Save Our Sight: RNIB campaign report
May 2012
About RNIB
Royal National Institute of Blind People (RNIB) is the leading charity offering information, support and advice to almost two million people with sight loss.
We are a membership organisation with over 10,000 members who are blind, partially sighted or the friends and family of people with sight loss.
Our three main priorities are set out by our five year strategy (2009-2014):
· stopping people losing their sight unnecessarily
· supporting independent living
· creating an inclusive society.
As a campaigning organisation, we fight for the rights of blind and partially sighted people in each of the four nations of the UK and undertake work to stop people losing their sight by championing better access to diagnosis and treatment of eye conditions.
About this report
This report marks the launch of RNIB's "Save Our Sight" campaign and our renewed and strengthened commitment to tackling avoidable sight loss.
We know that sight is precious and that it is the sense people most fear losing. We know what a massive impact sight loss has on people's quality of life. However, half of all sight loss is avoidable through early diagnosis and access to treatment.
This shocking statistic must be reduced and this is exactly what "Save Our Sight" aims to achieve. This ongoing campaign will ensure continuous efforts are made to improve access to diagnosis, treatment and monitoring for the four leading causes of blindness (cataract, glaucoma, wet age-related macular degeneration (wet AMD) and diabetic retinopathy).
To kick start this campaign, RNIB has undertaken freedom of information (FOI) requests to examine service provision relating to the four main eye conditions across England. It has also reviewed key initiatives taking place in Scotland, Wales and Northern Ireland to reduce avoidable sight loss. Findings, along with our recommendations for improving eye care, are presented in this report and offer a snapshot of service delivery across the UK.
Introduction
In the UK it is estimated that almost two million people are affected by sight loss, at a predicted cost to the economy of over £6.5 billion per year in direct and indirect costs (Access Economics, 2009). The number of people at risk of the main causes of blindness – cataract, glaucoma, wet AMD and diabetic retinopathy – is set to increase by up to 25 per cent in the decade leading up to 2020.
RNIB estimates that over half of sight loss is avoidable; yet it continues to increase due to problems accessing timely diagnosis, treatment and monitoring. With some eye conditions, such as glaucoma, the chances of retaining good sight are extremely high if the disease is caught early and treated appropriately. However, it is estimated that 17 per cent of people in the UK who have severe sight loss in at least one eye, have lost their sight as a result of glaucoma.
Throughout the UK demand for sight saving treatments is increasing as the population ages. Hospital budgets are tight and capacity issues in eye clinics are hampering service delivery. In England, the NHS faces its own pressures of delivering £20 billion of efficiency savings while implementing major structural reforms. This is coupled with a shift to local decision making which could increase postcode prescribing and exacerbate health inequalities.
In response to these pressures and to reduce the amount of avoidable sight loss in the UK, RNIB is launching the "Save our Sight" campaign. The following sections outline the work that is currently being undertaken as part of the campaign in each of the four countries of the UK.
Focus on England
Over the past few months, RNIB has sent FOI requests to all PCTs and hospitals seeking information on their treatment policies for cataracts and two macular eye conditions (wet AMD and macula oedema following retinal vein occlusion). We have also asked for information on hospital protocols for monitoring glaucoma follow-up appointments and reviewed data on diabetic retinopathy screening uptake provided by the NHS Atlas of Variation.
Our findings, conclusions and recommendations for improving services are summarised below. The full results are outlined in Appendix one and two at the end of this report.
1. Cataract
Cataract is a clouding of the lens that causes vision to appear washed out, misty or produces glare from lights. Cataract can be easily treated with a replacement artificial lens in a 30 minute operation and is one of the most cost-effective surgical procedures carried out by the NHS.
The Department of Health “Action on Cataracts” best practice guidance identified three criteria that need to be met for a cataract to be removed:
· the cataract affects the individual’s sight
· the reduction in the patient’s sight has a negative impact on their quality of life
· the patient understands the risks and agrees to have surgery.
In 2011 RNIB made a FOI request to all PCTs and found that just over half used arbitrary visual acuity levels to restrict surgery rather than taking into account the impact it was having on the patient's quality of life. In February 2012 we repeated this exercise.
Findings
We had a 99 per cent response rate to our FOI requests - with only one PCT failing to respond. We found that:
· 58 per cent of PCTs use visual acuity thresholds to restrict surgery.
· Of those, 81 per cent have a very restrictive policy, which has little or no leeway for patients outside the visual acuity threshold.
· 41 per cent of PCTs have no visual acuity restrictions and will operate when the cataract affects a person's quality of life.
· One per cent did not respond.
· There is extreme variation in service provision, for example patients in North East England can have surgery as soon as they need it; whereas in the South East some patients have to lose three lines on the eye chart (a visual acuity level of 6/18) before they are able to access second eye surgery.
Conclusion
When a cataract begins to affect a person's quality of life, their sight will only continue to deteriorate. They will require surgery at some point in the future and not treating straight away will only increase waiting lists in the future.
We know that some PCTs restrict access to surgery for both eyes if required by the patient. Anecdotal evidence suggests that patients are being asked to choose which eye they want treated and this in turn leaves them with depth of vision problems and at a greater risk of falling. Research shows poor vision was a factor in 270,000 falls in people aged 60 and over in the last two years. Every older person who falls and has to go to hospital costs the country about £2,500 (The Falls Omnibus Survey; 2011).
