Surgery deferred. Sight denied. Variation in cataract service provision across England

Surgery deferred. Sight denied. Variation in cataract service provision across England RNIB campaign report July 2013

Contents Acknowledgements; About RNIB 3 1. Executive summary 4 2. Patient stories 8 3. Background 10 4. Cataract treatment: guidance and policy context 11 4.1 Current guidance 11 4.2 Policy context 11 4.3 Variation in service provision 12 5. Statistical analysis of cataract activity in England 13 5.1 Total patients and spells 13 5.2 Variation in cataract rates across England 14 5.2.1 Variation of rates: range 14 5.2.2 Variation of rates: and highest performers 15 5.2.3 Variation of rates: trends over three years 18 5.3 referral to treatment time 19 5.4 Patient demographics: age and gender breakdown 22 5.4.1 Breakdown by age 22 5.4.2 Breakdown by gender 22 5.5 Focus on second eye 23 5.5.1 National trends 23 5.5.2 Variation in second eye rates across England 23 6. Commissioning decision making 28 6.1 Background 28 6.2 Commissioning policies across England 28 6.3 Correlation between policies and rates 29 7. Conclusion 33 References 34 Appendix one: HES data analysis methodology 36 Appendix two: Freedom of Information request 38 Appendix three: Overview of findings by 39 2

Acknowledgements We would like to thank Harvey Walsh Ltd for analysing Hospital Episode Statistics (HES) to examine variation in cataract service provision across England. We would also like to express our gratitude to the range of commissioners, staff from across the and patients who gave their time to share their personal experiences and insights. This research has been kindly supported by an unrestricted grant from Alcon Eye Care UK Ltd. Clara Eaglen, Policy and Campaigns Manager, RNIB Steve Winyard, Head of Policy and Campaigns, RNIB About RNIB Royal National Institute of Blind People (RNIB) is the leading charity offering information, support and advice to almost two million people sight loss. We are a membership organisation over 10,000 members who are blind, partially sighted or the friends and family of people sight loss. Our three main priorities are set out by our five-year strategy (2009 2014): Stopping people losing their sight unnecessarily Supporting independent living Creating an inclusive society As a campaigning organisation, we fight for the rights of blind and partially sighted people across the UK and push for better access to diagnosis and treatment to prevent avoidable sight loss. 3

1. Executive summary Introduction Cataract is a safe and cost-effective procedure that has the capacity to restore sight. It is the third most common procedure carried out by the, only live births and cardiac treatments accounting for more spells in hospital. In 2012/13, 340,809 cataract operations were performed, representing an increase of over 50 per cent since 1998/99. This reflects both better access to the intervention and increased demand due to the ageing population [1]. While this is welcome, patients regularly tell us that they are being denied despite it having a major impact on their quality of life. Cataracts can prevent someone from driving, undertaking work that requires fine detail and recognising faces. When a cataract begins to affect a person s everyday life, their sight will continue to deteriorate until it is removed. They will require at some point in the future, so not treating now only increases waiting lists in the future. efficiency savings achieved by cutting cataract operations are a false economy. Denying treatment leaves patients at risk of depression, social isolation and fall-related hip fractures. Treating mental health conditions and repairing hip fractures are substantially more costly to the and social care services than cataract. While it is important to ensure people cataracts do not undergo unless it is necessary, we are aware of many patients who desperately need this life changing but are unable to access it. To investigate why this is happening, RNIB commissioned a major piece of quantitative research to examine variation in cataract service provision across England. Our aim was to identify where poor provision is taking place and ensure this is tackled. Methodology In February 2013, Harvey Walsh Ltd a healthcare intelligence agency was commissioned to analyse Hospital Episode Statistics (HES) and identify trends in cataract service provision across England. Data over a five-year period (2007/08 2012/13) was analysed at both patient and Clinical Commissioning Group () level. They looked at trends relating to first and second eye, age band and gender, and waiting times. A number of structured interviews commissioners and clinicians were also undertaken to inform the analysis. 4

Data was analysed using absolute numbers both in terms of patients and spells. A spell is defined as a completed stay in hospital, where one patient could be admitted for first eye at one point (first spell) and second eye at a later date (second spell). The analysis also used spells per 100,000 of population at level. This enabled data analysts to compare like for like accounting for the fact that each serves different patient population sizes. We appreciate that this is a complex picture not only because of different population sizes but also due to different population profiles (ie variations in age, gender, ethnicity and deprivation). For this analysis Primary Care Trusts (PCTs) were mapped onto the new s, therefore, historical data is displayed under the name of the that now has responsibility for each area. To compliment the HES data analysis, RNIB issued a series of Freedom of Information requests in February 2013 to assess the referral criteria (for cataract ) operated by commissioners across England. This report summarises the findings of this research and makes a number of recommendations for improving access to and eradicating unacceptable variation. Key findings Our research has uncovered four issues that are likely to affect a patient s ability to access cataract : A national decline in the number of second eye cataract operations: this research shows that the total number of second eye operations is decreasing across England: 96,336 procedures took place in 2009/10, 92,700 in 2010/11 and 91,959 in 2011/12. This is contrary to what we would expect to see. The ageing population (cataracts mainly affect those aged 65 and over) and the slight increase in numbers of first eye (252,468 procedures in 2009/10, 253,873 in 2010/11 and 257,080 in 2011/12) indicates that the number of second eye operations should be increasing. The decline shown in this analysis suggests that second eye is being rationed by commissioners. Variation in first and second eye operation rates across England: there is noticeable variation in the rates of cataract taking place across England. In 2012/13, the rate varied from 1,147 per 100,000 of population in Fylde and Wyre to 267 in South Reading. These rates includes both first and second eye procedures. 5

