Undetected sight loss in care homes - International Longevity Centre

Undetected sight loss in care homes: an evidence review Jessica Watson and Sally-Marie Bamford International Longevity Centre - UK July 2012 www.ilcuk.org.uk

The International Longevity Centre - UK (ILC-UK) is an independent, non-partisan think-tank dedicated to addressing issues of longevity, ageing and population change. It develops ideas, undertakes research and creates a forum for debate. The ILC-UK is a registered charity (no. 1080496) incorporated with limited liability in England and Wales (company no. 3798902). ILC–UK 11 Tufton Street London SW1P 3QB Tel: +44 (0) 20 7340 0440 www.ilcuk.org.uk This report was first published in July 2012 © ILC-UK 2012

Acknowledgements The authors would like to thank Thomas Pocklington Trust and particularly Sarah Buchanan for supporting this work. Thanks also go to all the contributors: in interview, at the focus group and in informal discussions (the full list is included in the Annex). It should be noted that all opinions expressed in this review are the authors’ and should not be considered representative of the contributors. Thanks to David Sinclair and Lyndsey Mitchell at ILC-UK for their assistance with the production of this review. ILC-UK would welcome any feedback on this publication. Please send your comments to Jessica Watson ([email protected]).

Table of Contents Executive Summary .................................................................................. 4 Introduction................................................................................................ 6 Background................................................................................................ 8 Legislation and regulation ...................................................................... 14 Issues and barriers ................................................................................. 19 Potential solutions .................................................................................. 25 Recommendations .................................................................................. 29 References ............................................................................................... 30 Annex........................................................................................................ 35

Executive Summary Overview This evidence review provides an overview of sight testing and sight loss in residential care homes, including the legislative and regulatory context framing this issue. This review was informed by desk research, informal stakeholder interviews and an expert stakeholder meeting to discuss the potential solutions and recommendations.

Context As we age, our eyesight naturally deteriorates. Of people aged 75 and over, one in five are living with sight loss, and in the population aged over 90 this climbs to one in two. This is a problem that will continue to increase as the population ages. Care home residents suffer from unusually high rates of poor eyesight, with the RNIB estimating that as many as over half of older residents in care homes have some form of sight loss. Furthermore it is argued up to 70% of sight loss may be avoidable, with the chances of reduction significantly improved by early detection. Poor eyesight can have significant repercussions for health and quality of life for residents, a knock-on effect for other aspects of health and quality of life. As well as potential complications from the eye condition itself, it can increase the risk of falls and contribute to depression and isolation. There are significant associated costs with these health problems: for example, falls directly relating to sight loss in the UK are estimated to cost £128m a year in medical costs alone.

Key issues and barriers •

Lack of awareness of sight loss and visual impairment, associated health problems and symptoms at all levels, particularly residents, their families and care home staff and managers.

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Similarly, across these groups there is a lack of priority given to eye health, commonly seen as an optional extra rather than an integral element of good health. This is particularly the case for residents who have dementia. There is not enough connection with good eye health as a contributing factor to a lower rate of falls, depression and isolation; and better quality of life.

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Eye health overlooked as a health indicator in assessment and checks of care home residents; both internally as part of general health checks and externally through health professional consultations and CQC assessments. While eye health is referenced in general health outcomes, as a ‘silent’ health problem it is often missed off checks in practice.

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Reflecting the lack of explicit inclusion of eye health indicators, there is a limit on the time and organisational practices for informal sight checking or assessing potential symptoms by case home staff, exacerbated by low awareness of the issue.

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Training sessions and materials for care home staff on eye health and sight loss is available, but there are limits in delivery of training owing to restricted time, staff turnover and other practical barriers, such as shift working patterns.

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Recommendations 1. Create a national awareness campaign on the issue of sight loss in older people with different cross-sections of stakeholders. Awareness of this issue should be increased through education and guidance related to personal experiences for residents and their families, as well as other health professionals such as GPs, nurses and occupational therapists working with the residents 2. The Care Quality Commission should incorporate eye health indicators into their assessment criteria for care homes and across the general health system. Priority given to eye health by care inspectors will support additional time spent on this issue by care staff as well as ensuring high quality standards. 3. Care home providers should be encouraged to add eye health and sight loss testing to their key performance indicators. 4. Further research should be conducted to explore the impact of the General Ophthalmic Services contract restrictions on domiciliary sight testing, specifically the need to prenotify appointments with individual patients and to examine the case for the contract to be altered. Relaxation of restrictions on eye health professionals could enable ease in referring residents for sight tests. 5. More qualitative research is required within care homes to ensure barriers to good eye health practices for care home workers, managers and providers are understood. Once barriers to good practice are identified, appropriate intervention and tailoring of existing resources should be pursued. Training sessions for care home staff are considered to have been very effective in improving awareness of eye health, but the coverage of these is patchy and generally provided by the private or voluntary sector. More could be done through further education of the staff and managers of the homes, but understanding the barriers to accessing this information is crucial to its development.

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Introduction This evidence review aims to give an overview of sight testing and sight loss in residential care homes, including the legislative and regulatory context framing this issue. This review was informed by desk research, informal stakeholder interviews and an expert stakeholder meeting to discuss the potential solutions and recommendations. It covers the issues currently experienced by residents of care homes with regard to sight testing and demonstrates the gaps in the formal requirements of care homes and suggests areas where improvements can be made. In particular it examines the current practices of informal vision checking and formal sight testing within the care home, barriers in achieving effective and inclusive sight testing for care home residents, and solutions to overcome these difficulties. This review covers: •

the background to this issue

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the legislation and regulation related to sight testing in care homes

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the shortfalls of the legislative and regulatory framework

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the issues and barriers that occur in practice for involved parties

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potential solutions to these issues for respective involved parties

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recommendations for all parties to carry out these solutions, developed with expert stakeholders in this field

This report aims to frame the context of issues relating to undetected visual impairment and sight loss specifically for older people living in residential care homes, while acknowledging that there are also other groups for whom this problem demands further attention. It should be noted that the issues and barriers highlighted in this report are not exclusive to visual impairment and eye health. For example, people experiencing hearing loss living in residential care homes may encounter many of the same barriers to effective diagnosis and treatment of their sensory impairment. People with learning disabilities (of whom around one in ten has some form of visual impairment (RNIB website - Visual Impairment Learning Disability service)) also share many of the issues raised, with some, such as communication difficulties, being particularly common for this group. Similarly, older people living and being cared for in the community may receive worse eye care than those living in a residential home, furthermore we also acknowledge the need for greater understanding into how best to resolve the issue of poor eye health for people still living in their own homes.

Definitions and parameters This review focuses exclusively on the issues facing older people living in residential care homes (those providing personal or nursing care, see below), and not those still living at home and being cared for in the community. This review concentrates on the situation in England, owing to the differences in legislation and regulation compared to the rest of the UK. However, this review does make reference to select examples of practice elsewhere in the UK. This review takes a broad approach to eye health, for example, including eye conditions related to forms of dementia and stroke. There is also a distinction to be drawn between sight testing, as 6

formally conducted by an eye health practitioner, and sight checking as a process that can be conducted by those with a lay understanding of sight loss and eye health (for example, simple checks of the vision field by care home workers). There are three different professions that operate under the umbrella term of ‘opticians’: •

optometrists, qualified to test sight, prescribe and dispense spectacles and other optical appliances, and can detect signs of eye disease or abnormalities;

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ophthalmic medical practitioners (OMPs), qualified doctors with a specialism in eyes and eye care, can detect and treat eye abnormalities and diseases and can also test sight and prescribe like optometrists;

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dispensing opticians, who are not qualified to test sight or prescribe but are able to dispense and fit spectacles and other optical appliances. (Guidance and Audit Implementations Network, 2010).

