Sharing information or breaching confidentiality?

SSRG ScotlandNovember 2004

Dr Helen Hammond

Sharing information or breaching confidentiality?

• Child death inquiries highlighting need to share…

• audit and review…it’s everyone’s job….• Framework for standards/Children’s Charter

standard 4 “agencies and professionals share information about children where this is necessary to protect them”

• information sharing protocols..

Sharing information or breaching confidentiality?

• Trust’s information sharing policies…Caldicott Guardians

• Defence bodies and GMC cautious• complaints against paediatricians rising• difficulties with expert evidence

discouraging involvement

introduction

• Why share?…lessons from recent inquiries• Why is it so difficult for doctors?• What are our responsibilities?• What is it we need to share?• Some recent developments…West Lothian

initiative

Messages for the NHS from recent Child Death Inquiries

introduction

• From health perspective:• pen picture of Kennedy McFarlane, Victoria

Climbié and Caleb Ness• lessons to be drawn- general and specific• lessons from audit and review

Introduction continued

Common themes can be grouped under three main headings:

• accountability (responsibility and leadership)

• communication (information sharing)

• training (health and interagency)

Kennedy McFarlanedied age 3 years 17.05.2000

• Presented to GP and HV soiling, hair loss, bruising, unsteadiness

• admitted 2.3.00 bilateral corneal abrasions• admitted 20.4.00 bruising, back pain and

unsteadiness-toxicology positive • mother had physical/mental health problems• died: physical assault by mother’s partner

(toxicology again positive).

Kennedy- continued

• Repeated opportunities to intervene• failure to share information between

primary care and hospital staff • failure to collate and interprete the medical

findings- including need to resolve apparent conflict

• unchecked assumptions about the actions of others and the validity of their opinions

Victoria Climbié died Feb 2000 aged 7 years

• daily physical abuse and severe neglect, in last months slept in bath hands and feet bound, in own excrement

• 14.07.99 admitted with injuries/scabies• 24.07.99 admitted scalds to head and

bruises ‘self inflicted’, ‘happy friendly child-unkempt/smelly, no possessions’

• admitted 24.02.00 - critically ill and died, hypothermic, malnourished, deformed, injured

Victoria- continued

• failure to speak directly to the child • completely inadequate documentation and

communication• failure to resolve conflicting medical

opinion• discharged without knowledge of consultant

and with no child protection plan

Caleb Nessdied October 2001 aged 11 weeks

• Born with neonatal abstinence syndrome• Died of shaking injury…with healing rib fractures

• mother prostitute and drug addict of 20 years duration- managed by CDPS

• 2 previous children removed from her careallowed only supervised access

• father on probation (drugs and violence) severely disabled following recent head injury

Caleb- continued

• Flawed child protection case conference information from dad’s neurologists and psychologists not sought, information from CDPS over-optimistic, nurse’s concerns not acknowledged, implications of NAS not noted

• discharged with no formal risk assessment and no clear child protection plan

• implications for baby of maternal postnatal depression and paternal deterioration not recognised

Information around CN

CalebHV GP

SCBUMedical & Nursing Team

Mum

‘Dad’

Midwives

Distant SW

Criminal Justice SW

PolicePolice

CDPS

‘X GP’

Main Grade SW Senior SW x

XPharmacist

X Housing

XSenior Criminal Justice SW

X Western General•Ward 1•ITU

Astley Ainsley•Rehab•Psychiatrist•OT•Outreach Nurse

X Family(sister)

Communication (information sharing)

• Verbal…documentation…IT infra-structure• break down professional and inter-agency

boundaries (partic. adult/child service interface)

• confidentiality is perceived as a major difficulty

• assumption information will not be forthcoming

Communication continued

• Child’s needs are paramount…GMC guidance and legislation clear

• culture change …..its everyone’s job• need to understand why it is important to

share • clear pathway encouraging informal and

formal discussion

Communication/information sharing

• put in place shared assessment including risk assessment

• underpin joint decision making• electronic information sharing to ensure

flagging of concerns within health eg between GP/HV and A&E

Audit Results

Children not protected or Children not protected or needs unmet after needs unmet after interventionintervention4040

6262

7777Only partly protected / Only partly protected / needs met after interventionneeds met after intervention

Were protected and needs met Were protected and needs met but onlybut only......well met in 24well met in 24

Total Total -- 179179

Recommendation 1

• Ensure practitioners in all agencies have the right information at the right time

• Pool health information from different sources..GPs, HVs, hospital, community

• not just about registration… ‘cause for concern cases’

• terminology• technical solutions are out there...

Recommendation 2

• Ready access to information about child protection services for users and referrers

• Information on how and when young people will be consulted

• how information will be fed back to referrers

The way forward

• Scottish executive reform programme …standards, multi-agency inspection, CPC reform, managed clinical networks, integrated assessment

• joint protocols for children effected by substance abuse

• need public debate on information sharing and balance of child’s and parent’s rights

• quality assurance in place by May 2004

Why is it so difficult for doctors?

