p u b l i c h e a l t h 1 2 9 ( 2 0 1 5 ) 9 1 e9 3
Available online at www.sciencedirect.com
Public Health journal homepage: www.elsevier.com/puhe
Guest Editorial
It's indescribable the emotion you [go] through when someone tells you you're going to be blind…having previously been someone who'd travelled the world, very independent, very confident it's life changing. It's something people say easily, oh that was life changing. You're going to lose your sight that's life changing but it doesn't really sum it all up. Sarah, 42 Being told you're going to lose sight…it's catastrophic. I left hospital there was no follow up by anyone what so ever…they just abandoned me completely… With total sight loss you were not able to drive therefore had to give up your job and then you have no income coming in, so all this a constant worry. You're fighting shy of social situations because you can't see people… Your life expectancy of what you enjoy diminishes gradually, gradually until you just go into depression. Keith, 78 This is how many people with sight loss describe the experience of losing their sight and why RNIB, as a membership organisation, ensures that the circumstances and experiences of blind and partially sighted people and those at risk of sight loss underpins everything we do. It is part of our foundation and fuels our ambition to make every day better for everyone affected by sight loss. So we are delighted to edit this special issue of Public Health. Worldwide about 285 million people are living with visual impairment that affects their daily life. An astonishing 80% of this sight loss is preventable.1 The massive burden of preventable sight loss is not only an issue in low and middle income countries. In the UK almost two million people are living with significant sight loss. Crucially, an estimated 50% of this sight loss is preventable with the early detection and treatment of conditions like glaucoma and diabetic eye disease, and by addressing refractive error through the provision of the correct spectacles.2 There is a worldwide move to tackle preventable sight loss and improve the lives of blind and partially sighted people. Vision 2020 is a global initiative to eliminate avoidable blindness, jointly developed by the World Health Organization and the International Agency for the Prevention of Blindness. A global action plan 2014e19: Towards Universal Eye Health was endorsed by the World Health Assembly in May 2013.3 The plan aims to encourage the provision of comprehensive eye care services, where eye health is integrated into health
systems and is accessible to all. All four governments in the UK support a UK wide Vision Strategy which seeks to encourage everyone to look after their sight, receive timely treatment and services and create a society in which people with sight loss can fully participate.4 In England there is a sight loss prevention indicator in the government's Public Health Outcomes Framework.5 This represents a major step forward and highlights the need to focus more attention on raising eye health up the public health agenda. This special issue focuses on eye health and sight loss within the UK and seeks to fuel the debate and draw attention to some of the key issues which require further exploration and investigation by the public health community and the wider sight loss sector. We have included articles that reflect the whole patient journey, from primary prevention and health promotion, through to secondary care and access to services for people living with sight loss. As laid out in the strategy for Public Health England 5 and reinforced in the NHS Five Year Forward View,6 tackling smoking in a major health priority. Smoking is a major risk factor for sight loss and an estimated 25% of advanced age related macular degeneration (AMD) is the result of smoking.7 Optometrists have in recent years begun to explore their potential public health role and John Lawrenson and colleagues report on a feasibility study, in which community optometrists are offered training to encourage the provision of smoking cessation advice to customers. It is staggering to think that in the UK the provision of the correct spectacles could prevent thousands of people living with sight loss. The factors that prevent people from getting spectacles are multifaceted and represent a significant challenge for eye care services. Aled Jones and Sian Biddyr explore this issue, examining the barriers people face in accessing primary eye care services, particularly people living in areas of high socio-economic deprivation. In the UK many people are entitled to free eye examinations, paid for through the National Health Service (NHS). However the dual diagnostic and commercial role of optometry in the UK acts a barrier to attendance at the optometrist, even among those eligible for a free eye examination.8 Darren Schickle and colleagues examine how NHS funding for eye examinations might be adjusted to remove this barrier,
92