Most commonly it is optometrists who conduct sight tests in care homes, but in order to avoid confusion this report refers to ‘eye health professionals’ to cover all practitioners that conduct testing and dispensing in care homes.

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Background Demographic change The UK population is ageing, with the numbers of people aged over 65 increasing by 1.7 million from 1984 to 2009, and a projected 23% of the population will be aged over 65 by the year 2034 (ONS, 2011). This increase is particularly apparent in the oldest old, with the number of people aged over 85 projected to be 5% of the population by 2035, 2.5 times the size of this group in 2010 (see Figure 1). Figure 1: Population by age, UK, 1985, 2010 and 2035

Source: ONS, 2010a

As of September 2011 life expectancy at birth in the UK had reached its highest level on record, at 82.1 years for females and 78.1 years for males (ONS, 2011). However, healthy life expectancy (the period of life that is free from poor health or a limiting illness or disability) is considerably lower, at 70.5 years for females and 68.5 years for males (ONS, 2010). As the older population lives longer, the UK will see a corresponding rise in the number of people living with chronic diseases in long term poor health, as these diseases primarily affect older people (for example, cardiovascular disease).

Age and eye health There are an estimated two million people affected by sight loss in the UK, of which the vast majority are older people (above working age) (Bosanquet and Mehta, 2008). Of people aged 75 and over, one in five are living with sight loss, and in the population aged over 90 this increases to one in two (RNIB website). Age is a common driver for all forms of sight loss in the UK (Bosanquet, 2010), with incidence of all kinds of conditions affecting sight increasing as we get older, alongside normal changes in vision such as a need for increased light (Alzheimer’s Society, 2011; Percival, 2007). A review of studies examining sight problems in the older population found 8

suggested rates of preventable sight loss (caused by cataracts or refractive error) in people aged over 65 as high as 50-70% (Tate et al, 2006). Another study conducted by Evans and colleagues (2004) examined the causes of sight loss in a sample group aged over 75. Of those suffering from minor (defined as 6/18 on the Snellen scale1) sight loss (26% of a sample of 1742), refractive error was the main cause of their poor sight. The causes of more severe sight loss were available for 76% of the remaining group, the breakdown of which is detailed in Figure 2. Figure 2: Causes of severe visual impairment in sample group aged over 75

Adapted from Evans et al (2004)

Common causes of sight loss in older people Refractive error describes both long and short sightedness. It causes blurring of vision and can be corrected with glasses or contact lenses. Despite being one of the eye problems easiest to remedy, it is often overlooked as a cause of sight loss (Bosanquet, 2010). Age-related macular degeneration (AMD) affects central vision and the ability to see fine detail. There are two main types; wet (10-15% of all AMD cases) and dry, which is more common. Wet AMD is more treatable, but requires early intervention in order to be effective. There is no treatment for dry AMD (RNIB Eye Conditions website). Cataract is the clouding of the lens. Alongside the effects of normal ageing of the eye, common causes of cataract include diabetes, a trauma and some medications or surgery for other eye problems (RNIB Eye Conditions website). Cataracts develop quite slowly, but are usually easily treatable with a minor operation. Glaucoma is the name given to a group of eye conditions that affect the optic nerve. It can be caused by raised eye pressure or by weakness in the optic nerve. There are a number of different types which present with different symptoms, all of which are treatable. Some kinds of glaucoma do not have obvious symptoms for a long period, but still cause damage to vision (RNIB Eye Conditions website). 1

The Snellen scale is used to measure visual acuity (clearness of vision). It is measured using a Snellen test, which consists of rows of letters decreasing in size that are read from a certain distance away. The first number refers to the distance in metres at which the chart is read, and the second number refers to the size of letters that can be read without assistance. Normal visual acuity is 6/6.

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Diabetic eye disease can take a number of forms, the most serious of which is diabetic retinopathy, a condition affecting the blood vessels in the retina, which affects 40% of people with type 1 diabetes and 20% of those with type 2 diabetes (RNIB Eye Conditions website). Rates of diabetic retinopathy in the over 65s have doubled since 1990-91 (Bunce and Wormald, 2006). While screening for diabetic retinopathy is at a very high standard in the UK, a key issue in this area is the high number of undiagnosed people living with diabetes (up to half a million: Diabetes UK, 2010) who will be unable to access this screening programme (and other health support). Sight loss can also occur after a stroke, particularly one affecting the right side of the brain (RNIB Eye Conditions website). The issues potentially arising from vision loss after a stroke are varied, including visual field loss and eye muscle problems, making it difficult to focus. Some of these issues may improve over time and others may be permanent. Different forms of dementia can also affect sight independent of other sight conditions. The problems it can cause are varied and range from impairments in visual contrast sensitivity, depth perception, motion perception and colour discrimination (Kéri et al, 1999). Difficulties in visuoperception have been reported for Alzheimer’s disease, dementia related to Parkinson’s disease, Lewy body dementia and vascular dementia (if damage is on or near the visual pathway) (Alzheimer’s Society, 2011). Of these eye conditions, AMD and glaucoma have both increased since 1990-91 and diabetic retinopathy has doubled (Bunce and Wormald, 2006). Rising levels of diabetes and stroke related to unhealthy lifestyles (NHS Information Centre, 2010) may have a future influence on the burden of poor eye health. Two thirds of the sight loss in older people is caused by refractive error and cataracts, both of which can be diagnosed through a sight test and are for the most part easily corrected or treated with glasses or surgery (RNIB website). There are also some treatment options for the other major eye health problems, particularly with early intervention, so it is vital that older people avoid long periods without sight testing to aid the potential for prevention.

Care homes The landscape of residential care (in an institution as opposed to care provided at home) in the UK is one of variety, with a mix of state, private and voluntary sector homes that provide different levels of care. The term ‘care home’ covers two distinct levels of care provided in residential homes; personal care and nursing care. Personal care covers assistance with tasks such as washing, eating and dressing residents, whereas care homes that provide nursing care are designed for people who are frailer and have greater health needs, be they mental or physical (First Stop Care Advice website). Homes providing nursing care will have a registered nurse on duty all the time. There are also other residential arrangements in place for older people, such as retirement villages and sheltered housing, but the care offered by such schemes is not at the same level as is currently provided in care homes. A crucial difference between care homes and others types of residential settings for older people is the transfer of responsibility for health to the care home staff. The vast majority of homes offering residential care are run by private companies or voluntary organisations, with only 11% under the control of local authorities (CQC, 2011, p. 30). As the numbers of older people rise, so will the number of people in need of care. Currently there are around 400,000 older people living in care homes across the UK, of which 376,250 are in 10

England (across 10,331 care homes) (British Geriatrics Society, 2011). Projections for the future need for 24-hour care for people aged 80 years or over in England and Wales suggest increases of 82% from 2010 to 2030 with a demand for 630,000 care-home places by 2030 (Jagger et al, 2011).

