Art & science
If you would like to contribute to the Art & science section, email [email protected] or @NSclinicalEd
The synthesis of art and science is lived by the nurse in the nursing act
Josephine G Paterson
Improving access to screening for people with learning disabilities Marriott A et al (2014) Improving access to screening for people with learning disabilities. Nursing Standard. 29, 9, 37-42. Date of submission: May 12 2014; date of acceptance: July 7 2014.
Abstract People with learning disabilities have poorer health than their non-disabled peers, and are less likely to access screening services than the general population. The National Development Team for Inclusion and the Norah Fry Research Centre developed a toolkit and guidance to improve uptake of five national (English) screening programmes (one of which is delivered through local programmes), based on work to improve access by people with learning disabilities in the south west peninsula of the UK. This article describes the findings in relation to the five English screening programmes and suggests ways to improve uptake of cancer screening by people with learning disabilities.
Authors Anna Marriott Research fellow, Norah Fry Research Centre, Bristol. Sue Turner Learning disability lead, The National Development Team for Inclusion, Bath. Alison Giraud-Saunders Associate, The National Development Team for Inclusion, Bath. Correspondence to: [email protected]
Keywords Cancer prevention, health inequalities, health promotion, intellectual disability, learning disability, learning disabilities, screening
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online For related articles visit the archive and search using the keywords above. Guidelines on writing for publication are available at: http://rcnpublishing.com/page/ns/about/author-guidelines
SEVERAL STUDIES HAVE reported low uptake of health promotion and healthcare screening activities by people with learning disabilities (Biswas et al 2005, Reynolds et al 2008, Osborn et al 2012). This is of concern, as people with learning disabilities have poorer health than their non-disabled peers, in part as a result of poor access to health services (Emerson et al 2012). Early epidemiological studies indicated a lower frequency of cancer among people with learning disabilities (Jancar and Jancar 1977). It is likely, however, that such findings reflect a reduced life expectancy and less effective health care for people with learning disabilities. More recent data suggest a comparable incidence of cancer in people who have learning disabilities with that of the general population (Patja et al 2001). There is some evidence to suggest a different pattern of malignancies in people with learning disabilities, with data indicating a much higher rate of gastrointestinal cancer (Cooke 1997, Emerson et al 2012). Some syndromes are particularly associated with certain cancers. Men with Down’s syndrome have significantly higher rates of testicular cancer, for example (Dieckmann et al 1997, Goldacre et al 2004). In contrast, cohort studies show that women with learning disabilities have a similar or lower risk of breast cancer than women in the general population (Sullivan et al 2004). It is possible this is an underestimation because of limited access to screening programmes, and it is expected that the incidence will rise as women with learning disabilities live longer. The Joint Health and Social Care Self-Assessment Framework 2013 (Glover and Christie 2014) has shown considerably lower participation in screening programmes by people with learning
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Art & science learning disabilities disabilities than by the population as a whole, although there are substantial differences between the different screening programmes. The lowest rate of uptake among people with learning disabilities was for bowel cancer screening; 25.8% of people with learning disabilities were screened compared with 39.4% of the total population. The greatest difference in uptake was for cervical screening; a 26.9% uptake in women with learning disabilities compared with a 70% uptake in the total population. The rate of uptake for breast screening was the highest among any screening type for people with learning disabilities; a 37.6% uptake in people with learning disabilities compared with 62.5% in the total population (Glover and Christie 2014).
Project context and aims Community learning disability teams and screening services had done considerable work to improve uptake locally, but good practice was not consistent in Somerset, Devon and Cornwall (the south west peninsula). Some problems with access related to the way in which some national programmes operated (Taggart et al 2011). The National Development Team for Inclusion and the Norah Fry Research Centre were commissioned by Cornwall Partners in Policymaking to improve access to five national (English) screening programmes, by developing a strategy and toolkit for the south west peninsula of the UK. The primary objectives of this project were to:
BOX 1 Factors affecting uptake of screening by people with learning disabilities Practical barriers include mobility issues as well as difficulties understanding standard literature and using appointment systems (McIlfatrick et al 2011). Communication barriers were identified by healthcare professionals as one of the most significant barriers to breast screening (McIlfatrick et al 2011). Attitude and knowledge of professionals, support services and family carers. Research suggests there is a need for improved practical support and training for staff and family carers (Gribben and Bell 2010, Hanna et al 2011). Attitude and knowledge of people with learning disabilities. They may not understand the importance of screening, while feelings of fear and anxiety can also be a barrier to participation (Lloyd and Coulson 2014). Concerns about the capacity of people with learning disabilities to consent to participate in screening programmes can be a barrier to participation (Broughton and Thomson 2000, McIlfatrick et al 2011). Accessible information and resources, and lack of knowledge of such resources. We identified accessible information relating to national cancer screening programmes, but many staff are unaware of the body of accessible literature (Taggart et al 2011). There is a need for research to evaluate the effectiveness of such information.
Scope current practice in the Cornwall, Devon, Plymouth and Torbay areas, ‘the peninsula’, with a less detailed review of relevant national evidence and practice elsewhere in south west England. Use this information to develop an evidence-based toolkit and strategy for improving access to bowel cancer, cervical, breast, abdominal aortic aneurysm (AAA) and diabetic retinopathy screening services by people with learning disabilities in the south west. Produce a final report and recommendations that could be used to inform the national debate on identifying people with learning disabilities in national cancer screening programmes (Turner et al 2013). This article describes our findings in relation to five English screening programmes, with particular reference to what specialist learning disability nurses, nurses working in screening services and primary care nurses can do to improve uptake of cancer screening by people with learning disabilities.
