Worcestershire Health and Well-being Board Joint Strategic Needs Assessment (JSNA)

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1 Worcestershire Health and Well-being Board Joint Strategic Needs Assessment (JSNA) Eye Health and Sight Loss in Worcestershire (Including Children and Young People) Ophthalmology Profile August

2 Contents Executive summary Introduction Context: understanding eye health and sight loss Local cost of eye care Outcomes Prevalence and incidence of sight loss by eye condition Glaucoma Cataract Age-related macular degeneration (AMD) Diabetic Retinopathy Low vision Outpatient activity Elective inpatient and day case activity Sight loss and local priorities Population projections and age considerations Population projections Registered population Children and young people National picture Measuring vision impairment in children Understanding the number of children with vision impairment Worcestershire data Causes of visual impairment in children Cerebral visual impairment Optic nerve disorders Retinal or macular dystrophies Congenital cataracts Children at most risk of visual impairment Premature/low birth weight Genetic eye conditions Maternal infections FINAL_OphthalmologyProfile_280814_01

3 8.6.4 Alcohol or drug exposure Smoking Children with learning difficulties Recommendations: Support for parents and children UK Sight Loss Pathway Conclusions and recommendations References Glossary Acknowledgements Appendix A Adult UK Sight Loss Pathway FINAL_OphthalmologyProfile_280814_01

4 Executive summary Ophthalmology is the study and treatment of disorders and diseases of the eye. Sensory impairment is unavoidably linked with an ageing population. There are 1.86 million people in the UK living with sight loss and by 2020 this number is predicted to increase by 22%. Some sources estimate there will be a total of four million people suffering from sight loss by the year 2050, clearly with very significant cost and demand to health services. Ophthalmology had the second highest attendances at NHS outpatient services in Prevention of avoidable sight loss is an international issue as highlighted by the World Health Organisation (WHO) and the International Agency for the Prevention of Blindness (IAPB) global initiative - Vision 2020 The Right to Sight 2. 68% of adults over 16 wear spectacles or contact lenses (65% of men and 71% of women). The number of NHS eye tests conducted has been steadily increasing over the past seven years as the population has been rapidly aging 3. The RNIB 1 estimates that the direct and indirect costs of sight loss totalled 6.5 billion in 2009; and calculate that this will rise to 7.9 billion by It is also important to consider the additional risks and burden of avoidable sight loss associated with co-morbidities including diabetes, obesity, smoking and mental health disorders (learning disabilities in particular). Worcestershire has a greater than average number of people over 65 and in particular a high number of people over 75 compared with the regional and national average. This makes the pressure on eye health and sight loss even more critical. Table 1 - Summary of statistics for sight loss and risk in Worcestershire 2013 Worcestershire England Living with sight loss High Risk % people living with sight loss 2011 % people living with sight loss 2020 % total population aged 70+ in 2011 % total population aged 70+ in 2020 Estimated % adults 18+ with diabetes 3.38% 2.95% 4.09% 3.36% 13% 11.5% 18% 14% 8.3% 7.7% 1 Source: RNIB (2012) JSNA Template and Guidance for eye health and sight loss. London: Royal National Institute for the Blind 2 Vision 2020, IAPB website [Accessed 23/4/2013] 3 Optical Confederation Optics at a Glance. London: Optical Confederation August

5 Sight threatening eye conditions Children and Young People Ave score on indices of deprivation (High = more deprived: W Midlands average = 24.93) Estimated number living with age-related macular degeneration 2012 Estimated number living with cataract 2012 Estimated number of people living with glaucoma 2012 Estimated number of people living with ocular hypertension 2012 Estimated number of people with diabetic retinopathy 2009 Number of blind/partially sighted children and young people 2012 (aged 0-16) Number of bind/partially sighted children and young people 2012 (aged 17-25) Source: RNIB Sight Loss Tool V , ,300 5, ,700 5, ,800 12,040 1,057,700 10, , , ,735 Analysis * Worcestershire has a higher percentage of people living with sight loss than the England average. This is almost certainly related to the higher proportion of older people in the county. * By 2020 the % of people living with sight loss is predicted to have increased to over 4% in Worcestershire whereas in England it is predicted to reach only 3.3% by the same year; this is related to the fact that the proportion of people over 70 is projected to be higher than the England average (18% in Worcestershire vs. 14% in England). * The number of people at risk of sight loss is higher in Worcestershire than the national average for a further reason- a higher percentage of adults with diabetes (8.3% vs. 7.7%). * These summary statistics also include an estimate of the number of people in Worcestershire with sight threatening eye conditions, including glaucoma, cataract, ocular hypertension and diabetic retinopathy. This represents a considerable number of people at serious risk of losing their sight, totalling around 40,000 people in the county. * This has resonance with the fact that the Public Health Outcomes Framework now includes a 'preventable sight loss' indicator for the major risks to sight loss, based on the WHO priority, mentioned in the previous section. * However, it is important to remember that sight loss and severe vision impairment is not limited to the older age groups. Hence the table above also includes an estimate of the number of children and young people of differing age groups who are blind or partially sighted, totalling 330 in Worcestershire (aged 0-25). August