Dementia Population ageing in the UK will herald an increase in the number of people with dementia. Dementia directly affects over 750,000 people in the UK and it is estimated that this number will increase to over one million by 2025 (Alzheimer’s Society, 2007). This number may in fact represent an underestimate, given that diagnosis rates are lower in the UK than in many other European countries. Diagnosis levels in the UK are estimated at almost 40 per cent, although the number masks significant regional variations (Alzheimer’s Society, 2011). Dementia represents a huge challenge not only for individuals and families, but also for our health and social care system and its workforce. More than one-third of people with dementia live in care homes and dementia is the strongest determinant for entry into residential care for people over 65. At least two-thirds of all people living in care homes have a form of dementia (Alzheimer’s Society, 2007). Care homes are now ‘front-line’ dementia providers, particularly during the severe stages of the disease. People with dementia who live in care homes have among the most complex health and social care needs of any group in UK society (Heath and Sturdy, 2009). A report from the Alzheimer’s Society in 2007, entitled Home from Home, highlighted that while some care homes are providing good-quality care to people living with dementia, many homes are still not providing the level of person-centred care people with dementia deserve. With regards to sight loss, dementia poses some very specific and significant challenges for all actors in the care home environment. The majority of people living with dementia in the UK are aged over 65, and of these 1 in 7 is living with significant sight loss. In the general population, after age 75 the chance of a person having both sight loss and dementia is 2.5% (Dementia and Sight loss Interest Group). Different forms of dementia can also affect sight not limited to loss of visual field and/ or acuity, but also linked to difficulties in carrying out practical activities (Alzheimer’s Society, 2011). The National Institute for Health and Clinical Excellence (NICE) has published guidance providing details of the recommendations and advice for treating patients with dementia. While the guidance includes aims to promote and maintain the independence of people with dementia, including environmental modifications, maintaining good vision is not included (NICE, 2006). Alzheimer’s disease and other forms of dementia affect an individual’s ability to communicate and particularly in the middle to late stages of the disease they may not be cognisant of their own health or social care needs. Therefore, for those with dementia, recognising or even expressing concern about their own respective eye health will be extremely difficult. This in turn represents a challenge to care home workers and managers, as they may not receive the same verbal or physical cues of sight loss compared to other residents without dementia. Some research has highlighted that a diagnosis of dementia can lead to a perception of a resident being ‘difficult’ rather than an awareness that they are displaying sight loss symptoms (Oddy, 2003). This

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situation is further hampered by low levels of awareness and understanding of how to respond to residents with dementia and their specific health and social care needs.

Eye health of care home residents People who live in residential care have historically been an under-researched group. Compounded by the ‘silent’ nature of undetected sight loss and visual impairment, it is extremely difficult to identify an exact number of just how many care home residents are affected by this issue. While there has not been specific research conducted into the total numbers of people living in care homes with undetected sight loss, the documented high risk levels for older people suggest that the number who are could conceivably be very high. The RNIB estimate that as many as over half of older residents in care homes have some form of sight loss (RNIB, 2010). Additionally, existing research examining sight loss among adults who are cared for has found that people living in care homes are up to five times more likely to experience sight loss than someone cared for at home (Mitchell et al, 1997). Turpin (2011) suggests three possibilities for these high levels of visual problems in care homes; a higher likelihood of visually impaired people to be admitted to care homes (although co-morbidity issues may be a stronger contributing factor, see Evans, 2008); difficulty in accessing eye care services; and that care home residents’ co-morbidities mean that eye care interventions are overlooked or thought unnecessary. Other data can inform this picture; for example, out of 1.75 million people who could benefit from a domiciliary sight test provided at no cost to them by the NHS, only 418,000 tests (UK total; 346,500 in England) were performed in 2008/9 (these figures include people who are cared for in the community as well as those in residential care homes) (FODO, 2010). The review of UK sight loss prevalence conducted by Tate and colleagues (2006), which suggested rates of undetected sight loss of up to 70%, found that few studies included care home residents; though taking into account high risk factors, the problem is likely to be far greater in this group. There is potentially a very high number of people living in care homes with varying stages of deteriorating sight, without the knowledge of or ability to raise this issue with care home workers, who are equally unaware of this problem.2

Evidence supporting intervention Sight loss comes with an enormous financial cost. The cost to society of people who are blind or have sight loss has been estimated to between £4.1 billion and £8.8 billion a year (including people who have sight loss but do not report it) (Ethical Strategies, 2003). The RNIB has estimated that half of this cost is avoidable through increasing regular sight tests and early detection, projecting savings of £2 - £4.1billion annually through these measures (Bosanquet, 2010). In response to this issue, the UK Vision Strategy has a strategy outcome entirely dedicated to “Eliminating avoidable sight loss and delivering excellent support for people with sight loss” (UK Vision Strategy, 2008). A report by Access Economics (2009) commissioned by the RNIB ran a cost benefit analysis of various areas for improvement in eye care. Running a campaign encouraging people aged over 60 to have regular sight tests has a potential cost effectiveness ratio of £24,200 per Disability Adjusted Life Year (in comparison to not running the campaign). 2 It should be noted that there are many examples of excellent practice of sight testing in care homes. This report does not aim to reduce the laudable outcomes of these examples, but to highlight the importance of this practice being repeated across the country.

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A lack of detection of sight loss can also lead to a higher level of falls. The rate of falls for older people with sight loss is 1.7 times that of people without eye problems (Legood et al, 2002). A joint policy statement from the British Geriatrics Society and the College of Optometrists (2010) calls attention to the impact of falls and their associated pathologies, and the related benefits of improving vision for people at a higher risk of falling, of which care home residents are a key group. With one in three over 65s falling every year, falls are the most frequent and serious accident affecting this group (Age UK website, 2010). Over a 12-month period the medical cost of falls among people with sight loss is estimated at £269 million, and falls that are directly related to having sight loss at £128 million (Scuffham et al, 2002). In addition to the physical health benefits of maintaining good eye health, there are also mental health benefits of preventing sight loss. The relative risk of depression is 3.5 times higher in people who experience sight loss, compared to those who do not (Access Economics for RNIB, 2009). The prevalence of depression in people in residential care is thought to be around 40%, and rates of depression are generally higher for older rather than younger people (10-15% for over 65s compared to 9% in younger age groups) (SCIE website). Furthermore it has been argued sight loss has been found to be a key contributory factor to suicide in older people (RNIB Cymru, 2011). Improving sight can also improve personal and social factors for older people, leading to an increased quality of life, enabling them to be more active and engaged. Research conducted by the Alzheimer’s Society demonstrated that ‘the availability of activities and opportunities for occupation is a major determinant of quality of life’, and not having enough to do was a major issue for care home residents (Healthcare at Home, 2011). Some studies have suggested that the percentage of time spent on ‘constructive activity’ in care homes could be as low as 3% (Ballard et al, 2001). Cook et al (2005) also found that despite being in a larger community than an older person living alone at home, sight loss can still cause feelings of isolation for people living in residential care. The implications of improving vision in care homes are not limited to improving the quality of life and potential health of the residents. Additionally, an awareness and correction of sight problems, such as glasses or improving contrast and lighting, can cut down the time needed for staff to carry out tasks such as hand-feeding residents and could also reduce or help minimise the risk of certain forms of challenging behaviour.

