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Chamber and committees

Plenary, 04 Feb 2004

Meeting date: Wednesday, February 4, 2004


Contents


Wet Age-related Macular Degeneration

The Deputy Presiding Officer (Trish Godman):

The final item of business today is a members' business debate on motion S2M-667, in the name of Kate Maclean, on photodynamic therapy for the treatment of wet age-related macular degeneration. The debate will be concluded without any question being put.

Motion debated,

That the Parliament notes the recent decision by NHS Quality Improvement Scotland on the use of photodynamic therapy for the treatment of wet age-related macular degeneration (AMD) and acknowledges that photodynamic therapy is the only effective treatment for wet AMD, the most aggressive form of the disease and the leading cause of blindness in the UK, with around 650 new patients diagnosed with wet AMD in Scotland every year; is deeply concerned that funding has not been made available for clinicians to treat on the NHS those patients who urgently require the therapy, and endorses the demand by the Royal National Institute of the Blind Scotland and the Macular Disease Society that the Scottish Executive ensures that funding is immediately provided by all NHS boards, thereby saving the sight of those who could benefit from the therapy.

Kate Maclean (Dundee West) (Lab):

I welcome to the public gallery representatives of the cross-party group in the Scottish Parliament on visual impairment. I know that other people will be listening on their computers. I welcome in particular representatives from the Macular Disease Society and the Royal National Institute of the Blind. I thank them for the support that they and members of their organisations, particularly Gordon Matheson, have given to the cross-party group and for the useful briefing that was sent to all MSPs. Finally, I thank the 45 members—there are possibly more now—who have signed the motion that was lodged in my name. I am pleased that the Parliament has the opportunity to debate this important issue, which affects hundreds of Scots and their families.

I ask members to imagine themselves in the position of hundreds of Scots whose central vision is failing and who can no longer easily read, write, watch television or see their family clearly, however strong the light or their spectacles. I ask them to imagine finding out that what they have is wet age-related macular degeneration—AMD—and to imagine the relief that they would feel when they were told that the disease could be stopped in its tracks. Finally, I ask them to imagine how they would feel if they were then told that they could not get that treatment because the national health service does not provide it in their area.

We see people on television who are going blind because of a condition that is easily treatable, but we normally associate that problem with third-world countries, not modern-day Scotland. I know that I am not alone in finding completely unacceptable the fact that people in Scotland are going blind from an illness for which there is a licensed and affordable treatment.

That treatment is photodynamic therapy—PDT. It has been proven to be a safe, well-tolerated and effective treatment of the so-called wet variety of AMD. As long as it is administered shortly after diagnosis, PDT significantly slows or halts the deterioration in vision. It does not involve lengthy stays in hospital or surgical intervention; it is a relatively simple, two-step out-patient procedure.

Even though PDT was licensed in the United Kingdom in July 2000, it has not been made widely available, because the NHS was waiting for the final guidelines from the National Institute for Clinical Excellence. The process took two and a half years to complete—probably the longest ever appraisal of any new drug technology. Since then, NHS Quality Improvement Scotland has accepted the NICE findings. Unfortunately for the people who are losing their sight, however, little or no progress has been made towards making the treatment available throughout Scotland. That seems to be inconsistent with the Executive's view on postcode prescribing as outlined by the Minister for Health and Community Care, who said:

"Patients deserve equal access wherever they live in Scotland to new drugs which are the only effective treatment for a particular condition … It is entirely unacceptable that patients are denied the benefit of such a drug simply because there is no provision for it in their local Health Board budget."

Does the member agree that PDT has benefits in the treatment not only of wet AMD, but of many other conditions, such as skin cancer and other cancers?

Kate Maclean:

I understand that PDT is beneficial for people with some cancers and that it is difficult for people in some areas to access the therapy for the treatment of cancer as well as for the treatment of AMD.

To cut to the chase, I will outline for the minister what I hope can be achieved from this debate and from the tireless efforts of visual impairment and blindness campaigners who have been involved in the subject for far longer than I have or than the Parliament has been in existence.

