Ending Age Discrimination and Promoting Age Equality in Health and Social Care Preparation for the equality legislation

1. Ending Age Discrimination and Promoting Age Equality in Health and Social CarePreparation for the equality legislation Richard Gleave, Project Director

2. Ageism and age discrimination ‘…ageism is used to describe stereotypes and prejudices held about older people on the grounds of their age. Age discrimination is used to describe behaviour where older people are treated unequally (directly or indirectly) on grounds of their age.’ (Ray, Sharp and Abrams, 2006) BUT NOT ONLY OLDER PEOPLE LESS FAVOURABLY RATHER THAN UNEQUALLY The legislation will also provide protection against “dual discrimination” where less favourable treatment is based on a combination of two factors – e.g. age plus gender or race or disability

3. The Equality Bill and age Bans age discrimination, harassment and victimisation in the provision of services and exercise of public functions This will become law in other sectors in 2012 – and the review recommends health and social care are in line with this For age only, the ban does not apply to the treatment of under-18s Creates a single public sector equality duty, covering eight protected characteristics including age. • The duty applies to public bodies and those carrying out public functions – • including private and third sector organisations where they are fulfilling public functions. • This will become law in 2011 and applies to all age groups 3

4. Evidence • Centre for policy on ageing reporrs • Primary Care • Secondary Care • Mental Health • Social Care • National review/report • Systems • Attitudes • Services

5. Differentiation versus discrimination • When is age a legitimate criterion: • For individual decision making • For services • Exceptions legally justifiable if “A proportionate means of achieving a legitimate aim)

6. Consultation on implementation now underway • Next meeting is in Leeds on Monday • BGS involved all the way • DH wants our input – not just lip service • I will have to stand down from BGS spokesperson role so need someone to take it forward

7. The National Review Jan Ormondroyd Chief Executive Bristol City Council Sir Ian Carruthers Chief Executive South West SHA Terms of Reference of the review • The national review of age discrimination will make recommendations on the following areas: • the timetable for implementation of the ban on age discrimination; • where it is objectively justifiable to retain age-based differentiation in services; • how to support the health and social care system to implement the public sector equality duty in respect of all age groups; • which key actions health and social care bodies should take to make demonstrable progress in meeting their obligations as quickly as possible. 7 7

8. Age discrimination in the media 25 June 2009 Many UK cancer deaths “premature” Up to 15,000 people aged over 75 may be dying unnecessarily from cancer each year in the UK. 22 October 2009 Equality bill takes aim at 'institutional ageism' in NHS Jade Goody sparks age limit review for cervical cancer testing The current age limit for cervical cancer testing will be reviewed, a health minister has announced in the wake of the debate sparked by Jade Goody's losing battle with the disease.

9. Four Key Themes • Start with the experiences of patients, service users and carers • Fairness is at the heart of ending discrimination, especially given the financial context of the next few years. • More than just compliance with the law but changing attitudes, behaviours and systems. • To be effective the approach must be rooted in co-design and co-production of services and solutions.

10. The solutions are to be found in existing policies BUT with an explicit focus on age discrimination and age equality 1. Engaging with the public and partners 2. Focusing on personalisation and patient centred care 3. Delivering improvement in key services Dementia Falls Involvement Putting People First A focus on age High Quality Care for All Prevention Cancer

11. The legislation has two approaches to “appropriate” differences Approach A Approach B Age differentiation must be “objectively justified” (i.e. a proportionate means of achieving a legitimate aim). Members of the public can challenge health and social care professionals and organisations where they feel they have been discriminated against. Professionals and organisations will need to show that their decision was a “proportionate means of achieving a legitimate aim” Create one or two specific exceptions where age differences are demonstrably of general benefit. Age differentiation in all other areas must be objectively justified Professionals and organisations will need to show the difference can be objectively justified or it meets the criteria in the exemption. Members of the public can challenge if they feel that the exception is not applicable.

12. We would like your views on the two approaches Would a couple of targeted exceptions help implement the intentions of the law ? A possible exception based on individual professional judgements about the use of age but only when based upon a full and fair assessment of the patient/service user’s needs A possible exception for national public health programmes where age criteria reflect the characteristics of the population rather than individual’s needs

13. Exceptions – both approaches have pros and cons

14. Recommendations on specific services • Specifically the recommendations on • Mental health services and the links with New Horizons (recommendation 2) • Cancer services, especially the upper age limit on breast screening (recommendation 3) • Prevention programmes in health and social care (recommendation 4)

15. Will it mean anything for Joseph and Alice? Joseph is 77 years old. He went to the GP because he was having problems with walking to the shops. The doctor said that if he had been younger, then he would have referred him for an operation on his knee, but at his age, what did he expect? His daughter was present and she intervened and so the doctor agree to refer and Joseph successfully had the operation. Alice is 85 and lived in her own home with support from her daughter. When the daughter became ill ,the social worker and GP were concerned about the level of support she would need to remain at home, even though she strongly wanted to remain there. She was not offered the option of direct payments. Alice was re-housed into residential care, where she died six months later.