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Legislation and Regulation Sight testing in England Sight testing in England and Wales is carried out under the General Ophthalmic Services contract (GOS), which describes the relationship between the NHS and eye professionals and the required actions of the eye professionals in testing sight and prescribing further correction or treatment. Under the GOS, sight tests are carried out in order to both check the health and functioning of the eye, and to provide prescriptions for glasses or contact lenses if necessary (General Ophthalmic Services Contract Regulations, 2008). Under the Health and Social Care Act (2012) primary eye health services including budgets for GOS sight test are to be managed by the NHS Commissioning Board, previously managed by Primary Care Trusts. Certain members of the population are entitled to free eye tests, paid for by the NHS. This includes, but is not limited to: people over the age of 60, people with glaucoma and diabetes (or are aged 40+ with an immediate relative with glaucoma or have been advised by an ophthalmologist of being at risk of glaucoma), people who are below a certain threshold to qualify for subsidised tests based on socio-economic status (NHS choices website). This last group may also qualify for vouchers towards the cost of glasses. Free eye tests are conducted by eye health professionals who claim back the NHS charge from the GOS budget. However, the GOS payments are restricted to sight tests that fall within the recommended frequencies agreed by the Department of Health, the Association of Optometrists and the Federation of Ophthalmic and Dispensing Opticians (FODO). The current guidelines recommend sight tests once every two years for adults aged between 16-70 years and annually for: people aged over 70; people with diabetes; or people aged over 40 with a family history of glaucoma or with ocular hypertension and are not in a monitoring scheme (Primary Ophthalmic Services Regulations, 2008). However, an eye practitioner may claim for a GOS sight test at a shorter interval if there is a clinical reason for doing so, for example, if the patient has a pathology that is likely to worsen. This reason must be indicated on the request for reimbursement. In the year to the end of March 2009 16.5 million sight tests were carried out in England, of which 5.2 million were private and the remainder were NHS funded (FODO, 2010). Sight testing is provided by eye professionals who conduct testing either at a practice or through mobile or domiciliary testing for people who are unable to leave their homes. Not all eye professionals conduct domiciliary testing, and specialist equipment is required by those that do. People who live full-time in a residential care home qualify for domiciliary testing as long as the home is their main place of residence and they are “unable to leave the home unaccompanied because of physical or mental illness or disability” (NHS Choices website). Those who qualify for domiciliary testing also receive their eye tests free on the NHS. When carrying out eye testing in a domiciliary setting, eye professionals must notify the patients to be tested and provide notice (previously to PCTs, now under the Health and Social Care Act (2012) to the NHS Commissioning Board, which will be established October 2012) of their visit (48 hours’ notice for one or two patients and three weeks for three or more patients) (General Ophthalmic Services Contract Regulations, 2008). This notice period permits monitoring as to whether that patient is eligible for

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another sight test. This process was designed to prevent tests being performed unnecessarily and charges claimed for by multiple eye health practitioners. Representative bodies of the eye health professionals have responded to the complex requirements of a domiciliary sight test and the variety of issues that a patient confined to their residence may experience by producing a code of practice for domiciliary testing. The practice guidelines reinforce the entitlement of people receiving domiciliary testing to the standards experienced by those receiving eye tests at the eye professional’s practice (for example, being treated as an individual and not having to participate in group testing). The guidelines also highlight issues such as communication where special attention may be needed for this group (ABDO et al, 2009).

Care homes The essential standards of quality and safety for care homes consist of 28 regulations (and associated outcomes) that are set out in two pieces of legislation: the Health and Social Care Act 2008 (Regulated Activities) Regulations 2010 and the Care Quality Commission (Registration) Regulations 2009. Under the Health and Social Care Act 2008 (Regulated Activities) Regulations 2010 a registered individual at the care home (or other service provider) is responsible for residents’ health. These regulations stipulate (among other areas) that care provision (including medical treatment) should be adapted to meet each resident’s individual needs, that the resident should have their privacy, dignity and independence respected, with their views taken into account in their service delivery, and that the care home should work with other providers to ensure the appropriate health and social care support for the resident (Regulations 9, 17 and 24 respectively). These regulations form the basis of how the health of residents is managed in care homes. While they do not specifically mention eye health, a precedent is set for how it should be managed within the broader remit of health and social care provision by the care home. Within the regulatory framework relating to care homes there are few specific mentions of sight testing, with eye health being covered more generally under regulations relating to general health. As a result there is not one pathway to sight testing in a care home. Sight testing can be pursued by the care home (acting on a resident’s request, or otherwise) or can be set up through contact from eye professionals asking to complete sight tests in the home. While much of this will be domiciliary testing, some residents may be able to travel to a practice premises in order to receive testing, which requires some coordination of their medical records and accompaniment by a care home worker. Some care homes will have policies in place to frame their sight testing procedures, and others are purely reactionary to requests from residents. The visiting eye professionals will vary from those from smaller, local practices to one of the larger optometry companies that specialises in sight testing in care homes across the country. Nationally, there is no standard procedure for the management of sight testing for care home residents, with the exception of the precedent set by legislation that healthcare should be patient-focussed and patient-managed. Prior to the Health and Social Care Act 2008 (Regulated Activities) Regulations 2010 and the Care Quality Commission (Registration) Regulations 2009 quality of care was standardised by the National Minimum Standards for Care Homes for Older People, produced by the Department of 15

Health (2003), now superceded. Sight testing was specifically mentioned in the standards, which stipulated that when new residents are admitted care homes undertake a full assessment of their health and personal needs, including: ‘sight, hearing and communication’ (Standard 3.3). This assessment was designed to provide the basis of the care plan each resident receives, to be updated at least once a month to reflect ‘changing needs and current objectives for health and personal care’ (Standard 7.4). In addition, access to sight tests and appropriate aids, according to need, were specifically mentioned in Standard 8, which covers health and healthcare provision. There was also a requirement for staff to aim to ‘maximise [the] service user’s capacity’ (Standard 8.1). The Care Quality Commission (CQC) is the body responsible for the regulation and assessment of all providers of health and social care in England, including care homes and their performance in providing care. They run inspections of homes and provide guidance for good quality care. The CQC has recently undertaken a review of its care assessment practice, and are now using registration and inspection procedures for care providers in line with the standards of quality and safety which came into effect in 2010 (CQC, 2010a). These new guidelines are designed to be more generic and focus on the end outcome of the care provided, rather than detailed descriptions of the provisions that should be made (Stakeholder interview). The Wales Council for the Blind and the Care Standards Inspectorate for Wales (the equivalent of the Care Quality Commission in England) published supplementary guidance relating to sight loss for the Minimum Standards to advise inspectors who were interpreting them (WCB and CSIW, 2003). This guidance expanded on the existing regulations with detailed instructions for ensuring standards were met in relation to sight loss. For example, the advice for Standard 8.1 suggested that a service user’s capacity can be optimised by ‘maximising the sight by proper medical treatment’ (WCB and CSIW, 2003, p. 8). No such supplementary guidance is currently used for care homes in England under the current regulations. Other organisations have produced guidance for care home workers to supplement the minimal information provided by legislation and regulation. The RNIB has provided a guide for care home workers to highlight the need to detect and support sight loss in residential homes. Their guidance for detection includes a list of key signs to be aware of, such as falls, walking into doorways and furniture, difficulty recognising people and so on. The guide then suggests that a sight test should be arranged if two or more key indicators from this list apply to a resident, and suggests support mechanisms such as environmental adjustments (RNIB, 2010). Other guidance and training comes directly from eye professionals themselves, for example, Health Call Optical, a large nationwide group of optometrists specialising in domiciliary eye testing, run training sessions for care home workers to increase awareness of the signs of sight loss (Stakeholder interview). Additional materials have been developed by the third sector, such as the My Home Life bulletin and poster for care homes (My Home Life, 2011).

Wider policy context Improving eye health In 2008 the UK Vision Strategy was launched as an initiative by Vision 2020 UK, lead by RNIB to draw together the variety of groups that work in eye health with common goals. It was developed 16

as a response to the resolution from the World Health Assembly Resolution 2003 to reduce avoidable blindness by the year 2020 (UK Vision Strategy, 2008). The strategy has three key outcomes: 1. Improving the eye health of the people in the UK 2. Eliminating avoidable sight loss and delivering excellent support for people with sight loss 3. Inclusion, participation and independence for people with sight loss (UK Vision Strategy, 2008) The aims for these areas include raising awareness and understanding of eye health in the public and among service providers, including health and social care practitioners. It also aims to ensure ‘the early detection of sight loss and prevention where possible’. Recently, the need to improve eye health has been included in national public health planning. In the Public Health White Paper ‘Healthy Lives, Healthy people’, the Department of Health drew attention to avoidable sight loss with in the inclusion of an eye health indicator in the Health Outcomes framework (Department of Health, 2012). The Department of Health also produced the Commissioning Toolkit for Community-based Eye Care service in 2007, promoting a message of developing eye health provision away from hospital-based services (Department of Health, 2007). Recent progress has also been made on improving eye care service provision, with the establishment of model pathways for cataracts, glaucoma, AMD and low vision (Bosanquet and Mehta, 2008).

