Age-related Macular Degeneration
The final item of business today is a members’ business debate on motion S3M-7433, in the name of Robert Brown, on fighting visual impairment and age-related macular degeneration. The debate will be concluded without any question being put.
Motion debated,
That the Parliament recognises the importance of eyesight to a full life; understands that age-related macular degeneration (AMD) accounts for over half of registered blindness; is concerned that the prevalence of AMD is set to grow markedly with the increasing age profile of the population in Glasgow and the rest of Scotland; notes that treatment for AMD requires repeat application of appropriate treatments, commonly a regime of eye injections, but that outcomes are good if diagnosed early, and believes that it is vital that NHS boards are able to meet demand for treatment effectively now and in the future.
17:04
This is the last members’ business debate of the year, and I am pleased to be able to devote it to visual impairment—a subject that is close to my heart and my interests as convener of the Parliament’s cross-party group on visual impairment.
The loss of eyesight is a grievous disability, whether it be by way of a genetic problem, disease, accident or—as we have seen too often in recent years—war and combat. The loss of eyesight among young men and women is particularly harrowing. Difficult, too, can be the deterioration of eyesight with age, disease or infirmity, which is hugely harrowing experience in terms of the social lives and engagement of many more people.
The Royal National Institute of Blind People Scotland recently compiled a report on the cost of sight loss in Scotland, which looks forward a decade to 2020. It identified that, in 2009, 35,588 people in Scotland were registered with their council as blind or partially sighted, with 2,934 new registrations a year. That is certainly an underestimation by at least 10 per cent of the real incidence of sight loss, which probably tops 40,000. In addition, a further 148,000 people are estimated to have significant sight loss. The overall figure is expected to double by 2031 to almost 400,000 due to increases in the elderly population and various health factors. Those are the sort of casualty figures we might expect from a major war or epidemic. Already one in six out-patient appointments in some areas is for an ophthalmic appointment.
Leaving aside the individual cost, the costs to public services of sight loss are estimated to be £194 million in direct costs and perhaps £434 million in indirect costs—such surveys are always terribly imprecise, but we get the general direction of travel. The figures are rising by £120 million a year.
Today I want to focus on only one cause of sight loss: age-related macular degeneration, which is the cause of sight loss in around half of registered cases. AMD affects the part of the eye called the macula—a small area at the centre of the retina that is responsible for what we see straight in front of us. It allows us to see colour and fine detail. People with macular degeneration often see a dark or blurred spot in the centre of their vision, making it very difficult to read, write and recognise faces or objects and, obviously, impossible to drive. It thereby wreaks devastation on their lives and, to some extent, the lives of those around them.
AMD comes in two forms: dry and wet. The dry version accounts for about 90 per cent of cases. It is untreatable but develops slowly. Wet AMD is much more aggressive and serious, and can lead to significant sight deterioration within weeks, but if there is early diagnosis and effective treatment its effects can be halted, mitigated and even sometimes reversed. The magic treatment is a product called Lucentis that is injected into the eye on a repeat basis—which, I must confess, sounds horrendous. Scotland led the way with the use of Lucentis, which was approved here in 2007, but not in England until 2009.
Across Scotland, the number of patients requiring treatment was around 1,225 in 2009, but the figure is growing, not least due to the need for the repeat injections. In other words, new people come on to the list and have to have on-going treatment. On the other hand, the savings to the national health service and other services are measurable in many millions of pounds. For example, there has been a reduction in registration for blindness or partial sight in Tayside of about 30 per cent, as a consequence.
There is agreement among clinicians that the current level of service is below standard, notwithstanding that there has been tremendous progress in recent years. It is partly a challenge of the growing scale of the problem. One requirement is the need for additional clean rooms, operating theatres and equipment to carry out the procedures. The procedure has to be done in completely sterile conditions and competes for operating theatre time with other procedures. The problem has grown in recent years.