Access to screening services A literature search was conducted using the following databases: Cumulative Index to Nursing and Allied Health Literature (CINAHL), International Bibliography of the Social Sciences (IBBS), Social Sciences Citation Index (SSCI), Medline and Web of Science (formally Web of Knowledge). The search terms used were: learning difficulty, learning difficulties, learning disability, learning disabilities, intellectual disability, intellectual disabilities, AAA screening, breast screening, bowel screening, cancer screening, cervical screening, diabetic retinopathy screening, mammogram and smear test. The literature review identified several barriers affecting the uptake of screening services by people with learning disabilities (Box 1). The majority of the factors affecting uptake relate to the national NHS cervical and breast screening programmes; there is little research available about access to the national NHS bowel cancer, AAA and diabetic retinopathy screening programmes. There is a legal obligation under the Equality Act 2010 for services to make reasonable adjustments or modifications to ensure people with learning disabilities can access the service, as far as is reasonable, to the same standard as the general population. The provision of easy-read resources is an example of a reasonable adjustment for people with learning disabilities. We identified more than 50 accessible resources relating to the three cancer screening programmes, three resources relating to AAA screening, and ten resources relating to diabetic retinopathy screening.
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Reasonable adjustments should be personalised for individual patients, but services can also make changes to their approach or provision, to try to enable fair access and treatment for people irrespective of disability. There was a lack of robust evaluation of interventions to improve uptake, but the literature review did identify a variety of approaches that could improve participation in screening programmes (Box 2).
Issues common to all screening programmes Mental Capacity Act 2005
The five principles of the Mental Capacity Act 2005 are relevant to screening (Box 3). Healthcare professionals responsible for access to screening must assure themselves that ‘all practicable steps’ are taken to support a person with learning disabilities to make an informed choice about participation. We found many examples of ‘reasonable adjustments’ to support decision making, such as easy-read information, anatomically correct dolls, and individual contact and explanations. Further details about these are in the toolkit available at: www.ndti.org.uk/uploads/files/Screening_Services_ Strategy_Toolkit_final.pdf Some people do not have capacity to consent to a specific screening intervention and the practitioner responsible for carrying out the procedure must decide whether it is in the person’s best interests. In doing so the practitioner should consult other people who are close to the individual such as family or support workers, help the person to take part in the decision to whatever extent he or she is able, and keep a record of how the best interests’ decision was reached. It is important not to make assumptions about someone’s best interests simply on the basis of his or her condition or behaviour. People should not be excluded from initial screening because of assumptions about their ability to cope with any further investigations or treatment that might be needed. Withholding or preventing access to medical care or treatment could be construed as neglect. Where the test is non-invasive and painless, such as the initial screen for bowel cancer or AAA, it is likely to be in the patient’s best interests. For breast, diabetic retinopathy and cervical screening, people need to be able to tolerate some discomfort; it may be in the best interests of individuals who are initially non-compliant to be recalled at a later date, following further health promotion work and familiarisation support. Any assumptions about distress or inability to comply should be avoided. Removing a person from the screening list permanently (ceasing) should follow a full, documented best interests’ process.
BOX 2 Approaches to improve participation in screening programmes Education, training and support for professionals, support staff and family carers – evidence suggests that training is essential for all key people, including family carers, residential staff, GPs and radiographers (Gribben and Bell 2010, Hanna et al 2011, McIlfatrick et al 2011). Education, training and support for people with learning disabilities – careful preparation to help people understand the need for screening programmes and the processes involved can increase the likelihood of a successful screening test (Davies and Duff 2001, Hanna et al 2011). Partnership working – improved partnership working between community learning disability team nurses and primary care staff can help increase uptake of cervical screening by women with learning disabilities (Wood and Douglas 2007).
BOX 3 Principles of the Mental Capacity Act 2005 A person must be assumed to have capacity unless it has been clearly established that he or she lacks capacity regarding the specific decision under consideration at that point in time. A person is not to be treated as unable to make a decision unless all practicable steps to help him or her to do so have been taken without success. A person is not to be treated as unable to make a decision merely because he or she makes what is considered to be an unwise decision. An act done, or decision made, under the Mental Capacity Act for or on behalf of a person who lacks capacity must be done, or made, in his or her best interests. Before the act is done, or the decision is made, attention must be paid to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.
Information governance
Services are cautious about sharing personal information. However, sometimes staff are so concerned to protect confidentiality that important information does not get passed on and a person’s health is inadvertently endangered. The review, Information: To Share or Not to Share? The Information Governance Review (Caldicott 2013) sets out some helpful principles, including: ‘The duty to share information can be as important as the duty to protect patient confidentiality.’ Family carers and staff who are not members of regulated professions often need information about a person’s health to provide good support. This can be particularly important when someone lacks capacity to make decisions for themselves, about information sharing or about a particular health decision. For example, a woman with learning disabilities might have mammogram results that indicate a need for further investigations; her support workers might not enable her to have this follow up if they are not told or do not understand the importance. Pathways for people with learning disabilities should include information-sharing protocols
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Art & science learning disabilities to ensure that everyone supporting them has the information they need to support effective participation in screening and any follow up. Useful new guidance on confidentiality is provided by the Health and Social Care Information Centre (2013).
