Microsoft word - age discriminiation.doc


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 chacke[email protected] Yours faithfully Maggie Alexander Director of Policy, Education and Influencing Breakthrough Breast Cancer September 2009

Source: http://sta.geo.useconnect.co.uk/pdf/051%20Breast%20Cancer%20Breakthrough.pdf

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