Age Discrimination Consultation Responses Age Team Government Equalities Office 9th Floor, Eland House Bressendon Place London SW1E 5DU Dear Sir or Madam Breakthrough Breast Cancer’s response to the Equality Bill: Making it work Ending age discrimination in services and public functions Breakthrough Breast Cancer is a pioneering charity dedicated to the prevention, treatment and ultimate eradication of breast cancer. We fight on three fronts: research, campaigning and education. Our aim is to bring together the best minds and rally the support of all those whose lives have been, or may one day be, affected by the disease. The result will save lives and change futures – by removing the fear of breast cancer for good. Breast cancer is the most common form of cancer in the UK with nearly 46,000 women diagnosed with breast cancer each year. Breast cancer is thought to be caused by a combination of environmental, lifestyle and genetic factors, but age remains the greatest risk factor for people developing breast cancer. As women get older, the estimated risk of developing the condition increases from 1 in 14 up to the age of 69, to 1 in 10 up to the age of 79, with the estimated risk that 1 in 9 women will develop breast cancer at some point during their lifetime1. In the UK every year, around 15,000 women aged 70 and over are diagnosed with breast cancer which is nearly a third of the total of women diagnosed1. Breakthrough believes that age should not be a barrier to women in the UK when accessing the most appropriate screening, diagnostic and clinical services. The North West Cancer Intelligence Service (NWCIS) in Manchester has reported that as many as 15,000 people over 75 could be dying prematurely from all types of cancer each year in the UK (25th June 2009).This evidence, submitted to the National Cancer Intelligence Network reinforces the need for additional research to understand this issue and ensure that older people affected by cancer are able to access the most appropriate services and treatments. Breakthrough is currently undertaking research into the experiences of older people who receive treatment for breast cancer and of the health care professionals treating them, to further understand the experiences and attitudes to treating older breast cancer patients.
1 CancerStats, Breast cancer – UK, May 2009, Cancer Research UK
Breakthrough welcomes the Government Equalities Office (GEO) Equality Bill consultation on age discrimination in services and public functions. Our submission focuses on how age inequality may be present in the attitudes of healthcare professionals to older breast cancer patients and in the level of access older people have to breast cancer services and treatments. Our submission responds to question 24 “Do you have any other points or issues you wish to raise relating to age discrimination in the provision of goods, facilities, services and public functions?” How behaviours and culture contribute to age inequality Both published studies and investigations by the third sector suggest that healthcare professionals may be making decisions about the treatment of older breast cancer patients on the basis of the patient’s age, rather than objectively assessing their clinical needs2,3. Although there are a number of diagnostic tools in place to help health professionals when deciding how to proceed with treatment in older patients, (e.g. assessing their fitness to undergo surgery or chemotherapy) it is not clear how widely such tools are used and in what circumstances health professionals choose to employ them. As part of our Age Equality research, Breakthrough is conducting two surveys to canvas the views of healthcare professionals and patients and people affected by breast cancer. As part of the survey, healthcare professionals are being asked to review the assessment tools they currently employ and to comment on whether one standard assessment tool would significantly improve consistency of decision-making.
The National Service Framework (NSF) for Older People was introduced in 20014 and progress reviewed by the Healthcare Commission in 2006, with the views and experiences of older people obtained via 1,839 face-to-face interviews and more than 4,000 completed questionnaires. They found that 80% of older people surveyed felt that older people did not have an influence in planning health and social care services5. Furthermore, an evaluation of the NSF was carried out by the Department of Health6, and suggested that older people feel that although access to services may have improved since the introduction of the NSF, this has been at the expense of personalisation of care, for example in the perceived resistance of GPs to visit patients at home.
