Confidentiality & Information Sharing

1. Confidentiality & Information Sharing Paul Farmer Director of Public Affairs (thanks to Dr. Vanessa Pinfold Rethink Research Manager)

2. Overview • The issues • Carers Needs • Confidentiality & Information sharing • Where next?

3. The Issues • Overview of mental health care • Carers’ policy initiatives • User, carer, professional? • A changing landscape

4. The experience of severe mental illness • stigma • personal denial • professional denial/delayed intervention • traumatic start • poor treatment • partial care • dehumanising attitudes • written off

5. Carers’ views • 47% of carers say mental health care for carers has improved in last 3 years • 49% of carers say mental health care for users has improved in last 3 years

6. Regional variations • Midlands best at 58% • North 52% • South West 52% • Eastern 48% • South East 43% • London worst at 41%

7. Carers who feel valued by professionals

8. Top carer frustrations • 30% shortage of adequate services locally • 16% access in a crisis • 14% access to mental health professionals • 11% quality of mental health care staff • 10% treatment of carers by professionals

11. A final flurry • One in six carers say they have no local support services • One in four carers have been denied help in the last three years • One in four carers feel they don’t have enough information to help them

12. Why research? “On my son’s discharge from hospital after an episode of acute psychosis we had no information about his condition, how he would behave, how we should react to him. We had no experience in dealing with him when unwell. We were expected to just cope – a complete nightmare!” (Carer)

13. Rethink Survey 2003

14. Why research? “Service user’s voice may be silenced by professionals and carers believing that they always know best. Also, depends on the quality of the professional and carer – very difficult to generalise” (Service User) “I think sometimes staff are worried about saying the wrong thing I.e. don’t know what language to use, are frightened of upsetting the carer, and aren’t sure what they can and cannot share” (CPN)

15. Solutions required… • Government commitment to supporting carers through information sharing • Policy guidance mixed • Practice reportedly poor • Frustrated carers • Professionals lacking confidence • Service users lacking trust

16. Our approach? • National Study • Rethink severe mental illness • Institute of psychiatry • Other partner organisations including MACA, Mind, Eating Disorders Association, Age Concern • Four Stakeholder groups • Service users • Carers • Mental health professionals • Carer Support Workers

17. Research Method • Policy and literature reviews • National Survey • In-depth interviews • Group visits • Two multi-disciplinary workshops • Expert panel providing guidance and critical comment

18. What we found? KEY ISSUES • Consent and communication • Balancing ethical principles • No blue print solution – individual strategies required • Recognition of carer role • Understanding difference between general information and personal/sensitive info • Professional judgement

19. Contrasting perspectives? National Survey – Good Practice Recommendations

20. Service Users • Consent should be collected before information is shared with carers, including the use of advance agreements; • Better communication in mental health based upon openness, honesty and respect between all stakeholders; • Carer involvement should not diminish service user wishes; • Service users should be involved in decisions to invite carers to meetings;

21. Carers • Access to general information • Skills to support them in their caring role • Opportunities to discuss information with staff • Supportive explanations provided when info cannot be shared because consent is withheld • Cultural shift in professional attitudes towards working with families • Strategies to support carers where service user is an in-patient • Carer pro-activity

22. Professionals • Local policy guidance required • Recognition of carer role by professionals; • Mental health system should address practical constraints restricting Prof involvement with carers; • Professionals need training in the application of confidentiality; • Consent to be collected and reviewed routinely; • Supports delivered to carers including carers assessments and general information packs; • Improvements in communication between all stakeholder groups • Collaborative approach • Consider impact of information sharing on carers and provide support as appropriate (esp Dementia)

23. Recommendations Basic Framework: I: Practical Actions – Carers, SU, Prof II: Supportive Structures III: Good Practice Principles IV: Decision making (values and judgements)

24. Principles • Consent • Effective communication • Service user empowerment • Carer empowerment, recognition carer role • Respect wishes of others • Collaboration • Openness and honesty • Recognition of caring context • Assessment • Ethical balance – need to know / rights to privacy

25. Structures • Advance statements – consent to disclose • General info resource kit for carers • Accredited carer training • Accredited professional training and support • Quality mental health services • Provision of services for carers • Legal clarity: rights of carers, definition of carers, professional codes • Carer strategy, policy and guidance • Clinical governance audits of carer involvement • Carer and SU decision making in service planning • Services allow professionals time to work with carers

26. Actions Good practice in assessment • Holistic assessment of caring context; • Assess the capacity of the service user and carer to understand the shared information; • Assess carers’ needs and their ability to use and manage the information provided; • Thorough risk assessment of both service user and carer circumstances to assess carers ‘need to know’ and the likely risks to carer (carer protection policy); • Incorporate carer assessments into routine practice

27. Actions Consent • The status of SU consent and capacity • Any known advance wishes; • The identity of the main carer and significant others who may be supporting or liaising on behalf of the carer; • The role of the identified carer where the service user’s judgement is impaired either permanently or temporarily; • The nature and extent of information necessary to support the particular care context; • The risks involved in disclosing or not disclosing information; • Duties under the law, courts and tribunals; • Responsibilities where there are known risks regarding the health and/or safety of the service user and others.

28. Actions Where consent is withheld: Balance service user and carer needs – decisions to ‘break confidentiality based upon professional judgement Where confidentiality is breached decision should be: • Discussed with colleagues • Documented in notes • Service user informed as appropriate Consider solutions that do not involve breaking of confidentiality

29. Actions The disclosure process • Differentiate between general and personal info • Assess carer context and type of relationship • Keep SU informed of how their info is shared Training and education Meetings protocol First points of contact – hospitals and GPs Specific strategies supporting carers with dementia

30. Next Steps “No matter what recommendations are produced with regard to confidentiality there must be a will on the part of the local authorities and front-line professionals to provide as much information to the carer as possible, and this should be reflected in professional training, because without this positive mindset the carer will be disadvantaged” (Carer Expert Panel Member) “Possibly the most important thing about sharing is once you have you can’t change things, you only get once chance, so it has to be right” (SU Expert Panel Member)

31. Next Steps • NSF Review • Mental Health Bill/Mental Capacity Bill • Implementing best practice • Holding the tensions • We’re in this together