Anyone who has been to their optician recently will know that there have been immense changes in the quality of the check-up, with new equipment in use following the introduction of free eye tests in 2006 and the replacement of the traditional eye test by the comprehensive eye check-up that we have developed under the aegis of the Scottish eye care group. However, there is a growing need for additional OCT—optical coherence tomography—machines to aid diagnosis. The machines are not particularly expensive, but nor are they anything like as widely available across the country as they should be. There are also problems of inadequate staff levels and the need for improved follow-up services for patients, such as more patient counselling.
In the spirit of Christmas, I have not named individual health boards, but regional variations of service are clearly apparent and there is a need for a nationally agreed standard of provision. An audit of facilities that was carried out by the manufacturers of Lucentis identified the extent of some of the issues. In one health board area, for example, the comments across the hospitals were:
“Expand service ... once OCT and clean room are ready ...
Clean room and nursing staff required
Clean room and OCT needed
A secondary care OCT required, clean room and nursing staff
Clean room required
OCT required, clean room in Optha department required”.
I make that point not to single out any health authority, because there is a growing challenge, particularly for Government, in these days of financial restrictions. However, the procedures preserve eyesight, protect independent living and stop greater calls on health and care services. Therefore, I hope that the minister will be able to comment on those issues in detail in replying to the debate today, or in follow-up correspondence.
I began by using words such as “devastation”, “grievous disability” and “harrowing experience”. Nevertheless, I am bound to say that the opportunity to engage with RNIB Scotland, the Royal Blind School, Guide Dogs and the other organisations that deal with visual impairment matters has been enormously inspiring as well. The work and opportunities for young blind people with Insight Radio; the rehabilitation work that is done with people who have lost their sight; the success of inclusive educational techniques at, for example, Uddingston grammar school; the commentary-accompanied Bollywood film that I saw recently in Glasgow; the activities of Haggeye, the RNIB’s youth-led organisation; and, perhaps above all, the inspirational work of the superb blind musicians who entertained us to a high professional standard a few months ago, reading music in Braille format, demonstrate that, despite challenges, the human spirit has no limit. The potential of interactive communication technology is also a universe away from the totemic white stick and has widened the life chances of many people.
Nevertheless, it is the job of Government and Parliament to make sure that national health service boards are able to meet the growing demand for the key treatments, which are so significant to so many people; that eyesight is preserved, not compensated for; and that people cease to have the worry of unnecessary sight loss.
I am grateful that members have stayed behind tonight to listen to and take part in this last members’ business debate of the year, and I have very great pleasure in speaking to the motion in my name.
17:11
I congratulate Robert Brown on securing the final members’ business debate of 2010. I understand that the debate was to have taken place some time in January, but I am sure that Robert Brown’s persuasion and the importance of the subject helped to bring it forward.
I was only too happy to sign the motion, as I am one of the deputy conveners of the cross-party group on visual impairment, of which Robert Brown is the convener. Like other cross-party groups in the Parliament, it provides a valuable interface between the Parliament and members of the public, not to mention organisations such as RNIB Scotland and Guide Dogs. Robert Brown also mentioned Haggeye—RNIB Scotland’s youth group—which is awe inspiring in what it achieves. That interface can only be a good thing in helping MSPs to understand the issues that affect the country.
I do not intend to go over all the ground that has been laid out by Robert Brown, but I will touch on a couple of issues. Before I do so, it is important to stress the major strides that have been taken by the current Government and the previous Executive in eye care. The introduction of free eye tests has been a policy of which the Parliament and Scotland can be proud. It has followed the prevention model of intervention, which should be used more widely across the public sector. Prevention is always better than cure and tends to be cheaper in the long run. In these straitened times for the public sector, Scotland needs to work more on the prevention model.