p u b l i c h e a l t h 1 2 9 ( 2 0 1 5 ) 9 1 e9 3
enabling optometry to better meet the needs of the community. The unequal burden of eye disease and sight loss is a theme within this special issue. Abigail Knight and Robert Lindfield review the existing literature about socio-economic status and eye care, identifying a paucity of high quality research in this area, particularly in relation to primary eye care services. Jennifer Yip investigates the distribution of agerelated macular degeneration (AMD), area deprivation and individual socio-economic status. AMD is the most common cause of sight loss certification in the UK, accounting for nearly half the number of people certified blind or partially sighted in England and Wales each year.9 Catey Bunce and colleagues explore certifiable sight loss in more detail, in an examination of the variability in certifications in England due to AMD. Some populations are more at risk of sight loss than others. People with learning disabilities are ten times more likely to be living with sight loss than the general population.10 Julie-Anne Little and Kathryn Saunders investigate information about visual impairment on the statements for children with special educational needs in Northern Ireland. Their research indicates that for a significant proportion of children with a neurological impairment, concomitant visual impairment may go unrecognized and is subsequently not addressed by educational establishments. The reality for many patients is that they can easily be lost within the system when appointments are cancelled or clinicians feel they are no longer able to treat the eye condition.16 Only one in three hospitals in the UK has a sight loss adviser who is able to sign-post people who are blind or partially sighted to rehabilitation services and support.17 That is why RNIB are calling for every eye department in the UK to have access to a sight loss adviser and that these vital posts are permanently funded. Data collection and health surveillance related to sight loss and eye care services is also fragmented, making it very difficult to establish how much unmet need or inequity there is in service provision and outcomes. Efforts are underway to address these issues through the Vision 2020 Ophthalmic Public Health Committee and the sector response to the NHS Call to Action on Eye Health. The prolonged economic downturn in countries like the UK means that life is becoming harder for people with sight loss. Local authorities are providing fewer services for blind and partially sighted people. People living with sight loss are more likely to experience financial hardship; face barriers to participating in education and employment; face difficulties in access to travel and shopping; and have less choice about how they spend their free time.11 Inevitably this will have a negative impact on health and well-being. Cassandra Phoenix and colleagues examine health promotion issues relating to people living with sight loss specifically relating to physical activity. Phoenix et al. draw on their qualitative research about physical activity amongst people who have acquired sight loss in later life to highlight the need for policy change at a societal level, recommending creating more accessible and inclusive environments. This obviously requires financial investment which can be difficult to secure in the current economic climate, but illness resulting from inactivity also has
significant cost implications for both individuals and wider society. Expenditure directly on eye care services is just under 3% of the NHS budget.12e14 Often the failure to adequately address eye health has a deeper impact on the NHS budget, whether it is spend on falls resulting from poor vision or, for example, delayed rehabilitation for stroke patients because vision loss has not been assessed and treated. In addition, sight loss has a significant impact on downstream social care expenditure. Eye care services are under tremendous pressure, complex and fragmented.15 Ashraf Khan and colleagues describe how a pilot project in Fife, Scotland, designed to use digital technology to improve the efficiency and effectiveness of the patient pathway between community optometry and hospital eye care services has resulted in significant cost savings and influenced eye care services across Scotland. Sight loss in the UK is on the increase as a result of an aging population.2 There is much for public health professionals to do: not least improving data collection and utilizing existing data to ensure population eye health needs are identified and prioritized. There is a need to recognize at a national and local level that addressing eye health can have a significant impact on improving population health and a range of public health priorities. By working together and supporting our partners in the UK Vision Strategy to prioritize eye health, we can significantly reduce avoidable sight loss and ensure that where sight loss is not avoidable it is not inevitably catastrophic.