We should state that the Scottish Parliament and the Scottish Executive support the call from RNIB Scotland and others that every patient in Scotland who meets the NHS Quality Improvement Scotland criteria for PDT should have the treatment. The evidence in the briefing that RNIB Scotland sent to every member, which I think the minister might also have received, is compelling. The reality is that patients with wet AMD in Scotland are needlessly losing their sight because the Scottish Executive has put no mechanism in place for delivering the treatment. In addition, access to PDT in the existing Scottish treatment centres has been blocked for many NHS patients because of a lack of funding from NHS boards. However, the treatment is sometimes available to those who can afford to pay its cost of approximately £6,000. That is unacceptable when people should receive treatment free in the area where they live.

The prevention of blindness can save money and should be considered an investment not only in human terms, but in economic terms. The human factor is obvious. As I said, macular degeneration affects the part of the eye that is responsible for central vision. As a result, everyday activities that we all take for granted, such as reading, watching television, driving and recognising familiar faces, become impossible.

My father has suffered macular degeneration for the past eight years. Will the member tell us whether the treatment can help people who have had the disease for that length of time?

Kate Maclean:

I will go into that a little later. Treatment depends on the type of AMD, which can be dry or wet. Someone who has been diagnosed with wet AMD has only a small window of opportunity in which treatment can be effective. Obviously, Mr Scott would have to obtain medical advice, but I suspect—although I do not know—that if the disease has been diagnosed for eight years, the treatment would not be effective.

The problems of macular degeneration can place an incredible strain on personal relationships, remove independence and lead to depression.

The member has one minute.

Kate Maclean:

Do I not have extra time because of interventions?

The economic case is equally evident. As I said, the cost of PDT is about £6,000 per patient. When that is compared with the cost to the public purse of someone losing their sight, which is estimated at about £10,000 a year, it not only becomes morally right to provide the treatment, but makes economic sense to make it available.

The concern is that, if health boards continue to refuse to fund the treatment, we could lose the trained and experienced staff who can deliver it. That could mean that, by the time the Scottish Executive gets round to rolling out a programme, the staff and the procedures that are required to deliver the treatment will no longer be in place.

I ask the Executive to consider supporting a gold standard of treatment for people in Scotland, which would mean that patients who were assessed as needing the treatment received it immediately. It is time that the issue was given the priority that it deserves. The window of opportunity in which the treatment can be of benefit is so small that fast-tracking processes need to be put in place immediately.

I am sure that the matter will come down to funding but, unless the situation is tackled urgently, individuals in Scotland will continue to go blind from a treatable condition. That situation is unnecessary and indefensible. Too many people in Scotland have already lost their sight through lack of treatment. We cannot give them their sight back, but we can act quickly to ensure that no one else in Scotland has to suffer what they have suffered.

A considerable number of members wish to speak, so I must ask for speeches of four minutes.

Stewart Stevenson (Banff and Buchan) (SNP):

I congratulate Kate Maclean on initiating a debate on this important subject. As the motion says, some 650 people in Scotland each year become sufferers of the condition, so it affects people throughout Scotland.

It is difficult to engage with the subject at a technical level. For example, the description of the condition that one of my constituents has is:

"classic with no occult subfoveal choroidal neovascularisation".

It is not especially useful to go into such technical complexities in the debate. The issue is really—and inevitably—about people and the effect that the condition has on them.

I have known the constituent of mine who suffers from the condition for many years. He is a lively 80-year-old, but I can see a change in him. He has the misfortune—in one sense—to live in the NHS Grampian area, which has not had the discretionary funds to make treatment available to him. That has been particularly difficult for him because he has seen people come from south-west Scotland with NHS funding to one of the only treatment centres in Scotland, which happens to be in Aberdeen. Of course, he could have bought treatment from the NHS and an offer was made. I understand the difficulties that are involved in deciding a fair and equitable policy for providing treatment in the early stages. However, let us consider the 650 people—I would be interested to hear the minister's numbers—and the costs that are involved. I do not think that the cost of providing the treatment in question exceeds £1 million. I do not have such money in my back pocket and it is not a trivial amount, but we must make the important contrast between it and the several millions of pounds that those 650 people would end up costing the public purse if they were not rescued from having a lack of sight. The difficulty is that different budgets are involved.