In particular, the analysis found significant variation in second eye operation rates across the country. Some areas consistently perform high rates of operations, such as Sunderland, while others perform low rates, for example, Coastal West Sussex. Reasons for these variations are of course complex but do suggest that there is inequitable access to cataract operations across England. Large variation in time to treatment across the country: this study shows substantial variation in time to treatment from first attendance at the hospital outpatient clinic to the subsequent cataract. The range being between 222 days in Heywood, Middleton and Rochdale, and 44 days in Ipswich and East Suffolk. Restrictive referral criteria: over 50 per cent of commissioners have introduced arbitrary thresholds to restrict access to cataract. They do so out a robust evidence base and, therefore, cannot be sure that they are providing optimum care or protecting patients from avoidable harm. A small number of commissioners have also cited that the restrictions are in place due to financial pressures. While restrictive policies do not always correspond lower rates of, we are aware of patients being denied due to these arbitrary thresholds. Recommendations It is vital that commissioners assess the needs of their populations and ensure sufficient provision is in place to meet the growing demand for cataract. Urgent action is required to prevent thousands of people being forced to live unnecessary sight loss. RNIB therefore recommends that: National leadership is put in place to address unacceptable variation in cataract service provision: England must create a National Clinical Director for Eyecare. This will ensure clinical leadership is at the heart of decision making and ready to meet the challenges that lie ahead as the population ages and the prevalence of eye conditions increase. Local leaders must reduce unacceptable variation and poor performance: we appreciate that this is a complex picture and that variation in rates may be due to different population profiles (ie variations in age, gender, ethnicity and deprivation). However, commissioners in areas where there is variation should assess population needs and address poor provision. This means reviewing HES data, national guidelines and taking advice from local experts (such as those in Local Eye Health Networks) to ensure local commissioning policies and treatment pathways are evidence based and fit for purpose. 6

Patient input should inform decision making: commissioners and ophthalmology units should collect and act upon patient feedback, using it to inform the design and delivery of cataract services. This will help ensure provision is patient centred. A patient-reported outcome measure (PROM) should also be developed for cataract so that patients can provide views on the outcome of their treatment. Currently there is no valid and reliable methodology for measuring patient outcomes in ophthalmology. Clinicians and researchers must work together to create a reliable PROM tool for assessing the impact of from the patient s perspective. NICE must prioritise the production of its cataract clinical guideline and quality standard: the Government, England and NICE must bring forward the development of the cataract clinical guideline and quality standard. Evidence in this study shows widespread variation in cataract service provision and proves that national guidance is urgently required. A NICE guideline and quality standard will help commissioners ensure they are contracting high-quality services and not allowing poor provision to persist. They will also help providers monitor service improvements and eradicate unacceptable variation; as well as explaining to patients what to expect from a high-quality cataract service so they can act if the system fails them. Conclusion This report contains the most detailed analysis of cataract data to date. It confirms the findings of previous RNIB reports, published in June 2011 [2] and May 2012 [3], that in many areas of the country the is failing to provide access to cataract when patients desperately need it. It confirms that rationing is still taking place based on arbitrary visual acuity thresholds. In a few areas the rationing is taking place on the basis of cost alone. Following a meeting the Royal College of Ophthalmologists and RNIB, the Health Minister Earl Howe wrote to express his shared concern about access to cataract. Among other things he confirmed that he had passed on to England our request that the production of a NICE clinical guideline and quality standard on cataract be prioritised for development in 2013/14. However, RNIB has recently learned from NICE that production of such a standard will not now start until 2018. Such delay is completely unacceptable. This is a major problem that needs to be tackled now, not in five years time. In addition to the NICE quality standard, there is a clear need for a National Clinical Director for Eyecare based in England. We have called for such a post on a number of occasions in the past but the need is greater now than ever. Without such a champion inside the there is every danger that eye health and cataract will yet again be sidelined. Failure to act now will simply widen health inequalities and deny a growing number of patients their sight. 7

2. Patient stories Bernice Cowles, 80, South Essex In April 2012, Mrs Cowles optometrist (optician) noticed she was developing cataracts. At that time Bernice did not feel that there was much of an impact on her life and was happy to avoid. However, in February 2013, she began to struggle her vision, particularly in reading small print labels on the medication she manages for her husband. He suffers from a degenerative disease and relies on her to provide the correct medication in the correct dose. Bernice s optometrist and GP referred her to Barking Havering and bridge Hospital for a consultant led review which she attended in March 2013. At the appointment the consultant said that although I needed the operation, and that he would try as hard as he could, he didn t think I would be allowed the under the current eligibility criteria. Having cataracts does impact on my everyday life and because I am a carer for my husband, it is very important that I stay well and that I keep my sight. I find it hard to read the labels on my husband s medicine bottles and have to use a magnifying glass to see what they say how many tablets and how often. I find reading for any length of time difficult and I can only read one page of a magazine at a time. The pages go a bit grey and the words are blurry, I have to tilt the pages at an angle. Brian George, 74, Oxfordshire In 2010, Mr George had to remove a cataract in his left eye. In early 2012, he developed a cataract in his right eye which affected his everyday living, in particular his ability to drive at night. However, changes to the commissioning policy where he lives meant he was unable to access. The biggest problem that many cataract sufferers will complain about is glare when they are driving, especially at night on an unlit road. I also play golf a lot and by the time I came to be judged whether I could have the operation or not, I could no longer see the golf ball. I was advised that the PCT had moved the goal posts regarding cataract operations and that my sight was no longer at a level where I qualified for an operation. I got rather cross at what seemed an easy operation giving me much better quality of life than I had before. I wrote to the PCT a copy of the correspondence and sent it to my MP. I pointed out that the PCT took no account of glare and as far as I was concerned glare was actually more of a hindrance to my way of life, especially when driving at night, than my ability to see an eye chart or otherwise. The GP came to my rescue and gave me quite a thorough eye test. Subsequently I was put on the waiting list for. Following treatment I can see though both my eyes perfectly adequately. 8