Specific issues for each programme Cervical screening
Implications for practice Robust joint working between primary care and learning disability services can enable appropriate reasonable adjustments to be put in place, so that women with learning disabilities can become familiar with cervical screening procedures. This is particularly important because of the sensitive and invasive nature of cervical screening.
The uptake of cervical screening by women with learning disabilities is low (Emerson et al 2012). Women with learning disabilities do not get easy-read invitation letters, reminder letters or results letters unless local systems are put in place to enable this and because the NHS call and recall system does not include information on who has learning disabilities. This creates an immediate barrier for women with learning disabilities because they are unlikely to be able to act on information they do not understand. Furthermore, women with learning disabilities are sometimes removed from the programme because of assumptions about sexual activity and/or history and ability to tolerate cervical screening, and once this has happened, the decision is rarely revisited. A small retrospective cohort study in the UK found that women with learning disabilities were significantly more likely to be removed from a cervical screening programme than women without learning disabilities, although the authors concluded that having a learning disability was not the sole reason for this (Reynolds et al 2008). Agreeing a local cervical screening pathway, which includes identification of people with learning disabilities and guidance about ‘ceasing’, is therefore an important first step in improving uptake. An example of a local pathway can be found in the toolkit (Turner et al 2013). There are many examples of reasonable adjustments that have been put in place and have improved uptake of cervical screening. In one region, the learning disability nurse uses easy-read information to educate women with learning disabilities about cervical screening, along with an anatomically correct rag doll. This has been found to be useful. Another example of good practice is given in Box 4.
Breast screening
BOX 4
BOX 5
Good practice example: cervical screening
Good practice example: breast screening
One NHS trust did some proactive work with 21 women who were overdue for their cervical screening tests. Some had capacity and chose not to have a screening test. Best interests’ meetings were held for those who lacked capacity. One woman had had a hysterectomy, so was not eligible. Five were supported to consent and had screening tests.
One woman attended a mobile breast screening unit with her parents, but became distressed. She was sent the breast screening service DVD and watched it in private with her sister to support her. She was offered a longer appointment time and staff were made aware that she might need extra support. She attended the unit and was able to have the mammogram.
There is evidence that women with learning disabilities are not well informed about breast cancer in the UK (Davies and Duff 2001, Truesdale-Kennedy et al 2011) and that uptake of breast screening is low (Emerson et al 2012). Some breast screening services are now asking practices to identify women with learning disabilities, and can ‘flag’ women with learning disabilities who are notified to them on the national system. They can note any reasonable adjustments needed such as sending easy-read literature or making an appointment at a suitable location for a woman who uses a wheelchair. Some women with learning disabilities do not have capacity to consent to mammography and are unable or unwilling to comply. Therefore, they cannot be screened. Efforts to enable a woman to comply should continue (Box 5) and she should be recalled if this is in her best interests. It is important for women to be breast aware, even if they are not participating in the screening programme. Family carers or support workers who assist a woman with personal care such as washing may also benefit from education about signs that should prompt an appointment for a check-up. Implications for practice Depending on your role, there will be a range of actions you can take to improve the uptake of breast screening by women with learning disabilities. These include: In primary care you could ensure that local health education initiatives include women with learning disabilities, and use practice registers to record consent to share information and audit coverage.
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In a breast screening service you could organise learning disability awareness training and support, offer accessible information and longer appointments, and notify the local learning disability service if a woman with learning disabilities does not attend or is recalled.
Bowel cancer screening
Self-assessment data show a low uptake of bowel cancer screening by people with learning disabilities (Glover and Christie 2014), but there is no clear research data on the rates. It is not possible to identify people with learning disabilities in the national screening programme and therefore send them information in accessible formats. The GP receives a letter 13 weeks after the initial invitation if an individual does not respond. At this point it is possible to identify people with learning disabilities who have not responded and put appropriate support in place if the practice has useful information about people with learning disabilities, and a good relationship with the local learning disability service. If blood is found in the stool sample, the local screening provider is notified and sends a standard appointment letter, since they will not know if the person has a learning disability. Even where communication is successful, the time frame for attending the screening appointment is understandably short – 14 days in total. This can present problems if reasonable adjustments need to be made. Liaison between learning disability and primary care services and the screening provider is therefore important to enable reasonable adjustments. Implications for practice To improve the uptake of bowel screening by people with learning difficulties, it is crucial that there are local liaison arrangements between screening providers and learning disability services, to check whether non-responders may have learning disabilities and to provide additional support when they do (Box 6). A good first step in this process is to ensure local bowel screening centres have the contact details of local learning disability services and acute liaison nurses. A regularly updated map showing where acute liaison nurses are based in England and their contact details is available at www.improvinghealthandlives.org.uk/ aln, but not all areas have acute liaison nurses.
Diabetic retinopathy
All patients with diabetes registered with a GP should be invited for annual retinopathy screening, unless they already have diabetic eye disease, in which case they would be seen by a specialist. There is no evidence to show that people with learning disabilities are excluded from screening,
and there are no national data on retinopathy screening uptake. The screening process takes 30-40 minutes and requires the person to tolerate eye drops, which can sting and affect vision for a few hours after the appointment. They also need to rest the chin on a chin rest and keep their eyes open so that four photographs of the eye can be taken. Implications for practice Close working with local learning disability services will be important to put reasonable adjustments, including desensitisation, in place (Box 7).
