Dame Carol Black Expert Adviser on Health and Work Department of Health, England

1. Royal Free Hospital Cancerkin Lecture Atrium , 19 March 2013 Wellbeing and Work: Are they compatible with chronic diseases ? Dame Carol Black Expert Adviser on Health and Work Department of Health, England Principal, Newnham College Cambridge

2. Work : its value Galen (129-200) “Employment is nature’s physician and is essential to human happiness.” • Work is a social determinant of health • Work is generally good for health – the two are inextricably linked. • Enabling people to be in productive work is a health issue • Work provides income: material well-being and participation in today’s society • Work meets important psychosocial needs in societies where employment is the norm • Employment and socio-economic status are the main drivers of social gradients in health • Work needs to be ‘good work’

3. For those with chronic disease or disability, Work ... • ... is (generally) therapeutic and can lead to better health outcomes • can help to promote recovery and rehabilitation • minimises the unwanted and harmful effects of long-term sickness absence • reduces the risk of chronic disability and long-term incapacity • reduces poverty and social exclusion • ... improves quality of life and well-being. You do not have to be 100% fit to be in work!

4. Unemployment • Long-term unemployment can lead to: • poorer physical health • poorer mental health • greater usage of medical services • poorer social integration • loss of worth and self- confidence • less monetary resources • trans-generational effects.

5. Lifespan, health, work and society The UK needs the maximum number of productive years from as many people as possible. Those not working depend on others. We need the ratio of earners and wealth-generators to dependants (children, pensioners, unemployed) to be as high as possible. Childhood Working life Retirement Being sufficiently healthy is a condition for work, and maximising healthy life as a proportion of total life is therefore a desirable goal for individuals and society. Prediction: the future UK population will be composed of longer survivors, with more chronic conditions. This is a challenge shared by many countries.

6. The vision We want to create a society where the positive links between work and health are recognised by all, where everyone aspires to a healthy and fulfilling working life, and where health conditions and disabilities are not a bar to enjoying the benefits of work. Improving health and work: changing lives UK Government Response to the Black Review, 2008 “ ” This vision crosses political parties and is shared across different Departments of state.

7. The UK journey create employment and workplaces which both protect and promote health, mental and physical enable people with disabilities and long-term conditions, especially mental health conditions, to stay close to the labour market reduce sickness absence, job loss, and flow on to welfare benefits support people to work to a later age ensure all concerned with the delivery of health understand that work is a determinant of health appoint a National Director for Health and Work for five years, to support, promote and deliver this strategic vision. In 2005 a cross-government strategy developed to :

8. Black Review (2008) • Challenge: “The economic costs of sickness absence and worklessness associated with working-age ill-health are over £100 billion per year – greater than the current annual budget for the National Health Service … Left unchecked it will diminish life in Britain.” • Factors that stood in the way • Culture, beliefs and attitudes • Inadequate systems • Work not a clinical outcome • Lack of OH support and Primary Care involvement • Little concern for the next generation of workers.

9. What prevents us from working The two most common reasons in many countries are : common mental health problems musculo-skeletal problems High prevalence across population Little or no objective disease or impairment Most episodes settle rapidly, though symptoms often persist or recur Essentially whole people, with what should be manageable health conditions Psychosocial factors are important : – managerial behaviour and leadership - organisation of work - absence of ‘good work’ Other important reasons: long-term conditions – mental and physical – e.g. cancer lack of education and/or skills deprivation, poverty, lack of jobs.

10. Chronic conditions and ability to work – an EU perspective • Work disability is recognised as a major economic and public health problem. • Large numbers of workers are leaving the EU labour market earlier than desirable due to disability resulting from chronic conditions. • In 2002, 45 million people aged 16 to 64 were living with a chronic condition or disability, which prevented them from fully taking part in society and the wider labour market. • Successful work retention involves a complex interplay of workplace factors, including the worker’s fears of returning to a difficult environment, and the healthcare system supporting timely and phased return to work at a pace suited to the individual. Cancer Survivors and Work. The Work Foundation, 2013

11. Chronic conditions and work • Chronic conditions are increasing – and patients surviving longer e.g. cardiovascular and respiratory conditions, diabetes, rheumatic diseases, and cancers. • They do not deny the possibility of fulfilling work or an extended working life. • They require: • good clinical care, Vocational Rehabilitation, well- informed work-conscious healthcare professionals • fully-informed patients, in control, co-creating health • flexibility and adaptation in the workplace. • Previously fatal diseases are becoming chronic. If managed effectively, disability can be minimised and disease progress stopped or delayed - thus extending working life and reducing the load on health and care services.