Dau Tu, 63, West Sussex Ms Tu has spent most of her career as a dress maker and upholstery machinist, where seeing fine detail is vital. In 2011, Ms Tu s cataract deteriorated quickly and began to affect her everyday activities including sewing and driving at night. During the winter months this presented a real problem and hampered her ability to drive to and from work safely. Glare from oncoming headlights can temporarily blind someone a cataract, which is clearly a dangerous situation. Despite these problems, Ms Tu found out she was not eligible for under changes to the West Sussex commissioning policy. Her vision was deemed too good. Ms Tu appealed this decision the help of her GP, describing the problems she was having in her daily life, but was turned down again by a review panel. Ms Tu spent the next 18 months, the support of her consultant, trying to access. She wrote to her MP and was supported by RNIB in making a case to her local PCT. During her wait she had to claim Access to Work disability benefit to pay for taxis to and from work as she was no longer able to drive. Finally, Ms Tu secured funding for treatment following a threat of legal action. I ve been campaigning nearly two years to get they kept on telling me that I wasn t deteriorating enough so I couldn t get the operation. I found it really difficult to drive in the dark I found it very hard so I had to give up. I rang up the job centre because I couldn t get to work. They passed me to a different department to claim Access to Work so I could get a taxi to and from work. I got 118 per week for two months. 9

3. Background 3.1 What is a cataract and how is it treated? Cataracts are a very common eye condition. As people age, the lens inside their eye gradually changes and becomes less transparent (clear). A lens that has turned misty, or cloudy, is said to have a cataract. Over time a cataract will get worse, making vision mistier. A straightforward operation can remove the misty lens and replace it an artificial one to enable people to see clearly again. Cataract has a low complication rate and is successful in 97 per cent of cases. Most of the complications experienced (ie in three per cent of cases) can be dealt and usually do not affect sight in the long term [4]. 3.2 What impact does a cataract have on a person s quality of life? Cataracts affect individuals in different ways. It can prevent people from driving, undertaking work that requires fine detail or recognising faces. This has an obvious financial and emotional cost to the patient. For some people even a small change to their sight in one eye will cause a significant problem. 3.3 Cost-effectiveness of cataract Large, well conducted observational studies show that cataract operations are clinically effective and result in demonstrable improvements in patient outcomes. This applies to both first and second eye [5, 6, 7]. In terms of health economics, a recent UK analysis concludes that cataract is also cost-effective. It found that is beneficial from a cost per Quality-Adjusted Life Year (QALY) perspective the measure used when assessing the cost-effectiveness of new treatments and medical interventions. This analysis reviewed both first and second eye [8]. Crucially, in terms of outcomes and costs for the, patients who have early access to cataract may experience fewer falls (18 per cent versus 25 per cent); and fewer fractures (three per cent versus 12 per cent) in the 12 months following treatment, compared to those who had routine second eye at 12 months [9]. This is supported by a recent large-scale US study, which found that cataract patients who had had lower odds of hip fracture in one year compared those who did not receive treatment [10]. 10

4. Cataract treatment: guidance and policy context 4.1 Current guidance In 1998, the Government decided that a major effort was needed to ensure eligible patients were able to access cataract. Up to that point it was not unusual to hear stories of cataract patients waiting up to two years for treatment. The Government organised the Action on cataract initiative and issued good practice guidance in 2000 to improve access to [11]. It establishes some straightforward eligibility criteria which, if implemented, should ensure patients access if they need it and do not undergo unless it is necessary. The guidance states that patients should be referred if they: have reduced vision from the cataract (visual acuity is one measure of vision and relates to how far a person can read down an eye chart) experience a negative impact on their quality of life due to inability to drive or carry out day-to-day activities are willing to have the cataract removed and aware of the risks involved. The guidance also notes that second eye treatment should be included in the patient journey and scheduled in two to three months of the initial operation to avoid the need for new glasses between operations and reduce the likelihood of deteriorating general health. The guidance did not establish visual acuity thresholds that patients should reach before they are eligible for treatment. These basic premises are explained in more detail in this and other guidance including the Royal College of Ophthalmologists cataract guideline published in 2010 [12]. 4.2 Policy context The Health and Social Care Act 2012 abolished Primary Care Trusts and passed responsibility for commissioning cataract to Clinical Commissioning Groups (s). Despite this change taking place in April 2013, many areas are still in flux, presenting both opportunities and challenges in ensuring high-quality cataract service provision is in place across the country. The new Public Health Outcomes Framework contains an eye health indicator but this only tracks the rates of sight loss arising from three major conditions glaucoma, agerelated macular degeneration and diabetic retinopathy. This could 11

