The cost of sight loss in the UK: Campaign report 23
“Prevention, raising awareness, early detection and treatment could both reduce spending and save sight”
Contents
Executive summary
Introduction
Methodology
Eye health costs
Independent living costs
Social services
Disability benefits
Transport and mobility
Education and training
Employment services
Costs to the voluntary sector
Informal care
Costs to the private sector
The cost of unemployment
Conclusion
References
Acknowledgements
I would like to thank all those who have contributed to this report, from initial advice on the research through to comments on the final draft. I would in particular like to thank Professor Sir Tony Atkinson and Professor Alastair Gray for their interest and guidance whilst working on this project at Nuffield College. My thanks also to Fazilet Hadi and Sophie Summerfield at RNIB for their input.
This research has been supported by RNIB, Nuffield College, Oxford and an unrestricted educational grant from Novartis Ophthalmics.
Steve Winyard,
RNIB Public Policy Department
Executive summary
This report provides the first prevalence based estimates of the economic and social costs of vision loss for the United Kingdom. It is based upon detailed expenditure data for 2001/2, assembled from central government, local government, voluntary sector and private sector sources. It indicates that the total cost of sight loss is in the region of £4.9billion a year.
The report contains a powerful message and a warning. Although sight is the sense we most fear losing, as a society we spend relatively little to prevent, detect and treat eye disease – in total around £1.2billion. This represents just 1.6 per cent of the total NHS budget. Typically eye health services are overloaded and under-resourced:
▪Extensive waiting lists and waiting times for the treatment and management of cataracts, glaucoma, diabetic retinopathy and age related macular degeneration. Whilst the Government has committed additional funding to reduce waiting lists for cataract surgery in England, serious problems remain.
▪Low vision services are of extremely variable quality across the UK, good in some areas and virtually non-existent in others. The recent report of the National Eye Care Steering Group (1) suggests an additional £40million is needed to provide a satisfactory service in England, suggesting a figure closer to £45million for the whole of the UK.
▪Government spends next to nothing on ensuring that key eye health messages are conveyed to the public. For example, only a minority of people are aware that an eye test provides a vital check on the health of the eye; that it can identify disease well before a person’s sight is affected. Also, few are aware of the proven links between smoking and sight loss.
Government also spends relatively little to support independent living by those with sight loss – in total around £1.1billion. Key services such as rehabilitation, social support, community equipment, disability benefits, and accessible transport are generally under-funded and under-developed.
▪Less than half (45 per cent) of blind and partially sighted people assessed by local authority social services departments end up receiving a service.
▪Our social security system fails to recognise the costs of sight loss to the individual. Not only should the higher rate mobility component of Disability Living Allowance be made available to registered blind people, but also there should be assistance with mobility costs for the over 60s. Currently this is not the case.
▪Only a small minority of local authorities run taxi-card schemes that provide the door to door transport that people with sight loss need.
In the absence of adequate statutory services for blind and partially sighted people, it is left to family and friends to provide the support necessary for independent living. This informal support costs some £1.5billion and covers a wide range of activities including help in the home, reading mail, shopping, gardening and the provision of door to door transport. Overall this is ten times greater than the expenditure by local and central government on social care.
A final £1billion is the cost of productivity loss in the economy due to the much higher unemployment rate experienced by blind and partially sighted people. Currently three out of four are not in paid employment, a figure that has not changed significantly over the past decade. This represents a major loss to society in terms of the output foregone. It also explains the poverty and social exclusion experienced by many blind and partially sighted people of working age.
This figure of £4.9billion is a conservative one.
▪The cost of informal care provided by family and friends has been calculated on the basis of some very restrictive assumptions.
▪The total does not include expenditure on a range of private sector services by blind and partially sighted people.
▪It does not include a figure for the adverse effects of sight loss on a person’s quality of life. As the recent study from the Sainsbury Centre for Mental Health suggests, these items could more than double the total cost to the nation of sight loss (2).
In the UK, successive Governments have failed to recognise blindness as a severe disability. As a result in far too many areas we have unsatisfactory and under-funded services. Additional expenditure is urgently needed on low vision services, community care and equipment, disability benefits, transport and employment support. Properly funded and timely services in these areas would make an important contribution to improving the quality of life of blind and partially sighted people.