• Hippocratic oath• equivalent to the confessional…..• Confidentiality…Data protection Act,

GMC and Defence Union guidance• Can only break confidentiality if ‘life and

death’

Hippocratic oath

• Named after famous Greek Physician Hippocrates… ‘father of medicine’

• penned in the 4th century BC• guideline for the medical ethics of doctors• I swear by Apollo the healer…• ‘whatever I see or hear professionally or

privately which ought not to be divulged I will keep secret and tell no-one’

Why is it so difficult for doctors

• Whose information is it?• Parents’ information often key• GPs particular difficulty…divided loyalties• mental health professionals…the adult is

their patient not the child• is it ‘significant harm’ only seeing part of

the picture….don’t know till they share!

Why is it so difficult for doctors?

• Adult clinicians argue that sharing information will discourage patients from using service…real dilemma

• ultimately worse for the child• similar issue for vulnerable young people

accessing services for themselves

Why is it so difficult for doctors?

• young people’s own consent…open to challenge

• professional judgement..acting in the best interests of the child

GMC guidance

• GMC expects doctors to respect and protect confidential information…exceptions..

• Para 39 if you believe the patient to be a victim of neglect or ...abuse..cannot give or withhold consent..should give information promptly..

• GMC reminds us of issues of consent…child under 16 years may have ability to consent to investigations ..doctor’s duty to assess (Fraser orGillick competence) Age of legal capacity (Scotland) Act 1991

Data protection act 1998

• Sets out principles to ensure that personal data is..– processed fairly and lawfully– adequate, relevant and not excessive for purpose…not

used for other purposes– accurate and kept up to date– held securely…where joint records eg health/social

work either agency can provide access

What are our responsibilities?

• RCPCH guidance February 2004 ‘Responsibilities of doctors in child protection cases with regard to confidentiality’ www.rcpch.ac.uk

• the doctor’s primary duty is to act in the child’s best interests. If there is a conflict of interests between doctor and parents or parents and child, then the child’s needs are paramount.

RCPCH guidance 2004

• You should always disclose information with or without consent where failure to do so may place a child at risk of death or serious harm or where the information would help prevent, detect or prosecute a serious crime

• you should document thoroughly all decisions and the reasoning behind them separating facts from speculation

RCPCH guidance 2004

• Familiarise yourself with relevant legislation…..• Children Act, Children (Scotland Act)…statutory

duty to assist social services departments in making enquiries ..into possible abuse..

• Psychiatrists primarily responsible for adults should always consider whether a parents or other adult’s mental illness significantly adversely affects a child’s health or development… obligation to inform

What is it we need to share?

• Child’s information cannot be seen in isolation..

• Need family and community information• comprehensive assessment including risk

assessment• considering long term implications...

we need to sharein order to

• keep child safe

• assess need and plan care

• contribute to their ‘life story’…their information

Some recent developments

• MGF3 and CCF projects …electronic solutions

• identify data-sets and pathways (definitions)

• ‘passport’ child held record, personal file/ swipe card

• not just health…minimum information requirements for joint working

West Lothian SHIP Aims

• Identify information we need to share to provide good care in each target group.. disability, ‘vulnerable’, mental health

• address invisibility by embedding systems in universal systems

• provide evidence base for good practice (health/interagency) with outcome measures

• contribute information for service planning (best value/equity)

SHIP background

• Huge amount of imformation already gathered…eg CHSP,SNS, GPASS,CIS,PAS

• not linked within health far a less between agencies (ISD networking)

• problems with shared definitions, criteria a real hurdle (social care standards project)

• problems with patient identification and security need to be solved

SHIP background

• Work on data sets and pathways well advanced with high stakeholder engagement

• early gains- developments in CIS bringing information to the practitioner and parent

• progressing issues around ownership, consent and confidentiality

• agreed concept of virtual multi-agency system sharing information on a need to know basis at agreed referral and transition points.

The way forward-example ‘looked after’ children

Looked After ChildrenDatabase within CIS

CHI

Minimum Data SetIdentification

SchoolWorkers

Active/issuesGP Systems

CHSP - Pre School- School

SNSSIRS

Education

Social Work

Hospital System

Child & Carer Held Records LAC materials Research/Audit

Child Protection Pathway

C

H

R

ON

OL

OG

Y

Initial Referral Discussion: 3 way- health/police/sw

•Joint interview: police/sw•Joint pediatric/forensic examination•shared assessment +risk assessment

•CPR and CP Plan•Review•Referrals (Register/Reporter/Health Services)

Flags: CPR, LAC, Cause for Concern, Supervision order

Referral

Investigation / Assessment

Planning

Review / Reassess

Written & developed by :Healthcare

Professionalsin conjunction with

The IT Department atSt Johns Hospital

Livingston

What next?

• Build on expertise gained in pilot shared assessments

• incorporate risk assessment tool • establish clear protocols for information

sharing throughout child protection pathways/processes

• pilot electronic solution based on adult project/?East Sussex model

The way forward

• Culture change throughout our professional organisations…particularly health

• such a tradition of confidentiality almost amounts to secrecy!

• Need a public debate about sharing information

• does it need legislative change??

Social Work

CommunityHealth Services

Database

AcademyHousing

ETS EnquirySystem

Strathbrock Partnership Database to provide

sharing of core information between

multiple agencies

GP’sx 3

Practices

Specific information fed from local systems

Multivue Multi-Index

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NHSNet

RADTeam Reporter StaffTeam Support Staff, HQ StaffSeasonal Staff,ChRIS Team

ReporterReporter

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Council

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Council

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