inadvertently take the attention of commissioners away from the problems surrounding variation in cataract service provision. In addition, a NICE clinical guideline and quality standard for cataract, both aimed at pushing up quality of care in this area, will not be developed before 2018. 4.3 Variation in service provision Although recent figures reflect welcome increases in rates of in some parts of the country, there is evidence that variation still exists. The recently published Atlas of Variation (2011) shows that variation in cataract rates between health providers has increased [13]. In January 2013, Professor Sir Bruce Keogh, Medical Director of England, gave evidence to the House of Commons Public Accounts Committee. He noted that: about 50 per cent of PCTs have restricted access to cataract, and we do know that the bulk of policies used by PCTs actually haven t used the best evidence that s available in order to ration care. He has now asked the Royal College of Ophthalmologists to develop cataract commissioning guidance to improve the quality and efficiency of service provision. RNIB welcomes this development and is pleased to be a member of the group developing this guidance. However, we continue to believe there is a powerful case for prioritising the development of the NICE cataract clinical guideline and quality standard prior to 2018. We have already discussed this issue the Government and England. This study shows widespread variation in cataract provision across England which must be addressed as a matter of urgency. An operation which is safe, cost-effective and life changing for the patient should not be left to decline in rate or quality. NICE guidance will not only help commissioners ensure the services they are contracting are of high quality but will also help patients understand what excellent service provision should include. Improving local commissioning is of course only one part of the picture. Strong national leadership is required to ensure guidance is implemented, that good practice is adopted across the country and that poor performance is eradicated. This is why we believe England must create a National Clinical Director for Eyecare. 12

5. Statistical analysis of cataract activity in England This chapter presents the findings from the analysis of Hospital Episode Statistics (HES) data for England. All records were extracted for a five-year period (1 April 2008 to 28 February 2013) where there was a recorded diagnosis of cataract in the record. A HES year is 1 April to 31 March. For 2012/13, only 11 months of data were available at the time of analysis, so totals were divided by 11 then multiplied by 12 to give a projected year-end figure. Further details relating to the methodology are outlined in appendix one. 5.1 Total patients and spells In 2012/13 269,636 patients were treated for cataracts in England, this represents 0.48 per cent of the population. These patients had a total of 340,809 spells during this period. A spell represents a complete stay in hospital. If a patient has a cataract removed from their left eye this will register as one spell in the HES data; should they return to hospital at a later date to have a cataract removed from their other eye, this will register as a second spell. Table 1: shows total number of cataract patients and spells over five years for England Year Total patients Total spells Increase/ decrease in spells compared to the previous year 2012/13 269,636 340,809-2,070 2011/12 268,132 342,879-968 2010/11 267,466 343,847-5,321 2009/10 268,275 349,168 5,610 2008/09 265,169 343,558 35,152 2007/08 243,464 308,406-13

Since 2010/11, there has been small year-on-year increase in the number of patients being treated but this rise is not significant. The number of spells meanwhile has fluctuated over the five-year period. We would expect to see both the number of operations and spells to increase as the population ages and demand for rises. The large increase in spells in 2007/08 may be due in part to how data was recorded during the early days of Payment by Results. This is the method of transactions used by the for the management and payment of treatment by providers. 5.2 Variation in cataract rates across England While the national figures show a small but encouraging increase in number of operations taking place, variation is seen across the country in terms of each Clinical Commissioning Group (). 5.2.1 Variation of rates: range Analysis of the 211 s shows a large difference in the rate of spells per 100,000 of population between the highest, and average figure. As mentioned above, the analysis uses spells per 100,000 of population at level. This enables data analysts to compare like for like accounting for the fact that each serves different patient population sizes. Table 2: shows the highest, and average rates of cataract operations per 100,000 of population over a five-year period 2012/13 2011/12 2010/11 2009/10 2008/09 Highest rate per 100,000 of population Lowest rate per 100,000 of population Average rate per 100,000 of population 1,147 1,259 1,298 1,192 1,118 267 315 300 345 320 613 622 641 662 646 14

In terms of the types of spells, the majority were associated day cases, accounting for 99 per cent of all spells in 2012/13. Only one per cent required an overnight stay in hospital. 5.2.2 Variation of rates: and highest performers Of the 211 s analysed, 121 s had less spells per 100,000 of population than the average figure and 10 of these are in London. The following tables show the 20 s the and highest rates of per 100,000 of population respectively. These outliers do not provide definitive evidence of where good or poor performance is taking place but, in the case of the latter; do suggest where unacceptable variation could exist. Cataract service provision is a complex picture and those higher rates of could, for example, have a greater number of older people in their area whereas those low rates could be serving younger populations. 15

Table 3: shows the 20 s the spells per 100,000 of population in 2012/13 Name Cataract spells per 100,000 of population in 2012/13 South Reading 267 Ipswich and East Suffolk 336 Central Manchester 337 Tower Hamlets 344 Nottingham City 346 Newham 348 City and Hackney 351 Wandsworth 358 Lambeth 368 Camden 374 North and West Reading 380 Central London (Westminster) 385 Hammersmith and Fulham 399 Wokingham 400 Bristol 403 North Manchester 410 Southwark 414 Crawley 415 South Manchester 417 West London (Kensington and Chelsea, Queen s Park and Paddington) 420 16

Table 4: shows the 20 s the highest spells per 100,000 of population in 2012/13 Name Cataract spells per 100,000 of population in 2012/13 Fylde and Wyre 1,147 North Norfolk 1,145 West Norfolk 1,033 Blackpool 1,031 South Tyneside 1,007 Kernow 993 West Lancashire 991 Cumbria 971 Durham Dales, Easington and Sedgefield 960 Sunderland 942 North Durham 915 Darlington 905 West Cheshire 896 Airedale, Wharfedale and Craven 886 South Devon and Torbay 885 Scarborough and Ryedale 880 Lincolnshire East 871 North, East, West Devon 856 South Norfolk 850 Northumberland 847 17