6 * There are some key co-morbidities associated with sight loss and visual impairment, including: (i) Falls and the associated risk of serious and debilitating injury; evidence suggests that almost half of all falls sustained by blind and partially sighted people were directly attributable to their sight loss (Boyce et al., 2013). (ii) A strong link between age-related macular disease (AMD) and smoking, with the risk of AMD developing earlier than in non-smokers. Smoking has also been linked to the development of cataracts. Indeed, research has shown (AMD Alliance, 2005) that linking sight loss and smoking provide a motivation for people to reduce or give up smoking. (iii) There is a high prevalence rate of sight loss amongst adults with learning disabilities in the UK (Emerson and Robertson, 2011); it is estimated that one in ten adults with learning disabilities is blind or partially sighted. (iv) According to Pocklington (2007) there is also a strong link between dementia and sight loss; this has serious implications for health and care services in view of the ageing population and the consequent increase in dementia cases which has been forecast. (iv) Obesity has been linked to several eye conditions including cataracts and AMD; plus the strong link to type 2 diabetes and the associated sight deterioration in diabetic retinopathy (RNIB, 2014). (v) Uncontrolled hypertension increases the risk of both retinal vein and retinal artery occlusion (as reported as part of the Eye Disease Case-Control Study Group, 1996). (vi) Older people with sight loss are more than three times more likely to suffer from depression than people with good vision (Evans, Fletcher and Wormald, 2007). August

7 1. Introduction Eye disease and visual impairment are very common, and severe visual impairment or blindness is a significant form of disability. In children, visual impairment affects their development and education and in adults it has many implications for their independence and ability to work. Visual impairment affects social and psychological well-being, and places a burden of care on families and health and social services. The common eye diseases of later life, for example age-related macular degeneration (AMD), glaucoma and cataract, will result in many thousands of older people losing vision and requiring care. And as people live longer, demand for testing, diagnosis and treatment will increase. The healthcare needs of an ageing population will disproportionately affect ophthalmology, and Worcestershire services can expect a higher than average demand. This increases the need to shift the focus to prevention and early intervention of these common eye conditions, as in many cases sight loss can be prevented. For example, the graphs in Figure 1a to 1c below depict the % of people reporting blindness or severe visual impairment in Worcestershire CCGs. It is clear that the proportion is higher than the England average in a number of GP surgeries in each CCG. Another observation is the wide range of values; in South Worcestershire CCG for example (Figure 1a) these range from over 2% in Upton Surgery (in Upton upon Severn) to around only 0.5% in St Saviours Surgery (in Malvern Link). Whiteacres Medical Centre is reporting a very high % reporting blindness or severe visual impairment at over 4.5%, presumably linked with the higher proportion of population aged over 75 (which at 13.2% is nearly double the England average (only 7.7%). Figure 1a - % people reporting blindness or visual impairment in South Worcestershire CCG Source: National GP Profiles August

8 There is similar variance between GP surgeries in the other two CCGs in the county as depicted in Figure 1b and 1c below. Figure 1b - % people reporting blindness or severe visual impairment in Redditch & Bromsgrove CCG Source: National GP Profiles Figure 1c - % people reporting blindness or severe visual impairment in Wyre Forest CCG Source: National GP Profiles August

9 2. Context: understanding eye health and sight loss Sensory impairment as a public health issue is very relevant as it is unavoidably linked with an ageing population. There are 1.86 million people in the UK living with sight loss and by 2020 this number is predicted to increase by 22%. Some sources estimate there will be a total of four million people suffering from sight loss by the year 2050, clearly with very significant cost and demand to health services- Ophthalmology had the second highest attendances at NHS outpatient services in Prevention of avoidable sight loss is an international issue as highlighted by the World Health Organisation (WHO) and the International Agency for the Prevention of Blindness (IAPB) global initiative - Vision 2020 The Right to Sight 5. 68% of adults over 16 wear spectacles or contact lenses (65% of men and 71% of women). The number of NHS eye tests conducted has been steadily increasing over the past 7 years as the population has been rapidly ageing 6. Worcestershire has a greater than average number of people over 65 and in particular a high number of people over 75 compared with the regional and national average. This makes the pressure on eye health and sight loss even more critical. The RNIB 1 estimates that the direct and indirect costs of sight loss totalled 6.5 billion in 2009; and calculate that this will have risen to 7.9 billion by It is also important to consider the additional risks and burden of avoidable sight loss associated with co-morbidities including diabetes, obesity, smoking and learning disabilities. Figure 2 Anatomy of the eye Source: Glaucoma Research Foundation 4 Source: RNIB (2012) JSNA Template and Guidance for eye health and sight loss. London: Royal National Institute for the Blind 5 Vision 2020, IAPB website [Accessed 23/4/2013] 6 Optical Confederation Optics at a Glance. London: Optical Confederation August