references
1. World Health Organisation. Visual impairment and blindness: fact sheet number 282. Geneva: World Health Organisation. Available online at: http://www.who.int/mediacentre/ factsheets/fs282/en/; 2014 [Last accessed December 2014]. 2. Access Economics. Future sight loss UK (1): the economic impact of partial sight and blindness in the UK adult population. Report for RNIB. London. Canberra: Access Economics; 2009. 3. World Health Organisation. Universal eye health: a global action plan 2014-2019. Geneva: World Health Organisation. Available online at: http://www.who.int/blindness/AP2014_19_English. pdf?ua¼1; 2013 [Last accessed December 2014]. 4. Vision 2020 UK. UK vision strategy 2013-2018. London: Vision 2020 UK. Available online at: http://www.vision2020uk.org. uk/ukvisionstrategy/landing_page.asp? section¼273§ionTitle¼AboutþtheþStrategy; 2013 [Last accessed December 2014]. 5. Department of Health. Public health outcomes framework in England, 2013e2016. In: Healthy lives, healthy people: improving outcomes and supporting transparency. London: Department of Health. Available online at: https://www.gov.uk/government/ publications/healthy-lives-healthy-people-improvingoutcomes-and-supporting-transparency; 2012 [Last accessed December 2014]. 6. NHS England. Five year forward view. London: NHS England. Available online at: http://www.england.nhs.uk/wp-content/ uploads/2014/10/5yfv-web.pdf; 2014 [Last accessed December 2014]. 7. Chakravarthy U, Augood C, Bentham GC, de Jong PT, Rahu M, Seland J, Soubrane G, Tomazzoli L, Topouzis F, Vingerling JR, Vioque J, Young IS, Fletcher AE. Cigarette smoking and age-
p u b l i c h e a l t h 1 2 9 ( 2 0 1 5 ) 9 1 e9 3
8.
9.
10.
11.
12.
13.
related macular degeneration in the EUREYE study. Ophthalmology 2007;114:1157e63. Leamon S, Hayden C, Lee H, Trudinger D, Appelbee E, Hurrell D-L, Richardson I. Improving access to optometry services for people at risk of preventable sight loss: a qualitative study in five UK locations. J Public Health 2014;36:667e73. RNIB. Number of adults and children certified with sight impairment and severe sight impairment in England and Wales: April 2012eMarch 2013. London: RNIB. Available online at: http://www.rnib.org.uk/knowledge-and-research-hub/ research-reports/general-research/certified-england-wales12-13; 2014 [Last accessed December 2014]. Emerson E, Robertson J. The estimated prevalence of visual impairment among people with learning disabilities in the UK. Report for RNIB and Seeability; 2011. Report for RNIB McManus S, Lord C. Circumstances of people with sight loss: secondary analysis of understanding society and the life opportunities survey. Available online at:, http://www.nhs. uk/NHSEngland/thenhs/about/Pages/overview.aspx; 2012 [Last accessed December 2014]. Department of Health. Programme budgeting benchmarking tool, 2012e13. Available online at: http://www.england.nhs. uk/wp-content/uploads/2014/02/pb-agg-pct-figs.xls [Last accessed December 2014]. Welsh Government. NHS expenditure programme budgets, 2012e13. Available online at: http://wales.gov.uk/statisticsand-research/nhs-expenditure-programme-budgets/? lang¼en [Last accessed December 2014].
93
14. ISD Scotland. Ophthalmic services, 2012e13. Available online at: http://www.isdscotland.org/Health-Topics/ Finance/Costs/File-Listings-2012.asp [Last accessed December 2014]. 15. Wormald R, Ratnarajan G. Equity and prevention of blindness with a disintegrated eye health service. Perspect Public Health 2013;133:7. 16. Report for RNIB Cymru Boyce T. Real patients coming to real harm. Available online at:, https://www.rnib.org.uk/realpatients-coming-real-harm; 2014 [Last accessed December 2014]. 17. RNIB Internal report RNIB. Coverage of UK hospitals by a sight loss advisor; 2014.
H. Lee* S. Leamon Royal National Institute of Blind People, United Kingdom *Corresponding author. E-mail address: [email protected] (H. Lee) Available online 13 February 2015 http://dx.doi.org/10.1016/j.puhe.2015.01.010 0033-3506/© 2015 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.