5.2.3 Variation of rates: decreases and increases Comparative analysis was undertaken to examine which s show a consistent reduction in the number of cataract operations per 100,000 of population since 2010. The following (see table below) were identified, and the largest decline was observed in Corby a decline of 647 spells per 100,000 of population since 2010. Table 5: shows the rank of s the largest decline in spells per 100,000 of population since 2010 Name Decline in spells per 100,000 of population since 2010 Corby -647 Horsham and Mid Sussex -288 West Suffolk -273 Nene -257 Coastal West Sussex -250 East Staffordshire -237 Shropshire -186 Luton -180 Haringey -165 Stoke on Trent -157 Wandsworth -128 Trafford -127 South Norfolk -125 South Reading -120 South Manchester -120 Lincolnshire East -117 Blackburn Darwen -110 Bracknell and Ascot -107 Camden -100 18

Table 6: shows the s consistent increase in spells per 100,000 of population over the last five years Name 2012/13 2011/12 2010/11 2009/10 2008/09 Greater Huddersfield East Riding of Yorkshire Greater Preston South Devon and Torbay Bradford Districts 560 555 512 511 446 845 838 772 771 728 758 747 745 621 548 885 846 792 790 786 654 609 560 543 511 5.3 referral to treatment time An analysis of time to treatment from first attendance at the eye clinic to subsequent cataract reveals a large range in waiting times across England. The average time in Heywood, Middleton and Rochdale is 222 days compared to 44 in Ipswich and East Suffolk. The average time to treatment was 129 days in 2012/13 and little variation was observed between years. 19

Table 7: shows the 20 s the longest average waiting time in days from first outpatient appointment to cataract Name Heywood, Middleton and Rochdale Number of days 222 Southampton 215 Bassetlaw 201 Wokingham 186 Wirral 186 North East Lincolnshire 185 North Lincolnshire 183 Telford and Wrekin 180 Solihull 173 South Sefton 173 Luton 172 Cumbria 171 Havering 170 Stoke on Trent 170 Barnet 169 South Reading 167 North Staffordshire 166 Islington 166 Walsall 166 Birmingham CrossCity 165 20

Table 8: shows the 20 s the shortest average waiting time in days from first outpatient appointment to cataract Name Number of days Ipswich and East Suffolk 44 West Suffolk 53 Rotherham 53 Lancashire North 81 Central London (Westminster) 81 West London 82 Medway 84 Trafford 85 West Norfolk 85 South Manchester 86 Vale of York 86 South Worcestershire 88 North Norfolk 90 Lincolnshire West 92 Hull 93 South Norfolk 93 Tameside and Glossop 95 Wyre Forest 95 Crawley 97 Central Manchester 98 21

5.4 Patient demographics: age and gender breakdown 5.4.1 Breakdown by age Analysis shows that the percentage of cataract spells split by age band has remained largely static during the years of study. The main age band for activity is 76 80 years and the majority of activity occurs in the over 70 91+. Table 9: shows percenetage of procedures by age band over a five-year period Year 56 60 (%) 61 65 (%) 66 70 (%) 71 75 (%) 76 80 (%) 81 85 (%) 86 90 (%) 91+ (%) 2012/13 3.68 6.65 9.92 13.77 16.64 14.91 8.16 2.40 2011/12 3.58 6.61 9.35 13.64 16.67 14.95 8.24 2.35 2010/11 3.55 6.34 9.21 13.72 16.80 14.76 8.53 2.10 2009/10 3.42 6.05 9.04 13.55 16.75 14.86 8.40 2.13 2008/09 3.55 6.00 9.05 13.51 16.86 15.04 8.37 2.24 5.4.2 Breakdown by gender Analysis of the HES data shows that there are more women treated than men for cataract in the five-year study period. This is reflected across England and there appear to be no regional variations. The activity rates mirror population rates, where women live on average 7.5 years longer than men. Table 10: shows percenetage of procedures by gender over a five-year period Year Male % Female % 2012/13 42.46 57.39 2011/12 41.32 58.39 2010/11 41.57 58.31 2009/10 42.46 57.39 2008/09 40.61 59.33 22

Analysis was also undertaken to identify whether certain co-morbidities were more common in patients cataracts. No differences were identified in this group compared to other patients in the same age bands. The main co-morbidities were chronic diseases that would be expected in older patients, eg chronic obstructive pulmonary disease (COPD), heart disease and diabetes etc. 5.5 Focus on second eye Pseudonymised records allow patients to be tracked through the healthcare system using an identification number that does not link back to their true identity. This enabled data analysts to review rates of second eye ie measured as those patients who had a second cataract operation in 365 days of the first. This time period (ie 365 days) was used to capture patients who had a cataract in both eyes rather than those who developed a second cataract a significant time after the first. 5.5.1 National trends Figures show a national decrease in the total number of second eye cataract operations following a peak in 2009. This is significant as we would expect to see an increase as demand for rises due to the ageing population. It is also strange as the total number of first eye cataract operations has increased slightly over this time period and we would expect the need for second eye to rise accordingly (if waiting times were not increasing and they were conducted at the same rate). Table 11: shows the number of second eye cataract operations since 2007/08 2011/12 2010/11 2009/10 2008/09 2007/08 Number of First Eye Operations Number of Second Eye Operations in 365 days 257,080 253,873 252,468 249,209 228,064 91,959 92,700 96,336 92,560 80,977 5.5.2 Variation in second eye rates A detailed analysis of individual s shows a mixed picture in terms of variation. Some areas consistently perform a high numbers of second eye cataract operations, such as Sunderland ; whereas, other areas consistently perform much lower numbers including Coastal West Sussex. There is no national figure to show what a good rate of second eye cataract should be. However, a recent evidence review suggests that on average second eye 23