Fortunately, my constituent ended up contacting a specialist in Edinburgh and we managed to get him on a programme. However, he suffered from the wet form of the condition, which—as John Scott was informed—is a matter of extreme urgency. There was a delay of some six or seven weeks before he was treated on the NHS, which, with the wet form of the condition, is enough time for a person to lose around 50 per cent of the remaining sight that is provided by the macula, or the centre of the eye, which is the part of the eye that enables a person to recognise people, watch television and read books. One can be left with orbital sight, which enables one to navigate and move around, but the condition is serious. For people such as my constituent who are well stricken in years, such things can be difficult to cope with.

I hope that the minister will tell us that moneys will be available in the future to treat people with the condition and that there will be a relatively consistent policy throughout Scotland. I also hope that he will tell us that the two and a half years that it has taken before treatment for some forms of the disease is approved is not the kind of period that might be experienced with diseases that need treatment similarly urgently in future.

Mr David Davidson (North East Scotland) (Con):

I, too, congratulate Kate Maclean on bringing this serious and focused debate to the chamber.

In 1995, I had a problem with an eye. The problem affected the central vision in the eye and nobody seemed to know what the problem was. I was not 50 then, but the problem was frightening and brought home to me what such problems are like.

John Scott mentioned a relative. The population is aging and such conditions are terrible for older people whose sight may be failing a bit anyway. There will be more such conditions and people will lose their independence and their dignity. As Kate Maclean rightly said, such things put tremendous strains on families.

People over the age of 50 seem to be susceptible to such conditions. Many of those people are economically active and we are losing their ability to carry out jobs and to contribute to the funds that pay for the health service. There is a sense of justice in trying to keep such people going.

If we consider the opportunity costs of not dealing with the condition, we are talking about potential benefit costs of around £10,000; the costs to councils or individuals' families of providing household aids to make houses usable for people who have the condition; and the cost of personal loss of amenity and recreation, which can produce mental illness and pressures on people. The costs involved are heavy. Against that, the cost to the NHS of patients who are suitable for treatment is roughly £6,000 per patient.

I disagree with Stewart Stevenson's figures—I would put the costs of dealing with the third in Scotland who would benefit from early intervention at between £1.5 million and £2 million, but that is not really the issue. The issue is not about pennies, but about quality of life and benefits to the country.

There is a lesson to be learned. This is very much a condition in relation to which time is of the essence. There is no point in saying, "We have diagnosed it," and leaving it for ages. In England, people at first had to get treatment within three months, but the primary care trusts are now told that that can go up to nine months, by which time 50 per cent of people who would have benefited will have lost their sight. We must learn the lesson from England and consider the standards and the licensing that are involved.

Stewart Stevenson talked about planning for future demand on the service, and I agree that we should undertake capacity planning now. A fair bit of training will be involved, because we must have not just the equipment but the people to deliver the service. We must establish regional centres. I am not talking about every cottage hospital or hospital providing the service, but about there being reasonable access to the service throughout Scotland. Kate Maclean hinted at postcode access. If we can go down the regional route and focus on providing good, efficient, regional centres that are reasonably resourced and have well-trained staff, I am sure that we can take the lead. In England, they have taken three steps forward and two steps back because of the timescale. That is down to the need for capacity building.

In Scotland—in the health service that we run from this chamber—we must provide accessible, focused and high-class services. The main thing is to have early assessment. In dealing with conditions such as this, it is essential that we provide treatment at an early stage. I accept the fact that not everybody in Scotland who has the disease will benefit from that. Nevertheless, we must give people a fair chance to be assessed and, when there is hope, give them some relief and treatment. We must not use bureaucracy as a means of holding up the process. We need an assurance from the minister today that he will take the debate seriously and will report to the cross-party group on visual impairment, as well as to the chamber, on what the Executive is looking to do and on whether trials can be set up in the near future.

