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Age-related Macular Degeneration

12.30 pm

Mr. Paul Burstow (Sutton and Cheam): I am grateful for the opportunity to raise a matter that affects my constituents and people throughout the country: eye care in general and age-related macular degeneration in particular.

In the UK, about 500,000 people are legally registered as blind or partially sighted, but the true number, if it could be discovered, is probably much higher—perhaps as high as 1 million, or even more. Nine out of 10 such people are aged over 65. The Royal National Institute for the Blind estimated a few years ago that about two thirds of visually impaired people do not register their condition with social services and are not formally logged in the system. We do not have information about the real scale of the problems of sight loss and low vision in this country. In my local authority, the London borough of Sutton, slightly fewer than 1,000 people are on the register, and about 100 are added each year, but in 1997 the RNIB estimated that there were probably about 3,170 visually impaired people in my local authority area.

Each year in this country 16,000 people aged over 50 are registered blind as a result of AMD, or macular degeneration. As many as 500,000 people suffer from AMD. Estimates suggest that the number of cases has doubled since the 1950s and, because of the growing elderly population, is likely to treble during the next 25 years. Macular degeneration is this country's leading cause of sight loss among those aged over 50, but most people do not know that, or have not even heard of the condition. That must change, because knowledge is the first step towards preventing needless blindness and helping those with sight loss to adapt and cope more effectively.

Macular degeneration causes the progressive irreversible loss of central vision in an older person. It leaves peripheral vision intact, but causes profound visual disability. Everyday things that we take for granted such as reading, watching television and driving are no longer possible. Sufferers can no longer see the face of a loved one or anyone else. Most people with AMD—85 to 95 per cent.—suffer from what is known as the dry form of the condition, which progresses slowly but eventually results in the outcome that I have described. There is no treatment for the dry form of AMD, although research is being undertaken.

In the less prevalent wet form of the condition, a change in the blood vessels at the back of the eye causes scarring, which leads to the loss of central vision. It is far more aggressive than the dry form: sufferers can lose 75 per cent. of their vision in just 6 months. Early diagnosis is therefore important so that steps can be taken to give assistance. There are treatments that give some respite to people with the wet form.

Mr. David Heath (Somerton and Frome): I congratulate my hon. Friend on securing this important debate. Does he agree that the most important elements in dealing with people with AMD are early diagnosis at primary care level, access to ophthalmological

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specialists, and the adequate provision of rehabilitation and of low-vision aids, which is currently very patchy across the country?

Mr. Burstow : My hon. Friend makes some important points, which I shall develop in my speech, and I look forward to the Minister's response to them. I am aware of my hon. Friend's considerable interest in the matter, both professionally and as the chair of the all-party eye health and visual impairment group, which was established recently and has attracted a good deal of support from all parties in the House.

I mentioned that 75 per cent. of a person's sight is lost in six months with the wet form of AMD. As my hon. Friend says, early diagnosis, timely treatment, and good aftercare and rehabilitation can make a significant difference. In some cases, they can save sight; in others, they can help people to cope better with loss of sight. Regular screening is therefore vital. Promotion of awareness of eye care needs and eye health is also important. The campaign launched by the Guide Dogs for the Blind Association, the RNIB and others to raise awareness will make people more conscious of the importance of getting one's eyes checked. Not only are checks important in terms of enabling people to see by using glasses and changing their prescription, but they provide other health care benefits—for example, screening for glaucoma or diabetic retinopathy is vital, because those conditions do not manifest symptoms until it is too late: when they have had an effect, the harm has been done.

Last week I was pleased to have the opportunity to chair a seminar in the House on behalf of the Patients Association, in which it presented the findings of a comprehensive survey of ophthalmology services throughout the country. The report covered 76 health authorities, and health boards in Scotland, and achieved a 64 per cent. response rate. The survey discovered much that is important. It found that only half the health authorities believe that their current provision of eye health services is adequate, and that almost one in four health authorities do not offer any treatment for macular degeneration.