should occur in 40 per cent of cases ie 40 per cent of patients who have first eye are likely to develop a second cataract and need in the second eye. The review was based on data collected since 2008 from 11 European countries [14]. Based on this evidence, the table below shows the s that had percentages of second eye cataract operations below 30 per cent in 2011, suggesting potential under performance. While findings in this study reveal a lot of variation year on year, a few s are consistently toward the bottom of the table. Interesting, Airedale, Wharfedale and Craven performed less than 30 per cent of second eye operations in 2008 and more than 50 per cent in 2011. Table 12: shows s that had low rates of second eye per 100,000 of population in 2011 (ie less than 30 per cent of cases) Name 2011 (%) 2010 (%) 2009 (%) 2008 (%) Coastal West Sussex 14.66 15.38 22.68 14.36 Rushcliffe 19.44 31.86 41.11 37.57 Nottingham North and East Nottingham City Newark and Sherwood Leicester City 20.67 31.49 39.30 39.70 20.99 31.16 38.48 37.60 23.05 36.88 44.41 43.03 23.17 28.74 23.45 20.79 Ashford 23.52 29.47 32.94 34.82 North Staffordshire Stoke on Trent Mansfield and Ashfield 23.95 25.22 31.28 22.22 24.16 24.11 32.75 23.62 24.18 35.29 46.30 26.68 24

Name 2011 (%) 2010 (%) 2009 (%) 2008 (%) East Leicestershire and Rutland Brighton and Hove Ipswich and East Suffolk Nottingham West 24.21 30.78 31.28 27.58 24.22 30.32 28.81 27.43 24.42 25.55 26.37 28.81 25.00 28.63 40.55 41.40 Bristol 25.35 21.57 25.28 23.59 South Reading Heywood, Middleton and Rochdale Canterbury and Coastal West Leicestershire Wokingham North Somerset Isle of Wight Oxfordshire Sandwell and West Birmingham 25.53 21.82 31.50 32.87 25.97 29.55 39.13 42.16 26.09 34.07 35.48 32.66 26.22 34.97 34.64 33.79 26.31 26.90 29.78 32.06 26.44 24.52 24.49 26.57 26.44 25.96 29.11 27.93 26.52 25.34 24.68 27.08 26.63 31.56 30.03 31.76 25

Name 2011 (%) 2010 (%) 2009 (%) 2008 (%) Gloucestershire 27.15 25.68 35.38 31.03 Thanet 28.06 32.03 35.78 36.79 North and West Reading Surrey Downs 28.09 25.12 28.61 33.23 28.10 34.83 39.01 32.65 Nene 28.46 35.74 39.58 37.78 North Manchester Hammersmith and Fulham ditch and Bromsgrove 28.50 33.39 33.92 34.55 28.72 32.38 29.38 30.93 28.79 36.26 44.90 32.08 Shropshire 28.87 32.56 36.49 34.96 Eastern Cheshire 29.02 29.97 32.82 35.81 Walsall 29.03 32.30 30.09 27.65 Crawley 29.16 34.55 41.87 36.16 West Kent 29.27 30.20 37.79 37.52 Southern Derbyshire South Gloucestershire 29.43 37.92 59.73 59.81 29.58 19.57 25.83 26.61 Solihull 29.58 31.63 38.57 38.48 Erewash 29.66 35.37 53.07 57.05 Oldham 29.80 29.15 36.74 33.01 26

Name 2011 (%) 2010 (%) 2009 (%) 2008 (%) Tower Hamlets 29.84 33.29 35.07 35.99 Bury 29.97 30.92 37.66 34.19 Table 13: shows s that had high rates of second eye per 100,000 of population in 2011 (ie higher than 50 per cent of cases) Name 2011 (%) 2010 (%) 2009 (%) 2008 (%) Sunderland 62.81 62.75 63.09 60.04 South Tyneside Greater Preston Chorley and South Ribble 62.73 64.82 61.96 63.00 57.35 51.62 50.00 41.99 55.61 54.49 47.40 41.78 Rotherham 53.76 52.55 53.89 49.91 Airedale, Wharfedale and Craven 53.65 44.01 44.80 28.43 Blackpool 50.10 49.30 43.39 51.18 Hartlepool and Stockton-on-Tees North Durham 50.07 48.27 49.20 47.78 50.07 51.37 51.34 52.27 27

6. Commissioning decision making 6.1 Background Government guidance Action on cataract was issued in 2000 and stated that patients should be referred for cataract if they: had reduced vision from the cataract experienced a negative impact on their quality of life due to inability to drive or carry out day-to-day activities are willing to have the cataract removed and aware of the risks involved. The guidance did not establish a visual acuity threshold that patients should reach before they are eligible for treatment but we are aware that a large number of commissioners are introducing such thresholds. In some cases this helps ensure the right patients get treatment and unnecessary, which carries some risk, does not take place. However, we are also aware that these thresholds are preventing eligible patients getting treatment and that commissioners are imposing such restrictions out evidence to prove they are providing optimum care and not harming the patient. 6.2 Commissioning policies being operated across England In 2011 and 2012, RNIB made Freedom of Information request to all PCTs in England and found that just over 50 per cent used arbitrary visual acuity levels to restrict rather than taking into account the impact the cataract was having on the patient s quality of life. In February 2013 we repeated this exercise and once again found wide variation in cataract commissioning policies across the country. RNIB received responses from all PCTs except one, which was reviewing its referral criteria. More than 50 per cent were still found to have restrictive policies in place. Most commissioners stated that there were no plans to make changes to their policies in the immediate future; therefore, we believe the responses received are representative of those being operated by the new s: 49 per cent of policies have no arbitrary restrictions and have been rated green. This means clinicians and patients can jointly decide if is required based on need. Many s in the North East of England operate such polices, as do s in other areas of England including Medway, South Kent Coast and Canterbury and Coastal. 28