I support Kate Maclean whole-heartedly in bringing the subject to the chamber today.

Janis Hughes (Glasgow Rutherglen) (Lab):

I, too, congratulate Kate Maclean on bringing this important matter to the chamber. Like her, I pay tribute to the work of the cross-party group on visual impairment, of which I am a member. I welcome other members of that group who are in the public gallery.

It is surely unacceptable that, in this day and age, many people are going blind due to a condition that is completely treatable and preventable. Although there are many calls on the NHS budget, we should do whatever we can to prevent people with wet AMD from going blind. Of particular concern is the speed at which wet AMD can take hold, with significant sight loss within three to six months—a small window, as Kate Maclean said. That is why I support the view that fast-tracking patients with wet AMD is important. Working within such a limited timescale means that time is very much of the essence.

I also support the call from the Royal National Institute of the Blind that the Executive should consider seriously putting funding in place to ensure that people throughout Scotland have access to the most effective treatment for wet AMD—photodynamic therapy. Although resource implications are associated with funding all new treatments, it is important that we consider the bigger picture. The Department of Health's "National Service Framework for Older People" recognises visual impairment as an intrinsic risk factor in falls among individuals. The College of Optometrists believes that visual impairment is an important risk factor in falls and hip replacements. Reductions in contrast sensitivity, depth perception and peripheral vision have been specifically linked to the risk of falls, and the cost of treating preventable fractures is significant. Prevention is better, and often more cost effective, than cure.

However, we must recognise that there is much that is good about the provision of low-vision services in Scotland. For example, there is access to angiography in most, if not all, eye departments, and access to argon laser treatment in all eye departments. Similarly, there is great awareness of AMD in general optical services and prompt access for people with suspected wet AMD at most secondary care sites. In addition, in some centres, there is virtually one-stop access to low-vision aids, certificate of vision impairment forms and social services advice.

As I have said, it is vital that services are delivered speedily for a condition that worsens rapidly. The College of Optometrists is concerned that elderly people, who tend to make up the majority of wet AMD sufferers, make insufficient use of eye care facilities in the United Kingdom and it is important that we improve that situation. One way in which that could be done would be to provide localised low-vision services. A model suggested by an optometrist in my area could provide facilities that would promote independent living for people with visual impairments; ensure a multidisciplinary approach by involving as many professional groups as possible, for example rehabilitation workers or sensory needs teams; identify and meet unmet need for low-vision services within a defined area; establish or improve a community-based low-vision scheme to meet local needs; ensure that the people who are visually impaired are able to access all the services that are available to them, including visual impairment teams and voluntary organisations; and take account of the needs of patients with other sensory, physical or learning disabilities. Those are only some of the things that could be provided in a localised low-vision service. That would be one way of improving early diagnosis and, coupled with appropriate treatment, could go a significant way towards improving the lives of people throughout the local area.

As I said, there are many calls on the NHS budget and we must accept that it is impossible to satisfy every demand. However, I urge the minister to look seriously at this matter. I support the motion in Kate Maclean's name.

Eleanor Scott (Highlands and Islands) (Green):

First, I apologise because my mobile phone rang—I thought that it was switched off, but it was not.

I thank Kate Maclean for securing this very interesting debate, which has certainly raised the profile of a condition that I, as a former medical person, should have known about but did not. In my defence, I say that I worked with children rather than with the age group that is usually affected by the condition.

The debate has been interesting and I have learned a lot. I was aware that macular degeneration was something that affected elderly people, that affected central vision and that progressed slowly. I was not—to my shame—aware of the wet form of macular degeneration, which can be treated.

I will probably not take up my full four minutes because the debate could become repetitive if members are all agreed on the need to provide treatment for a condition that is as devastating as macular degeneration is, but which can be treated.