Abdominal aortic aneurysm screening
There is no national data about uptake of AAA screening by men with learning disabilities, but there is some local evidence to suggest that the uptake may be lower for them. Data for Torbay indicates that about 60% of eligible men with learning disabilities have attended screening, whereas the uptake is about 80% for people without learning disabilities. Men eligible for screening are identified through the GP register and sent a letter, so it is possible to identify men with learning disabilities on the register who become eligible. The attitude of some care home staff, who may not understand the importance of AAA screening, was identified as a local barrier to access.
BOX 6 Good practice examples: bowel screening Example 1: Representatives from bowel screening hubs are working with screening nurses from one trust and representatives from the Norah Fry Research Centre and the Improving Health and Lives: Learning Disabilities Observatory (now part of Public Health England) to develop guidance and training for hub staff on issues concerning people with learning disabilities and bowel screening. This guidance will make clear that even if people cannot give informed consent to the full pathway, including a colonoscopy, this does not mean they should not have an initial screening. Until further investigations are proved to be necessary, it is not appropriate to put reasonable adjustments in place to assist them. Example 2: The screening liaison nurse has worked to support individuals to prepare for their colonoscopy. The information about what food you can and cannot consume before this procedure is complicated. She has worked to help a person with learning disabilities plan his diet in advance and liaised with the cook at his day centre to enable this.
Box 7 Good practice example: diabetic retinopathy A primary care liaison nurse undertook desensitisation work with a woman who had diabetes and had not been able to cope with the diabetic retinopathy screening process. She visited her once per week over a three-month period. They started by looking at leaflets and information about what the screening involved. Gradually they got her to feel comfortable about having a torch shone in her eyes and then she was supported to practise holding her head still. Such desensitisation work can be time consuming but effective.
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Art & science learning disabilities Conclusion
Implications for practice Ensure that local awareness training takes place and includes local care home staff.
Implications for national screening programmes An important first step for national programmes to increase the uptake of screening programmes is better identification of people with learning disabilities. This would enable the provision of easy-read information and other reasonable adjustments that would assist individuals to participate in the programmes. Further work to determine the efficacy of specific reasonable adjustments should be a priority.
Although people with learning disabilities face significant barriers to accessing screening programmes, there are several ways to improve participation, as shown in the examples of good practice. It is essential to develop good local pathways to enable access to screening for those with learning disabilities, which link primary care, screening services and specialist learning disability services, alongside developing training and awareness for staff, people with learning disabilities, their family and carers. Services that are designed to be more accessible for people with learning disabilities can also improve service accessibility and quality for all NS
References Biswas M, Whalley H, Foster J, Friedman E, Deacon R (2005) Women with learning disability and uptake of screening: audit of screening uptake before and after one to one counselling. Journal of Public Health. 27, 4, 344-347. Broughton S, Thomson K (2000) Women with intellectual disabilities: risk behaviours and experiences of the cervical smear test. Journal of Advanced Nursing. 32, 4, 905-912. Caldicott F (2013) Information: To Share or Not to Share? The Information Governance Review, The Stationery Office, London. Cooke LB (1997) Cancer and learning disability. Journal of Intellectual Disability Research: JIDR. 41, 4, 312-316. Davies N, Duff M (2001) Breast cancer screening for older women with intellectual disability living in community group homes. Journal of Intellectual Disability Research: JIDR. 45, 3, 253-257. Dieckmann KP, Rube C, Henke RP (1997) Association of Down’s syndrome and testicular cancer. The Journal of Urology. 157, 5, 1701-1704. Emerson E, Baines S, Allerton L, Welch V (2012) Health Inequalities and People with Learning Disabilities in the UK: 2012. Improving Health
and Lives: Learning Disabilities Observatory, Cambridge. Glover G, Christie A (2014) Joint Health and Social Care Self-Assessment Framework 2013: Detailed Report on Number Questions. Public Health England, London. Goldacre MJ, Wotton CJ, Seagroatt V, Yeates D (2004) Cancers and immune related diseases associated with Down’s syndrome: a record linkage study. Archives of Disease in Childhood. 89, 1014-1017. Gribben K, Bell M (2010) Improving equality of access to cervical screening. Learning Disability Practice. 13, 7, 14-20. Hanna LM, Taggart L, Cousins W (2011) Cancer prevention and health promotion for people with intellectual disabilities: an exploratory study of staff knowledge. Journal of Intellectual Disability Research: JIDR. 55, 3, 281-291. Health and Social Care Information Centre (2013) A Guide to Confidentiality in Health and Social Care: Treating Confidential Information with Respect. www.hscic.gov.uk/media/12822/ Guide-to-confidentialityin-health-and-social-care/pdf/ HSCIC-guide-to-confidentiality. pdf (Last accessed: September 29 2014.)