33 per cent of policies contain a visual acuity restriction but allow for exemptions, for example, if patients experience glare or need to drive. This means that many will be denied unless they meet the exceptions in the criteria. We have rated these policies orange and many s in the West Midlands operate these policies. 18 per cent of policies are very restrictive having visual acuity thresholds and limited or no exemptions. We have rated these as red as patients will need to meet the strict criteria before being considered for. s in the East Midlands tend to operate these policies as well as other areas such as Oxfordshire, East Surrey and Guildford and Waverley. 6.3 Correlation between commissioning policies and rates Analysis was undertaken to examine if restrictive policies resulted in expected decreases in rates. However, no significant correlation was observed. While restrictive/ unrestrictive commissioning policies do not always correspond lower/higher rates of, we are aware that some patients are being denied the they desperately need due to arbitrary thresholds. However, one trend was identified when polices were mapped against the s who have shown a year-on-year decline in rates since 2009/10. Out of the 25 s, 17 had restrictive policies. Table 14: shows s year-on-year decline in rates since 2009/10 mapped against commissioning policies name Lincolnshire East South Norfolk Newcastle West Commissioning policy Restrictive policy (orange) Restrictive policy (orange) No policy (green) Spells per 100,000 population (2012/13) Spells per 100,000 population (2011/12) Spells per 100,000 population (2010/11) 871 913 941 988 850 853 893 976 730 733 754 784 Spells per 100,000 population (2009/10) 29

name Shropshire Lincolnshire West West Suffolk Birmingham CrossCity Corby Blackburn Darwen Nene Trafford North Staffordshire East Staffordshire Commissioning policy Restrictive policy (orange) Restrictive policy (orange) Restrictive policy (red) Restrictive policy (orange) Restrictive Policy () No Policy () Restrictive policy () Restrictive policy () Restrictive policy (orange) Restrictive Policy () Spells per 100,000 population (2012/13) Spells per 100,000 population (2011/12) Spells per 100,000 population (2010/11) 684 760 851 870 683 693 731 782 565 654 772 838 558 563 579 582 545 564 831 1192 537 574 644 647 536 609 774 793 516 538 595 643 500 537 578 588 488 609 675 724 Spells per 100,000 population (2009/10) 30

name Bury Horsham and Mid Sussex Stoke on Trent Haringey Coastal West Sussex Luton Bracknell and Ascot South Manchester Wokingham Camden Commissioning policy Restrictive policy (orange) Restrictive policy () Restrictive policy () No policy () Restrictive policy () Restrictive policy () Restrictive Policy () Restrictive Policy () Restrictive policy () No policy () Spells per 100,000 population (2012/13) Spells per 100,000 population (2011/12) Spells per 100,000 population (2010/11) 484 486 569 580 475 551 726 763 473 507 585 630 462 536 596 627 453 528 606 703 438 525 595 618 435 454 514 542 417 441 506 536 400 407 448 485 374 386 393 473 Spells per 100,000 population (2009/10) 31

name Wandsworth South Reading Commissioning policy Restrictive policy () Restrictive policy () Spells per 100,000 population (2012/13) Spells per 100,000 population (2011/12) Spells per 100,000 population (2010/11) 358 412 454 487 267 315 370 387 Spells per 100,000 population (2009/10) 32

7. Conclusion This report contains the most detailed analysis of cataract data to date. It confirms the findings of previous RNIB reports, published in June 2011 [2] and May 2012 [3], that in many areas of the country the is failing to provide access to cataract when patients desperately need it. It confirms that rationing is still taking place based on arbitrary visual acuity thresholds. In a few areas the rationing is taking place on the basis of cost alone. Following a meeting the Royal College of Ophthalmologists and RNIB, the Health Minister Earl Howe wrote to express his shared concern about access to cataract. Among other things he confirmed that he had passed on to England our request that the production of a NICE clinical guideline and quality standard on cataract be prioritised for development in 2013/14. However, RNIB has recently learned from NICE that production of such a standard will not now start until 2018. Such delay is completely unacceptable. There is a major problem that needs to be tackled now, not in five years time. In addition to the NICE quality standard there is a clear need for a National Clinical Director for Eyecare based in England. We have called for such a post on a number of occasions in the past but the need is greater now than ever. Without such a champion inside the there is every danger that eye health and cataract will yet again be sidelined. Failure to act now will simply widen health inequalities and deny a growing number of patients their sight. 33