Available online at www.sciencedirect.com
Public Health journal homepage: www.elsevier.com/puhe
Guest Editorial
It's indescribable the emotion you [go] through when someone tells you you're going to be blind…having previously been someone who'd travelled the world, very independent, very confident it's life changing. It's something people say easily, oh that was life changing. You're going to lose your sight that's life changing but it doesn't really sum it all up. Sarah, 42 Being told you're going to lose sight…it's catastrophic. I left hospital there was no follow up by anyone what so ever…they just abandoned me completely… With total sight loss you were not able to drive therefore had to give up your job and then you have no income coming in, so all this a constant worry. You're fighting shy of social situations because you can't see people… Your life expectancy of what you enjoy diminishes gradually, gradually until you just go into depression. Keith, 78 This is how many people with sight loss describe the experience of losing their sight and why RNIB, as a membership organisation, ensures that the circumstances and experiences of blind and partially sighted people and those at risk of sight loss underpins everything we do. It is part of our foundation and fuels our ambition to make every day better for everyone affected by sight loss. So we are delighted to edit this special issue of Public Health. Worldwide about 285 million people are living with visual impairment that affects their daily life. An astonishing 80% of this sight loss is preventable.1 The massive burden of preventable sight loss is not only an issue in low and middle income countries. In the UK almost two million people are living with significant sight loss. Crucially, an estimated 50% of this sight loss is preventable with the early detection and treatment of conditions like glaucoma and diabetic eye disease, and by addressing refractive error through the provision of the correct spectacles.2 There is a worldwide move to tackle preventable sight loss and improve the lives of blind and partially sighted people. Vision 2020 is a global initiative to eliminate avoidable blindness, jointly developed by the World Health Organization and the International Agency for the Prevention of Blindness. A global action plan 2014e19: Towards Universal Eye Health was endorsed by the World Health Assembly in May 2013.3 The plan aims to encourage the provision of comprehensive eye care services, where eye health is integrated into health
systems and is accessible to all. All four governments in the UK support a UK wide Vision Strategy which seeks to encourage everyone to look after their sight, receive timely treatment and services and create a society in which people with sight loss can fully participate.4 In England there is a sight loss prevention indicator in the government's Public Health Outcomes Framework.5 This represents a major step forward and highlights the need to focus more attention on raising eye health up the public health agenda. This special issue focuses on eye health and sight loss within the UK and seeks to fuel the debate and draw attention to some of the key issues which require further exploration and investigation by the public health community and the wider sight loss sector. We have included articles that reflect the whole patient journey, from primary prevention and health promotion, through to secondary care and access to services for people living with sight loss. As laid out in the strategy for Public Health England 5 and reinforced in the NHS Five Year Forward View,6 tackling smoking in a major health priority. Smoking is a major risk factor for sight loss and an estimated 25% of advanced age related macular degeneration (AMD) is the result of smoking.7 Optometrists have in recent years begun to explore their potential public health role and John Lawrenson and colleagues report on a feasibility study, in which community optometrists are offered training to encourage the provision of smoking cessation advice to customers. It is staggering to think that in the UK the provision of the correct spectacles could prevent thousands of people living with sight loss. The factors that prevent people from getting spectacles are multifaceted and represent a significant challenge for eye care services. Aled Jones and Sian Biddyr explore this issue, examining the barriers people face in accessing primary eye care services, particularly people living in areas of high socio-economic deprivation. In the UK many people are entitled to free eye examinations, paid for through the National Health Service (NHS). However the dual diagnostic and commercial role of optometry in the UK acts a barrier to attendance at the optometrist, even among those eligible for a free eye examination.8 Darren Schickle and colleagues examine how NHS funding for eye examinations might be adjusted to remove this barrier,
92
p u b l i c h e a l t h 1 2 9 ( 2 0 1 5 ) 9 1 e9 3