I want to make it clear that we are not talking about a controversial treatment that is new or revolutionary, about which there is some doubt or for which pressure groups are clamouring but on which the medical establishment is divided. We are talking about treatment that has been thoroughly evaluated. I will quote from NICE because it carried out the evaluation and NHS QIS has adopted its guidance. NICE makes it clear in a press release from September last year that

"The Department of Health and the National Assembly for Wales asked NICE to look at PDT for ARMD because genuine uncertainty"—

which at that time existed—

"as to its long-term value for patients, combined with how best it should be used had resulted in ‘post code prescribing'.

The NICE guidance makes it clear to the NHS and patients, no matter where they live in England and Wales, if and where this treatment can add value … those patients who can benefit from the treatment will now be able to do so."

NICE makes it clear that the treatment should be available. The press release concludes:

"The approval ends a period of uncertainty and will simplify the management of a disorder that accounts for 50% of disability in the UK."

I am not quite sure, but I assume that that means 50 per cent of visual disability. I was surprised by the extent of the disability that is caused by the condition and was even more surprised that there is such patchy provision of treatment that has been so well evaluated following what NICE calls a "challenging appraisal", which—as has been said—lasted for two and a half years.

Wet AMD presents, as has been said, with blurring and distortion of vision. When the condition is diagnosed following its presentation to the doctor it should be treated as a medical emergency. Other members have already said that there is a small window of opportunity in which to treat the condition; it is treatable, but only within that window of opportunity.

I said that I did not know a lot about the condition, but I have been doing some serious reading in the past 24 hours. I will probably be shot down in flames by ophthalmologists via e-mail tomorrow, but it looked to me, when I considered the treatment that it is proposed be made available, that it should not be much more technically demanding or costly than some similar treatments that are standard within the NHS, such as treatment for patients with the retinopathy that sometimes goes with diabetes, treatment of eye conditions that premature babies can have or laser treatment for detached retinas. Those treatments are all readily available on the NHS—photodynamic therapy should be, too. PDT is not a controversial new treatment. It is an established and evaluated therapy that should be available to all. I echo what other speakers have said and add my voice to theirs.

Shona Robison (Dundee East) (SNP):

I congratulate Kate Maclean on securing tonight's debate and I commend the cross-party group in the Scottish Parliament on visual impairment for all its hard work.

Although I do not want to repeat many of the points that have been made, I must say that it seems to be very strange indeed that only 150 of the 650 people who contract wet AMD each year are treated. That leaves 500 people to the fate of losing their sight. In this day and age, that seems to be completely unacceptable, given that there is a treatment available.

As has been outlined, photodynamic therapy is thought to be suitable for between about one third and one half of patients who have wet AMD, but it is suitable only if the condition is caught early. Of course, any delay in providing the treatment means that the chances of a person's losing their sight are increased.

As we have heard, Scotland has three treatment centres: in Glasgow, Edinburgh and Aberdeen. However, residing in one of those areas is no guarantee that a person will receive the treatment under the NHS. For example, although Edinburgh has a treatment centre, the treatment is not funded by Lothian NHS Board. Although patients from Dumfries and Galloway can be treated in Edinburgh under the NHS, a patient who lives in Edinburgh needs to go private to receive the same treatment because of the health board's funding policy.

We have also heard that PDT is fairly cost effective: it costs £6,000 per patient to save someone's sight. As has been pointed out, we need to compare that with the cost of not treating someone, which might involve benefit payments or community care services or lost productivity. The Executive's policy is to keep people living in their own homes for as long as possible, but by not treating people to prevent their losing their sight, we lessen the likelihood that they will be able to be maintained in their own homes. That undermines that element of Executive policy: not particularly joined-up thinking. Although investment would be required, I agree with Janis Hughes that we would achieve good value for money, in comparison with the cost of not doing that.

As Eleanor Scott said, PDT is not some new-fangled treatment that has not been proven. It has been assessed for over two and a half years. It has been well evaluated, so there should be no dubiety about its effectiveness.

What we have here is a classic case of postcode prescribing, which the minister previously made a commitment to end. Although that commitment technically covered only new drugs and treatments, I would have thought that whether someone's sight is saved should not depend on where in Scotland they live. We cannot allow that to continue, so I sincerely hope that the minister will give us a positive response tonight.

