part of its Action today, health tomorrow’ campaign, Diabetes UK is urging local done, people with diabetes are at serious risk of going blind unnecessarily. …
Diabetes and Blindness:
A focus on action
A report from Diabetes UK The charity for people with diabetes June 2005
Diabetes UK, 10 Parkway, London, NW1 7AA wwwdiabetesorguk, Telephone 020 7424 1000 Registered charity number: 215199
Diabetes and Blindness: A focus on action
Contents Executive Summary What is retinopathy? Who gets it? How should retinopathy be detected? Once detected, how is retinopathy treated? Page no 3 5 5 6 6
Are local health services on track to 7 meet retinopathy targets? Putting the focus on action What is diabetes? About Diabetes UK Action today, health tomorrow References 9 11 12 12 14
2
Executive Summary
Diabetes is the leading cause of blindness in people of working age in the UK1 This is due to a condition called retinopathy Research shows that if retinopathy is treated early and adequately blindness can be prevented in 90 per cent of those at risk2 As part of its Action today, health tomorrow campaign, Diabetes UK is urging local health services to take action and prioritise screening for retinopathy If nothing is done, people with diabetes are at serious risk of going blind unnecessarily How common is the problem? Approximately 720,000 people
with diabetes in the UK have some form of retinopathy o Approximately 450,000 25 people with diabetes have mild to moderate retinopathy o Approximately 180,000 10 of people with diabetes have sight threatening retinopathy o Approximately 90,000 5 people with diabetes are blind or visually impaired as a result of retinopathy Blindness is more prevalent in people with Type 1 diabetes Twenty years after diagnosis nearly all people with Type 1 diabetes will have some form of retinopathy 20 years after diagnosis 60 per cent of people with Type 2 diabetes will have some degree of retinopathy What is being done? The National Service Framework NSF for diabetes has prioritised screening of retinopathy in England as one of only two critical national targets By 2006 a minimum of 80 per cent of people with diabetes are to be offered screening for the early detection and treatment of diabetic retinopathy, rising to 100 per cent by the end of 2007 Local health services do not appear to be on track to meet these targets None of the surveys show local health services to be close to the targets for next year and figures on both screening and the use of digital cameras are worrying There are also
wide
3
regional variations in the services provided, resulting in a postcode lottery on eye care A survey undertaken by Diabetes UK in 2005 indicates that 41 per cent of people with diabetes are either not offered retinopathy screening or are not screened using a digital camera3 NHS figures from 2004/2005 indicate that just 61 per cent of people with diabetes in England are receiving screening for retinopathy4 A Diabetes UK/Dr Foster survey of diabetes services in 2004 found that just 56 per cent of people with diabetes were screened for retinopathy within the last year in England5 Without a clear idea of the current situation, it is impossible to ensure that people with diabetes are getting the care they deserve People with diabetes could be going blind as a result What must be done? There are only seven months to get from the current situation to a nationwide achievement of the target As part of its Action today, health tomorrow campaign Diabetes UK is pushing for local health services to take action now Specifically we want: All Primary Care Trusts PCTs to meet the NSF targets within the specified timescale, putting retinopathy screening programmes in place and ensuring all
people with diabetes are offered annual screening with a digital camera The Department of Health to ensure that the targets are being met by PCTs Accurate data to be made available showing the present situation How many people are currently being offered screening with a digital camera? Are the 2006 targets going to be met? All people with diabetes need to have their eyes checked at least once a year, the test should use a digital camera and meet the nationally recommended standards set by the National Screening Committee Without these standards in place, more people with diabetes will undoubtedly go blind This must be prevented
4
What is retinopathy?
Diabetic retinopathy is a complication of diabetes that affects the retina The retina is the layer at the back of the eye, which is sensitive to light To be able to see, light must be able to pass to the retina It passes through the cornea a clear covering in front of the eye, lens and vitreous a clear, jelly-like substance that gives support to the back of the eye The focused light or images are then carried to the brain by the optic nerve Diabetes causes the capillaries — tiny blood vessels — in the retina to become blocked
This may then lead to leakage in the central retina or result in the growth of new vessels, which may bleed and fill the eye with blood a phenomenon called vitreous haemorrhage Retinopathy is usually classified according to severity, which may differ in both eyes The longer a person has diabetes the greater the likelihood of developing diabetic retinopathy
Who gets it?