2 Turner, N.J., Haward, R.A., Mulley, G.P., and Selby, P.J. Cancer in old age- is it inadequately investigated and treated? British Medical Journal; 1999; 319: 309-19 3 Breast cancer and older women: the case for fair treatment?, event held in 2003 by Help the Aged and Cancer Research UK 4 Department of Health, National Service Framework for Older People (2001) 5 Healthcare Commission, Audit Commission, Commission for Social Care Inspection, Living well in later life: A review of progress against the National Service Framework for Older People (2006) page 32 6 Manthorpe J et al, Four years on: the impact of the National Service Framework for older people on the experiences, expectations and views of older people. Age and Ageing 2007; 36: 501–507 Differential access to services Age inequality in accessing screening services The NHS Breast Screening Programme (NHSBSP) currently invites women between the ages of 50 and 70 to attend routine breast screening appointments every three years. In 2007, the Cancer Reform Strategy committed to extending breast screening appointments to women aged 47-73 by 20127. Breakthrough welcomes this proposed extension. As previously stated, age remains the biggest risk factor for women developing breast cancer and this highlights the need for the most appropriate services and treatments being made available to older breast cancer patients. Although women over the age of 70 may request a screening appointment, Breakthrough’s Screening Saves Lives campaign found that over 90% of women in this age group have never requested their own screening appointment, with 28% thinking that they did not need to8. Additional research revealed that 88% of women over 70 had not discussed with their GP or healthcare professional their entitlement to continue to receive breast screening after the age of 709. In terms of increased risk, 97% of women over 70 did not realise that they were most at risk of developing breast cancer due to their age8 and more worryingly, 48% of respondents mistakenly believe that invitations to attend breast screening stops at 70 due to a woman’s risk of developing the disease decreasing after this age. 10 Breakthrough believe that there is a need to promote the continued entitlement to breast screening for those women who no longer receive routine invitations. Age inequality in accessing treatment There is a large amount of research to suggest that older women are less likely to receive the same treatments as younger breast cancer patients. Assessments may in some cases, be being made on the basis of the patient’s age, rather than their clinical need, and the review should consider why different treatment might be offered. In particular the following areas highlight differences in the diagnosis and treatment of older women: Access to diagnostic assessment NICE guidelines11 state that triple assessment, (an examination by a specialist doctor; a mammogram or ultrasound scan and a biopsy) should be offered in all cases of suspected breast cancer and there is good evidence to suggest that it can improve the speed and accuracy of diagnosis12. However, studies have shown that older breast
7 Department of Health, Cancer Reform Strategy (2007) 8 Breakthrough Breast Cancer press release, Shock Survey results leads to call for review of current breast screening system for women 70 & over (2006) 9 Breakthrough Breast Cancer press release, Leading breast cancer charity calls on GPs to help clear up widespread confusion and improve earlier diagnosis (September 2007) 10 Breakthrough Breast Cancer press release, Prima online survey reveals widespread confusion about breast cancer remains 11 National Institute for Health and Clinical Excellence. Improving Outcomes in Breast Cancer. 2002. 12 Breakthrough Breast Cancer. The Best Treatment: Your guide to breast cancer treatment in England and Wales. 2009
cancer patients are less likely than younger breast cancer patients to receive these standard assessments, with one study showing that women over 80 were five times less likely to have a triple assessment when compared to 60-65 year olds13. Without standard diagnostic testing and prognostic assessment, older patients may not be receiving the treatment most appropriate to their clinical needs. Access to surgery Various studies have shown that older breast cancer patients are less likely to receive standard surgery or, indeed, any surgery 14,15,16,17,18 with one study showing that the odds of not receiving surgery are 40 times higher in patients 80 and over19. However, surgery in women over the age of 70 years has been shown to extend life expectancy by three years and reduce the risk of dying by 10-15%20. Further research is required to determine the reasons behind this discrepancy between potential outcomes from surgery and access to surgery. In addition, there is evidence that older women often receive tamoxifen treatment alone and no surgery 21, 22. This would not be a standard treatment course for younger patients and may be considered as under-treatment of the condition. Further more, when surgery is offered to older patients they are more likely to have offered a mastectomy compared with breast conserving surgery18 possibly because the operation is quicker and therefore the patient is under anaesthetic for less time23. Anecdotal accounts also suggest that some health professionals erroneously believe that older women do not have the same self image issues as younger patients therefore conserving the breast is of less importance to them24.
13 Lavelle, K., Todd, C., Moran, A., Howell, A., et al. Non-standard management of breast cancer increases with age in the UK: a population based cohort of women > or = 65 years. British Journal of Cancer; 2007; 96(8): 1197-203 14 http://news.bbc.co.uk/1/hi/health/3223333.stm 15 Lavelle, K., Todd, C., Moran, A., Howell, A., et al. Non-standard management of breast cancer increases with age in the UK: a population based cohort of women > or = 65 years. British Journal of Cancer; 2007; 96(8): 1197-203 16 Lavelle, K., Moran, A., Howell, A., and Bundred, N. Older women with operable breast cancer are less likely to have surgery. British Journal of Surgery; 2007; 94(10): 1209-15 17 Turner, N.J., Haward, R.A., Mulley, G.P., and Selby, P.J. Cancer in old age- is it inadequately investigated and treated? British Medical Journal; 1999; 319: 309-19 18 Breast Cancer Clinical Outcome Measures (BCCOM) Project, Analysis of the management of symptomatic breast cancers diagnosed in 2004, 3rd Year Report (December 2007) 19 Lavelle, K., Todd, C., Moran, A., Howell, A., et al. Non-standard management of breast cancer increases with age in the UK: a population based cohort of women > or = 65 years. British Journal of Cancer; 2007; 96(8): 1197-203 20 http://findarticles.com/p/articles/mi_qn4158/is_20010710/ai_n14408737 21 Wyld, L. and Reed, M.W.R. The need for targeted research into breast cancer in the elderly. British Journal of Surgery; 2003; 90: 388-99 22 Lavelle, K., Todd, C., Moran, A., Howell, A., et al. Non-standard management of breast cancer increases with age in the UK: a population based cohort of women > or = 65 years. British Journal of Cancer; 2007; 96(8): 1197-203 23 Suggested as possibilities in discussions at the European Breast Cancer Conference, Berlin. 2008. 24 Discussed between health professionals at the European Breast Cancer Conference, Berlin. 2008. Access to adjuvant therapy Studies have shown that fewer older patients receive adjuvant therapy (including chemotherapy and radiotherapy) as part of their breast cancer treatment compared with their younger counterparts25,26,27,18. However, studies have found that age does not significantly affect patients’ decisions as to whether or not to accept treatment28,29. Older people are as likely to accept treatment as their younger counterparts. Breakthrough believes in the importance of providing the most appropriate services for older people after considered assessment and based on clinical need. Access to Information and Support Breakthrough encourages the GEO consultation to consider the barriers older people experience in accessing information, advice and advocacy, specifically regarding: awareness of the support available; accessing comprehensive services; getting practical help to act on the information and support provided to achieve a practical solution. The issue of access to information and support impacts on older breast cancer patients and the wider patient population. A study of what older people want from information, advice and advocacy services found that people wanted topic-based information as opposed to service-based information. In addition, continuity of contact was considered important to avoid having to communicate the facts of a person’s individual case to different personnel – to overcome this it was suggested that a “one-stop” information bank is developed that provides both information and support with follow-up visits to ensure that the support received had offered a practical solution30. Furthermore, the awareness of their rights in relation to healthcare is low among older people which may be a result of the limited efforts that have been made to promote these rights and of barriers to raising concerns (such as the need to retain working relationships with service providers and a lack of support). 31 To improve the level of services and treatments that older people have access to, changes to improve advocacy and information services are essential.