Care In November 2010 the coalition Government announced its Vision for Adult Social Care, setting three core values. The Government wants to develop social care which gives people the freedom to choose services and shifts power from the centre. They want social care to be fair in terms of funding and they emphasised the need to move towards a shared responsibility for care between the individual and the state (Department of Health, 2010b). The Care Quality Commission have published a special review of the provision of healthcare in care homes, focusing on whether people in care homes have equal access to services from the NHS, have choice and control over their health care and if the care they receive preserves their dignity and promotes good standards of safety (CQC, 2012). This review assessed the poorest achieving areas, consulted with local care homes and asked care home workers and managers to feedback on the areas where they required more prescriptive notes and signposting to best practice. Among the requested areas for these additional notes are incontinence care, and medication regulation. Vision and sight loss were not one of the areas where additional notes were requested by the trialed care homes (Stakeholder interview). This review also looked at how a person’s healthcare needs were identified, including examining case files for indications of assessment of various areas, including foot care/podiatry/chiropody, dental health, but not for vision or eye health (CQC, 2012).

Older people Policy makers have developed specific strategies to address the unique health problems and issues in accessing health and social care equitably that older people face. In 2001 the NHS 17

introduced the National Service Framework for Older People (NSF), a ten year plan for improving services for older people, particularly looking at creating national standards and preventing disparities in the level of care received (Department of Health, 2001). This strategy supports the idea of joined up care and interaction between different elements of the health and social care system in order to achieve the best possible health and to give older people the maximum amount of independence and quality of life. Questions have been raised over the lack of attention given to sight loss in the NSF document or follow-up progress reports, where there are only brief mentions of the role of sight loss as a risk factor for falls (Bosanquet and Mehta, 2008). This sentiment of ensuring a higher quality of life in older age has been echoed by the Care Quality Commission’s position statement and action plan for older people, including people with dementia (2010b). It too picks up on the need for joined-up care, having identified issues with patients passing between different services and a lack of coordination. As well as providing a basic standard of care quality, it is also highlighted that care homes should be places to promote independence and a good quality of life: ‘”Look at the culture in the (care) home, helping people to enjoy life rather than just waiting for them to die.”’ (CQC, 2010b, p.6). To this end, the plan also supports the personalisation of care and places emphasis on the choice of older people and people with dementia about their care options. In addition to the positive effects of improving quality of life for residents, research has also gone into the potential of preventative health measures to improve the efficiency of services. The role of prevention both as a tool for delaying or reversing deterioration, and for increasing the potential and independence in functioning of older people has been explored by the Department of Health (2010a). While still supporting the view that people should be given as much independence as possible for as long as possible, this research also highlights the costs of a higher level of dependency in this group, particularly in the context of an ageing population. Falls are an area that is particularly highlighted in this report, with recommendations to focus on the causes of an individual fall in order to prevent further (and potentially more serious) falls occurring. ‘Joined-up’ care and building effective working relationship between different providers of health and social care is recommended, as in other reports.

Equality The Equality Act (2010) supercedes much of the previous legislation related to discrimination and presents a standard for all marginalised groups. Under the Act, discrimination law related to age, disability, gender reassignment, marriage or civil partnership, race, religion or belief, sex and sexual orientation is drawn together into one document. The Equality Act prohibits any discrimination, either direct or indirect, based on any or all of these characteristics, when providing services (among other areas). There are exceptions permitted in the Act in order to allow for, for example, differential sight test entitlements based on age.

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Issues and barriers The regulation of health provision for care home residents covers a broad remit of health, including sight. However, there are limitations on the performance of these regulations, evidenced by the numbers of people not receiving sight tests they are entitled to (FODO, 2010) and through informal reports of under-testing from consultation with stakeholders, including optometrists. There are a number of barriers to pursuing better eye health and sight testing for the different parties involved: the individuals themselves, families and carers, care home staff, care home managers, eye health practitioners and professionals from the wider health community. There are additional issues at the regulatory and guidance level.

Residents At an individual level, a lack of awareness of eye health and sight problems is a key issue. In an RNIB survey, 60% of a sample aged over 60 who had not had an eye test in the previous two years stated that the main reason was that they were not having any sight problems (RNIB, 2007). Given the incidence of sight problems at this age, it is likely that at least some of these people are experiencing sight problems, or are in need of a new prescription for their existing corrective aids, but are unaware of this. There is also a fatalistic assumption among many older people that sight will inevitably decline with age and that this process is irreversible. Therefore they are unlikely to recognise, accept or communicate that sight loss is a problem. A positive attitude to preventative health (as opposed to attributing change to a normal ageing process) has been shown to have a positive association with the uptake of eye checks (Iliffe et al, 2009). Older people may feel that a slight impediment in their sight is an insignificant health problem compared to other health problems they or their contemporaries are experiencing. Additionally, it has been reported that care home residents are reluctant to agree to intervention, particularly surgical procedures (Fletcher et al, 2009).Research has found that while many older people (aged over 60) understood the benefit of a sight test as a tool for early detection of eye disease (RNIB, 2007; McLaughlin and Edwards, 2010), this did not translate into seeking sight tests for themselves (RNIB, 2007). Considering the strong emphasis on patient-focused care and the promotion of independence for older people, combatting the perception of a lack of need or inevitable deterioration will rely heavily on increasing the patient’s awareness and interest in their own eye health. In addition to residents potentially being unaware of their sight problems, some may be aware of a change but unable to communicate it to others. As mentioned above, dementia is a key issue in this area. For some in the middle to later stages of the disease in particular, communication can be very difficult, either in alerting someone to issues that they are aware of with their sight or their general level of communication such that the external signs of sight problems which could be picked up by people around them, will go unnoticed. While there are best practice guidelines issued by representative bodies for testing sight in people with dementia and navigating these communication difficulties (College of Optometrists Ethics and Guidance, 2011), this relies on the sight issue being highlighted in order to book a sight test. Some samples of older people surveyed on eye health have stated that the cost or fear of the cost of the test and glasses is a barrier to seeking sight testing (RNIB, 2007; RNIB Cymru, 2011). The vast majority of people living in care homes (that is, all residents who are unable to leave the care 19

home owing to their health) are eligible for free tests, meaning that theoretically this is an even smaller issue for this group than for the general population. However, some concerns have been raised over the cost of glasses and other corrective aids, as there is only limited financial support available from the NHS. Even those who are eligible for financial support for acquiring glasses (those with low incomes) are not always aware of that fact (RNIB, 2007). However, analysis has found that economic status is not significantly associated with take-up of eye examinations (Iliffe et al, 2009). While patient-centred healthcare is a positive outcome of recent health regulation, there are limits to what can be achieved in the way of choice for care home residents in their sight tests. Their preferred eye professional may not conduct domiciliary testing, or they may have moved from the area covered by that particular provider. The guidelines on the GOS contracts issued by the representative bodies of the eye professions suggest that there has historically been some contention between eye health professionals and PCTs over practitioners refusing to conduct domiciliary sight testing based on distance to travel (Association of British Dispensing Opticians et al, 2008, p.3), particularly if another contractor able to perform domiciliary testing is situated closer. These practical boundaries impose limits on the choice of provider for residents in care homes. These limits may have a detrimental effect on the care home residents: being unable to use their previous eye professional, they lose interest in sight testing or are not comfortable with switching to a new practitioner. In this way a resident’s lack of empowerment about their own health choices could be a barrier to eye health.

