Breast cancer can affect any woman regardless of age, race and disability. But research has shown that women with a learning disability are less likely to access breast screening, possibly delaying the early identification of lumps or changes to breast tissue according to a wide-range of research - Davies & Duff, 2001; Piachaud & Rohde, 1998; Djuretic et al, 1999. LDT investigates:
There appears to be no research relating to self-checking and how many women with learning disabilities are supported to engage in this. Advice from the NHS is clear that families, carers and supporters should be empowering women to perform these checks, and easy read documents are available to assist with this. But what about women who are unable to perform this check themselves? There appears to be no advice around doing examinations on behalf of people. Supporters and carers are in a dilemma regarding this sensitive issue – checking a person’s breast could be seen as abusive but not checking could be viewed as neglectful.
Is breast checking different to other aspects of intimate personal care?
It was not possible to locate mortality/diagnostic rates of breast cancer for women with a learning disability. However, research by Bittles et al in 2002 showed that life expectancy is 74, 67 and 58 years for those with mild, moderate and severe learning disabilities respectively. Life expectancy is predicted to continue to rise for people with and without a learning disability. This suggests that cancer rates among people with a learning disability would be expected to rise as the risk of developing cancer increases with age.
However, data produced by the Valuing People Support Team (2002) showed that women with learning disabilities are less likely to engage in breast cancer screening or receive invitations to mammography than the general population (33% – Davies & Duff, 2001; 10% – Piachaud & Rohde, 1998; 43% vs 57% – Djuretic et al, 1999). This means that many women with a learning disability are missing out on this life-saving health check, which could help to identify breast cancer at an early stage.
However, research has suggested that most breast lumps are identified in between screening by women themselves (Gøtzsche & Nielsen, 2005). Many people with a learning disability may also have a physical disability that can make self-examination difficult or, due to the nature of their disability, they may not understand how to perform a self-check or to identify any abnormalities arising from it.
What makes touching a woman’s breasts different to other aspects of intimate personal care?
Breast Cancer Care has developed Supporting People with Learning Disabilities to Take Care of Their Breasts: A guide for supporters (2010), an easy read leaflet for people with learning disabilities and for staff who support them. The leaflet provides information on how to support people to check their breasts and what to look for. However, when it comes to people who are unable to examine themselves it states that “only a doctor should physically examine the person’s breasts”.
Breast examination for those who are unable to consent is a difficult matter as, without consent and understanding about what it is being done, it could be construed as abuse or as acceptable behaviour that can be done by anyone – both of which are concerning. Touching a woman’s breasts without her consent could be considered illegal under Section 30 (2) (a) and (b) of the Sexual Offences Act (2003) ‘Sexual activity with a person with a mental disorder impeding choice’.
Advice from specialists
Guidance on how to support women with breast checking if they are physically unable to do it themselves is not readily available.
A specialist cancer nurse at the Macmillan Cancer Support helpline advised that staff should support people to be breast aware, which involves observing any changes in the breasts of the people they are supporting when conducting personal care – and only if they were already providing this form of intimate personal care. They do not give guidance to support staff to physically check people’s breasts. The nurse suggested that checks should be visual, not physical, if the woman was unable to do this herself.
The NHS cancer screening website also provided good guidance for people around screening and self-checking but not around supporting people with more complex needs to be breast aware.
The NHS guidance, Consent to Cancer Screening (2009), incorporates revisions and additional content in line with the Mental Capacity Act (2005). It discusses consent to breast screening but does not include guidance on consent to breast checking for people unable to do this for themselves.
Current work in this area
A member of Choice Support has been attending a working group regarding breast and testicular screening for people with learning disabilities, set up by a local strategic health facilitator and the public health commissioning manager. The group acknowledged that national guidance for providers/carers advocates visual checks only. However, this is not useful as usually by the time there are visual signs/symptoms then the potential cancer is already advanced.
The group has been discussing what support could be provided to people who are unable to physically carry out self-checks or understand what they are checking for. An NHS vulnerable adult rep is developing a protocol that will follow the legal framework and the five principles of the Mental Capacity Act (2005), and which will identify what training staff will require.