10 Eye conditions in more detail Glaucoma Glaucoma is the name given to a group of diseases that damage the eye's optic nerve and can result in vision loss and blindness. The optic nerve is a bundle of more than a million nerve fibres which connects the retina to the brain. A healthy optic nerve is essential for good vision (National Eye Institute, N.d.) Normally, a structure within the eye (the ciliary body, please see Figure 2) secretes a watery fluid (aqueous humour) into the eyeball and this fluid flows out of the eye via drainage tubes (the trabecular meshwork). Changes to this process can cause pressure within the eye (intraocular pressure) to increase to a level that may damage the optic nerve. This can lead to vision loss. Another risk factor for optic nerve damage relates to high blood pressure therefore it is important to make sure this is controlled (National Eye Institute, N.d.) There are four main types of glaucoma: 1. Chronic open angle glaucoma the most common type and one which develops very slowly with age. 2. Primary angle-closure glaucoma very rare and can occur slowly (chronic) or may develop rapidly (acute) with a sudden painful build-up of pressure in the eye. 3. Secondary glaucoma this occurs as a result of an eye injury or another eye condition. 4. Developmental glaucoma this is rare but can be serious as it is usually present at birth and is an abnormality of the eye. If left untreated glaucoma can cause visual impairment but if diagnosed and treated early enough further damage to vision can be prevented. Chronic open angle glaucoma is more common in older people, occurring in 1 in 50 people aged over 40 and 1 in 10 people aged over 70. People of black African or black Caribbean descent are at more risk of this condition. People of Asian ethnic origin are more at risk of developing less common forms of glaucoma such as acute angle closure glaucoma. Cataract Cataracts are cloudy patches in the lens that make vision blurred or misty. They are a very common eye condition and can develop in one or both eyes. The lens, the transparent structure at the front of the eye, is normally clear allowing light to enter. Clouding of the lens prevents light from reaching the optic nerve and hence can affect sight. Cataracts are the most common form of eye condition worldwide, and are particularly common in developed countries. They affect men and women equally and are more common in older people. In the UK more than half of people over 65 have some cataract development in one or both eyes. Cataracts can be present in babies or young children but this is very rare. As well as old age there are other things that increase the risk of developing cataracts, including: - A history of cataracts in the family - Smoking - Over-exposing the eyes to sunlight - Taking steroid medicines for a long time - Certain health conditions including diabetes If left untreated cataracts can cause blindness, however this is very rare in developed countries. Once cataracts start interfering with daily activities, surgery is recommended. It is estimated that around 10 million cataract operations are performed each year around the August

11 world. There are around 350,000 cataract operations carried out each year in the UK; and 3,000 in Worcestershire 7. Age-related macular degeneration (AMD) Age-related macular degeneration (AMD) is the term applied to ageing changes without any other obvious precipitating cause that occur in the central area of the retina (macula) in people aged 55 years and older. It is a painless eye condition which gradually results in loss of vision (although this degeneration can sometimes be more rapid). In AMD the central vision (or what you can see in front of you) gradually becomes blurred leading to symptoms such as not being able to read clearly and/or not recognising people's faces. AMD is the commonest cause of blindness in the UK. In developed countries it is estimated that 1 in 50 people over 50 years of age and up to 1 in 5 people over the age of 85 have AMD. There are two main types: (i) Dry AMD (including Drusen 8 ) is the most common form, representing 9 out of 10 cases. In this type the cells in the retinal pigment epithelium (RPE) of the macula become thin (they atrophy) and degenerate. As this layer of cells is crucial for the function of the rods and cones these also degenerate and die. Typically dry AMD is a very gradual process and can take several years for vision to become seriously affected. Many people with dry AMD do not totally lose their reading vision. (ii) Wet AMD (also termed neovascular AMD) is much less common, and occurs in 1 in 10 cases, and is likely to cause severe visual loss over a short time sometimes just months. It leads to severe sight loss within 2 years for 70% of those diagnosed and is the major cause of ocular morbidity in high income countries (Owen et al, 2011). Figure 3 Factors contributing to Age related macular degeneration Macular degeneration contributory factors Genetics Smoking Diet, BP, lifestyle Source: Good Hope Eye Clinic 7 Source: NHS indicator portal [online] 8 Tiny abnormal deposits which develop under the retina August

12 Whilst the causes are different in different people, there are a number of contributory factors, including genetic predisposition, smoking, diet and exercise. The graph above illustrates the relative contribution of such factors. Diabetic retinopathy Diabetic retinopathy is a complication of diabetes in which the retina becomes progressively damaged. During the initial stages, diabetic retinopathy does not cause any symptoms. However, if it is not treated it can cause partial, followed by total, loss of vision. Diabetic retinopathy is the leading cause of blindness in adults under the age of 65. It is estimated that 25% of people with type 1 diabetes will have some degree of diabetic retinopathy five years after their symptoms first develop. In the case of type 2 diabetes, 25% of people who do not require insulin will have some degree of diabetic retinopathy five years after the onset of symptoms. The figure is higher for people who require insulin (an estimated 40%). 9 If diabetic retinopathy is diagnosed and treated at an early stage, the outlook for the condition is good. Research has found that treatment can prevent severe vision loss in 90% of cases of diabetic retinopathy. 9 Data source: NHS Choices August