If central and local Government did provide quality services across the whole of the UK, public expenditure would inevitably rise. However targeted expenditure on four areas could help to reduce the overall cost to society of sight loss and save sight:
▪Prevention There is an urgent need to get over key eye health messages to the public. Awareness campaigns should be funded by the Department of Health to highlight, for example, the proven link between smoking and sight loss. Eye health should also be a central feature of “healthy eating” campaign messages.
▪Raising awareness of eye disease. Public understanding of eye diseases is generally low. For example only one in seven of the UK population have heard of age related macular degeneration – AMD – the leading cause of blindness in the over 50s. It is vital that people understand that eye disease can be asymptomatic in its early stages; that real damage can be done before a person’s sight is affected.
▪Early detection A survey carried out by the AMD Alliance in 2003 found that nearly one-third of the UK population have not had their eyes tested in the past two years (3). As a result they are putting their sight at risk with diseases such as glaucoma and AMD remaining undetected. Much more needs to be done to ensure people get their eyes checked regularly.
▪Treatment As new sight saving treatments are developed such as photodynamic therapy for wet AMD, it is vital that they are rapidly made available on the NHS. The cost of treatment is relatively small compared to the cost of someone losing their sight. The annual cost for someone of working age can be as much as £30,000. For someone over retirement age the cost is lower but still approaching £10,000 a year.
And finally the warning. Demographic change and improvements in health care are leading to an increasingly elderly population and longer life expectation. It is estimated that the population in the over 60 age group will increase by 24 per cent by 2020. The increase in the over 80 age group is sharper still. Given that sight problems are experienced predominantly by older people, this will mean a dramatic increase in demand for services to prevent and treat eye disease. With the incidence of visual impairment projected to rise by around 35 per cent by 2020 (1), there will also be a big increase in the demand for services to support independent living. The planned expansion of services must start now with the provision of significant additional funding running to at least £420million a year.
In the case of primary and secondary eye care, the modernisation of services, including the specification of new pathways, will help. But alone this will not deliver the improvements that are so urgently needed. There is a major funding gap that must be addressed by Government in England, Wales, Scotland and Northern Ireland.
Introduction
What are “the costs of blindness”? This question has become of increasing importance in recent years to organisations representing blind and partially sighted people. As we have campaigned for improved access to a range of services and benefits, it has become clear that we need to measure accurately the costs to the individual and to society of sight loss.
To date, work in this area has focused largely on the costs faced by the individual. That is, research has been concerned with the identification and quantification of the extra costs faced by disabled people (4,5). With regard to sight loss, RNIB and the University of York used focus groups to identify and explore the main areas of additional expenditure faced by visually impaired people at the different stages of their life. This was published as “The Costs of Blindness” (6) and further work to quantify these costs has undertaken by the Disability Benefits Consortium and the University of Loughborough. This is due to be published in September 2004.
Research focusing on individual costs is important in that it allows us to assess the adequacy of additional cost benefits such as Disability Living Allowance (DLA) and Attendance Allowance (AA). By identifying the breadth and depth of impact of sight loss on the individual and their family, we also provide confirmation of blindness as a severe disability.
Of increasing importance is research into the costs faced by Government and the wider society when someone loses their sight. As we have campaigned for improved screening, including access to a high quality NHS eye examination, issues of cost versus benefit come to the fore (7). Similarly as new and effective treatments/technologies become available that stop people losing their sight, we need to be able to compare the cost of treatment with the cost of blindness or partial sight. Specifically we need to know how much is being spent on benefits, services and tax allowances for people with sight problems by central and local government as well as the wider costs of informal care and lost productivity.
Methodology
Cost of illness studies measure the overall impact of a disease on society and typically they cover direct health and social care costs, the impact on employment and the provision of informal care by family and friends. A few studies have attempted to go further and estimate a monetary value for reductions in the quality of life caused by the disease using quality adjusted life years (QALYs) and disability adjusted life years (DALYs) (2).
The main focus of this study is people in the UK who are blind or partially sighted. There is a range of estimates. At a minimum there are around 370,000 people registered as either blind or partially sighted with their local authority. However it is generally accepted that this does not properly measure the number of people with very poor sight. First there is likely to be some degree of under-registration with people choosing not to enter “the system”. Second there are many people who have poor sight (i.e. below registration levels) but are treatable and therefore not eligible to register. RNIB, for example, estimates that there are 1.1million people in the UK whose sight is below registration levels. In addition this study is concerned with the costs of prevention, detection and treatment of eye disease. Here the focus is on International Classification of Diseases (ICD) categories 360-379.