Families and carers Families and carers of care home residents are potentially a useful group to highlight sight problems and advocate testing, not having the conflicting responsibilities or time restrictions of a care home worker. However, they are subject to many of the same issues that the residents themselves face, namely a lack of awareness and knowledge of eye health and the benefits of regular sight testing. They too may see sight loss as an inevitable part of the ageing process, be unaware of the role a sight test plays in early detection of eye disease and other conditions or, like the residents themselves, fear the cost of testing and glasses. Interviews with stakeholders suggest that many do not think of sight loss as a problem; given the other, potentially multiple, health issues the resident may be experiencing which have more pronounced symptoms, vision problems are not on their priority list. There is a perception that measures designed to improve the quality of life of dementia patients will not be effective, and therefore should not be attempted (Alzheimer’s Society, 2007). As a result, families may feel that glasses and other interventions are a waste of money. However, a resident without a support network may actually be subject to an increased risk of undetected sight loss without these potential advocates present to notice signs of impaired vision and raise the issue of sight testing on their behalf. Indeed, some materials encourage family or carers being present during sight tests for their additional knowledge of the patient’s history and health needs, particularly if a patient is suffering from advanced dementia (College of Optometrists, 2011).

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Care home staff Stakeholders suggested that some care home staff were concerned about raising the issue of potential sight loss in residents as the staff felt it detracted from the promotion of a culture of independence for residents. Eye health is, relatively speaking, an open healthcare market (Bosanquet, 2010), with patients given a variety of choice of eye health practitioners both for their sight tests and separately for their prescribed glasses and contact lenses. While this level of independence can be positive and promotes patient-centred care, it also means that there is greater pressure on the patient to pursue sight testing and vision correction, which as referenced above, is an unlikely course of action for many residents. Restrictions in the GOS contract protecting the patient’s right to choose who provides their sight testing or whether they receive testing at all add to this issue. As a result, fewer people are receiving sight testing than could benefit from it, particularly domiciliary testing (FODO, 2010). This becomes more complex still when responsibility for health is transferred as the person enters a care home. While the aim across regulation of care homes to maintain the independence of a person as they transition into residential care is laudable, it leaves the residents potentially uninformed about the much higher risks they face of sight loss. Much of what exists in the current regulations, best practice guidelines and material from the voluntary sector refers to care options and environmental improvements for previously detected poor sight or vision problems: suggesting that if a resident wears glasses when they enter the care home their needs will be taken into account. The professional guidelines issued by the Care Quality Commission on their essential standards mention vision only in the context of notifying the CQC of severe injuries (CQC, 2010). However, there is little that addresses the issue of undetected or worsening vision problems that are not an emergency for residents. Care home staff are potentially best placed to detect the signs and behaviours that point to vision problems, and to recommend sight testing for residents, as they will have the most contact with the residents and receive training as part of their role. However, as a workforce they are generally overstretched despite working extremely hard, with many responsibilities and tasks needing to be completed. As a result (although this will not be the case in all care homes), eye health and sight problems may not be on their list of priorities as they are not perceived to be a serious threat to the health of their residents. They may have little awareness of the problems associated with deteriorating sight, and the potential for treatment and adjustment for many eye conditions, or its role in other conditions on which they have received training, such as dementia. This is due to a number of factors: insufficient or infrequent education or training on sight loss and how to recognise it; a primary concern with other health problems of their residents; inability to communicate or understand communications effectively with residents in order to establish the possibility of sight loss (particularly those with mental health problems, see above); lack of interest in or importance given to sight loss prevention (for example, for advanced onset dementia patients where there may not be a perceived improvement to be made in their quality of life). Equally, a care home worker may be fully aware of the issues and signs of sight loss, but be restricted in the time available to highlight problems with a resident. Additionally, as mentioned above, there is a problem of confidence in raising the issue of potential sight loss in relation to providing a resident with independence and control over their own health. 21

There is also evidence of the lack of priority given to sight loss in care homes with some occurrences of a lack of awareness or interest in aiding vision for residents with sight problems that are already detected. In particular, incorrect use of glasses and other corrective aids, such as wearing the wrong glasses for an activity or mixing up glasses for different residents (Stakeholder interview). This issue is exacerbated by residents with dementia or mental health problems who, for example, inadvertently mix up their glasses with others (Stakeholder interview). This is not to say that the majority of care home workers are anything but deeply concerned with the health and social welfare of their residents, more that there is a lack of infrastructure and training to highlight that sight loss is a key issue for this group. Care home workers typically have a relatively high turnover rate (Skills for Care, 2010) compared to other sectors, and as a result may not be receiving training on sight loss if it is being provided occasionally. Additionally, the high turnover contributes to issues of skills gaps in care home workers (stakeholder interview). Other barriers for care home workers may be more difficult to ascertain. An example raised in a stakeholder interview was that some care homes will have social hierarchies for seating arrangements, for example, while watching television, as those who have been in the care home longest get better viewing positions or seats. As well as this meaning that care home workers are limited in their ability to make environmental adjustments for residents with known sight problems by other residents, it will also impede their ability to note behavioural traits (such as sitting in particular position while watching television) in residents with undetected sight problems.

Care home managers Care home managers frequently experience the same problems as other groups in terms of a lack of awareness and priority given to eye health and sight testing. While some of this is due to a lack of specific guidelines or regulations on continual sight testing, sight testing and eye health were both mentioned in the National Minimum Standards (2003). However, eye health is one item on a long list of health and personal wellbeing indicators that need to be maintained. While testing the new assessment system for care homes the CQC asked the trial participants to request any additional notes in areas where clarification of the guidelines was required. While additional signposting was requested for some areas, sight testing was not one of them (Stakeholder interview). While it is possible that these particular care homes had eye checking policies in place and did not feel that additional guidance was necessary, it is also possible that this is another example of eye health not being a priority for care home managers (and workers) and, considering the predicted rates of undetected sight loss, this seems a more likely scenario for a number of care homes. Even where systems are in place to ensure regular sight testing of residents, there may be a lack of monitoring or follow-up of previous sight testing, for example, due to eye health records being kept separately from the main record of the resident’s health. A lack of clear policy for procedures relating to sight testing, particularly keeping records of the frequency of testing or a resident’s health conditions that are related to or could point to sight loss (for example, existing diabetes or multiple falls) could be a large contributing factor to these problems (Stakeholder interview). In

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addition, prescriptions and other materials provided by eye health professionals may be inaccessible, and difficult to understand and interpret into required actions. The general time constraints, other more pressing priorities and lack of awareness are just as relevant for managers as for care home workers as key barriers to raising the profile of sight loss and increasing awareness of the need for both informal sight checking and formal sight testing. As they have less contact time with residents, it is also possible that managers are unaware of undetected sight loss in their care homes.

Eye health professionals As eye health professionals exist in a health marketplace, it is in their best interests to provide good service to their customers, and indeed this has been presented as one of the great benefits of our system of private eye professionals working in partnership with the NHS, and a driver of clinical quality (Bosanquet, 2010). Considering the under-testing that is occurring in some care homes, eye professionals have a vested interest in pursuing these potential customers, and thereby reducing the numbers of people living with undetected sight loss. However, there are barriers which prevent this, mostly established in order to protect patients. Eye health professionals wishing to conduct tests in residential care homes must first register as a domiciliary sight test provider (previously with PCTs, in future with the NHS Commissioning Board). The practicalities of this process and the need for specialist equipment, in addition to the additional time taken, mean that conducting domiciliary testing is only a possible venture for some. Having met these requirements, requests for domiciliary testing in residential care homes must come from the patient or from someone acting on their behalf (such as the primary carer) (GOS Contract Regulations, 2008). While eye health professionals can apply to a care home to be allowed to conduct sight tests with residents, the barriers for care home managers (as detailed above), may in their turn prevent uptake of offers such as this, meaning that offering a domiciliary service may not be worthwhile for the eye health professional. Additionally the stipulations regarding formal notice periods required for domiciliary testing act as another disincentive for eye health professionals to conduct domiciliary testing. Some eye health professionals have found difficulties in accessing information about a patient’s eligibility for financial assistance with glasses (Stakeholder meeting). Care homes can be reluctant to provide information about a resident’s pension credits due to concerns about confidentiality, or may not have a record available. This delays the provision of vouchers for glasses and can leave the resident at risk. An interviewed stakeholder referred to an example where the patient in question had experienced a fall in the period before receiving glasses because of this delay.