References [1] HESonline, 2013. Main procedures and interventions. Available at: www.hscic. gov.uk/hes, accessed 1 July 2013. [2] RNIB/Royal College of Ophthalmologists, 2011. Don t turn back the clock: cataract the need for patient-centred care. Available at: rnib.org.uk/ getinvolved/campaign/yoursight/documents/cataract_report.pdf, accessed 1 July 2013. [3] RNIB, 2012. Save our sight campaign report. Available at: rnib.org.uk/ getinvolved/campaign/yoursight/documents/save_our_sight_campaign_report. pdf, accessed 1 July 2013. [4] RNIB/Royal College of Ophthalmologists, 2010. Understanding cataracts. [5] Desai P. Cataract evidence of effectiveness. This paper references the following studies: Desai P et al, 1999. Br J Ophthalmol. 83, 1336 1340; Jaycock P et al, 2009. Eye. 23, 38 49; Jaycock P et al 2009. Eye. 23, 38 49; Jaycock P et al 2009. Eye. 23, 38 49; Desai P et al, 1996. BJO. 80 (10), 868 873. [6] Skiadaresi E, 2012. Subjective quality of vision before and after cataract. Arch Ophthalmol. 130 (11), 1377 1382. [7] Lee BS, 2013. Functional improvement after one- and two-eye cataract in the Salisbury Eye Evaluation. Ophthalmology. 120 (5), 949 55. [8] Weale M, 2011. A cost-benefit analysis of cataract based on the English Longitudinal Survey of Ageing. Journal of Health Economics. 30 (4), 730 739. [9] Access Economics, 2009. Future Sight Loss UK (1): Economic Impact of Partial Sight and Blindness in the UK adult population. Available at: rnib.org.uk/ aboutus/research/reports/2009andearlier/fsuk_summary_1.pdf, accessed 1 July 2013. [10] Tseng V et al, 2012. Risk of Fractures Following Cataract Surgery in Medicare Beneficiaries. JAMA: The Journal of the American Medical Association, 308 (5), 493 501. [11] Department of Health, 2000. Action on cataracts good practice guidance. [12] Royal College of Ophthalmologists, 2010. Cataract guidelines. Available at: www.rcophth.ac.uk/core/core_picker/download.asp?id=544x, accessed 1 July 2013. [13], 2011. Atlas of Variation in Healthcare. Available at: www.rightcare. nhs.uk/index.php/nhs-atlas/atlas-downloads, accessed 1 July 2013. 34

[14] Lundström M et al, 2012. Evidence-based guidelines for cataract : guidelines based on data in the European Registry of Quality Outcomes for Cataract and Refractive Surgery database. Journal of Cataract & Refractive Surgery. 38 (6),1086 1093. Available at: sciencedirect.com/science/article/pii/ S0886335012002982, accessed 1 July 2013. 35

Appendix one: HES data analysis methodology A literature scan was conducted using Google Scholar and searching for Cataract UK from 2009 onwards. This was supplemented by documents supplied by the RNIB, a search of the King s Fund online library and other sources. This provided the background information to inform the research. Analysis was undertaken using Hospital Episode Statistics (HES) data for England. Timeframe: all records were extracted for a five-year period (1 April 2008 to 28 February 2013) where there was a recorded diagnosis of cataract in the record. A HES year is 1 April 31 March. Only 11 months of HES data were available for 2012/13 at the time of analysis. Therefore, totals were divided by 11 then multiplied by 12 to give a projected year-end figure. Inpatient and outpatient activity: data used for this analysis were for inpatient activity for England. Cataracts are predominantly managed as a day case procedure in the. Outpatient activity data has not been included in this analysis as historically coding has not been robust in this data set. Providers are only now beginning to code outpatient activity more consistently. Numbers and spells: data was analysed using absolute numbers both in terms of patients and spells. A spell is defined as a completed stay in hospital, where one patient could be admitted for first eye at one point (first spell) and second eye at a later date (second spell). Comparing Clinical Commissioning Groups (s): the analysis uses spells per 100,000 of population at level. This enables data analysts to compare like for like accounting for the fact that each serves different patient population sizes. We appreciate that comparing s is complex, not only due to different population sizes but also be due to different population profiles (ie variations in age, gender, ethnicity and deprivation). Mapping data onto s: In April 2013, PCTs ceased and were replaced by s. In order to undertake retrospective analysis all patients were mapped by GP practice to the new configuration. Therefore findings in this study are available by year by. Population data is provided by aggregating practice level populations to the governing and is cross-matched ONS data and data supplied by the Health and Social Care Information Centre. 36

Analysis using primary diagnosis: there are a number of different methodologies that can be used to interrogate HES data as it contains a variety of fields that can be analysed. This study used the patient s primary diagnosis ie reflecting the reason why they attended hospital. A recorded diagnosis was based on the World Health Organisation (WHO) International Classification of Disease version 10 (ICD10) coding scheme. The following ICD10 codes were included in this study: H250 Senile incipient cataract H251 Senile nuclear cataract H252 Senile cataract, morgagnian type H258 Other senile cataract H259 Senile cataract, unspecified H261 Traumatic cataract H262 Complicated cataract H263 Drug-induced cataract H264 After-cataract H268 Other specified cataract H269 Cataract, unspecified Tracking patients through the system: pseudonymised records allow patients to be tracked through the using an identification number that does not link back to their true identity. This enabled data analysts in this study to review rates of second eye, ie measured as those patients who had a second cataract operation in 365 days of the first. This time period (ie 365 days) was used to capture patients who had a cataract in both eyes rather than those who developed a second cataract a significant time after the first. The objective of the HES data analysis was to examine variation in cataract provision across England. The following areas were reviewed in detail: Total spells split by day case and overnight. Patient demographics. Time to treatment patterns. Retreatment for second eye. Disclaimer: while all care has been taken regards the analysis of these data. Harvey Walsh Ltd takes no warranty, guarantee or representation that the material is error free. 37