Delivering Cancer Services that are Fair for All

1. Delivering cancer services that are fair for allAlastair Pringle Patient Focus Manager Directorate General Health & Wellbeing

2. Delivering Cancer Services that are Fair for All • Background to fair for all • What we have done to date & why • Equalities legislation • What we know • Proposal • Your thoughts & views

3. What are we trying to achieve? • a service where people are respected, treated as individuals and involved in their own care • a service where individuals, groups and communities are involved in improving the quality of care, and in influencing priorities and in planning services • a service designed for and involving users Patient Focus Public Involvement (2001)

4. "We want to work with the NHS to ensure that a patient focus is embedded in the culture. To make this happen we will ensure that listening, understanding and acting on the views of local communities, patients and carers is given the same priority as clinical standards and financial performance."

5. Legal and policy drivers • Delivering for Health • NHS Reform (Scotland) Act 2004 • Equalities Legislation • Race Relations (Amendment) Act 2000 • Disability Equality Duty 2006 • Gender Equality Duty 2007 • Fair for All

6. Public Sector Duties - Requirements on Public Services • Equality Impact Assess policies, functions and activities • Involve people in developing equality schemes and identifying priorities • Publish disability and gender equality schemes; race schemes reviewed in Nov 2005 • Outcomes focussed - need to set outcome indicators and monitor • Report annually on progress on disability & gender equality • Review equality schemes every 3 years • Publish a Ministerial report on progress on disability equality across public sector interests every 3 years

7. Chief Executive NHS Scotland & Equality Commissions SEHD PFPI / Workforce Policy, Guidance and Performance Management Diversity Taskforce Internal assurance / Organisational Development National Support Fair for All initiatives NHS Education for Scotland NHS NSS NHS Health Scotland Assessment HEAT NHS QIS Scottish Health Council: Assessment, Development & Feedback

8. With these internal and external structures in place, we have an opportunity to drive forward this agenda. We need to ensure that delivering patient services that are fair for all is more than a bureaucratic process of developing Equality Schemes: to effect real change equity and equality must be at the heart of our service, embedded in, for example, our clinical priorities of cancer, CHD and mental health and in our health improvement agenda. (letter to NHS Chief Executives from Dr Kevin Woods)

9. Developing Cancer Services that are Fair for All • Whole System Approach • Ensure that this is more than a bureaucratic process • Focus on patient experience and patient outcomes • Report on all our equalities legislative requirements

10. Sources of inequality in health are broad ranging, and it is clear that a holistic description would include: • individual characteristics such as age, gender, ethnicity, disability, sexual orientation; • health behaviours eg smoking, diet, physical activity; • access to health and care services, which may be governed by geographic location, literacy, culture, physical access, attitudes, communication; • life circumstances and social and economic determinants eg income and socio-economic status, employment, homelessness.

11. What do we know about service access? general issues • Getting in to services – adult literacy, bme adults knowledge of services, low / later uptake and presentation by men, poor access for adults with learning disabilities / mental health problems • Getting through services – experiences and fear of discrimination and prejudice, staff attitudes, staff knowledge and awareness, patient information

12. What do we know about cancer? • Risk factors – greater levels of smoking, alcohol use and other risk factors amongst excluded and discriminated groups, cultural issues e.g. diet • Cancer awareness – low level of knowledge of signs & symptoms in bme communities • Screening – low levels of screening amongst adults with learning difficulties & mental health problems; lesbians for cervical screening

13. Inequalities amenable to service redesign Prevention Other environmental or upstream factors Follow Up & Readmission South Asian people 50% more likely to die early from CHD Gypsies / Travellers significantly poorer health status but less likely to access health services 24% LGB People experienced discriminatory attitudes 25% inappropriate advice or treatment 24% of deaf or hearing-impaired people miss appointments 19% miss>5 appointments Factors affecting diagnosis & entry Effectiveness & experience of treatment

14. What do we know – what do patients wantMULTIPLE AND COMPLEX NEEDS USER VIEWS ON SERVICES One service responding to all needs Joint working Support with every day practicalities More information on services Long term support and follow up Flexibility and individual approach to each client. Treating client as a whole person

15. What do we know – what do patients wantMULTIPLE AND COMPLEX NEEDS USER VIEWS ON SERVICES • Consistent and positive relationships with health professionals and other workers • Respect and trust, non-judgemental staff with good communication skills • End to racism and stigma • Culturally sensitive services • Equality and fairness • Peer support • User empowerment

16. Progress to date • Consultation • Development of ‘equalities briefing on Cancer’ to be launched alongside patient stories at NHS Scotland Event 12 / 13 June • Programme Initiation Meeting 2nd April • Model for delivery agreed • Programme aim agreed – to deliver cancer services that are fair for all - and objectives

17. Programme Objectives • equality impact assessed policy & planning leading to improved patient experience • reduction in inequalities in risks associated with cancer • improved understanding of signs and symptoms of cancer by different communities • improved access to services • improved communication responsive to individual need

18. Programme Objectives • enhanced patient monitoring leading to a better understanding of the individual needs and circumstances of people’s lives leading to more accessible and appropriate care • Greater involvement in decisions and more respect for preferences by communities • Clearer, more comprehensible and accessible information and more support for self-care • Targeted educational support for staff • Clear outcome measures developed through involving patients

19. Questions / discussion • Anything missing? • How best to engage NHS Scotland? • What support required?