The wider health practitioner community Other health professionals will have contact with a resident, for example, a nurse in a nursing home, GP, occupational therapist, or hospital staff should a resident require hospital treatment. In the same way as all the involved parties, eye health appears to be low or non-existent on the priorities of other health practitioners. While the resident may see these individuals on a more frequent basis than their eye health professional, lack of knowledge and/or perception that eye health is unrelated to other health issues can act as another barrier to an early detection of a sight 23

problem for a patient. Eye health and the influence on sight is often not discussed by health practitioners in their various roles. Stakeholders report that existing sight problems are often not acknowledged or made clear in patient notes during treatment periods outside the care home. A lack of confidence in discussing or advising on an area away from their expertise may be a crucial stumbling block for this group.

Issues with regulation and legislation Historically there have been reported issues with care homes asking multiple eye health professionals to conduct sight testing at care homes in succession, which would all be claimed for from the NHS by the respective eye health professionals (Stakeholder interview). In an attempt to reduce over-testing in care homes (to prevent unnecessary multiple sight tests on one individual and multiple charges) led to the present domiciliary testing notification regulations (that the names of patients to be tested must be submitted in advance). However, this can lead to under-testing as a drop in the approaches of eye health practitioners offering to conduct testing (for fear that they will not be able to claim back the sight test costs or wishing to avoid the bureaucracy involved) may lower sight testing even further on care home managers’ priorities. Additionally, the need to specifically identify the patients being tested, while having merit as a protective measure, can mean that if a resident with a booked in sight test subsequently becomes unwell or is otherwise unable to have a sight test, an eye health professional will have an effectively wasted visit to the care home. As the guidelines for standards of care become more broad-brush and based on overall outcomes, issues which are low priority and are therefore not raised in exercises such as the request for additional guidance from the CQC, may be ignored. While generally improving standards and focussing on patient-centred care, it is important to remember that eye health and sight loss can often be a ‘silent’ problem with patients unaware of their need for better care. Equal access to services of all kinds should be provided to older people living in care homes under the Equality Act (2010). The lack of access and priority given to sight testing and subsequent lower standards of care could be considered indirect discrimination on grounds of both disability and age for this group. There are some elements of the service provision which are limited for older people living in residential care homes, for example, they will not be able to have a full choice of provider owing to not all eye health professionals conducting domiciliary testing. Another example is the three week period that residents in care homes must wait before they can receive an eye test owing to the restrictions of the GOS contract. While there are arguments in favour of these restrictions (specifically the prevention of over-testing), the differences in the care received by this group compared to people of the same age and with similar disabilities who are living at home raise questions in light of the stipulations laid down by the Equality Act.

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Potential solutions Residents Raising awareness of eye health, symptoms and signs of sight loss and legal entitlement to sight testing and procedures is crucial to engaging older people in their health. While research has shown that there is some understanding among older people of the need for sight testing in order to identify eye problems and disease, this awareness does not necessarily translate to an understanding of an individual’s own risk status or action to address these risks. Many people in the older age group do not pursue sight testing because they do not believe anything is wrong with their sight (RNIB, 2007). Awareness campaigns need to take into account both raising perceptions of slight or gradual changes and deterioration in sight as well as education about conditions which do not present obvious symptoms until later in development. The use of compelling case studies for materials or raising awareness was generally supported by the stakeholder meeting. The role of the sight test as an early detection method for these conditions should also be highlighted. The cost or perceived costs are a major barrier for older people seeking eye testing (RNIB Cymru, 2011), so the full details of free eye test entitlements and financial assistance available for buying glasses should be included in any awareness-raising materials. Residents should be informed that their right to a choice of provider is restricted to eye professionals that conduct domiciliary eye testing and efforts should be made to ensure that they are comfortable with the practitioner conducting their sight test. Steps should also be taken to ensure that residents who have communication difficulties are also made to feel comfortable with sight testing. Care homes have run successful sessions simulating sight testing prior to the visit by the eye professional, ensuring that residents and staff were prepared (Stakeholder meeting). As care pathways are increasingly focussing on the patient and their choices about the health and social care they receive, empowering this group to raise the issue of their own sight and to request sight tests will ensure that the patient-centred care environment is responsive to their concerns. This empowerment should include challenges to the fatalistic ideas held about health by some of this group, and the feeling that their eyesight is good ‘for my age’ and therefore should not be investigated further. The standard of excellent sight for as long as possible should be enforced and supported as essential for physical and mental health.

Families and carers Education of this group could help in responses to residents’ lack of awareness of sight problems and the low priority given to them. Families and carers should be informed about signs and symptoms of sight loss so that they can join care workers in detecting potential sight problems informally and ensuring a referral for a full sight test. For families and carers of residents with dementia, or any debilitating health condition, a serious challenge must be raised to the perception that there is no point in attempting to improve quality of life or other health problems once a resident is in the later stages of such conditions. Any awareness campaign should include materials designed for families and carers. Family or carers need to be encouraged and supported to inform care home workers of communication from residents with dementia related to vision and eye health in order to ensure that it is acted on. 25

If possible, increasing the numbers of residents who have a family member or carer present during their sight testing would be highly beneficial in improving communication about their current vision as well as history of eye and other health issues.

Care home staff Formalised training on eye health and sight loss and ongoing awareness campaigns to ensure that eye health is seen as a priority should be standardised for care home workers to avoid the deviations in the quality of care across the country. This training should include: •

different eye problems and diseases affecting older people; their symptoms and recognisable signs; and the importance of testing to diagnose those without obvious early symptoms (for example, glaucoma)

•

review residents’ entitlements to sight tests and financial aid for glasses

•

the importance of sight in relation to other health problems, (for example, falls) and its role in prevention

•

the importance of sight in promoting independence and improving quality of life, particularly in reducing staff hours spent on assisting with personal care.

Raising awareness of these issues should go hand in hand with improving current practices in the care home, for example, ensuring that each resident is wearing the correct glasses for an activity and that they are regularly cleaned and clearly labelled. There were suggestions from stakeholders for the use of eye health champions in care homes, with one staff member given responsibility for keeping other staff motivated, increasing awareness and receiving specialised training (Stakeholder interview). Having one person at a care home trained on sight loss issues would reduce the amount of external training required. However, there were concerns raised about sight loss only being a priority for one person in the care home, that there are already existing champions for dementia and dignity in care homes and this could cause confusion in their roles, and that a single point of contact could be lost should the champion leave their position. Incorporating good sight promotion into the role of a dignity champion could be one way to avoid this confusion. Support needs to be provided within the infrastructure of care homes to ensure that care home workers have time to address issues related to the eye health of residents alongside their existing busy schedules. Eye health should be included in outcome assessments for residents’ care to ensure that it is taken into account (Stakeholder meeting). The CQC’s special review of health care in care homes found that 96% of the care homes studied, changes in healthcare needs of residents were identified through informal or responsive monitoring (as opposed to formal checks, etc) (CQC, 2012). Additionally 94% of care homes studied also identified changes through formal monitoring including from regular staff meetings and diagnostic monitoring. Given the high rate of identification of healthcare needs through informal monitoring (as opposed to formal checks) the inclusion of eye health indicators in outcome checklists for care home staff should be run alongside awareness-raising projects.