13 3. Local cost of eye care The graph below compares the cost per head of population on ophthalmology in the Worcestershire PCT with the national average: Figure 4 Cost per head of Ophthalmology in Worcestershire PCT compared with regional and national average, 2012/ England Worcs PCT WMidsSHA 50 0 Q1 Q2 Q3 Q4 Source: NHS Comparators The graph in Figure 3 illustrates the average cost per head of ophthalmology in Worcestershire PCT (data from NHS Comparators). - Worcestershire has a lower spend per head on ophthalmology than either regional or national average spend. - The spend is approximately the same across the four quarters during the year; there is no real seasonal fluctuation. More detailed background data regarding the PCT s total expenditure on eye health and care is available from the Programme Budgeting Data which has been collected annually by the Department of Health since 2003/04. Data are collected for 23 main programmes of care based on the World Health Organisations International Classification of Diseases (ICD10). Programme 8 is the category problems of vision. August

14 Table 2 - Total expenditure on problems of vision (In 000s) 2011/ /13 % change from 2011/12 NHS Worcestershire 19,663 22, % Source: NHS Programme Budgeting data In 2012/13, the most recent year available, NHS Worcestershire spent just over 22m on problems of vision. This amount includes primary and secondary care, prescribing, A&E costs and prevention and health promotion costs. This represents an increase of nearly 15% compared to the previous year; and a 24% increase compared to the previous ophthalmology profile figure of 18.1m. Table 3 - Comparison with England average, and rankings (Costs shown as,000s per 100,000 weighted 10 population) 2012/ /12 Rank* 2012/13 Rank* W Mids SHA average England Average NHS Worcestershire 3, * Rank: Out of 152 PCTs. Source: NHS Programme Budgeting Table 3 illustrates NHS Worcestershire s expenditure per 100,000 weighted population in 2012/13, representing the 81 st highest of all England PCTs (out of 152). This is similar to the England average but below the West Midlands regional average. The following chart shows NHS Worcestershire s position compared to PCTs within the same cluster ('prospering smaller towns') to provide an indication as to how its spend compares with similar areas. Spend in Worcestershire is higher than key 'statistical neighbours', including Warwickshire and south Gloucestershire PCTs but considerably lower than others. 10 Unified weighted population. The formula takes account of the population and then adjusts it for things like the overall age, unavoidable cost difference and additional needs which an area may have. August

15 Expenditure ( million per 100,000 population) Bedfordshire PCT South Gloucestershire PCT Warwickshire PCT Leicestershire County and Rutland PCT Hampshire PCT Worcestershire PCT Wiltshire PCT Northamptonshire Teaching PCT Warrington PCT South Staffordshire PCT Central and Eastern Cheshire PCT Eye Health and Sight Loss in Worcestershire Ophthalmology Profile 2014 Figure 5 - PCT expenditure 2012/13 per 100,000 population and rank for problems of vision compared with other PCTs within the cluster National Rank Lowest to Highest 1st quintile 2nd quintile 3rd quintile 4th quintile 5th quintile Based on Data Data Quality Issue Worcestershire PCT PCTs within selected cluster level National average Source: NHS Programme Budgeting Tool Worcestershire s expenditure was average for the cluster and firmly within the 3 rd quintile of results. Table 4 - Primary and secondary care expenditure per 100,000 weighted population, 2012/13. Expenditure,000s per 100,000 population Primary care Secondary care Spend % Share Spend % Share Problems of Vision 1,081 25% 1,850 42% Source: NHS Programme Budgeting NHS Worcestershire's primary care expenditure accounted for 25% of the total spend on problems of vision; this is higher than the England average spend of 21%. In contrast, spend on secondary care represented only 42% of total spend on problems of vision compared with an average 62% of spend nationally. August

16 Summary In 2012/13, the most recent year available, NHS Worcestershire spent just over 22m on problems of vision; this represents a 13% increase on the previous year and nearly 25% increase on the previously reported expenditure from 2008/9. The expenditure per 100,000 weighted population was the 81 st highest of all England PCTs (out of 152). There was a contrast between primary and secondary expenditure, however, with Worcestershire having a higher spend on primary care than the national average and slightly lower than the England average spend for secondary care. August