Everyone with diabetes is at risk of retinopathy If you have had Type 1 diabetes for less than five years, you are unlikely to have retinopathy However, the longer people have Type 1 diabetes, the more common retinopathy becomes Nearly one in five people with Type 2 diabetes have a significant degree of retinopathy when they are diagnosed This is because their diabetes may have been present for months or even years before diagnosis and blood glucose levels may have been higher than normal for some time Approximately 720,000 people with diabetes in the UK have some form of retinopathy Twenty years after diagnosis nearly all people with Type 1 diabetes will have some form of retinopathy 20 years after diagnosis 60 per cent of people with Type 2 diabetes will have some degree of retinopathy
5
How should
retinopathy be detected?
The National Service Framework for diabetes in England states that all PCTs should be providing a high quality systematic retinal screening programme to identify retinopathy as early as possible All people with diabetes should have an eye examination annually, information about the screening service and retinopathy should be provided to people with diabetes and quality assurance systems should be established and standards met The UK National Screening Committee and the National Institute of Clinical Excellence both recommend the use of digital cameras Digital cameras are accurate and produce a hard copy of the scan which allows the image to be re-examined for quality assurance purposes The Department of Health have allocated 27 million to Strategic Health Authorities SHAs specifically for the purchase of digital cameras and related software
Once detected, how is retinopathy treated?
Retinopathy is treated using Laser treatment To get the most benefit from laser treatment, it is vital that retinal changes are picked up early, which is why the annual retinopathy examination is so important Laser treatment has revolutionised the treatment of retinopathy, and
together with effective screening, good blood glucose control and good blood pressure, it can successfully maintain vision During laser treatment for retinopathy, local anaesthetic eye drops are given Then, through a contact lens, the laser beam is directed onto the abnormal parts of the retina Small bursts of tiny beams of laser light are then used to seal leaky blood vessels and prevent them from becoming worse Laser treatment also destroys abnormal new blood vessels in the retina Laser treatment is carried out by an eye specialist and nearly always as an outpatient treatment A session of treatment can vary in length from person to person Laser treatment is usually very successful but it can only stop further damage to the retina Unfortunately, it cannot restore vision which has already been lost
6
Are local health services on track to meet retinopathy targets?
Evidence shows that a significant lack of knowledge exists amongst people with diabetes about retinopathy A recent survey for Diabetes UK by MORI indicates that around one in five people with diabetes dont even realise it can lead to retinopathy6 There is also a poor understanding of why screening is important7 In
addition, it has been highlighted that people with diabetes who have sight-threatening retinopathy are currently experiencing a lottery when it comes to eye surgery8 When it launched, the National Service Framework for England stated that there were wide variations in the policies, practice and quality of screening provided by different primary care trusts Research backs this statement up Figures from the Diabetes UK non-members survey9 indicate that many people with diabetes are still not receiving a regular eye test and many of those that are, are not being checked with a digital camera These results are from the latest study, but even if taken as the best case scenario, the situation is still not good enough and people with diabetes are still at risk By English region, people who have not been offered eye screening or were not examined with a digital camera
