1. Joan Jamieson Equality and Diversity Information Programme Manager, Information Service Division ISD Equality & Diversity Information Programme (EDIP ) Men’s Health Forum Scotland 19 th October 2007

2. What will I talk about this morning Brief overview of Information Services Division (ISD) Current information about men in relation to ethnicity and health – how easy and with what cost? Heart of the problem in Scotland What is the NHS doing : EDIP Consulting & Engaging with service users

3. Information Services Division (ISD)  A national organisation  Part of NHS National Services Scotland  Supporting the collection of health information - (pre-) cradle to the grave  Providing health statistics, information technology & related services for NHS Scotland Western Isles Highland Grampian Tayside Shetland Orkney Fife Forth Valley Greater Glasgow & Clyde Borders Lothian Dumfries & Galloway Ayrshire & Arran Lanarkshire

4. Ethnic Groups in Scotland Census 2001

5. Age by ethnic group Scotland Census 2001

6. National Insurance Number Allocations to Overseas Nationals Entering the UK ( abbreviated) http://www.dwp.gov.uk/asd/asd1/niall/registration_tables.xls

7. Massive prevalence (%) of glucose intolerance (diabetes & IGT) (NHP, 25-74 years)

8. CHD mortality among those aged 25 years and older, compared to people living in England and Wales Source: Fischbacher et al 2007 Lives in Scotland

9. Ethnic Groups- what is routinely known?

10. Scottish Diabetes Survey 2005: completeness of recording of ethnicity by NHS Board

11. Heart of the Problem in Scotland Discrimination Structural -The law of itself is not capable of eliminating discrimination and change does not comes easily to institutions like the NHS. Cultural - stereotyping e.g asylum seekers as all having HIV /people with learning difficulties finding speaking in groups very stressful Institutional -e.g lack of detailed information on ethnicity- “statistical invisibility can lead to political invisibility which in turn prevents an appropriate agenda being developed” ( Bhrolchain 1990 ) Personal - being Black & HIV positive could be less favourably treated due to beliefs and attitudes of some who deem HIV as a punishment for their sexual/ drug practices. Johnson, A ( 2006), Structural, Cultural, Institutional and Personal Discrimination,

12. Equality & Diversity Programme Remit designed to help NHS Scotland identify and meet the needs of minority ethnic and diverse groups promote social inclusion and narrow health inequalities comply with new laws, regulations and good practice; and develop information systems that record necessary details with minimum additional fuss and bother.

13. Context of the Equality & Diversity Programme Legal and Policy drivers: Anti Discrimination Laws e.g RRAA2000, DDA Fair for All health service care and delivery Patient Centred Care – Involving people Partnership working Priority for NHSScotland: Current lack of relevant data means that the NHS is Scotland is unable to demonstrate non discriminatory practice or any inequalities in the health of the Scottish population by : Ethnic group/relgion/transgender/disability/sexual orientation/or other determinants of inequality

14. Public Consultation Meetings Consultation Definition : Inviting participants opinions, informing them, reporting their voices and using results to inform recommendations for collecting equality and diversity data. To hear and understand what people across Scotland have to say about providing more personal information to support their healthcare through: Presentation Discussion Questionnaire

15. General Issues Raised by Participants related to their use of the NHS Language barriers Unsuitable hospital Appointment times Problems describing their symptoms Medication worries Lack of time with GP Dietary & suitability of hospital food Reading & understanding NHS letters/information. Transport & mobility problems Translation and interpretation services Concerns about the ethnic categories Perception of lack of NHS staff knowledge Being asked the same questions repeatedly Why NHS wants to know your religion NHS 24

16. Data Collection Design Self classification/self completion difficult: Literacy Language Understanding of terminology Who can help Many dependent on relatives Poor sight Shaky hands Too many questions at one time Personal Approach preferred GP registration Practice Nurse Community Nurse First referral consultation

17. What participants want 1 Although willing to give more personal information a number of requirements were mentioned by participants: Forms/questionnaires - easy to understand & complete Clear explanation about the reasons for the data collection Stakeholders should be involved in preparation & planning Staff trained in equality & diversity should ask these questions Interpreters should be available to support service users

18. Clear & concise information with regard to confidentiality & security of this personal information Assurance that the information will be used to support culturally competent health care and to improve services To be asked before this information is shared outside the healthcare sector Informed about how to change this information More consideration as to who, where and when this personal information is collected Further consultation on the religious & sexual orientation questions What participants want 2

19. Conclusion Overall participants agreed they would support the NHS in terms of the collecting and providing more personal information. Ingredients for success include: Communication at National, Local, individual level with appropriate information and in preferred format. Local stakeholder involvement of people at the preparation, planning and design. Benefits clear and unambiguous – be honest. NHS make use of the information to improve individual care and service delivery balanced with confidentiality & security reassurance. GP practice level where people know the start of the collection. Questions, Language, Definitions,Terminology require refinement and user involvement. Further consultation around capture of ‘spiritual care’/relgion, sexual orientation, disability.

20. Closing thought Mr Malik has arrived at the hospital to be admitted to hospital for heart surgery. The GP referral includes the following: Mr Malik uses a wheel chair, He manages to look after himself apart from assistance with bathing and showering He would prefer a male practitioner to assist with personal care He would like his local Imam to pray with him before surgery. Outcome – Mr Malik feels that having his particular needs met made all the difference in his recovery. Question Can the NHS make this happen?