16. But different treatment by age is not automatically discrimination It can be “good” It can be “neutral” It can be “bad” Age appropriate services where these meet people’s needs Positive action - to redress unfairness Reflect physiological characteristicsin the population rather than individuals Differences in treatment may reflect natural variation rather than be the result of specific decisions Direct discrimination is treating someone less favourably because of their age Indirect discrimination is when an apparently neutral criterion places people of a particular age at a disadvantage compared to others unless the less favourable treatment is justified

17. We would like your views on the best approach to ending age discrimination Should the legal test be that all differences in treatment need to be “objectively justified”? Or would a couple of targeted exceptions within the law where different treatment is clearly appropriate, help with local implementation the intentions of the law ? A possible exception based on individual professional judgements about the use of age but only when based upon a full and fair assessment of the patient/service user’s needs A possible exception for national public health programmes where age criteria reflect the characteristics of the population rather than individual’s needs

18. The legislation has two approaches to “appropriate” differences Approach A Approach B Age differentiation must be “objectively justified” (i.e. a proportionate means of achieving a legitimate aim). Members of the public can challenge health and social care professionals and organisations where they feel they have been discriminated against. Professionals and organisations will need to show that their decision was a “proportionate means of achieving a legitimate aim” Create one or two specific exceptions where age differences are demonstrably of general benefit. Age differentiation in all other areas must be objectively justified Professionals and organisations will need to show the difference can be objectively justified or it meets the criteria in the exemption. Members of the public can challenge if they feel that the exception is not applicable.

19. Exceptions – both approaches have pros and cons

20. Recommendations on specific services • Specifically the recommendations on • Mental health services and the links with New Horizons (recommendation 2) • Cancer services, especially the upper age limit on breast screening (recommendation 3) • Prevention programmes in health and social care (recommendation 4)

21. The NHS 2010-2015: from good to great “The Equality Bill sets the scene for delivering high-quality public services for all, taking full account of disability, age, race, gender or any other characteristic requiring protection from discrimination. It provides an unprecedented opportunity for the health and social care system to build on the progress already made, truly eliminate age and disability discrimination and take further strides to ensure that care is personal and meets the needs of each individual and their carers, regardless of age. Ending age discrimination and promoting age equality are as much about changing the attitudes and behaviours of individuals and the culture and practices of organisations”

22. The Green Paper “The prohibition of age discrimination is a very big part of our drive to improve the way that health and social care services are commissioned and delivered to different age groups.” “Our vision is for a system where people will be able to live their lives in the way they want, supported by the services that they choose. A system that gives local authorities the space to innovate, enables services to respond to local conditions and delivers true personalisation.”

23. Next steps Once the consultation is complete, the Department of Health will set out its formal position on the recommendations for the NHS and LAs The NHS Operating Framework 2010-11: “the Equality Bill is scheduled to become law … in preparation, NHS organisations need to take account of Achieving age equality in health and social care, the report of the review led by Sir Ian Carruthers and Jan Ormondroyd.” ADASS regional directorsand DH are exploring how progress in 2010-11 and 2011-12 can be linked with the transformation programme in adult social care

24. Recommendation on timing Recommendation: set the same commencement date as in other sectors (recommendation 5) October 2010: consolidation of existing equalities legislation covering race, gender, disability etc. April 2011: implementation of the new public sector duty to have due regard to the need to advance equality 2012: implementation of the ban on age discrimination in the provision of services and exercise of public functions

25. Recommendations on exceptions • Recommendations were that: • There were no wholesale exceptions (recommendation 5) • The Government should consider whether there is a role for specific exceptions (recommendation 6) • National bodies review all age specific criteria in the light of the forthcoming legislation (recommendation 7)

26. Resources and commissioning • The allocation process • funding formulae for • PCTs and local authorities Cost effectiveness and prioritisation decisions Commissioning services for populations Charging for social care Commissioning care for individuals