With neovascular age-related macular degeneration—AMD—accounting for more than half of all registered blindness in Scotland, there is obviously a problem to be dealt with. Wet AMD, which is the more aggressive of the two forms, affects only 10 per cent of patients, but can be treated early. Saving the vision of one person is a gift that society can offer, but the value of saving the eyesight of potentially many more is incalculable. The issue highlights the importance of the NHS in Scotland as well as the importance that Scottish society places on dealing with sight loss.
In 2009, there were 1,225 people throughout Scotland with wet AMD who required treatment. Although tremendous progress has been made in the NHS, there remain a number of challenges that need to be addressed. In any walk of life, nothing is perfect and there can always be improvements. Why should eye care be any different, particularly as such a low base was in existence until the free eye test was introduced? I cannot touch on all the challenges, but a couple of them are the regional inequalities in treatment and criteria, which Robert Brown touched on, and the need for improved services for follow-up patients—for example, patient counselling is deemed to be below the adequate standard.
Through the cross-party group and, indeed, constituents, I have heard examples from life of how people were told that they were going to lose their sight. Obviously, their first reaction was utter shock, but one issue that has come up time and again is the lack of counselling or signposting to counsellors. There is no doubt that people who receive such devastating news require support—exactly the same applies to people who are told that they have cancer—and counselling is absolutely vital.
I hope that Parliament will continue its good record on such matters. We should not beat ourselves up about not having the right solution at the moment; the truth is that we are nowhere near the summit in dealing with sight loss, including wet AMD, and with every day that passes our constituents are presented with life-changing experiences, which is bound only to increase with an ever-ageing population.
I welcome the debate and the fact that the issue has been raised in Parliament. I am sure that the whole Parliament is committed to improving the service for everyone who has to deal with sight loss.
17:16
I welcome the fact that Robert Brown has secured a debate on this important topic, not least because ophthalmology is one of a number of national health service departments that are under severe pressure. Dermatology, for example, is under huge pressure from referrals for potential melanoma diagnoses, while ophthalmology is under pressure from the increase in the number of cataracts, age-related macular degeneration, diabetic retinopathy and glaucoma. Moreover, one considerable concern is the increase in cases of type 2 diabetes—and its associated retinopathy, which is still one of the major causes of blindness—as a result of the growing problem of obesity.
The situation with visual impairment is improving as a result of the free eye tests to which Robert Brown referred and that stand as one of the best achievements of the last parliamentary session under the Liberal-Labour Government. We need to do more to promote those tests, although I concede that the numbers taking them have grown enormously. There is no doubt that getting tested early will make it less likely that someone will suffer visual impairment, given the number of conditions—including the excellent example of wet AMD—that are treatable. In Dundee, which has a fairly comprehensive service, the number of new visual impairment registrations has fallen by about 20 per cent. That reinforces the point made by Robert Brown and Stuart McMillan that great regional variations are bad, not only for patients but for the health service in the long term and, indeed, for all services, particularly if we bear in mind the fact that someone who becomes visually impaired requires a huge amount of support.
Wet AMD is a classic example of the problems that face the health service. Just a few years ago, it was untreatable. I believe that it accounts for only 10 per cent of the total incidence of macular degeneration, not all cases of which can be treated. However, with the very latest treatments, the condition is almost reversible, which is interesting—although I point out that those treatments are even more expensive than those that were introduced initially.
I will be interested to hear what the minister says in her summing up, but I believe that the system needs to be reviewed urgently, because departments are being overwhelmed. There is a great need for an effective national optometry contract, as part of the optometry service, to deal with all the follow-ups that will be needed. Robert Brown said that so far there are about 1,100 cases of this condition, but that is only the beginning, not the end, and the numbers will increase hugely. Follow-ups will be required to ensure that the condition has stabilised and to establish that further treatment is not needed, and if monitoring arrangements are not shared with the optometry service, the whole system will simply collapse.
In its aims to improve eye health and eliminate avoidable sight loss, RNIB’s VISION 2020 UK initiative is extremely valuable and very much to be welcomed and I also praise the Macular Disease Society for its important efforts to raise awareness of AMD.