17 4. Outcomes It is clearly important to keep track of progress in achieving improvements in sight loss and eye health in Worcestershire and monitoring outcomes is central to this. The Public Health Outcomes Framework has acknowledged the importance of eye health by including high level indicators around 'preventable sight loss'. These pertain to specific conditions including Age-related macular degeneration (AMD), glaucoma and diabetic eye disease (or retinopathy). Tackling these three conditions is the primary public health challenge in eye care as they represent the largest causes of certifiable blindness in England; but with timely and appropriate treatment available in the right place, all of these conditions can be treated effectively and sight saved. There is an additional indicator which assesses the rate of sight loss certifications this is a measure of the effectiveness of health and care services in picking up and treating sight loss and eye conditions. Improving outcomes for those people suffering from these common and treatable eye conditions will also have an impact on other things including falls and depression, hence improving the general health and wellbeing of a large number of people, particularly older people. It is important that this data is looked at and compared on a regular basis to reduce the risk of people losing their sight unnecessarily. The National GP Profiles have an indicator around the percentage of people reporting blindness or severe visual impairment, and this data is available at individual GP level. It is important to note that there will be a strong correlation with the proportion of people aged over 65, but it provides a useful assessment of the eye health within communities at a local level. Similarly there are three indicators in the Adult Social Care Outcomes Framework (ASCOF) relating to the rate of people in specific age groups who are registered blind or partially sighted (those age groups are 18 to 64; aged and aged 75+). Of course it is important to acknowledge that these measures will only capture the people who have been diagnosed and not the actual number of people in the population with sight loss. Table 5 summarises the outcome indicators from the frameworks mentioned above; the Worcestershire result is compared with the England average, and an assessment made as to whether Worcestershire is performing better or worse. As Worcestershire has a higher proportion of older people aged over 65 (over 19% compared with only 16% nationally) it might be expected that the rate of sight loss and visual impairment would be higher (prior probability). However, from the data reported in Table 5 below this is clearly not the case; and this could be due to a number of factors: 1. Earlier diagnosis of eye conditions and earlier treatment, minimising the risk of sight loss 2. Better treatment regimens again resulting in minimising the number of people suffering severe visual impairment 3. Greater awareness of the important links between sight loss and other health and wellbeing issues, including falls and depression; thus resulting in more holistic approach August

18 Table 5 Key national outcome framework indicators related to sight loss Frame work Indicator England Worcs Better/ Worse PHOF Preventable sight loss AMD 2011/12 (Age 65+ crude rate/100,000) PHOF Preventable sight loss Glaucoma 2011/12 (Age 40+ crude rate/100,000) PHOF Preventable sight loss Diabetic retinopathy 2011/12 (Age 12+ crude rate per 100,000) PHOF Preventable sight loss sight loss certifications 2011/12 (Crude rate per 100,000) Better Similar Similar Similar GP Profiles % reporting blindness or severe visual impairment 2012/13 1.1% 1% Similar ASCOF ASCOF ASCOF People aged registered blind/partially sighted 2010/11 (Rate per 100,000) People aged registered blind/partially sighted 2010/11 (Rate per 100,000) People aged 75+ registered blind/partially sighted 2010/11 (Rate per 100,000) Better Better 4,774 2,692 Better Source: Public Health Outcomes Framework; National GP Profiles and Adult Social Care Outcomes Framework. - The results summarised in Table 5 reveal that Worcestershire is performing better than the national average in terms of the rate of people registered blind or partially sighted in all the different age groups. However, this may be a function of the number of people being tested and diagnosed with sight loss rather than a lower prevalence. - Worcestershire also performs better on the rate of age related macular degeneration this is a little surprising as AMD is purely age-related condition so might be expected to be a higher rate due to the older population in the county. The lower rate of AMD may be due to early diagnosis and effective treatment resulting in fewer cases becoming serious. - The eye indicators where Worcestershire performs less well relate to glaucoma and diabetic retinopathy where the rate is similar to the national average. These are both conditions which, if detected and diagnosed early enough, can be effectively treated to reduce sight loss and deterioration. - Worcestershire also performs similarly to the national average in terms of the percentage of the population reporting blindness or severe visual impairment these are very small figures anyway so any difference is difficult to detect accurately. However, this suggests a disconnect between the number of people suffering sight loss problems and the number being picked up and registered. This may be a result of conditions being diagnosed and treated earlier in Worcestershire, preventing deterioration requiring registration as blind or partially sighted. August

19 - This is borne out by the prevalence data in the next section which is an estimate (based on RNIB national prevalence data) about the number of people in Worcestershire suffering from the main eye conditions. August

20 5. Prevalence and incidence of sight loss by eye condition Prevalence: Incidence: The total number of cases of a disease in a given population at a specific time. The number of new cases in a particular period, usually a year. Incidence is often expressed as a ratio, in which the number of cases is the numerator and the population at risk is the denominator. There are various sources and estimates of the prevalence and incidence of different eye conditions; and these will be discussed in the following sections. One source that provides prevalence data for all the main conditions is the Royal National Institute for the Blind (RNIB) sight loss data tool. The table below summarises the Worcestershire PCT data for the main eye conditions, including data for children and young people (such data is a recent addition to the RNIB tool and is significant in that information about sight loss and eye conditions amongst children and young people is rarely provided by other data sources). The information in Table 6 also includes an estimate of the number of people at high risk of eye conditions due to age and other contributory factors (such as diabetes). This is obviously very important intelligence as far as planning future services is concerned; it also highlights the growing importance of a more holistic approach to health and wellbeing as many of the risk factors are common with other inequalities in ill health e.g. age, obesity (diabetes) and deprivation. The main eye conditions included in this data are: Age-related macular degeneration (AMD) Cataract Glaucoma Diabetic retinopathy Low vision Table 6 Prevalence of sight loss and those at risk of living with sight loss Worcestershire England Living with sight loss High Risk Sight threatening eye % people living with sight loss 2011 % people living with sight loss 2020 % total population aged 70+ in 2011 % total population aged 70+ in 2020 Estimated % adults 18+ with diabetes Ave score on indices of deprivation (High = more deprived: W Midlands average = 24.93) Estimated number living with age related macular degeneration % 2.95% 4.09% 3.36% 13% 11.5% 18% 14% 8.3% 7.7% , ,300 August