Jancar MP, Jancar J (1977) Cancer and mental retardation. Bristol Medico-Chirugical Journal. 92, 341–342, 3-7. Lloyd JL, Coulson NS (2014) The role of learning disability nurses in promoting cervical screening uptake in women with intellectual disabilities: a qualitative study. Journal of Intellectual Disabilities. 18, 2, 129-145. McIlfatrick S, Taggart L, Truesdale-Kennedy M (2011) Supporting women with intellectual disabilities to access breast cancer screening: a healthcare professional perspective. European Journal of Cancer Care. 20, 3, 412-420. Osborn DP, Horsfall L, Hassiotis A, Petersen I, Walters K, Nazareth I (2012) Access to cancer screening in people with learning disabilities in the UK: cohort study in the health improvement network, a primary care research database. PLoS One. 7, 8, e43841.
Sullivan SG, Hussain R, Threlfall T, Bittles AH (2004) The incidence of cancer in people with intellectual disabilities. Cancer Causes & Control. 15, 10, 1021-1025. Taggart L, Truesdale-Kennedy M, McIlfatrick S (2011) The role of community nurses and residential staff in supporting women with intellectual disability to access breast screening services. Journal of Intellectual Disability Research: JIDR. 55, 1, 41-52. Truesdale-Kennedy M, Taggart L, McIlfatrick S (2011) Breast cancer knowledge among women with intellectual disabilities and their experiences of receiving breast mammography. Journal of Advanced Nursing. 67, 6, 1294-1304.
Patja K, Eero P, Iivanainen M (2001) Cancer incidence among people with intellectual disability. Journal of Intellectual Disability Research: JIDR. 45, 4, 300-307.
Turner S, Giraud-Saunders A, Marriott A (2013) Improving the Uptake of Screening Services by People with Learning Disabilities across the South West Peninsula: A Strategy and Toolkit. www. ndti.org.uk/uploads/files/ Screening_Services_Strategy_ Toolkit_final.pdf (Last accessed: September 29 2014.)
Reynolds F, Stanistreet D, Elton P (2008) Women with learning disabilities and access to cervical screening: retrospective cohort study using case control methods. BMC Public Health. 8, 30. doi:10.1186/1471-2458-8-30.
Wood R, Douglas M (2007) Cervical screening for women with learning disability: current practice and attitudes within primary care in Edinburgh. British Journal of Learning Disabilities. 35, 2, 84-92.
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If you would like to contribute to the Art & science section, email [email protected] or @NSclinicalEd
The synthesis of art and science is lived by the nurse in the nursing act
Josephine G Paterson
Improving access to screening for people with learning disabilities Marriott A et al (2014) Improving access to screening for people with learning disabilities. Nursing Standard. 29, 9, 37-42. Date of submission: May 12 2014; date of acceptance: July 7 2014.
Abstract People with learning disabilities have poorer health than their non-disabled peers, and are less likely to access screening services than the general population. The National Development Team for Inclusion and the Norah Fry Research Centre developed a toolkit and guidance to improve uptake of five national (English) screening programmes (one of which is delivered through local programmes), based on work to improve access by people with learning disabilities in the south west peninsula of the UK. This article describes the findings in relation to the five English screening programmes and suggests ways to improve uptake of cancer screening by people with learning disabilities.
Authors Anna Marriott Research fellow, Norah Fry Research Centre, Bristol. Sue Turner Learning disability lead, The National Development Team for Inclusion, Bath. Alison Giraud-Saunders Associate, The National Development Team for Inclusion, Bath. Correspondence to: [email protected]
Keywords Cancer prevention, health inequalities, health promotion, intellectual disability, learning disability, learning disabilities, screening
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online For related articles visit the archive and search using the keywords above. Guidelines on writing for publication are available at: http://rcnpublishing.com/page/ns/about/author-guidelines
SEVERAL STUDIES HAVE reported low uptake of health promotion and healthcare screening activities by people with learning disabilities (Biswas et al 2005, Reynolds et al 2008, Osborn et al 2012). This is of concern, as people with learning disabilities have poorer health than their non-disabled peers, in part as a result of poor access to health services (Emerson et al 2012). Early epidemiological studies indicated a lower frequency of cancer among people with learning disabilities (Jancar and Jancar 1977). It is likely, however, that such findings reflect a reduced life expectancy and less effective health care for people with learning disabilities. More recent data suggest a comparable incidence of cancer in people who have learning disabilities with that of the general population (Patja et al 2001). There is some evidence to suggest a different pattern of malignancies in people with learning disabilities, with data indicating a much higher rate of gastrointestinal cancer (Cooke 1997, Emerson et al 2012). Some syndromes are particularly associated with certain cancers. Men with Down’s syndrome have significantly higher rates of testicular cancer, for example (Dieckmann et al 1997, Goldacre et al 2004). In contrast, cohort studies show that women with learning disabilities have a similar or lower risk of breast cancer than women in the general population (Sullivan et al 2004). It is possible this is an underestimation because of limited access to screening programmes, and it is expected that the incidence will rise as women with learning disabilities live longer. The Joint Health and Social Care Self-Assessment Framework 2013 (Glover and Christie 2014) has shown considerably lower participation in screening programmes by people with learning
© NURSING / RCNbyPUBLISHING october 29No:: other vol 29 nowithout 9 :: 2014 37 Downloaded fromSTANDARD rcnpublishing.com ${individualUser.displayName} on Feb 19, 2015. For personal use only. uses permission. Copyright © 2015 RCN Publishing Ltd. All rights reserved.