The last point that I want to make is that the arrangements are a very good example of the procurement risk-sharing arrangements. We need to consider those arrangements regularly to check whether the initial risk sharing has reflected the true risks. That may require an adjustment in the cost-price arrangement with the pharmaceutical industry to ensure that the risks are genuinely being shared.
17:20
As we have heard, sight loss is becoming a serious issue in Scotland. It is expected that its incidence will double in the next 20 years, largely as a result of the ageing population, but also as a result of the huge rise in type 2 diabetes in the many people who are obese because of their poor diet. That will have a major impact on health and social services, and Robert Brown is to be commended for raising members’ awareness of the situation by securing this debate. I apologise for failing to sign his motion; that was an omission on my part.
We know that age-related macular degeneration already accounts for more than 50 per cent of all registered blindness, and that figure will undoubtedly increase as the population ages. The affliction is a serious one that has a major impact on people’s lives. It certainly ruined my mother’s last few years. She became quite seriously depressed as a result of losing her ability to read books, which was a lifelong passion that could not be satisfied by the talking books that she was offered as a substitute. There are certainly more and better magnification aids available now than were available then, but reading or watching television with them is a real hassle for elderly people who find it difficult to learn new techniques. Within a few weeks, an uncle and a close friend went from being able to drive a car to finding it difficult to recognise faces when they met people. The affliction interferes with people’s lifestyles in a major way, particularly those of people who live in rural areas and depend on their cars to get around. It is obviously key to their welfare that they receive whatever help is available as soon as possible.
Unfortunately, the common dry type of macular degeneration is currently untreatable, but something can be done about the aggressive and rapidly progressive wet form, as we have heard. It is therefore important that it is diagnosed early, when treatment to reverse it, halt its progress or at least mitigate its effects can be effective. Robert Brown referred to that in his speech. Older people must be encouraged to have regular eye checks so that AMD can be picked up early. Eye checks are freely available, so there is no reason for anyone not to see an optician regularly.
Because of my family history of macular degeneration, my optician has encouraged me to check for it regularly by looking at a card with a grid printed on it, which is available from opticians, or a crossword puzzle grid, to check whether the lines are straight. If they are seen by either eye to be at all wavy, that could be a signal that all is not well and that an urgent optician appointment is necessary. It would be beneficial if the importance and ready availability of such a simple test was made known to the older population in general so that older people could look out for early signs of something that would ruin their lives if it was not diagnosed and treated early.
Unfortunately, as with many medical conditions that we hear about in members’ business debates, there are postcode issues with services for macular degeneration. In its helpful briefing for the debate, the RNIB stated:
“Regional inequalities in treatment and criteria are particularly evident.”
The RNIB sees a clear need for a nationally agreed standard of provision, taking into account, obviously, that resources will vary across regions. It has also highlighted the need for improved services for patients who have already been diagnosed, such as counselling services, which Stuart McMillan mentioned. Counselling is below an adequate standard in most parts of Scotland.
As we have heard, there are also issues to do with equipment and accommodation. I agree with Robert Brown that it is vital that NHS boards are able to meet demands for treatment now and in the future. That will reduce the demands that are placed on social and mental health services by patients who find it difficult to cope with the development of visual impairment in their later years. To that end, the Government should look at putting in place a formal five-year plan for the provision of macular services in Scotland, as recommended by the RNIB, if that is not already being considered.
I look forward to the minister’s response.
17:25
I welcome the opportunity to take part in the final members’ business debate of 2010 and I congratulate Robert Brown on securing the debate and on the motion on age-related macular degeneration. I pay tribute to Robert Brown for his work as convener of the cross-party group in the Scottish Parliament on visual impairment. He has a real commitment to the issue, as was demonstrated by his impressive speech.