The survey found that only 1 per cent. of health authorities can offer a routine appointment with an ophthalmologist within a month—that is critical time lost, which can result in permanent loss of sight. It revealed that the average waiting time in health authorities throughout the United Kingdom is between three and six months. That is long enough for people to lose their sight, but not quick enough to ensure that steps are taken to save people's sight, or to help them to cope better with the consequences of losing their sight.

Only one in four English health authorities have done anything to get a grip on their current provision. As my hon. Friend the Member for Somerton and Frome (Mr. Heath) says, provision is patchy throughout the country, but only one in four English health authorities either have carried out or are planning to carry out some sort of audit of their existing eye health service provision as part of the implementation of the national service framework for older people. A more worrying figure is that 37 per cent. of health authorities do not know whether they are going to carry out audits and are not planning them. The failure of some health authorities to know even whether they plan to conduct an assessment of current provision is extraordinary.

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There are a couple of treatments available to deal with the wet form of AMD, although I do not want to portray them as a panacea or magic-bullet solution. Hot laser treatment is a cure that can be worse than the condition. Cold laser treatment works through a process known as photodynamic therapy or PDT. The latter, more recently introduced therapy—it was licensed in August 2000—is based on the use of a light-sensitive drug which targets abnormal blood vessels in the back of the eye and enables a cold laser to remove them and stop their growth. The treatment can have a substantial beneficial effect on the progression of the wet form of AMD, although not in every case: not every person is a suitable candidate. However, it can only halt the process, not reverse it.

I hope that the Minister will address a concern shared by many that was clearly stated in the Patients Association survey, which is that a blight has—perhaps inadvertently—been cast on that treatment by the ongoing National Institute for Clinical Excellence evaluation. A blight is suggested by the results of the Patients Association survey, which found that 73 per cent. of English health authorities had received funding applications for photodynamic therapy, but 67 per cent. of them had turned those applications down. Clinicians had recommended those applications—they were not turned down on the grounds that a clinical assessment indicated that they were not worth having. They were turned down because clinicians were waiting for NICE guidance. Ministers have made it clear that that is not an acceptable excuse.

I hope that the Minister will reconfirm that the Government's position is that NICE should not be used as a reason to exclude the possibility of, at the very least, access on a named basis to such treatments. Since the treatment was licensed in August 2000, 9,000 patients have been denied the opportunity to try it. In 2001 alone, 7,000 eligible patients were not given it, and only 500 patients got it on the NHS—despite the fact that more than 100 hospitals across the country have the necessary equipment. I hope that the Minister can comment on that.

The debate is not only about access to treatment, but, as my hon. Friend the Member for Somerton and Frome mentioned, about dealing with the consequences of losing sight and the provision of low-vision services. The Macular Disease Society published a survey of its members' concerns, views and hopes for the future. One story that emerges is of its members' experiences of inadequate information being provided to them at the point of diagnosis—in some cases, the diagnosis was not explained at all. Because there were no care pathways that patients could be sent down, they were sent home to cope in complete ignorance of their condition.

Only one in four health authorities plan any form of improvement to visual rehabilitation services. Much could be done to raise the general standard of low-vision services to the best standard in this country: measures include providing greater access to sophisticated reading aids, taking more care and providing more information at the point of diagnosis by eye care specialists, increasing awareness of where to refer people in terms of support and counselling and providing more training and support in the use of low-vision aids.

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Low-vision experts can advise on basic, practical matters, such as appropriate lighting in a person's home, which can make a significant difference to their ability to use the sight that they still have. They can also advise on rehabilitation training and access to rehabilitation officers, who can recommend the best ways in which to use and adapt domestic appliances.

I end by asking the Minister a few questions and drawing his attention to the recommendations in the Patients Association report, which provides a good basis for taking that service area forward. First, will he consider asking health authorities or the new strategic health authorities and those responsible for implementing the national service framework for older people to undertake audits of their existing services, so that we have a baseline against which we can evaluate progress? Secondly, will he look at current best practice in terms of the information provided to service users? That is particularly important at the point of diagnosis, because it raises awareness of eye disease and the importance of screening.