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Methods of targeting awareness campaigns at care home staff were discussed at the stakeholder meeting. It was suggested that alongside formalised training such as the sessions delivered by domiciliary optometrists, there should be use of more informal methods to further the campaign messages, such as posters in staff rooms to act as a prompting device to ensure that a level of awareness is maintained (for example, the My Home Life bulletin and poster for care homes (My Home Life, 2011)).

Care home managers and providers As with other groups, increased awareness and prioritisation of this issue are key. However, given the already restrictive time constraints for care home managers (and workers), increasing the profile of eye health and sight loss should be achieved through targeting the standards that care home managers already follow. This will also ensure that care home workers will follow good practices. Examples of inclusion of eye health into current operating procedures could include eye care details included in residents’ care plans which should also include full documentation of falls. Notes on sight loss should be included in communications with other health practitioners treating the resident, such as during hospital referrals. Care home managers should gather information on pension credits at the initial assessment and be prepared to share information on patient funding with eye health professionals in order to prevent a delay in providing vouchers toward the costs of glasses and their subsequent delivery. Care home managers should implement a policy for the care home on eye health, standardising procedures and providing support for workers to raise sight loss as a potential issue. At a higher level, care home providers should be encouraged to include within their key performance indicators (KPIs) levels of sight loss and eye testing and checking in their homes. This will provide incentives for care homes to place more priority on eye health and justify time spent on this issue by all staff.

Eye health professionals Eye health professionals visiting care homes should have a lay version of the prescription available for staff, with clear instructions about the action required. They should engrave or label glasses provided to prevent confusion of glasses ownership and use in the care home.

The wider health practitioner community Health professionals who do not directly deal with eye health should be aware how it relates to their area. GPs should include sight in their initial assessments of care home residents. Patients with dementia, who have had falls or who are diabetic, should be referred for a sight test as a standard procedure if they have not had a test in the recommended time period, or are showing signs of sight loss. Eye health should be treated as a central element of the whole of a person’s health, rather than an optional addition to their care plan.

Regulation and legislation Existing frameworks for regulation of care have the potential to support the monitoring of eye health among care home residents. Given that eye health is already included in health standards for care homes, it is not necessary to change legislation. However the profile of sight loss needs to 27

be raised by CQC, which should correspondingly promote the importance of eye health in their inspections and clearly include it as part of their assessment criteria. The use of supplementary guidelines, as have previously been published by the Wales Council for the Blind and The Care Standards Inspectorate for Wales (2003), to provide more exacting details clarifying the standards of care expected is an example of how this can be achieved without legislative change. Supplementary guidance on eye health has not been requested by the care homes involved in the consultation on the CQC’s special review of health care in care homes. However, the CQC should arguably re-evaluate the production of supplementary notes based solely on the requests of care homes, as there may be issues that are being overlooked by staff that need more attention. Given the ‘silent’ nature of undetected sight loss the CQC should be proactive not reactionary in producing this guidance. In light of the Equality Act, the effect of these restrictions on residents’ equal access to eye health services should be taken into account. A relaxation in the notification period stipulated by the GOS contract for domiciliary sight testing might be beneficial in removing the barriers eye professionals face in delivering timely sight tests to patients. Stakeholders have reported that PCTs were rarely using the three week notice period to check that only patients eligible for tests were receiving them (the intended purpose of the notice period). The system used in Scotland does not require prior details of which individual patients are being tested, so a visiting eye professional could conduct an additional unplanned sight test on a resident if required (Stakeholder interview). It was suggested that NHS numbers could be used in a joined-up method to ensure that over-testing does not occur should these regulations be relaxed (Stakeholder meeting). However, more information is required into both the long-term effects of the Scottish system and its applicability in England before such a relaxation of the terms of the contract in England is carried out. As there is a particular overlap between visual problems and dementia, care pathways for dementia should integrate good eye health promotion. The quality standard for dementia from the National Institute for Health and Clinical Excellent (NICE) includes sensory impairment as an individual need to be taken into account when developing personalised care plans (NICE website). Further investigation is required into how people with dementia are potentially being denied access to good eye health, contrary to the key priorities laid down for implementation with regard to nondiscrimination of people with dementia, as stipulated in the guidelines.

National awareness campaign A national campaign should be launched to particularly target the lack of awareness of eye health problems and the need for sight testing in older people. This should be targeted at both people living in a care home and those living at home, and should be inclusive of younger people. In this way, families will also be educated on these issues, and awareness levels in older groups will be higher in future years as those who have understood the campaign move into older age. The potential cost effectiveness of a scheme aiming to encourage older people (aged ≥60 years) to take up regular eye examinations has been calculated at £24,200 per Disability Adjusted Life Year (Access Economics, 2009).

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Recommendations In order to discuss and develop the potential solutions and recommendations from the evidence, an expert stakeholder meeting was held on Thursday 23rd June 2011 and follow –up interviews with stakeholders were conducted in May 2012. The recommendations below were influenced by the discussion from the meeting and interviews, but are not representative of the views of contributors. 1. Create a national awareness campaign on the issue of sight loss in older people with different cross-sections of stakeholders. Awareness of this issue should be increased through education and guidance related to personal experiences for residents and their families, as well as other health professionals such as GPs, nurses and occupational therapists working with the residents 2. The Care Quality Commission should incorporate eye health indicators into their assessment criteria for care homes and across the general health system. Priority given to eye health by care inspectors will support additional time spent on this issue by care staff as well as ensuring high quality standards. 3. Care home providers should be encouraged to add eye health and sight loss testing to their key performance indicators. 4. Further research should be conducted to explore the impact of the General Ophthalmic Services contract restrictions on domiciliary sight testing, specifically the need to prenotify appointments with individual patients and to examine the case for the contract to be altered. Relaxation of restrictions on eye health professionals could enable ease in referring residents for sight tests. 5. More qualitative research is required within care homes to ensure barriers to good eye health practices for care home workers, managers and providers are understood. Once barriers to good practice are identified, appropriate intervention and tailoring of existing resources should be pursued. Training sessions for care home staff are considered to have been very effective in improving awareness of eye health, but the coverage of these is patchy and generally provided by the private or voluntary sector. More could be done through further education of the staff and managers of the homes but understanding the barriers to accessing this information is crucial to its development.

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Annex – Expert stakeholders who contributed to this report The authors are extremely grateful for the invaluable input of the following stakeholders. Opinions expressed in this review are the authors’ and are not representative of these contributors. In interview: Phil Ambler, UK Vision Strategy Sharon Blackburn, National Care Forum Susan Blakeney, College of Optometrists Giles Butler, Domiciliary Eyecare Committee Craig Colahan, RNIB Ellen Coleman, Care Quality Commission Karen Culshaw, Care Quality Commission Anita Lightstone, RNIB Debbie Lynch, RNIB Frances Miller, RNIB Yvonne Needham, Ophthalmic Nursing Forum and University of Hull Amanda Reeves, Macular Disease Society Dawn Roberts, HealthCall Optical Services Rebecca Sheehy, RNIB Deborah Sturdy, Independent nurse consultant At the expert stakeholder meeting, to discuss recommendations arising: Michael Bowen, College of Optometrists Sarah Buchanan, Thomas Pocklington Trust Penny D’Ath, City University Rekha Elaswarapu, ILC-UK Fellow and formerly CQC Vishal Khurana, Vision Call Stephen Kill, Seeability Graham Mulley, Geriatrician and formerly British Geriatrics Society Anna McGee, Sense Yvonne Needham, Ophthalmic Nursing Forum and University of Hull Valerie Spencer, HealthCall Optical Services Karin Tancock, College of Occupational Therapists David Thomson, City University

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