four local partners: Pan-Grampian, Dumfries and Galloway, Glasgow and Lanarkshire. Specifically, the programme will develop an Integrated Children's Services Record (ICSR), identify core data sets for a Shared Assessment Framework (SAF), develop a Personal Care Record (PCR) to enable children and parents to view their own summary care data, identify a data set and methods of information sharing for Child Protection, and investigate consent and confidentiality issues for electronic data sharing. Further information is available at:
http://www.ecare-scotland.gov.uk/childrens_services/childrens_services_home.htm. See also, Glasgow case study below. |
An overview of the programme is at:
http://www.cypu.gov.uk/corporate/irt/index.cfm See also, East Sussex County Council case study below.
Agree the common, core information that will be shared between agencies. From the practitioner consultation seminars, feedback from the Reference Group, and work undertaken by the West Lothian Shared Information Project (funded by Changing Children's Services), we have identified the following suggested core information:
basic person details - name, sex, date of birth, address, living group (e.g. living alone, living with parents)
any dependant children
details of substance misuse problem
highlight any wider issues, e.g. housing, education, offending behaviour, child protection concerns, including legal status
other support received/other people involved
an emergency contact
In 'Digest of Assessment Tools' (EIU 2003), EIU has set out the rationale for developing core data sets as a way to help service providers to do their job better, to reduce the duplication in assessment and to provide consistent information to help DAATS and partner agencies in planning of services. There are other developments at national level described in this guide that are likely to promote and support local developments.
EXAMPLES OF DEVELOPMENTS IN INFORMATION TECHNOLOGY |
Glasgow (Glasgow City Council, NHS Glasgow and the Scottish Children's Reporters Administration), one of the partners in the
eCare children's stream, see above, has been exploring young people's online access to their assessment and other data. From their consultations with young people they found that: all young people were aware that various organisations knew a lot about them they were all keen to have access to their own information views on whether parents/carers should have access to some or all of this information varied according to age and stage of development they had clear views on website content and wording most of the young people could think of instances where it would be helpful for organisations to share information about them with others the younger, primary aged children, shared their passwords with friends, which raised concerns about access.
In conclusion, the proposal to allow children and young people access to their own information via a website was one that they would welcome.
Contact:
Susan.orr@sw.glasgow.gov.uk The East Sussex County Council IRT Project aims to: help stop children and young people falling through the net, identify those who need help at the earliest opportunity, refer them to the right source of help and make sure they get it, and track their progress in a co-ordinated way. The project involves an initial multi-agency pilot in one locality, then rollout to the whole council area. Tasks include: the development of a shared view of vulnerability, based on a picture of a thriving child/young person an early identification common assessment tool a service directory to support identification of appropriate interventions agreements to share information- strategic and a simple guide for practitioners and their clients provide access to
a simple, secure database, with minimum essential information to make communication easier and help track interventions for children and young people.
Contact:
www.eastsussexcc.gov.uk/socialcare/policiesandplans/childrenandfamilies/trackingchildrenatrisk/download.htm |
Funding for voluntary organisations to invest in IT systems and IT training. Many young people are clients of voluntary sector agencies. For information sharing to be as comprehensive as possible, it would be helpful if these agencies had the opportunity to contribute to the process and to access information. This may require discussions to establish mutual understanding about the nature and purpose of the assessment process, and the role of information sharing. There would also be a need to ensure that the local protocols reflect the participation of voluntary sector agencies.
Development of an integrated approach to assessment. Practitioners referred to the development of single shared assessment for adult services, recognising the potential merits in a similar approach for children and young people's services. Since our consultations, the Scottish Executive has been progressing its work on the development of an integrated framework for assessment for all children and young people, to include guidance on information sharing. This initiative is referred to throughout this guide.
Creating, and maintaining, an up-to-date local directory of services for young people. Young people and families should know what services exist. Workers need to be aware of the services that they can refer young people on to. One of the messages from practitioner consultations was that ideally such information would be web-based to allow continual update and ease of access (and incorporate details of services offered, waiting times and referral criteria).
EXAMPLES OF DIRECTORIES |
South Lanarkshire's 'Directory of services for children, young people and their families in South Lanarkshire' describes what services are available and how to access them. The directory covers: health services, education resources, careers services, housing, social work resources, parent and carers support groups, the children's hearings system, child safety initiatives, national organisations and local organisations. The information provided on each service includes: a description of the service, contact details, opening times and the referral route. The South Lanarkshire partners are in the process of updating the directory and will make it available online in the near future. For a paper copy of the directory, contact Barbara Berney on 01698 453760 or email
strategicservices@southlanarkshire.gov.uk The National Treatment Agency for Substance Misuse (NTA) in England and Wales provides an example of an online directory of services. Their
'directory of residential rehabilitation services in England and Wales for adult drug and alcohol misusers' enables access to up-to-date information on where vacancies are currently available. The directory lists services for those over 18 and, in some cases, those over 16.
Separate information on residential services for young people is planned. The directory is available at
http://www.nta.nhs.uk/residentialdirectory/index.html The East Sussex IRT project (see case study on page 49) planned to create their service directory online and on paper. Consultation with families and young people indicated that many have access to the internet and where they do not they will use drop-ins, professionals or libraries to access information, with the support of another. This strongly influenced the decision not to produce a paper version, which has resource implications and presents a difficulty in maintaining the accuracy of the information. |
CHECKLIST Key factors to address when developing information sharing: How to obtain, and adequately record, the
young person's consent to information about them being shared with others. Make sure that this is set in the context of the assessment, rather than being a separate process. Explain the circumstances where information may be shared without their consent. Explain the implications of refusing consent to sharing information. Developing guidance/leaflets on
confidentiality and information sharing for young people and for workers. Consider the need for training on confidentiality and information sharing for workers. How to establish, and maintain,
trust between workers and agencies to support information sharing: for example, via inter-agency staff training. Staff working in multi-agency settings need to talk over the issues together. How to develop
protocols for inter-agency information sharing in a way that promotes trust between agencies. How to use
information technology to support information sharing between workers, and across agencies and localities. Agreeing
common, core information that will be shared between agencies. Creating, and maintaining,
up-to-date local directories of services for young people (accessible to young people and families, and workers).
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