Location England Eastern West Midlands South East North West Yorkshire Humber East Midlands London South West North East Percentage 41 54 54 51 44 43 40 36 36 16
7
Your local care a survey of primary care organisations undertaken in 2004 showed that local health services were a long way from the 2006 target outlined in the
NSF Just 56 per cent of PCTs were providing a systematic retinal screening programme that met National Screening Committee standards until April 2006 the standards allow the use of Slit Lamp cameras Digital cameras were only used in 50 per cent of cases Figures currently used by the Department of Health also indicate that only 61 per cent of people with diabetes are receiving screening: Q4 2004/05 - People with diabetes receiving screening for diabetic retinopathy
Strategic Health Authority ENGLAND Norfolk Suffolk Cambridgeshire Bedfordshire Hertfordshire Essex North West London North Central London North East London South East London South West London Northumberland Tyne Wear County Durham Tees Valley North East Yorkshire Northern Lincolnshire West Yorkshire Cumbria Lancashire Greater Manchester Cheshire Merseyside Thames Valley Hampshire the Isle of Wight Kent and Medway Surrey Sussex Avon Gloucestershire Wiltshire South West Peninsula Somerset Dorset South Yorkshire Trent Leicestershire Northamptonshire Rutland Shropshire Staffordshire Birmingham the Black Country West Midlands South
receiving screening
613 762 699 725 667 460 406 412 513 751 665 777 671 565
568 706 617 507 635 398 744 548 814 463 617 660 656 564 612
8
Local retinopathy screening programmes must take account of the views and experiences of people with diabetes, particularly with regard to issues of accessibility and transport, while at the same time meeting nationally agreed standards At present the National Screening Committee can only advise local services on quality assurance Diabetes UK is calling on central funding to be provided to ensure independent quality assurance of these programmes at the regional level Funding has already been set aside to enable PCTs to meet the NSF target on retinal screening A total of 27m has been allocated specifically for the purchase of digital cameras and related software The money has been available over 3 years 5m in 2003/4; 96m in 2004/05 and 124m to 2005/06 It is essential that the Department of Health knows exactly where this money has gone It is essential that we have a clear picture of the current situation if we are to tackle problem areas and ensure all people with diabetes are receiving the care they need Diabetes UK would urge the Government to do a comprehensive and reliable audit of retinopathy screening services
across the UK, to identify where the money is being spent and whether PCTs are on course to achieve the targets set out in the NSF
Putting the focus on action
As already highlighted, blindness can be prevented in the vast majority of those at risk if action is taken and cases are diagnosed at an early stage The Diabetes UK Action today, health tomorrow campaign is pushing for local health services to prioritise retinal screening for people with diabetes We want: All Primary Care Trusts PCTs to meet the NSF targets within the specified timescale, putting retinopathy screening programmes in place and ensuring all people with diabetes are offered annual screening with a digital camera The Department of Health to ensure that the targets are being met by PCTs Accurate data to be made available showing the present situation How many people are currently being offered screening with a digital camera? Are the 2006 targets going to be met?
9
Many questions remain unanswered As well as establishing how many people are currently being screened, we need to establish if there are systematic programmes in place to ensure call and recall for those at risk What problems are being
encountered with the screening programmes? Are services having trouble accessing the funding? When individuals are diagnosed with diabetes, often the complication they fear the most is blindness People with diabetes deserve quality care Everything possible must be done to protect the sight of those at risk
10
What is diabetes?