12. Long-term Conditions in the UK Working Age Population: 2030

13. Rheumatoid Arthritis and Work • 50% of UK adults with RA are of working age. • 75% are diagnosed when of working age • Work disability occurs rapidly among people with RA • 33% of people with RA will have stopped working within 2 years, and 40 to 45 % by five years. National Audit Office Report 2009 Public Accounts Select Committee 2010

14. RA: Early diagnosis & treatment crucial • Earlier diagnosis and appropriate treatment mean better retention in work. • Employees with RA average 40 days sick leave per year, but those in work who respond to treatment take only 16 days sick leave. • Increasing from 10% to 20% the number of people treated within 3 months of symptoms would increase NHS costs in England by £11 million over 5 years • BUT could result in £31 million gainfor the economy due to reduced sick leave and work-related disability. • National Audit Office Report 2009 • Public Accounts Select Committee 2010

15. Rheumatoid Arthritis and Work in UK Hospitals and GPs 56% of hospitals were aware of Gov’t’s ‘Access to Work’ scheme, but : - 33% of these did not give information about schemes to those with RA - only12% of GPs gave information about continuing in employment to those newly diagnosed - only 20% of those with RA considered they received sufficient information from their Rheumatology services about employment issues. The wider costs to the economy of sick leave and work-related disability (lost employment) amount to an estimated £1.8 bn per year. National Audit Office. Services for People with Rheumatoid Arthritis, July 2009

16. Mental Health and chronic conditions ‘Body and Soul’ report (2010) explores the connection between physical and mental health conditions, and the impact these conditions have on productivity and work participation. Findings include: • The rate of mental health conditions is higher among those with a chronic physical health condition. • Researchers understand that physical health influences mental health and mental health influences physical health • For example, about 25% of people with arthritis report a co-morbid mental health condition. The Work Foundation 2010

17. Inflammatory Bowel Disease and Work • IBD affects approx. 180,000 UK people, frequently younger people including adolescents with impact on both education and employment. • Study estimates total costs of Crohn’s Disease (including lost productivity, healthcare costs etc) to be in excess of £300m per annum. • Prevents people from reaching their full career potential, and impacts earning opportunities • Work productivity with IBD could be as much as 20% lower than among fit employees, which translates to over 40 days of reduced productivity or absence from work per employee per year. (Dean et al 2003) • These outcomes are largely avoidable and most people with IBD can continue active and productive working lives with : • early diagnosis • appropriate treatment or therapy • enlightened interventions by GPs and employers

18. Cancer and work 109,000 working-age people are diagnosed with cancer in the UK each year 775,000 people of working age in the UK have had a cancer diagnosis Long term cancer survivors are 1.4 times more likely to be unemployed yet… … research shows that cancer patients want to work One in four long term cancer survivors say their cancer is preventing them working in their preferred occupation The average fall in household income for a family of working age with cancer is 50%. . . . . and 17% lose their home. Cancer is becoming a long term conditionmost frequently found from mid-life onwards. MacMillan Cancer Support

19. The number of people living with cancer is set to double by 2030 • Predicted numbers: • 2 million • 3 million • 4 million • (with over 2.5 m diagnosed over five years earlier) Source: Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202.