enabling optometry to better meet the needs of the community. The unequal burden of eye disease and sight loss is a theme within this special issue. Abigail Knight and Robert Lindfield review the existing literature about socio-economic status and eye care, identifying a paucity of high quality research in this area, particularly in relation to primary eye care services. Jennifer Yip investigates the distribution of agerelated macular degeneration (AMD), area deprivation and individual socio-economic status. AMD is the most common cause of sight loss certification in the UK, accounting for nearly half the number of people certified blind or partially sighted in England and Wales each year.9 Catey Bunce and colleagues explore certifiable sight loss in more detail, in an examination of the variability in certifications in England due to AMD. Some populations are more at risk of sight loss than others. People with learning disabilities are ten times more likely to be living with sight loss than the general population.10 Julie-Anne Little and Kathryn Saunders investigate information about visual impairment on the statements for children with special educational needs in Northern Ireland. Their research indicates that for a significant proportion of children with a neurological impairment, concomitant visual impairment may go unrecognized and is subsequently not addressed by educational establishments. The reality for many patients is that they can easily be lost within the system when appointments are cancelled or clinicians feel they are no longer able to treat the eye condition.16 Only one in three hospitals in the UK has a sight loss adviser who is able to sign-post people who are blind or partially sighted to rehabilitation services and support.17 That is why RNIB are calling for every eye department in the UK to have access to a sight loss adviser and that these vital posts are permanently funded. Data collection and health surveillance related to sight loss and eye care services is also fragmented, making it very difficult to establish how much unmet need or inequity there is in service provision and outcomes. Efforts are underway to address these issues through the Vision 2020 Ophthalmic Public Health Committee and the sector response to the NHS Call to Action on Eye Health. The prolonged economic downturn in countries like the UK means that life is becoming harder for people with sight loss. Local authorities are providing fewer services for blind and partially sighted people. People living with sight loss are more likely to experience financial hardship; face barriers to participating in education and employment; face difficulties in access to travel and shopping; and have less choice about how they spend their free time.11 Inevitably this will have a negative impact on health and well-being. Cassandra Phoenix and colleagues examine health promotion issues relating to people living with sight loss specifically relating to physical activity. Phoenix et al. draw on their qualitative research about physical activity amongst people who have acquired sight loss in later life to highlight the need for policy change at a societal level, recommending creating more accessible and inclusive environments. This obviously requires financial investment which can be difficult to secure in the current economic climate, but illness resulting from inactivity also has
significant cost implications for both individuals and wider society. Expenditure directly on eye care services is just under 3% of the NHS budget.12e14 Often the failure to adequately address eye health has a deeper impact on the NHS budget, whether it is spend on falls resulting from poor vision or, for example, delayed rehabilitation for stroke patients because vision loss has not been assessed and treated. In addition, sight loss has a significant impact on downstream social care expenditure. Eye care services are under tremendous pressure, complex and fragmented.15 Ashraf Khan and colleagues describe how a pilot project in Fife, Scotland, designed to use digital technology to improve the efficiency and effectiveness of the patient pathway between community optometry and hospital eye care services has resulted in significant cost savings and influenced eye care services across Scotland. Sight loss in the UK is on the increase as a result of an aging population.2 There is much for public health professionals to do: not least improving data collection and utilizing existing data to ensure population eye health needs are identified and prioritized. There is a need to recognize at a national and local level that addressing eye health can have a significant impact on improving population health and a range of public health priorities. By working together and supporting our partners in the UK Vision Strategy to prioritize eye health, we can significantly reduce avoidable sight loss and ensure that where sight loss is not avoidable it is not inevitably catastrophic.
