“A Service User’s Perspective On Confidentiality”

1. “A Service User’s Perspective On Confidentiality” Meriden Programme 10th March 2005 Solihull Barbara Crosland User Involvement/ Social Inclusion Lead

2. The National Institute for Mental Health in England July 2001 – a world first Policy Implementation Monitoring Research and Development National Office with 8 RDCs

3. NIMHE West Midlands’ Programmes • Acute Inpatient • Suicide Prevention • New Models of Community • Teams • Primary Care • Workforce • BME • Prison Mental Health • CAMHS • Older people • Service Redesign • Social Inclusion • Substance Misuse • Dual Diagnosis • Voluntary Sector • User Involvement • Carer Involvement • Out of Area Treatment • Personality Disorder • Knowledge Management • Mental health of Women • Mental heath promotion • Leadership and Team Effectiveness

4. NIMHE West Midlands Mission Statement • We aim to support a whole systems approach to establishing mental health services that could be used with confidence by our families, our friends and ourselves. NIMHE West Midlands’ Mission Statement

5. Introduction- “Inhuman Rights?” • A summary of an article from the Guardian (Jan 5th 2005)on patient confidentiality was posted on an email-forum • It described how Rosemary, mother of a young woman with anorexia “battled with doctors” to gain detailed information about her daughter’s illness and treatment, • Response from some carers was to praise the mother for her persistence in getting the information she felt she needed to cope with her daughter and help her “get well” e.g. target weights, handling “difficult behaviour” • Response from users (and some carers) was anger that the wishes of an adult had been overridden, and to question the nature of the “caring relationship”

6. Some Personal Feelings From the Article • Compassion for a mother watching her child get thinner and wanting the “best possible care” (as she saw it) • Dismay at some of the underlying assumptions of the journalist “Her daughter, like many other mental health patients, could not be relied on to tell her mother the truth of what doctors had said” • Accepting the view of a consultant that telling families more may have prevented a number of individual tragedies • Not accepting that this is carte blanche to move away from thee legal and human right of confidentiality • Not seeing the carer as “part of the clinical team”- they are in a adult relationship which should bring mutual pleasure • Relief not to be in that family where the dynamics are plainly unhealthy for everyone concerned!

7. Why Is Confidentiality So Important? If used correctly, confidentiality procedures can: • Protect vulnerable service users from various forms of potential abuse- including emotional- which is more common than we would like to think • Prevent collusion between family members/ friends and professionals- have personally witnessed pressure being inappropriately placed on users to accept a particular treatment etc • Ensure respect for the rights of adult users to have privacy and a sense of control over their own lives • Allow service users to build therapeutic relationships with clinicians and to feel safe to explore difficult issues

8. What Goes Wrong With Confidentiality? • Gives certain staff a reason not to have to engage with carers- especially if labelled as “difficult” • Staff may not properly trained/ may be frightened of getting it wrong if share any information • Staff belief that already they know what user would or should want shared/ not shared (esp. if user’s “capacity” is judged as impaired) • Regulations can override common sense/ humanity • Lack of information can leave carers feeling hurt/powerless • Staff just ignore it anyway and say what they like to who they like!

9. Why Might A User Not Want Information Shared With Carers? • Reason often cited is symptom of illness- paranoia, denial, guilt at being seen by loved ones when so unwell • A profound need to maintain control over one aspect of life when may be being systematically disempowered • Can often be however, a symptom of more serious problems in the caring relationship- hostile dependency, breakdown in trust • Personality- some individuals are just very private- may be issues of age, gender, culture

10. What Can Professionals Do To Support Effective Information Sharing? • Use of Advance Directives/ Care Plan- when user is well, get agreement on how carers should be involved in a crisis • Proactive approach- ask the sure what can be shared (without pressuring them to divulge)/ offer support to carers who are feeling sidelined by lack of information • Working through independent Advocates- both for carers and users- neutral third party can be useful • Referral for Family Behavioural Therapy/ Relationship support counselling if communication in general between the user and carer is problem

11. Closing Thoughts • To protect service users’ rights, confidentiality about patients’ care has to be “default” setting until agreement for information sharing is ascertained • Carers have rights too- e.g. to know if they may be at risk-occasional unauthorised disclosure may be appropriate • “Meaning well” is not a valid excuse for staff who deliberately break confidentiality-can devastate relationships • If an accommodation on information sharing cannot be reached, carers may have some hard choices- to live with the problems this causes, or to withdraw from the “caring for” role • But in most cases, with support from staff, communication can be sorted out in a way with which everyone is comfortable