Art & science learning disabilities disabilities than by the population as a whole, although there are substantial differences between the different screening programmes. The lowest rate of uptake among people with learning disabilities was for bowel cancer screening; 25.8% of people with learning disabilities were screened compared with 39.4% of the total population. The greatest difference in uptake was for cervical screening; a 26.9% uptake in women with learning disabilities compared with a 70% uptake in the total population. The rate of uptake for breast screening was the highest among any screening type for people with learning disabilities; a 37.6% uptake in people with learning disabilities compared with 62.5% in the total population (Glover and Christie 2014).
Project context and aims Community learning disability teams and screening services had done considerable work to improve uptake locally, but good practice was not consistent in Somerset, Devon and Cornwall (the south west peninsula). Some problems with access related to the way in which some national programmes operated (Taggart et al 2011). The National Development Team for Inclusion and the Norah Fry Research Centre were commissioned by Cornwall Partners in Policymaking to improve access to five national (English) screening programmes, by developing a strategy and toolkit for the south west peninsula of the UK. The primary objectives of this project were to:
BOX 1 Factors affecting uptake of screening by people with learning disabilities Practical barriers include mobility issues as well as difficulties understanding standard literature and using appointment systems (McIlfatrick et al 2011). Communication barriers were identified by healthcare professionals as one of the most significant barriers to breast screening (McIlfatrick et al 2011). Attitude and knowledge of professionals, support services and family carers. Research suggests there is a need for improved practical support and training for staff and family carers (Gribben and Bell 2010, Hanna et al 2011). Attitude and knowledge of people with learning disabilities. They may not understand the importance of screening, while feelings of fear and anxiety can also be a barrier to participation (Lloyd and Coulson 2014). Concerns about the capacity of people with learning disabilities to consent to participate in screening programmes can be a barrier to participation (Broughton and Thomson 2000, McIlfatrick et al 2011). Accessible information and resources, and lack of knowledge of such resources. We identified accessible information relating to national cancer screening programmes, but many staff are unaware of the body of accessible literature (Taggart et al 2011). There is a need for research to evaluate the effectiveness of such information.
Scope current practice in the Cornwall, Devon, Plymouth and Torbay areas, ‘the peninsula’, with a less detailed review of relevant national evidence and practice elsewhere in south west England. Use this information to develop an evidence-based toolkit and strategy for improving access to bowel cancer, cervical, breast, abdominal aortic aneurysm (AAA) and diabetic retinopathy screening services by people with learning disabilities in the south west. Produce a final report and recommendations that could be used to inform the national debate on identifying people with learning disabilities in national cancer screening programmes (Turner et al 2013). This article describes our findings in relation to five English screening programmes, with particular reference to what specialist learning disability nurses, nurses working in screening services and primary care nurses can do to improve uptake of cancer screening by people with learning disabilities.
Access to screening services A literature search was conducted using the following databases: Cumulative Index to Nursing and Allied Health Literature (CINAHL), International Bibliography of the Social Sciences (IBBS), Social Sciences Citation Index (SSCI), Medline and Web of Science (formally Web of Knowledge). The search terms used were: learning difficulty, learning difficulties, learning disability, learning disabilities, intellectual disability, intellectual disabilities, AAA screening, breast screening, bowel screening, cancer screening, cervical screening, diabetic retinopathy screening, mammogram and smear test. The literature review identified several barriers affecting the uptake of screening services by people with learning disabilities (Box 1). The majority of the factors affecting uptake relate to the national NHS cervical and breast screening programmes; there is little research available about access to the national NHS bowel cancer, AAA and diabetic retinopathy screening programmes. There is a legal obligation under the Equality Act 2010 for services to make reasonable adjustments or modifications to ensure people with learning disabilities can access the service, as far as is reasonable, to the same standard as the general population. The provision of easy-read resources is an example of a reasonable adjustment for people with learning disabilities. We identified more than 50 accessible resources relating to the three cancer screening programmes, three resources relating to AAA screening, and ten resources relating to diabetic retinopathy screening.
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Reasonable adjustments should be personalised for individual patients, but services can also make changes to their approach or provision, to try to enable fair access and treatment for people irrespective of disability. There was a lack of robust evaluation of interventions to improve uptake, but the literature review did identify a variety of approaches that could improve participation in screening programmes (Box 2).
Issues common to all screening programmes Mental Capacity Act 2005
The five principles of the Mental Capacity Act 2005 are relevant to screening (Box 3). Healthcare professionals responsible for access to screening must assure themselves that ‘all practicable steps’ are taken to support a person with learning disabilities to make an informed choice about participation. We found many examples of ‘reasonable adjustments’ to support decision making, such as easy-read information, anatomically correct dolls, and individual contact and explanations. Further details about these are in the toolkit available at: www.ndti.org.uk/uploads/files/Screening_Services_ Strategy_Toolkit_final.pdf Some people do not have capacity to consent to a specific screening intervention and the practitioner responsible for carrying out the procedure must decide whether it is in the person’s best interests. In doing so the practitioner should consult other people who are close to the individual such as family or support workers, help the person to take part in the decision to whatever extent he or she is able, and keep a record of how the best interests’ decision was reached. It is important not to make assumptions about someone’s best interests simply on the basis of his or her condition or behaviour. People should not be excluded from initial screening because of assumptions about their ability to cope with any further investigations or treatment that might be needed. Withholding or preventing access to medical care or treatment could be construed as neglect. Where the test is non-invasive and painless, such as the initial screen for bowel cancer or AAA, it is likely to be in the patient’s best interests. For breast, diabetic retinopathy and cervical screening, people need to be able to tolerate some discomfort; it may be in the best interests of individuals who are initially non-compliant to be recalled at a later date, following further health promotion work and familiarisation support. Any assumptions about distress or inability to comply should be avoided. Removing a person from the screening list permanently (ceasing) should follow a full, documented best interests’ process.