Stuart McMillan, who, like me, is a vice-convener of the cross-party group, highlighted the group’s importance in interfacing with the Parliament. I underline the contribution of James Adams, the group secretary, and of two members from my constituency, Jimmy O’Rourke and Margaret O’Rourke. They are both visually impaired, but that does not stop them being active members not only of the cross-party group, but of many community and trade union groups and campaigns. We should hold them up as a shining example to us all.
There is no doubt that we all take eyesight for granted. As we get near Christmas time, people, particularly those with young families, enjoy the time with young children. However, imagine if we were robbed of our eyesight and were not able to see the pleasure on the children’s faces when they open their presents on Christmas morning. We take eyesight for granted. Thinking about the potential loss of eyesight demonstrates how important the work is on issues such as age-related macular degeneration.
As Robert Brown says, the condition accounts for half of registered blindness. As the age profile of the population is changing, there is potential for the problem to affect more people. The debate has focused on what the NHS can do and, as with many such debates, it is set against the background of budget reductions. However, a clear case can be made for appropriate treatment of the condition to be provided. As Nanette Milne said, early diagnosis and intervention are key. If health boards are geared up to diagnose the condition at an early stage, there is an opportunity to treat it and to introduce appropriate improvements.
Consistency among NHS boards is important, particularly when costs are an issue. To be honest, I am not aware of examples of good practice in NHS boards throughout Scotland, but they must exist, and that good practice could be rolled out to other boards that are perhaps not as proactive. As Robert Brown demonstrated through the statistics that he quoted, if we can give people quality eyesight for longer, they can make more of a contribution to the economy and we can give them the appropriate quality of life. It is important for health boards and the Parliament to deliver that.
I thank Robert Brown for bringing the issue to the Parliament. It is important, and members have given good voice to the issues.
17:28
I, too, congratulate Robert Brown on securing this important debate. It is estimated that about 23,000 Scots are visually impaired as a result of age-related macular degeneration. I am sure that we all know someone among our family or friends who is affected by the condition. The Scottish Government takes the condition seriously and I am therefore pleased to reply to the issues that are raised in Robert Brown’s motion.
Before I respond to the specifics of the motion, I will say a little about where we are in respect of developing and improving eye care services in Scotland. Following the introduction of the new NHS eye examination in Scotland, we are now generally acknowledged as a world leader in the provision of high-quality and effective eye health care services, and that is a good place to be. The Government has made substantial funding available for optical practices to purchase digital cameras and other associated equipment to undertake the new examination and take photographs of the eyes to monitor related health conditions.
Clearly, we have the infrastructure in place to provide improved eye health care to the people of Scotland. Encouragingly, the take-up of the new eye examination, which is free and will continue to be free, continues to grow. In the year ending 31 March 2010, approximately 1.8 million NHS eye examinations took place in Scotland, which is up almost 90 per cent on 2006, when the new examination was introduced. That amply demonstrates that people in Scotland are taking on board the message about the importance of maintaining good eye health care and are making good use of the services that are in place.
When the “Review of Community Eyecare Services in Scotland” was published in December 2006, it recommended making changes to improve the integration of community eye care services; the quality of patient care; and the efficiency of the service. To help facilitate those changes, we made available £2.6 million of pump-priming funding. NHS boards, in partnership with their stakeholders, submitted proposals for that funding for improving the delivery of eye health care services to adults and children. That source of funding has supported the implementation of the principles within the eye care review.
A wide range of projects received pump-priming funding, including an ethnic minority eye health project in Glasgow, which has helped to increase the awareness in ethnic communities of the importance of good eye health.
I was pleased when John Legg offered RNIB Scotland’s assistance to the Scottish Government to help keep a track on the progress of the various pump-primed projects and with the subsequent monitoring.
An evaluation framework was developed to reflect the principles within the eye care review, which enables NHS boards and their partners to report the progress of pilot projects. The report shows that NHS boards and their partners have evidenced commitment to improving services and outcomes for visually impaired people. The principles within the review have been fully embraced, with significant modernisation of services taking place in order to improve the quality and consistency of care that is being delivered across Scotland.