27. Recommendations on resources and commissioning • Specifically the recommendations on: • Reviewing the Relative Need Formula and the PCT resource allocation formula (recommendations 9 and 10) • b) Use of tools such as QALYs in prioritisation decisions (recommendation 11) • c) Incorporate into World Class Commissioning (recommendation 12) • d) Local authorities to review assessment procedures and funding packages (recommendation 13)

28. Recommendations on local implementation This workshop is covering the recommendations specifically about the following issues: • A local implementation process (recommendation 19): • Leadership by Primary Care Trusts and Local Authorities of a joint audit of services, systems and processes across health and social care; • Joint action planning • Work with NHS, LA, third and independent sector providers • Agreement of the local resource consequences (links with the Quality and Productivity challenge and parallel processes in social care); • Involvement of members of the public; • Use the local scrutiny processes; • Build on existing approaches to implementing equalities and quality improvement but recognise that the age provisions in the Bill are a new requirement • The role of tools such as Equality Impact Assessments (recommendation 21) • A pack of resources, including good practice material, and whether there should be designated national centres of expertise (recommendation 20) • Producing an age-specific dataset to support the resource pack (recommendation 24) • Developing a joint assurance process for social care and health to demonstrate progress (including links to the Equality and Diversity Council) (recommendation 22)

29. Purpose of the resource pack The resource pack is designed to support local authorities and NHS organisations in preparing for the legislation. It is being co-produced with national input and two local communities: 1. Its use is entirely optional and localities are free to adapt it to suit their local purposes 2. It aims to provide local insight that helps generate an action plan and not for assessment or performance management. 3. It seeks to be proportionate recognising that this is one task among many over the next few years. 4. It links into existing work programmes wherever possible. 5. It is designed to involve range of partners and patient /service user representatives in the process.

30. Component parts of the resource pack An audit guide to undertake a local “gap analysis” of the current position – led by the National Development Team for Inclusion Indicator set to inform “gap analysis” – work from University Of West of England Good practice guide for the NHS to help organisations address age discrimination and promote age equality – led by Ros Levenson and colleagues including HtA/AC • Illustrative practice guide and • training materials for social care • led by the Social Care Institute • for Excellence

31. Group Work on preparing for 2012 • Who needs to be involved in preparing for the implementation of the new duty to promote equality and the ban on age discrimination? • What are the key milestones and tasks that need to be undertaken locally? • What should be done by individual organisations and what should be done across the local health and social care system? • What is the role for the DH, SHA, the Government Office, the EHRC and the CQC?

32. Local Self Assessment Tool The Achieving Age Equality (AAE) toolkit will be web enabled and have 6 sections Home Definitions Preparing for the audit Undertaking the audit Outcomes & next steps Help & resources

33. Building Your Local Picture of Age Equality Organisational & System Readiness Services & Settings Five domains covering organisational and whole system working: Self assess current position using red/amber/green ratings for 3 or 4 dimensions within each domain Three categories of services and settings: using a combination of national comparative data on the different levels of service and local data and judgement, self assess 3 or 4 specific services within each category.

34. (a) Organisational & System Readiness • Commissioning and service development • Knowing your local population; resource allocation & distribution; patterns of provision; procurement & contracting; partnership/joint working; integration of services; personalisation • Leadership and managing change • Developing a shared vision; achieving cultural & structural change • Involvement & participation of older people • Ladder of participation; 7 principles of co-production; LINks & other fora • Workforce development and human resources • Employment profile; recruitment & induction of new staff; education & training; supervision and support; team vs lone working; involvement of older people in all of the above • Quality management and assurance systems • Local surveys of experience and satisfaction; percentage of hospital complaints primarily concerned with age discrimination ; local QM systems used and what this tells you about older people’s experiences and outcomes compared to/with other groups?

35. (b) Services and Settings • Acute care and treatment • CVD • Cancer • Emergency and urgent care • Planned and inpatient care These have been selected based on the literature reviews on age discrimination produced by the Centre for Policy on Ageing • Community based social and health care • Early intervention and prevention • Primary and community health services • Personalisation, care and support • End of life care For each service, look at national data, where available and local data to reach a judgement on its current position • Mental health • General older people’s services • Dementia • Depression

36. Guide for the NHS A) Legislative framework and Definitions: B) Checklist of key principles C) Leadership and motivation D) Joint working /co-production E) Ensuring high quality services F) Involving older people G) Access to primary care H) Developing a workforce to deliver age equal services I) Children and young adults • J) Issues for particular services • Foot care • Audiology • Falls • Continence • Dementia services • Mental health • End of life care • Admission and discharge from hospital • Cancer • CVD • Sexual health/HIV