Thirdly, on the issue of equal access, the survey shows that services are a lottery. Those with the good fortune to live in one part of the country can get a speedy diagnosis and access to treatment and a range of support services; those in another area do not get those things and go blind never knowing that something better could have been available. Fourthly, we need clear referral patterns and pathways between opticians, who should be trained, and ophthalmologists. When the conditions I have mentioned are detected, speedy referrals can be made, which enable prompt action to be taken that in many cases may save a person's sight.

Finally, although the national service framework for older people rightly refers to the need to target the problem of falls among older people, many health authorities do not make the link between visual acuity and falls, despite the fact that it costs the national health service £1.7 billion a year just to cope with the hip fractures and other injuries that are the consequence of falls. The cost would probably be considerably greater if other costs were added, such as those for social services.

Losing sight can imprison a person just as effectively as putting bars on their windows. Taking steps to ensure early diagnosis, prompt treatment and good aftercare and support could be the decisive intervention that prevents a person from finding him or herself on the slippery slope to dependence. I hope that the Minister will assure us of a positive response to the Patients Association's recommendations and to the issues that I have raised.

12.45 pm

The Minister of State, Department of Health (Mr. John Hutton) : I welcome the opportunity that the hon. Member for Sutton and Cheam (Mr. Burstow) has provided to discuss these important issues. I congratulate him on the generally sensible and effective way in which he presented his arguments, but unfortunately I do not agree with every point that he made. The Liberal Democrats talk about a new style of politics. I hope that one day we will see evidence of it in their presentation of their arguments and their opposition to the Government. It is easy to present a position as uniformly bad, and generally speaking that

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was the hon. Gentleman's starting point today, but I take issue with that. It is not a fair or reasonable description of the national health service today or the progress that we have made during the past four years. I shall return to that as I respond to his four points.

The hon. Gentleman spoke of the need for improvements to local services. He said that there is a need to raise awareness of age-related macular degeneration and visual disease generally, and I agree with him on that. He expressed concerns about equal access, about which I have strong views. I think that his position and mine are probably not too dissimilar. Finally, he called for clear national standards. To be fair, the current Government have probably moved more substantially in that direction than any previous Government. I am not trying to evade the hon. Gentleman's points—I will deal with them shortly—but first I want to provide some context in addition to that which he has already provided.

AMD affects one in 100 people aged over 75, with some 100,000 people overall affected. It is the main cause of blindness in people aged over 50. I agree with the hon. Member for Somerton and Frome (Mr. Heath), who said that our priorities should be centred, first, on promoting the earliest possible diagnosis of illness—and its prevention, if possible—and, secondly, on ensuring the most effective treatment and cure. Treatment must be accessible and convenient to patients and must incorporate the latest available technology.

I take issue with the assessment that the situation is universally bleak. The Government clearly demonstrated the priority that they attach to the issue when they reintroduced free sight tests for everyone aged 60 or over from April 1999. That costs the NHS £50 million a year, but it is money well spent. The measure reversed restrictions introduced by a Conservative Government 10 years previously. Older people are most vulnerable to eye disease and stand to benefit most from regular eye examinations. I am glad to say that in 1999-2000 there were more than 2 million more NHS sight tests.

However, we must also ensure that the NHS stays sensitive to new advances in the treatment of eye disease and can quickly identify the people who might benefit from them. AMD is the most common cause of sight loss in people aged over 50. It is severely disabling, although it seldom leads to complete sight loss. Only the central vision is affected, so most people with macular degeneration should retain enough side vision to maintain a degree of mobility and independence.

There are two main types of AMD: dry and wet. The dry form of AMD is more common: we estimate that it affects almost 90 per cent. of those with the condition. The onset of the condition tends to be slow. As macular degeneration is an age-related process, it often involves both eyes, although they may not be affected equally at the same time. People are often not aware of loss of vision if only one eye is affected, noticing the condition only when it affects the better eye. Cases in which one eye is affected and the patient is not aware of the sight loss are often picked up at an eye examination by an optometrist as part of an NHS sight test. I hope that removal of the charging restrictions will aid better diagnosis, prevention and cure. Other people find that their visual cells simply stop working, with an effect

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similar to colours fading in an old photograph. That is known as dry degeneration, as the hon. Member for Sutton and Cheam rightly said.