21 conditions Children and Young People Source: RNIB Sight Loss Tool V Estimated number living with cataract 2012 Estimated number of people living with glaucoma 2012 Estimated number of people living with ocular hypertension 2012 Estimated number of people with diabetic retinopathy 2009 Number of blind/partially sighted children and young people 2012 (aged 0-16) Number of blind/partially sighted children and young people 2012 (aged 17-25) 5, ,700 5, ,800 12,040 1,057,700 10, , , ,735 Analysis * Worcestershire has a higher percentage of people living with sight loss than the England average; this correlates with the higher proportion of older people in the county. * By 2020 the % of people living with sight loss is predicted to have increased to over 4% in Worcestershire whereas in England it is predicted to reach only 3.3%. This is related to the fact that the proportion of people over 70 is projected to be higher in Worcestershire than the England average (18% in Worcestershire vs. 14% in England). * The number of people at risk of sight loss is also higher in Worcestershire than the national average because of a higher percentage of adults with diabetes (8.3% vs. 7.7%). * These summary statistics also include an estimate of the number of people in Worcestershire with sight threatening eye conditions, including Glaucoma, cataract, ocular hypertension and diabetic retinopathy. This represents a considerable number of people at serious risk of losing their sight, totalling around 40,000 people in the county. * This has resonance with the fact that the Public Health Outcomes Framework now includes a 'preventable sight loss' indicator, based on the World Health Organisation priority, mentioned in the previous Outcomes section. * However, it is important to remember the fact that sight loss and severe vision impairment is not limited to the older age groups. Hence the table above also includes an estimate of the number of children and young people of differing age groups who are blind or partially sighted, totalling 330 in Worcestershire (aged 0-25). * There are some key co-morbidities associated with sight loss and visual impairment, including: (i) Falls and the associated risk of serious and debilitating injury; evidence suggests that almost half of all falls sustained by blind and partially sighted people were directly attributable to their sight loss (Boyce et al, 2013). (ii) A strong link between age-related macular disease (AMD) and smoking, with the risk of AMD developing earlier than in non-smokers. Smoking has also been linked to the development of cataracts. Indeed, research has shown (AMD Alliance, 2005) that linking sight loss and smoking provides a motivation for people to reduce or give up smoking. August

22 (iii) There is a high prevalence rate of sight loss amongst adults with learning disabilities in the UK (Emerson and Robertson, 2011); one in ten adults with learning disabilities is estimated to be blind or partially sighted. (iv) According to Pocklington (2007) there is also a strong link between dementia and sight loss; this has serious implications for health and care services in view of the ageing population and the consequent increase in dementia cases which has been forecast. (iv) Obesity has been linked to several eye conditions including cataracts and age-related macular degeneration; plus the strong link to type 2 diabetes and the associated sight deterioration in diabetic retinopathy (RNIB, 2014). (v) Uncontrolled hypertension increases the risk of both retinal vein and retinal artery occlusion (as reported as part of the Eye Disease Case-Control Study Group, 1996). (vi) Older people with sight loss are more than three times more likely to suffer from depression than people with good vision (Evans, Fletcher and Wormald, 2007). 5.1 Glaucoma Prevalence and incidence - Glaucoma is the leading cause of irreversible blindness worldwide: and open angle glaucoma (OAG) accounts for 50% of all glaucoma blindness. - In the UK OAG has an estimated UK prevalence of 2.1% (Burr et al, 2007) ranging from 0.3% in people aged around 40 up to 3.3% in people aged Incidence rates range from 30/100,000 to 181/100,000 persons aged Of the estimated half a million people affected by OAG, around 67% remain undetected this explains the variance between registered certifications and reported sight loss. - This is exacerbated by the fact that in the UK glaucoma is detected only by opportunistic case finding, usually by community optometrists. - Prevalence varies with a number of risk factors, including: * People with diabetes, prevalence is 3.3% * For people with family history of glaucoma the rate is double at around 6.7% * African ethnicity makes the risk of glaucoma 4 times higher - The study by Burr et al (2007) concluded that population screening is not cost-effective but targeted screening of high risk groups may be cost-effective. - Detection can be improved by encouraging increased attendances for eye examinations. The graph in Figure 5 below provides an estimation of the number of glaucoma cases over the next few years, based on the average prevalence rate of the condition (0.3% for people aged and 3.3% for people aged 70 or over), and using 2011 ONS population projections. The message is very clear there will be a sharp increase in the number of people aged 70+ with glaucoma over the next few years; this cannot be ignored and needs to be factored in to health and social care planning, including establishing screening for people aged 70+ and those in the other risk groups. August