BOX 2 Approaches to improve participation in screening programmes Education, training and support for professionals, support staff and family carers – evidence suggests that training is essential for all key people, including family carers, residential staff, GPs and radiographers (Gribben and Bell 2010, Hanna et al 2011, McIlfatrick et al 2011). Education, training and support for people with learning disabilities – careful preparation to help people understand the need for screening programmes and the processes involved can increase the likelihood of a successful screening test (Davies and Duff 2001, Hanna et al 2011). Partnership working – improved partnership working between community learning disability team nurses and primary care staff can help increase uptake of cervical screening by women with learning disabilities (Wood and Douglas 2007).
BOX 3 Principles of the Mental Capacity Act 2005 A person must be assumed to have capacity unless it has been clearly established that he or she lacks capacity regarding the specific decision under consideration at that point in time. A person is not to be treated as unable to make a decision unless all practicable steps to help him or her to do so have been taken without success. A person is not to be treated as unable to make a decision merely because he or she makes what is considered to be an unwise decision. An act done, or decision made, under the Mental Capacity Act for or on behalf of a person who lacks capacity must be done, or made, in his or her best interests. Before the act is done, or the decision is made, attention must be paid to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.
Information governance
Services are cautious about sharing personal information. However, sometimes staff are so concerned to protect confidentiality that important information does not get passed on and a person’s health is inadvertently endangered. The review, Information: To Share or Not to Share? The Information Governance Review (Caldicott 2013) sets out some helpful principles, including: ‘The duty to share information can be as important as the duty to protect patient confidentiality.’ Family carers and staff who are not members of regulated professions often need information about a person’s health to provide good support. This can be particularly important when someone lacks capacity to make decisions for themselves, about information sharing or about a particular health decision. For example, a woman with learning disabilities might have mammogram results that indicate a need for further investigations; her support workers might not enable her to have this follow up if they are not told or do not understand the importance. Pathways for people with learning disabilities should include information-sharing protocols
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Art & science learning disabilities to ensure that everyone supporting them has the information they need to support effective participation in screening and any follow up. Useful new guidance on confidentiality is provided by the Health and Social Care Information Centre (2013).
Specific issues for each programme Cervical screening
Implications for practice Robust joint working between primary care and learning disability services can enable appropriate reasonable adjustments to be put in place, so that women with learning disabilities can become familiar with cervical screening procedures. This is particularly important because of the sensitive and invasive nature of cervical screening.
The uptake of cervical screening by women with learning disabilities is low (Emerson et al 2012). Women with learning disabilities do not get easy-read invitation letters, reminder letters or results letters unless local systems are put in place to enable this and because the NHS call and recall system does not include information on who has learning disabilities. This creates an immediate barrier for women with learning disabilities because they are unlikely to be able to act on information they do not understand. Furthermore, women with learning disabilities are sometimes removed from the programme because of assumptions about sexual activity and/or history and ability to tolerate cervical screening, and once this has happened, the decision is rarely revisited. A small retrospective cohort study in the UK found that women with learning disabilities were significantly more likely to be removed from a cervical screening programme than women without learning disabilities, although the authors concluded that having a learning disability was not the sole reason for this (Reynolds et al 2008). Agreeing a local cervical screening pathway, which includes identification of people with learning disabilities and guidance about ‘ceasing’, is therefore an important first step in improving uptake. An example of a local pathway can be found in the toolkit (Turner et al 2013). There are many examples of reasonable adjustments that have been put in place and have improved uptake of cervical screening. In one region, the learning disability nurse uses easy-read information to educate women with learning disabilities about cervical screening, along with an anatomically correct rag doll. This has been found to be useful. Another example of good practice is given in Box 4.
Breast screening
BOX 4
BOX 5
Good practice example: cervical screening
Good practice example: breast screening
One NHS trust did some proactive work with 21 women who were overdue for their cervical screening tests. Some had capacity and chose not to have a screening test. Best interests’ meetings were held for those who lacked capacity. One woman had had a hysterectomy, so was not eligible. Five were supported to consent and had screening tests.
One woman attended a mobile breast screening unit with her parents, but became distressed. She was sent the breast screening service DVD and watched it in private with her sister to support her. She was offered a longer appointment time and staff were made aware that she might need extra support. She attended the unit and was able to have the mammogram.