Although, not surprisingly, some projects have developed faster than others, there has been systematic development of integrated eye care networks throughout Scotland, with partnership structures and leadership being well established. Progress reports indicate that approximately 80 per cent of the population now have access to integrated eye care services. That is a major achievement.
Although integrated eye care networks are focused within community services, some networks have been further enhanced to include acute services. For example, in Lanarkshire, a particularly effective low-vision service has been established. Stakeholder events have been undertaken and focus groups have been established across project areas to inform and influence the planning and development of services.
In summary, the investment from the Scottish Government has created an opportunity for a national approach to the improvement of services for people with a visual impairment.
Can the minister say anything about the OCT machines? There is a challenge in that regard. I accept that she might have been about to speak about the matter.
Are there any unhelpful obstacles in the way in which health boards are funded that might drive the finance elsewhere and prevent full advantage being taken of it?
Robert Brown makes a fair point. OCT machines are an important element of what we are trying to do. I am sure that he will be pleased with some developments that will take place in the new year in a health board that is close to his heart, which will, we hope, improve matters.
On age-related macular degeneration, others have mentioned RNIB’s “Cost Oversight” report, which examines the cost of eye disease and sight loss in the United Kingdom today and in the future. The report makes stark reading. For example, the direct, indirect and quality-of-life costs of sight loss in the UK in 2008 were estimated at £22 billion. Given the increase in the elderly population over the five-year period from 2008, those costs are projected to increase significantly by a further £7.6 billion in 2013. The report also focuses on age-related macular degeneration and concludes that, if we can provide early detection and access to treatment, the cost of partial sight and blindness to the individual and society will be contained.
However, this is not just about money. It is, above all, about the quality of life of the people of Scotland. Of course, we want to prevent avoidable sight loss whenever possible. The introduction of the universally free eye examination has been, as other members have said, a major step forward. It allows patients to receive free of charge an appropriate health assessment of their whole visual system, and it helps to provide early identification of eye conditions such as AMD. It gives optometrists and ophthalmic medical practitioners the professional freedom to perform the tests that are appropriate to patients’ symptoms and needs, and it allows for the management of a wide range of common conditions in the community.
Importantly, the eye examination promotes optometrists and OMPs as the first point of contact for eye problems. Early referral to the hospital eye service can only be beneficial for patients who might be suffering from AMD, as it is important—as other members have pointed out—that wet AMD is treated as quickly as possible.
I am acutely aware that members who are participating in tonight’s debate believe that it is vital that NHS boards are able to meet demand for treatment effectively, now and in the future. I assure members that patient safety is always at the forefront of our concerns. That is why we devote so much attention to ensuring that patients who are waiting for review appointments for chronic conditions are seen within clinically appropriate waiting times.
In the area of eye health, officials are working with eye care Scotland and NHS boards to assess current capacity for return out-patient appointments to manage chronic eye conditions such as diabetes, glaucoma and age-related macular degeneration. Recommendations will be forthcoming on the effective management of return out-patient services to ensure that capacity is available to meet projected changes in demand, and I am happy to keep Parliament updated on that. I do not pretend that in the current circumstances those issues will be straightforward to address, but the recommendations will help us to identify whether any service redesign or other change is required to meet that demand.
One recent step will, I believe, make a significant contribution. We recently approved the business case to provide an innovative link between optometrists and ophthalmology departments. That important development, which has been warmly welcomed by all parts of the profession and by members on all sides of the chamber, should increase efficiencies and speed up the process for patients who need to be seen quickly by hospital eye departments. A steering group has been formed to take forward the project and it will hold its first meeting in January. We are also making funding available to NHS boards to enable them to develop their individual implementation plans.
I welcome tonight’s debate, and I assure members that we aim to continuously improve our eye services for patients, particularly for those who suffer from AMD.
Meeting closed at 17:37.