25 Litvak, D.A., Arora, R. Treatment of elderly breast cancer patients in a community hospital setting. Archives of Surgery; 2006; 141(12): 985-990 26 Lavelle, K., Todd, C., Moran, A., Howell, A., et al. Non-standard management of breast cancer increases with age in the UK: a population based cohort of women > or = 65 years. British Journal of Cancer; 2007; 96(8): 1197-203 27 Turner, N.J., Haward, R.A., Mulley, G.P., and Selby, P.J. Cancer in old age- is it inadequately investigated and treated? British Medical Journal; 1999; 319: 309-19 28 Brundage MD, et al, Trading treatment toxicity for survival in locally advanced non-small cell lung cancer. J Clin Oncol 1997; 15: 330-40. 29 Yelen S, Cella D, Leslie W, Age and Clinical Decision Making in Oncology Patients, J Natl Cancer Inst, 86:1766- 1770, 1994
30 Quinn A, Snowling A, Denicolo P, Older people’s perspectives: Devising information, advice and advocacy services (Jospeh Rowntree Foundation, 2003) 31 Joint Committee on Human Rights, The Human Rights of Older People in Healthcare:Eighteenth Report of the Session 2006-07 (The Stationery Office, 2007) page 73
Other activities to address age discrimination in health and social care Breakthrough Breast Cancer, Breast Cancer Campaign, and Breast Cancer Care are collaborating on a special roundtable event at each of the party political conferences this Autumn. The event will consider key aspects of inequalities experienced by people affected by breast cancer. This discussion will bring together key breast cancer experts and stakeholders, along with health and equality leads from each of the main political parties. The topics for discussion will include different aspects of breast cancer treatment and services, access to screening, services – including a focus on older age, treatments, and survivorship. It is anticipated that this event will lead to a greater understanding amongst parliamentarians, clinicians, and representatives from each of the three breast cancer charities on ways to address health inequalities experienced by people affected by breast cancer. A report from these events will be produced. Conclusion Older breast cancer patients often experience differences in their treatment and the underlying causes for this disparity require further investigation. To address this, Breakthrough believes there should be a focus on:
• ensuring the implementation of the breast screening age extension program; • promoting greater awareness of age as a risk factor in breast cancer; • ensuring access to information so that women who no longer receive invitations to
screening are aware they may request their own appointment;
• research into the diagnostic tools used by healthcare professionals; • research into the attitudes of healthcare professionals when treating older breast
Breakthrough encourages the review to consider the experiences of older people affected by breast cancer in accessing screening, services, and treatments as a useful case study when considering age equality in the wider health and social care setting. While Breakthrough welcomes the attention that the GEO is giving to the issue of age discrimination in services and public functions, we would welcome clarity on how this consultation will complement other initiatives that may also influence the level of protection for older breast cancer patients. In particular, we would welcome clarity on how this consultation and the Department of Health’s National review of age discrimination in health and social care will work together. We are especially interested in whether the Equality Bill consultation will consider the Department of Health review and vice versa, as both cover many of the same key issues. Breakthrough would also encourage the GEO to promote the importance of a timely introduction of increased access to the most appropriate health and social care services for older breast cancer patients. The timeline for these new initiatives is not clear, however Breakthrough hopes that there will not be significant delays in introducing or promoting such initiatives.
If you have any questions or would like to discuss any of the issues raised in this submission in more detail, then please do not hesitate to contact Dr Caroline Hacker, Policy Manager on 020 7025 2446 or at [email protected] Yours faithfully
Maggie Alexander Director of Policy, Education and Influencing Breakthrough Breast Cancer September 2009
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