In cases of dry AMD, vision tends to deteriorate gradually and the loss is not always severe. The worst effects can be alleviated with low-vision aids such as magnifiers, telescopes and, increasingly, closed circuit television cameras that project an enlarged image on a display in front of the patient's eyes. Better lighting and large-print books can also be helpful.

Although research is under way, it remains a sobering fact that the great majority of AMD cases—patients with dry AMD—are not treatable. Those patients are equally deserving of support and I pay tribute to the work of many voluntary organisations such as the RNIB, the Guide Dogs for the Blind Association and the Partially Sighted Society, who do so much to improve our understanding of the needs of people with visual disabilities.

The Government are continuing to provide extra financial support to the voluntary sector. We have recently made a grant of £130,000 over three years from October 2000 to a consortium of voluntary organisations, including the RNIB, Guide Dogs for the Blind Association, Action for Blind People and Sense, to develop low-vision services and improve co-ordination between health and social services and the voluntary sector. The hon. Gentleman identified that as an area on which the Government should focus their attention, and we are trying to do so.

Valerie Davey (Bristol, West): Will my right hon. Friend include the Macular Disease Society in future considerations? It is doing a very good job.

Mr. Hutton : We shall certainly consider that. We want to work openly with the voluntary sector, and no one disputes the society's expertise. I strongly agree with the hon. Member for Somerton and Frome that nothing can do more to improve the quality of life for people with visual handicaps than prompt, effective collaboration between the various agencies—health authorities, social services and others. That is the road that we want to travel.

Wet AMD, as the hon. Member for Sutton and Cheam said, is the most aggressive form of AMD but is less common, affecting around 10 per cent. of patients. It tends to have a more severe and rapid effect on the central area of vision. Blood vessels from one layer at the back of the eye start to grow into the central part of the retina—the macular area—and may leak or bleed, causing rapid and significant reduction in central vision. It tends to affect one eye at a time, but there is a risk of degeneration in the other eye in ensuing months.

Laser treatment was considered suitable for some patients with wet AMD, but only a very small proportion of all AMD sufferers might be considered suitable candidates for such treatment of the retina. It is normally successful only if the condition is picked up early, and even then not all patients are likely to be suitable. Furthermore, there is a risk associated with laser treatment that lesions may continue to progress after laser treatment and vision may even become worse. In most cases, therefore, the only existing treatment is to reduce the effects of any other eye condition, such as

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cataracts—I am pleased that we are doing significantly more cataract operations than ever before—so that artificial and natural light can be used more effectively. Patients may also be helped with the use of improved lighting, optical and other devices, and training.

The hon. Gentleman focused on the potential benefits of photodynamic therapy, which offers some exciting prospects. PDT offers a genuine prospect of increasing the accuracy and effectiveness of laser treatment for wet AMD. This treatment uses a photosensitive dye which, when activated in the back of the eye by a light source, closes abnormal retina blood vessels. The underlying abnormal blood vessels are then easily identified and selectively destroyed without damaging the overlying sensory retina.

The National Institute for Clinical Excellence is evaluating this treatment. Its appraisal committee will meet on 7 March to produce draft guidance. The committee will have a second meeting on 15 May and guidance on whether the treatment should be generally available on the NHS is expected in July 2002, subject, of course, to any appeals. The hon. Gentleman asked what happens in the meantime, which is a reasonable and fair question. He asked the Under-Secretary of State for Health, my hon. Friend the Member for Salford (Ms Blears), that question on 10 January. As an assiduous collector of information through parliamentary questions to the Department of Health, the hon. Gentleman will be aware that my hon. Friend set out the procedures that we expect NHS bodies to follow while they await NICE guidance. We expect them to take into account the available evidence and to assess patients in the light of it. Awaiting NICE guidance is not an excuse for NHS bodies to fail to get on with the job that they are supposed to be doing.