23 Figure 6 - Estimated numbers of glaucoma cases (prevalence) for NHS Worcestershire, with percentage prevalence among people aged and Aged Aged Source: Burr et al (2007) and ONS 2011-based population projections. 5.2 Cataract Cataracts are the most common cause of blindness worldwide and occur most commonly in older people. There are different classifications of cataract depending upon which part of the lens is affected, including nuclear, cortical and sub-capsular (NICE, 2010). Apart from ageing, other causes of cataract include family history (accounting for 50% of cortical cataracts), diabetes mellitus, high alcohol intake and smoking. Prevalence A study by Reidy et al (1997) provides evidence of the prevalence of cataracts in adults as might be expected it varies with age, with an average of 30% amongst people aged 65+. Prevalence can be as high as 59% in people aged 80 years and over. The graph in Figure 5 below illustrates the number of cataract cases projected over the next few years the increasing number of people aged 65+ in Worcestershire clearly having an impact on these figures. Cataracts in children are much less common, estimated to be around 3 in every 10,000 at the age of 3, increasing to 4 in every thousand by the age of 15 (Rahi et al, 2001). This approximates to only around 40 children in Worcestershire. It is estimated that there are around 33,000 Worcestershire people with the condition (30% of the 65+ population). By 2021, the number of people with cataract could increase to 42,000 as the number of older people in the resident population increases. The red graph line in Figure 6 provides an estimate of the increasing number of people aged 80+ likely to August

24 be requiring treatment for cataracts over the next few years, peaking at 25,000 in This emphasises the fact that early diagnosis and treatment of eye conditions should be a real priority for health and care services in Worcestershire. Figure 7 - Estimated numbers of cataract cases (prevalence) for Worcestershire among people aged Aged 65+ Aged Source: NICE (2010) and ONS 2011-based population projections. Incidence The best proxy for incidence is the number of cataract procedures conducted in a year. The number of procedures conducted, however, may be dependent not only on the number of people diagnosed with cataract but also: 1) the decision criteria for operation and 2) available capacity. The estimated prevalence figures in Figure 7 indicate that the demand/need for cataract procedures exceeds the number of procedures considerably, as summarised in Table 6. Table 6 - Number of cataract procedures, NHS Worcestershire patients Number Rate* (England average rate) % of all aged 40 and over 2007/08: 3, (611) 1.0% 2008/09: 3, (640) 1.2% 2009/10: 4, (636) 1.3% 2010/11 4, (621) 1.5% 2011/12 2, (609) 1.0% Source: HSCIC: NHS Indicator Portal *ISR = Indirectly standardised rate /100,000 persons The rate of cataract procedures in Worcestershire has compared favourably with the national rate up until 2011/12, when there was a noticeable drop. These data suggest that just over 1% of all aged 40 and over undergo a cataract procedure each year. August

25 5.3 Age-related macular degeneration (AMD) Prevalence Age-related macular degeneration is a progressive chronic disease of the central retina. It is rare in people under 60 and if contracted in one eye there is a high chance (60%) that it will develop in the other eye. There are two types of AMD, which are explained in more detail earlier in this report (please see page 9). Figure 7 below summarises the prevalence of all cases of AMD among people aged 50 and over in Worcestershire, based on the prevalence rate and using the latest ONS population projection data for Worcestershire (2011). The number of cases will increase as the number of people aged over 50 is projected to increase. Figure 8 - Estimated numbers of Age Related Macular Degeneration (any) cases, and percentage prevalence among people aged 50 and over, 65+ and 80 and over Age 50+ Aged 65+ Aged Source: Owen et al (2011) and ONS 2011-based population projections. The number of people with AMD is estimated to be around 5,500 currently (2.4% of the 50 and over population), and is predicted to approach 7,000 by The graph in Figure 7 also illustrates the variance in the rate of increase of AMD cases by age group. The 80+ age group is projected to increase more rapidly, hence the number of AMD cases will increase most rapidly too. This provides more support for the policy of targeted screening for the groups most at risk, particularly people aged 80 and over. Incidence The estimated number of prevalent cases of late AMD is 60% higher in women than men. Consequently the study by Owen et al (2011) established an incidence rate of late AMD per 1,000 population at around 4.1 in women and only 2.6 in men. August

26 Estimated number Eye Health and Sight Loss in Worcestershire Ophthalmology Profile Diabetic Retinopathy Prevalence Diabetic retinopathy (DR) affects the blood vessels supplying the retina, damaging them so light reaching the retina is reduced and patchy. Visual impairment caused as a result of DR can have a serious impact on quality of life, being a factor in falls and feelings of isolation and depression. Diabetes is the leading cause of blindness amongst working age people in the UK, with 50% of all those suffering from proliferative diabetic retinopathy (PDR) going blind within 5 years of diagnosis. An estimated 1 in 20 people in the UK have diabetes (90% of these having type 2 diabetes), with a prevalence rate in the adult population in England of around 5.5%. This is the highest rate of all the countries in the UK (Northern Ireland has a prevalence rate of only 3.8%). Most of those people with type 1 diabetes will develop DR during the years following diagnosis; and an estimated 60% of those with type 2 diabetes will develop it too. Diabetes prevalence is therefore an indirect way of calculating the number of people suffering from DR, and Figure 8 below provides an estimate. This varies between age groups and genders, being more common in men than women. For example, prevalence of diabetes amongst men aged is 9.4% versus only 6.6% amongst women of the same age. As with many other conditions prevalence of diabetes increases with age, from only around 2% in year olds to 14% in people aged 75+. Figure 9 - Estimated number of patients with diabetic retinopathy in Worcestershire 35,000 30,000 25,000 20,000 15,000 10,000 5, lower 6,428 7,118 7,817 8,564 9,160 25% 8,494 9,610 10,627 11,586 12,643 40% 13,590 15,376 17,002 18,538 20,229 upper 19,099 21,640 24,038 26,396 28,692 Source: PHE estimates of diabetes prevalence for Worcestershire August