Diabetes mellitus is a common condition in which the amount of glucose sugar in the blood is too high because the body cannot use it properly Glucose comes from the digestion of starchy foods such as bread, rice, potatoes, chapattis, yams and plantain, from sugar and other sweet foods, and from the liver, which makes glucose Insulin is vital for life It is a hormone produced by the pancreas that helps the glucose to enter the cells where it is used as fuel by the body The main symptoms of diabetes are increased thirst, going to the loo all the time especially at night, extreme tiredness, weight loss, genital itching and/or regular episodes of thrush, and blurred vision Type 1 diabetes develops if the body is unable to produce any insulin This type of diabetes usually appears before the age of 40 and especially in childhood, however, it can develop at any
age It is treated by insulin injections and diet, and regular physical activity is recommended Type 2 diabetes develops when the body can still make some insulin, but not enough for the bodys needs, or when the insulin that is produced does not work properly known as insulin resistance This type of diabetes usually appears in people over the age of 40 and the older you are, the greater your risk of Type 2 diabetes If you come from a black or minority ethnic group, you are at increased risk over the age of 25 Type 2 diabetes is treated by diet and physical activity, or by diet, physical activity and tablets, or by diet, physical activity and insulin injections The main aim of treatment of both types of diabetes is to achieve near normal blood glucose and blood pressure levels This, together with a healthy lifestyle, will help to improve wellbeing and protect against long-term damage to the eyes, kidneys, nerves, heart and major arteries
11
About Diabetes UK
Diabetes UK is the charity for people with diabetes We stand up for the interests of people with diabetes by campaigning for better standards of care We also fund research to improve the treatment of diabetes and to find a
cure, and we provide practical information and support services to help people manage their diabetes better We have approximately 170,000 members and a network of offices across the UK We are one of the largest patient organisations in Europe Diabetes UK works for people with diabetes, their carers, family and friends We represent the interests of people with diabetes by lobbying the government for better standards of care and the best quality of life Diabetes UK spends over 45 million on research every year to improve the treatment of diabetes and we hope our research will ultimately lead to finding a cure for diabetes Diabetes UKs mission is to improve the lives of people with diabetes and to work towards a future without diabetes Specifically we want to: set people free from the restrictions of diabetes ensure the highest quality care and information for all end discrimination and ignorance ensure universal understanding of diabetes and Diabetes UK achieve a world without diabetes
Action today, health tomorrow
Diabetes is a serious and progressive condition There are currently 18 million people diagnosed in the UK and a further million may have the condition without
knowing it These numbers are increasing fast Poorly controlled diabetes can lead to blindness, heart attacks, strokes, kidney disease and nerve damage The only way to tackle diabetes effectively is to take action early This is the key element of Diabetes UKs campaign Action today, health tomorrow
12
In many cases the tragic impact of diabetes could be prevented Effective monitoring and treatment are key to keeping people with diabetes healthy today, tomorrow and into the future People with diabetes need the right support to be able to make day to day decisions, which will influence their long term health In order to ensure that the NHS is providing the best care possible Diabetes UK is focussing on three key areas where action now can make a big difference: o All people with diabetes will have their eyes fully checked, at least once a year Why? Because diabetes is a leading cause of blindness and because treatment can prevent blindness in 90 per cent of those at risk, if applied early and adequately o All people with diabetes will be provided with the education they need to be able to effectively manage the condition on a day to day basis Why? Because only just over half of
people with diabetes realise it can lead to heart disease and death and because 95 per cent of diabetes care is self care o All children with diabetes will be provided with access to local, high quality, specialist care Why? Because at least 80 per cent of children with diabetes are not reaching recommended blood glucose levels and because that leaves them at risk of serious problems such as heart disease, blindness and stroke in later life Diabetes UK will be campaigning on many fronts At a local level, the regional offices, Diabetes Campaigners Network and Voluntary Groups will be working to ensure that PCTs are delivering the best diabetes care and sharing good practice At the national level, we will continue to lobby government and the NHS to provide the support and encouragement required to allow PCTs to fulfil their obligations under the National Service Framework for Diabetes Further information For more information about Diabetes UK visit our website at wwwdiabetesorguk or phone us on 020 7424 1000
13
References
1
Kohner et al 1996 Report of the Visual Handicap Group, Diabetic Medicine, 13, Suppl 4 S13S26 2 Department of Health British Diabetic Association 1995 St
Vincent Joint Task Force for Diabetes Visual Impairment Subgroup 3 Non members survey for Diabetes UK, Akadine Research Ltd, May 2005 4 Patients with diabetes receiving screening for diabetic retinopathy, Department of Health, 2004/05 5 Your Local Care A survey of diabetes services in primary care organisations, Dr Foster and Diabetes UK, November 2004 6 Awareness of Diabetes and Diabetes UK, MORI Social Institute Poll for Diabetes UK, January 2005 7 All Wales Retinopathy Screening Programme Survey Welsh Assembly May 2003 8 Diabetes UK Membership survey and experiences of healthcare November 2004 9 Non members survey for Diabetes UK, Akadine Research Ltd, May 2005
14
Source:diabetes.org.uk