What is required to bridge this gap?
While guidance around breast checking for those who lack capacity may be available soon, what can providers do while they wait for it?
A clear process needs to be outlined for providers that considers the risk to the person and any previous history. Choice Support has developed a protocol for this [see box below].
Choice Support’s protocol for considering risk factors and previous history
Have there been any changes to the woman’s breasts?
If the woman is over 50 staff should be supporting her to visually examine her breasts to identify any changes outlined in Breast Cancer Care’ guidance (2010). If she is younger staff should also support the woman to do this as breast cancer can affect younger women, particularly if there is a family history of the disease.
Is there a family history of breast cancer?
Staff should ask family members (if possible and appropriate) if there is a history of breast cancer in the family. If so this can be shared with the person’ local GP or practice nurse.
Has the person experienced sexual abuse?
Staff should consider this, as if the person has been abused they may require additional support when being checked by the GP/nurse as it may re-awaken feelings regarding the abuse.
When were the woman’s breasts last checked by a medical professional?
If a person is unable to self-check it is advisable to request that their local GP or practice nurse manually checks the woman’ breasts for lumps, especially if there is a family history of breast cancer.
The Josephine Project
Choice Support has gone further to address this issue, contacting Them Wifies, a community arts organisation based in Newcastle-upon-Tyne, which owns and runs the Josephine Project. Josephine is a life-sized, three-dimensional, anatomically correct cloth puppet.
Them Wifies developed Choice Support’s own ‘Josephine’ and trained a number of people supported by Choice Support and members of staff to be ‘Josephine trainers’. Whether women have capacity or not they are invited to attend workshops, which are fun, creative and use drama to explore sensitive issues like breast screening. Since the introduction of the Josephine Project Choice Support has seen a significant increase in the number of eligible woman accessing breast screening.
The NHS has failed to sufficiently consider people who lack capacity to self-check in their current guidance to providers/carers. Breast cancer charities have attempted to address this issue by promoting easy read information for people with learning disabilities and advocating visual checks to be completed by staff; but this does not properly address the concerns of many. The prospect of staff manually checking for people appears to be a taboo subject and has thus been placed on the ‘too difficult to deal with’ pile, which means that women who are already statistically more likely to die younger and experience health issues are missing the opportunity for early identification of breast cancer.
About the author
Claire Bates is a quality analyst at Choice Support.
Special thanks to Deborah Kitson at the Ann Craft Trust for her assistance with this article.
Bittles AH, Petterson BA, Sullivan SG, Hussain R, Glasson EJ & Montgomery PD (2002) The influence of intellectual disability on life expectancy. Journal of Gerontology: Medical sciences 57A M470–M472.
Breast Cancer Care (2010) Supporting People with Learning Disabilities to Take Care of Their Breasts: A guide (2nd ed). London: Breast Cancer Care.
Davies N & Duff M (2001) Breast cancer screening for older women with intellectual disability living in community group homes. Journal of Intellectual Disability Research 45 253–257.
Department for Education and Skills (2004) Sexual Offences Act 2003. LAC (2004) 17. London: Department for Education and Skills.
Department of Health (2005) Mental Capacity Act 2005. LAC (2006) 15. London: Department of Health.
Djuretic T, Laing-Morton T, Guy M & Gill M (1999) Concerted effort is needed to ensure these women use preventive services. British Medical Journal 318 536.
Emerson E & Baines S (2010) Health Inequalities and People with Learning Disabilities in the UK: 2010. Lancaster: Learning Disabilities Observatory.
Gøtzsche P & Nielsen M (2005) Screening for breast cancer with mammography. Cochrane Database Syst Rev 2006 Oct 18 (4).
NHS Cancer Screening Programmes (2009) Consent to Cancer Screening (2nd ed). Cancer Screening Series (4). Sheffield: NHS Cancer Screening Programmes.
Piachaud J & Rohde J (1998) Screening for breast cancer is necessary in patients with learning disability. British Medical Journal 316 (7149) 1979–1980.
This article is taken from Learning Disability Today - to subscribe visit www.learningdisabilitytoday.co.uk/learning-disability-today/.