Recommendations
· PCTs and hospitals must follow the Department of Health "Action on Cataracts" guidance and the Royal College of Ophthalmologists' guidelines and not use arbitrary visual acuity levels to restrict surgery.
· We call on those who deviate from the guidance to provide evidence to show how their decision is in the best interest of the patient. This applies to PCT and hospital treatment policies as well as individual cases.
2. Glaucoma
Glaucoma affects peripheral vision, which is used for navigation and avoiding obstacles. The condition is caused by raised but pain free eye pressure – the "sneak thief of sight" can lead to significant visual field loss without the sufferer being aware. An eye test can detect raised eye pressure before it causes damage. Eye pressure can be lowered effectively with daily eye drops to prevent or limit further damage.
In line with NICE glaucoma guidelines and the NICE Quality Standard, patients must have access to timely follow-up appointments in order to make sure that their eye pressure is under control and not causing irreversible sight loss.
In February 2012, RNIB sent a FOI request to all eye hospital acute trusts asking them what proportion of their glaucoma follow-up appointments were delayed or rescheduled.
Findings
We received a 78 per cent response rate, of those:
· 57 per cent did not know how many appointments are delayed.
· 26 per cent knew or gave an estimate and have a significant proportion of appointments delayed.
· Seven per cent knew or gave an estimate and have less than 10 per cent of appointments delayed.
· 10 per cent told us that they intended to begin collecting the data or were beginning programmes to reduce delays.
Conclusion
The results we do have, coupled with anecdotal evidence, suggest that appointments are being significantly delayed. One hospital reported that 44 per cent of glaucoma follow-up appointments are currently delayed by over one month.
Patients often have no point of contact to appeal to when they find their appointments are delayed. Many have reported being discouraged from pursing delayed appointments by untrained receptionists (who advise that the delay is not important as the patient has not noticed any change in vision) or being told that they will simply have to wait.
Recommendation
· Hospitals must introduce a robust system to monitor glaucoma follow-up appointments. This will help ensure that any delayed or rescheduled appointments do not result in irreversible sight loss in glaucoma patients. This is in line with NICE glaucoma guidance and statement eight of the NICE Glaucoma Quality Standard.
3. Macular eye conditions
(a) Wet age-related macular degeneration
Wet AMD affects central vision used for reading and recognising faces. Vision loss is caused by inappropriate blood vessel growth and leakage at the back of the eye (known as the retina).
The condition is treatable with anti-VEGF injections, which halt blood vessel growth and deterioration of sight and in some cases improves vision. For a drug to be approved for use on the NHS, it must first be considered by the Medicines and Healthcare products Regulatory Agency (MHRA), who ensure it is safe and effective. Following this, it is reviewed by the National Institute for Health and Clinical Excellence (NICE) who look at the cost-effectiveness of the drug. Currently one anti-VEGF treatment (Lucentis) has been approved by the MHRA and NICE, while another is being used on the NHS (Avastin) but is unlicensed and has never been approved for use in the eye. Despite clinical trial data comparing these two drugs, there are opposing interpretations and views about the safety and efficacy of Avastin compared with Lucentis.
From December 2011 to February 2012, we sent FOI requests to all PCTs to ask them whether they were using the licensed NICE approved drug or whether they were using the unlicensed alternative.
Findings
We had a 99 per cent response rate from PCTs and found:
· 14 per cent are using Avastin as the main choice of treatment or intend to use it as a first line choice in the near future.
· 11 per cent have a policy that will allow or encourage Avastin use though none of the hospitals in their patch are currently using it.
· 74 per cent are using Lucentis in line with NICE guidance.
· One per cent did not respond.
Conclusion
The deviation from NICE guidance has led to a lot of confusion about treatment of wet AMD. Some PCTs allow Avastin use though none of their hospitals provide it; while in other areas hospitals treat with Avastin exclusively when their PCT advocates a choice.
In areas where clinicians and patients can choose which drug to use, there is a concern that the choice is being manipulated. Some clinicians seem to be under pressure to prescribe Avastin rather than Lucentis to reduce drug spend in their eye department. It is also not clear if patients are being offered genuine choice over their treatment, for example some patient leaflets appear to be unbalanced and may not describe the actual issues around the unlicensed nature of Avastin.
Recommendation
· A review of the safety and efficacy of Avastin for use in the treatment of wet AMD must be undertaken by the MHRA and NICE.
(b) Macular oedema following retinal vein occlusion
Macula oedema following retinal vein occlusion causes central vision loss. Central vision is used for reading, watching TV, recognising faces and seeing fine detail. A corticorsteroid implant (Ozurdex) is used in the treatment of this condition and can significantly improve vision if accessed quickly. This could mean the difference between living independently and needing help with daily tasks. Ozurdex need only be implanted twice a year and was recommended by NICE in July 2011 for use in this condition. PCTs should make NICE recommended treatments available to NHS patients within three months of NICE approving them for use in the health service.
In February 2012, RNIB wrote to all PCTs to ask them whether Ozurdex was available to patients.
Findings
Over 80 per cent of PCT areas responded to our request. We found that (as of April 2012):
· 12 per cent had no service.
· 40 per cent had a sub-standard service (often requiring each patient to complete an Individual Funding Request to get access to Ozurdex).
· 48 per cent had a full service.
Conclusion
Following conversations with ophthalmologists across the country, it appears that the reasons behind the failure to comply with the three month deadline are varied but include:
· delays in approving contracts and business cases to establish an Ozurdex service
· miscommunication between PCTs and hospitals resulting in services not being set up