27 % retinal screening in diabetes patients Eye Health and Sight Loss in Worcestershire Ophthalmology Profile 2014 Diabetic retinopathy screening coverage This is defined as the percentage of people with diabetes offered screening. The denominator is the number of people with diabetes identified by the practices in the PCT minus those that are excluded from screening. The target by 2010/11 was set at 100%. The latest published data for Worcestershire compared with national and regional averages are illustrated in the graph in Figure 9 below. Worcestershire has improved its retinopathy screening record across the reporting period in comparison to noticeable decreases at national and regional levels. However, there is still some way to go before achieving the target of 100% screening. Figure 10 Proportion of patients with diabetes who have a record of retinal screening in previous 15 months England W Mids SHA Worcs PCT / /12 Source: HSCIC NHS information indicators 5.5 Low vision A further way of assessing the scale of the problem of visual impairment in Worcestershire is the number of registered blind and partially sighted people. This will obviously increase with age and with the growth of the population aged 65+ there is clearly cause for concern. The chart in Figure 10 below summarises recent years' registrations by age group, and an indication of the changing incidence of blindness and impairment by reporting the number of new cases reported. This trend would not have been expected with the ageing population, and the increasing prevalence of the various eye conditions, as discussed in detail in this section. There is clearly a large number of people going unregistered and the reasons for this need to be better understood if avoidable sight loss is to be reduced in Worcestershire. The number of people going unregistered is also of concern because it is important that people with sight loss get access to the right support to help them to cope with the diagnosis of a permanent August

28 Number of registrations Eye Health and Sight Loss in Worcestershire Ophthalmology Profile 2014 disability that they will have to live with for the rest of their lives. Failure to help people to make this adjustment and access a program of rehabilitation and emotional support leads to an increase in the numbers of people with anxiety and depression, and will increase the risk of falls. Figure 11 - Registered blind and partially sighted people in Worcestershire Registered blind Reg partially sighted New cases blind New case P/sighted Year Source: The Health and Social Care Information Centre (HSCIC) When a consultant certifies a person as eligible for registration as blind or partially sighted, they issue a certificate of visual impairment, one copy goes to the patient, one is sent to Moorfields Hospital as part of a national data collection exercise, one goes to the patient s GP and the other goes to the local authority. The local authority then has a statutory duty to contact the person and ask if they would like to be registered. If they agree, the local authority adds their name to the council s register and the Information Centre for Health and Social Care collects data every three years on new registrations within the council in the previous twelve months and the total number of people on the register. This duty on councils has been carried forward into the new Care Act which has just received Royal Assent. When the certificate is received by the local authority a member of the sensory impairment team will make contact with them. And an assessment made as to whether the person is in need of some rehabilitation or support; this triggers a program of support or signposting to other services. Some people will choose not to be registered, so the register is never a completely accurate reflection of the number of people with certifiable sight loss. For example, it may take some time for someone to accept their diagnosis and agree to be entered on the register, during which time their case may be closed. It is therefore important people are encouraged to be registered. The statistics concerning the number of blind and partially sighted registrations collected in this way are published every 3 years. Over the past three publications the number of new cases, and consequently the number of people in the population who are blind or partially sighted, has dropped steadily. It now stands at around the 1,000 mark for August

29 people in Worcestershire registered as blind; 1,150 for the number of people registered as partially sighted. Summary Estimates of prevalence and incidence of disease tend to be fairly rudimentary; however there are clearly a large proportion of cases of eye disease (particularly AMD and glaucoma) which remain undiagnosed. This is particularly pertinent for eye conditions where the disease can remain undiagnosed until it reaches an advanced stage, with the unacceptable risk of avoidable blindness. The Public Health Outcomes Framework accordingly contains measures for reducing 'avoidable sight loss', a clear acknowledgement of the fact that with early diagnosis and treatment, most eye conditions can be managed to avoid further deterioration of eye sight. There are estimated to be as many as 33,000 people in Worcestershire with cataracts, 3,500 with glaucoma; 5,500 people with age-related macular degeneration; and between 6,500 and 19,000 cases of diabetic retinopathy. It is quite possible that some people have more than one condition. Ophthalmology services will be in greater demand in the future, as it likely that the number of people with these eye conditions will increase at a similar rate to projected population change. For example, by 2021 there could be almost a thousand more people with glaucoma and 7-8,000 increase in the number with cataracts. The number of registrations of blind and partially sighted people has dropped in recent years. This may be a consequence of improved care and earlier diagnosis, or the fact that they are being missed by services and hence not receiving the support they need. Vision is important for people's quality of life, and sight loss can be a serious cause of isolation and depression, particularly amongst the elderly. Visual impairment is also a significant contributor to falls and consequent injury and potential further loss of mobility. August

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