At this stage, we do not know what the NICE guidance will be. If the treatment were endorsed by NICE, the next step would be to ensure that the people who might benefit from it are identified and referred as promptly as possible. The measures that we took in April 1999 to extend eligibility for free NHS sight tests to people over 60 will have helped to prepare the way. Optometrists can identify the signs of AMD and, with additional advice and training, they could identify the cases of wet AMD that might be susceptible to the new treatment. A system of local protocols with hospital ophthalmology departments could be developed to ensure that patients are referred promptly for treatment. As the hon. Gentleman has said, there are already examples of such protocols for some other eye conditions, and we welcome those sorts of initiatives.

Concerns have been expressed about the capacity of ophthalmology departments to deal with referrals. The hon. Gentleman referred to a recent survey by the Patients Association that suggests that there are wide regional variations in ophthalmic services. That survey is accurate. Action must be taken to address those problems, and we are doing that. We have allocated an extra £20 million over two years to fund the capital costs of 60 schemes to improve treatment facilities. The NHS is providing more cataract operations than ever before: 236,000 operations were carried out in 2000-01, compared with 170,000 in 1998-99. That additional investment—which is part of a broader and deeper

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investment in the future of the NHS—will improve the standard of eye care for older people and greatly enhance the quality of their lives. There has also been an increase of about 4 per cent. in the number of ophthalmology consultants in each of the past four years. That trend is set to continue, so that the number of such consultants will rise from 651 to 895 by 2010.

The hon. Gentleman mentioned raising awareness. That is important, and I agree with his comments. I welcome the recently launched FOREsight initiative, which is backed by the AMD alliance of the RNIB, the Macular Disease Society and Age Concern. I hope that the campaign will be successful in raising awareness of AMD among the over-50s, and in encouraging people to visit their optometrists—especially if they suspect that they have the symptoms of AMD. The information booklet for the campaign includes an Amsler grid for self-testing to highlight visual distortions that might be symptomatic of AMD, and information on what to do if AMD is suspected. That might be helpful to some people, but regular eye tests should ensure that any signs or symptoms are picked up in the early stages of the disease, when treatment might be more effective in preventing sight loss.

In 1999, we collaborated with the RNIB on the "Half an hour could save your sight" campaign. Posters and leaflets describing the full range of health benefits from the eye examination were distributed to general practice surgeries, hospitals, public libraries and other public places. The Department helped with the costs of the campaign—I think that we provided about £40,000. I understand that the RNIB is planning a further campaign, drawing on the lessons of the earlier one. We await the outcome of that with interest. I cannot give a commitment to support a new campaign at present, but we will consider whether we can contribute to the initiative when we know more about the proposals.

Mr. Burstow : I am grateful for the Minister's response. Are the Government minded to extend the national service framework for older people? Will he examine ways in which the best practice that was discovered by the Patients Association can become the norm? As he has acknowledged, there are still too many places where services are not up to scratch, and where people do not get access to services as quickly as they need to.

Mr. Hutton : We have no current plans to modify the national service framework for older people, although we keep an open mind about such matters. That is the straight answer to the hon. Gentleman's question. However, all the national service frameworks are kept under close review. They are never the last word on any subject. They are beginning the process of achieving national consistency, for which he and many other people have long called. It is likely that the national service framework on diabetes—and especially its focus on diabetic retinopathy—will be perceived as helpful in dealing with some of the problems of inconsistency across the country. Furthermore, the Government are investing about £600,000 in research that is directly relevant to macular degeneration, as the hon. Gentleman knows because he asked a parliamentary question about it—a question which, I am glad to say, we answered.

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The hon. Gentleman raised important issues, and I have tried to respond fully to the points that he made to reassure him that the Government are strongly committed to improving eye health. We have demonstrated the priority that we attach to it by introducing free NHS sight tests—the over-60s are the most vulnerable to eye disease and stand to benefit most from regular eye examinations. We have begun to tackle the variations in ophthalmology services, for example, through the "Action on cataracts" campaign, and we will respond appropriately to advances in the treatment of AMD.

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