references
1. World Health Organisation. Visual impairment and blindness: fact sheet number 282. Geneva: World Health Organisation. Available online at: http://www.who.int/mediacentre/ factsheets/fs282/en/; 2014 [Last accessed December 2014]. 2. Access Economics. Future sight loss UK (1): the economic impact of partial sight and blindness in the UK adult population. Report for RNIB. London. Canberra: Access Economics; 2009. 3. World Health Organisation. Universal eye health: a global action plan 2014-2019. Geneva: World Health Organisation. Available online at: http://www.who.int/blindness/AP2014_19_English. pdf?ua¼1; 2013 [Last accessed December 2014]. 4. Vision 2020 UK. UK vision strategy 2013-2018. London: Vision 2020 UK. Available online at: http://www.vision2020uk.org. uk/ukvisionstrategy/landing_page.asp? section¼273§ionTitle¼AboutþtheþStrategy; 2013 [Last accessed December 2014]. 5. Department of Health. Public health outcomes framework in England, 2013e2016. In: Healthy lives, healthy people: improving outcomes and supporting transparency. London: Department of Health. Available online at: https://www.gov.uk/government/ publications/healthy-lives-healthy-people-improvingoutcomes-and-supporting-transparency; 2012 [Last accessed December 2014]. 6. NHS England. Five year forward view. London: NHS England. Available online at: http://www.england.nhs.uk/wp-content/ uploads/2014/10/5yfv-web.pdf; 2014 [Last accessed December 2014]. 7. Chakravarthy U, Augood C, Bentham GC, de Jong PT, Rahu M, Seland J, Soubrane G, Tomazzoli L, Topouzis F, Vingerling JR, Vioque J, Young IS, Fletcher AE. Cigarette smoking and age-
p u b l i c h e a l t h 1 2 9 ( 2 0 1 5 ) 9 1 e9 3
8.
9.
10.
11.
12.
13.
related macular degeneration in the EUREYE study. Ophthalmology 2007;114:1157e63. Leamon S, Hayden C, Lee H, Trudinger D, Appelbee E, Hurrell D-L, Richardson I. Improving access to optometry services for people at risk of preventable sight loss: a qualitative study in five UK locations. J Public Health 2014;36:667e73. RNIB. Number of adults and children certified with sight impairment and severe sight impairment in England and Wales: April 2012eMarch 2013. London: RNIB. Available online at: http://www.rnib.org.uk/knowledge-and-research-hub/ research-reports/general-research/certified-england-wales12-13; 2014 [Last accessed December 2014]. Emerson E, Robertson J. The estimated prevalence of visual impairment among people with learning disabilities in the UK. Report for RNIB and Seeability; 2011. Report for RNIB McManus S, Lord C. Circumstances of people with sight loss: secondary analysis of understanding society and the life opportunities survey. Available online at:, http://www.nhs. uk/NHSEngland/thenhs/about/Pages/overview.aspx; 2012 [Last accessed December 2014]. Department of Health. Programme budgeting benchmarking tool, 2012e13. Available online at: http://www.england.nhs. uk/wp-content/uploads/2014/02/pb-agg-pct-figs.xls [Last accessed December 2014]. Welsh Government. NHS expenditure programme budgets, 2012e13. Available online at: http://wales.gov.uk/statisticsand-research/nhs-expenditure-programme-budgets/? lang¼en [Last accessed December 2014].
93
14. ISD Scotland. Ophthalmic services, 2012e13. Available online at: http://www.isdscotland.org/Health-Topics/ Finance/Costs/File-Listings-2012.asp [Last accessed December 2014]. 15. Wormald R, Ratnarajan G. Equity and prevention of blindness with a disintegrated eye health service. Perspect Public Health 2013;133:7. 16. Report for RNIB Cymru Boyce T. Real patients coming to real harm. Available online at:, https://www.rnib.org.uk/realpatients-coming-real-harm; 2014 [Last accessed December 2014]. 17. RNIB Internal report RNIB. Coverage of UK hospitals by a sight loss advisor; 2014.
H. Lee* S. Leamon Royal National Institute of Blind People, United Kingdom *Corresponding author. E-mail address: [email protected] (H. Lee) Available online 13 February 2015 http://dx.doi.org/10.1016/j.puhe.2015.01.010 0033-3506/© 2015 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.