There is evidence that women with learning disabilities are not well informed about breast cancer in the UK (Davies and Duff 2001, Truesdale-Kennedy et al 2011) and that uptake of breast screening is low (Emerson et al 2012). Some breast screening services are now asking practices to identify women with learning disabilities, and can ‘flag’ women with learning disabilities who are notified to them on the national system. They can note any reasonable adjustments needed such as sending easy-read literature or making an appointment at a suitable location for a woman who uses a wheelchair. Some women with learning disabilities do not have capacity to consent to mammography and are unable or unwilling to comply. Therefore, they cannot be screened. Efforts to enable a woman to comply should continue (Box 5) and she should be recalled if this is in her best interests. It is important for women to be breast aware, even if they are not participating in the screening programme. Family carers or support workers who assist a woman with personal care such as washing may also benefit from education about signs that should prompt an appointment for a check-up. Implications for practice Depending on your role, there will be a range of actions you can take to improve the uptake of breast screening by women with learning disabilities. These include: In primary care you could ensure that local health education initiatives include women with learning disabilities, and use practice registers to record consent to share information and audit coverage.
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In a breast screening service you could organise learning disability awareness training and support, offer accessible information and longer appointments, and notify the local learning disability service if a woman with learning disabilities does not attend or is recalled.
Bowel cancer screening
Self-assessment data show a low uptake of bowel cancer screening by people with learning disabilities (Glover and Christie 2014), but there is no clear research data on the rates. It is not possible to identify people with learning disabilities in the national screening programme and therefore send them information in accessible formats. The GP receives a letter 13 weeks after the initial invitation if an individual does not respond. At this point it is possible to identify people with learning disabilities who have not responded and put appropriate support in place if the practice has useful information about people with learning disabilities, and a good relationship with the local learning disability service. If blood is found in the stool sample, the local screening provider is notified and sends a standard appointment letter, since they will not know if the person has a learning disability. Even where communication is successful, the time frame for attending the screening appointment is understandably short – 14 days in total. This can present problems if reasonable adjustments need to be made. Liaison between learning disability and primary care services and the screening provider is therefore important to enable reasonable adjustments. Implications for practice To improve the uptake of bowel screening by people with learning difficulties, it is crucial that there are local liaison arrangements between screening providers and learning disability services, to check whether non-responders may have learning disabilities and to provide additional support when they do (Box 6). A good first step in this process is to ensure local bowel screening centres have the contact details of local learning disability services and acute liaison nurses. A regularly updated map showing where acute liaison nurses are based in England and their contact details is available at www.improvinghealthandlives.org.uk/ aln, but not all areas have acute liaison nurses.
Diabetic retinopathy
All patients with diabetes registered with a GP should be invited for annual retinopathy screening, unless they already have diabetic eye disease, in which case they would be seen by a specialist. There is no evidence to show that people with learning disabilities are excluded from screening,
and there are no national data on retinopathy screening uptake. The screening process takes 30-40 minutes and requires the person to tolerate eye drops, which can sting and affect vision for a few hours after the appointment. They also need to rest the chin on a chin rest and keep their eyes open so that four photographs of the eye can be taken. Implications for practice Close working with local learning disability services will be important to put reasonable adjustments, including desensitisation, in place (Box 7).
Abdominal aortic aneurysm screening
There is no national data about uptake of AAA screening by men with learning disabilities, but there is some local evidence to suggest that the uptake may be lower for them. Data for Torbay indicates that about 60% of eligible men with learning disabilities have attended screening, whereas the uptake is about 80% for people without learning disabilities. Men eligible for screening are identified through the GP register and sent a letter, so it is possible to identify men with learning disabilities on the register who become eligible. The attitude of some care home staff, who may not understand the importance of AAA screening, was identified as a local barrier to access.
BOX 6 Good practice examples: bowel screening Example 1: Representatives from bowel screening hubs are working with screening nurses from one trust and representatives from the Norah Fry Research Centre and the Improving Health and Lives: Learning Disabilities Observatory (now part of Public Health England) to develop guidance and training for hub staff on issues concerning people with learning disabilities and bowel screening. This guidance will make clear that even if people cannot give informed consent to the full pathway, including a colonoscopy, this does not mean they should not have an initial screening. Until further investigations are proved to be necessary, it is not appropriate to put reasonable adjustments in place to assist them. Example 2: The screening liaison nurse has worked to support individuals to prepare for their colonoscopy. The information about what food you can and cannot consume before this procedure is complicated. She has worked to help a person with learning disabilities plan his diet in advance and liaised with the cook at his day centre to enable this.
Box 7 Good practice example: diabetic retinopathy A primary care liaison nurse undertook desensitisation work with a woman who had diabetes and had not been able to cope with the diabetic retinopathy screening process. She visited her once per week over a three-month period. They started by looking at leaflets and information about what the screening involved. Gradually they got her to feel comfortable about having a torch shone in her eyes and then she was supported to practise holding her head still. Such desensitisation work can be time consuming but effective.
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Art & science learning disabilities Conclusion
Implications for practice Ensure that local awareness training takes place and includes local care home staff.
Implications for national screening programmes An important first step for national programmes to increase the uptake of screening programmes is better identification of people with learning disabilities. This would enable the provision of easy-read information and other reasonable adjustments that would assist individuals to participate in the programmes. Further work to determine the efficacy of specific reasonable adjustments should be a priority.
Although people with learning disabilities face significant barriers to accessing screening programmes, there are several ways to improve participation, as shown in the examples of good practice. It is essential to develop good local pathways to enable access to screening for those with learning disabilities, which link primary care, screening services and specialist learning disability services, alongside developing training and awareness for staff, people with learning disabilities, their family and carers. Services that are designed to be more accessible for people with learning disabilities can also improve service accessibility and quality for all NS
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