The basic approach in cost of illness studies is fairly well established and estimates for a wide range of diseases have been published in recent years (8). In the case of blindness and visual impairment there have been both global studies (9) and country specific studies for Australia (10), Germany (11), and the USA (12). In addition there have been a number of studies that focus on specific issues related to visual impairment such as falls (13) and the associated costs. Finally there are studies that look at the costs related to specific eye diseases such as age related macular degeneration (AMD) (14).
This evaluation is prevalence based and estimates the annual cost of visual impairment for the UK in 2001/2. To achieve this, a wide range of data is brought together on prevention, detection, treatment and social support. Wherever possible we have used actual expenditure data from central and local government and the voluntary sector. However, where this is unavailable, we provide estimates based on relevant populations and unit costs. Employment related costs are quantified in terms of production losses.
A number of the estimates of the cost of visual impairment in the UK are based on data that is subject to uncertainty. To address this, a “sensitivity” analysis has been undertaken in which key aspects of the estimate in question are varied over a plausible range to assess the consequent change in the overall results.
Eye health costs
Health care is by far the largest area of Government expenditure on sight loss. A wide range of treatments and services are provided through the primary and secondary care systems to prevent, detect and treat eye disease.
As regards the detection and prevention of eye disease the General Ophthalmic Services provide free NHS eye tests and optical vouchers to help pay for glasses or contact lenses for eligible groups in the population. In the case of sight tests this includes people over the age of 60, children and students, adults receiving a range of low income benefits and people registered as blind or partially sighted or at risk of significant sight loss (15). The main eligible groups for optical vouchers are children under 16, students in full time education aged 16-18 and adults receiving Income Support, Family Credit or other low income benefits.
Table 1 Expenditure on general ophthalmic services: 2001/2
£ millionEngland / 302.1
Scotland / 31.9
Wales / 21.9
Northern Ireland / 10.3
Total / 366.2
When a sight problem is detected during an NHS or private eye test, a referral will be made to either the patient’s General Practitioner or to the hospital eye service. In the case of hospital treatment, detailed cost and volume data for England is provided in the Department of Health National Schedule of Reference Costs. For ophthalmology this gives details for 12 categories of inpatient and day care cases and eight categories of outpatient services. A breakdown is also provided between NHS Trusts and Primary Care Trusts. For Scotland, Wales and Northern Ireland similar data is collected although utilising different categories. Table 2 sets out total expenditure on ophthalmology treatments across the UK making use of the published average cost and volume data.
Table 2 Expenditure on ophthalmology treatments: 2001/2
£ millionEngland
Inpatients / 104.2
Day cases / 199.2
Outpatients / 263.7
Scotland / 47.8
Wales / 33.4
Northern Ireland / 19.4
Total / 667.7
This expenditure total covers treatment of patients with, for example, cataracts, glaucoma and AMD. What it does not include is NHS expenditure to meet other health needs related to sight problems. The most obvious example of this is falls caused by sight loss. As Scuffham et al have shown (13), this is a major problem in the UK.
In 1999 there were 189,000 falls involving people with a sight problem, of which 89,500 could be attributed to the sight problem. The estimated cost of these falls (primarily A&E attendances and inpatient admissions) were between £269million (range £193million-£360million) and £128million (range £32million-£240million).
GPs also play a significant role in the delivery of eye care in the UK, treating a range of minor sight problems and referring more serious cases on to Consultant Ophthalmologists. The most common reason for people to visit their GP is for disorders of the conjunctivia (ISD 372). For older people, glaucoma (ISD 365) and cataracts (ISD 366) are the next most important eye diseases that lead to a GP consultation. The fourth national study on Morbidity Statistics from General Practice (16) indicates the total number of consultations with a doctor for eye problems (ICD360-379) to be in the region of 490,000 per year. In 2001/2 the average cost of a consultation with a doctor in the surgery was £20 indicating a total cost of £98million.
Another area of significant expenditure is on drugs to treat eye disease. Here the data is available from prescription costs analysis and the British National Formulary. This indicates a total cost of some £92million in 2001/2. As new sight saving treatments that are in development become available we would expect this total to increase significantly.