20. Cancer Survivors and Work – what do we already know? • The annual cost to the NHS of treating cancer in 2008 was £5.98 billion, while work participation losses from people disabled by cancer and unable to return to work were £7.66 billion. • Employed cancer survivors contribute £16 bn per year to UK economy . • A meta-analysis of 36 studies: in comparison to healthy individuals, cancer survivors have a 37% higher chance of unemployment after cancer and a threefold risk of receiving a work disability pension. • Cancer type, severity of treatment, treatment-related symptoms, female gender and increased age all affect capability for work. • Lower employment is related to work environment, managerial, employer and social support, and accessibility of occupational health.

21. National Cancer Survivorship Initiative - Results • Pilots showed that the health-related quality of life after a Vocational Rehabilitation intervention improved across all areas. • The average cost of a VR intervention per patient was £850, with a range of £380 to £1,500. • If an individual is supported back to work, the resulting tax returns will, on average, outweigh the intervention cost within three months. • Thus if a person with cancer returns to work for 12 weeks that they otherwise might not have worked, the intervention could be argued to have paid for itself. • Canada and Australia have also shown VR interventions to be effective.

22. Cancer and Work :National Cancer Survivorship Initiative Vocational Rehabilitation, seven pilot sites: (testeda model of VR with information provided, face-to-face support, access to learning programmes, and a case manager) Five key outputs: New robust model of work-support interventions Strategic framework for planning & delivery of work-support services An outline of specialist Vocational Rehabilitation interventions A competency framework to underpin delivery of specialist cancer VR Raising the profile of work-support and VR services, through the work of the pilot sites and the three interim evaluation reports. These findings are transferable to other chronic diseases. National Cancer Survivorship Initiative

23. National Cancer Survivorship Initiative : Health Professionals • Health professionals need to: • - raise work issues early • - recognise the risk factors ‘work flags’ • - respond effectively to patients’ queries • - revisit work issues during treatment. • Tailor information and advice to support self-management. • Support specialist Vocational Rehabilitation for people with complex problems. • Use protocols and procedures for effective liaison across organisations and local statutory/voluntary services to support cancer patients in work. National Cancer Survivorship Initiative

24. National Cancer Survivorship Initiative: Employers Employers should appreciate that patients want: To keep channels of communication open To be kept ‘in the loop’ while on sick leave To understand long-term effects of treatment, fatigue etc Cancer not to be stigmatised Negotiated return to work plan, before return Structured schedule to talk on return to work progress Reasonable adjustments in the workplace Flexibility about hours, tasks and responsibilities in the initial months after return to work Understanding of their rights under Equality Act 2010 Employer willing to meet health professionals who have been involved in employee’s vocational rehabilitation National Cancer Survivorship Initiative

25. NCSI Recovery Package

26. Vocational Rehabilitation and Work Support • Work Support : • Level 1: All patients of working age should be asked about work and receive information and signposting • Level 2: People with specific concerns or worries should be provided with resources to support self-management Vocational Rehabilitation • Level 3: A subset of people with more complex needs should be referred to a VR service for specialist support .

27. MAKING THE SHIFT

28. Health, Work and Well-being:the key players Health professionals (Primary and secondary care) Employers (Workplaces, Line managers, Human Resources) Employees (Patients) OH professionals (less than 15% of the global workforce has access) Government support essential

29. Assessment GP referral At 4 weeks Telephone/face-to-face assessment Identification of issues and recommendations Work related/ workplace adjustments Health-related Non-work/non-health related Intervention Improvement/ resolution Case management Health and Work Assessment and Advisory Service: - intended post Black/Frost Review Return to Work

30. Some of the Actions Required • Re-affirm employment as a clinical outcome for chronic conditions • The Clinical Commissioning Groups Outcome Indicator Set needs to have employment as an outcome. • Increase awareness of the Government’s Access to Work programme. • Implement the Health and Work Assessment and Advisory Service to benefit chronic conditions. • Continue to review the Work Capability Assessment. • Monitor the effectiveness of the Work Programme and other government back-to-work schemes. • Cancer Survivors and Work. The Work Foundation 2013

31. Final thoughts.... “If you keep on doing the same things and expect things to change, then that’s a definition of insanity.” Albert Einstein “The future has many names. For the weak it is unattainable. For the fearful it is unknown. For the bold it is opportunity.” Victor Hugo