Mrs Nanette Milne (North East Scotland) (Con):

Like the other members, I am pleased to support the motion, which is on a subject that is of great importance to a growing number of older people in Scotland. Like Eleanor Scott, I had not heard of photodynamic therapy until fairly recently. Provided that the treatment is received in the early stages of WAMD, PDT is the only hope of improvement for many people who have the condition.

I have no professional experience of this life-shattering eye disease, but I have significant personal experience of macular degeneration within my own family. Before my mother died 17 years ago, macular degeneration was a crucial contributor to her failing health because it made her less able to cope with other health problems that were much more serious in their own right. From being a very outgoing person who was young for her age, who went into town to meet her friends every day and who never had her nose out of a book when she was at home, my mother became down-hearted and depressed.

My mother became unable to read newspapers or even large-print books. Obviously, she had to listen to, rather than see, her favourite television programme. Her quality of life was utterly ruined. When she went out, she had very little confidence and, all in all, she found her eye problem to be a massive handicap. Because only central vision is destroyed, it is hard for onlookers to perceive the problem. My mother could pick a pin up off the floor if she happened to catch sight of it out of the corner of her eye, so it is difficult to equate that level of peripheral vision with blindness for all practical purposes.

I suspect that my mother had dry AMD, which we know is as yet untreatable, and I have other relatives who are similarly afflicted. However, I have also seen what I presume to be the wet form of the condition in another elderly relative who in a very few months went from being able to drive a car to being unable to read or watch television. Such an experience is devastating and in a short space of time takes someone from being completely self-sufficient to being heavily dependent on care services. That certainly happened in this case. For such a person, photodynamic therapy early on would be a godsend: it would hugely improve quality of life and it would save scarce care resources.

I heard what Stewart Stevenson said about the cost of treatment; however, I was told that it comes to around £2 million a year for the whole of Scotland. That is a drop in the ocean as far as NHS budgets are concerned and it is even less when it is balanced against the savings in care services and benefits that could be made, not to mention in respect of lost productivity of people who are at the younger end of the condition's age spectrum. As the treatment has been approved and is recommended by NHS QIS, it should be funded—and quickly—right across Scotland, not just according to health board area.

We have an aging population and increasing numbers of people are experiencing handicaps and disabilities that are complications caused by longevity. Macular degeneration is a particularly unpleasant and inhibiting form of age-related disease and widespread availability of photodynamic treatment would make such a difference to those who have the treatable form of it.

You have one minute.

I do not need another minute, Presiding Officer; I have finished. I say merely that I am happy to support the motion.

John Swinburne (Central Scotland) (SSCUP):

I thank Kate Maclean for bringing this sensitive subject into the arena of the Parliament. I knew nothing about macular degeneration until I visited my optician at the beginning of January for the usual eye test. However, at one point I had to ask him, "What are you doing?" He said that he was checking for macular degeneration. "It's all right," he told me; "You're clear." When I asked him to explain the condition, he told me that people with macular degeneration were blind in the middle of their vision but still had peripheral vision. He said, "That's not too bad, but try and avoid wet macular degeneration if you can. Tell your friends." Apparently, in its severest form, people can go to bed being able to see and wake up blind the next morning. I was shattered by that fact, because I can think of nothing more terrible than losing the gift of sight.

Sight is probably one of the greatest gifts that we have. Recently, I visited a talking newspaper organisation in the Borders. Such organisations do great work for people who are visually impaired; for example, in that area, about 80 volunteers issue a weekly newspaper for visually impaired people. We should encourage such initiatives. Moreover, people are carrying out the work voluntarily and without financial help from anyone. At the same time, we hear about unallocated lottery funds, which could be pushed towards such initiatives and towards the particular problem that we are discussing.

All I can do is thank Kate Maclean again for raising this sensitive matter. People who do not have the gift of sight have my heartfelt sympathy and if we as politicians can do anything to help them, we must do so urgently.

The Deputy Minister for Health and Community Care (Mr Tom McCabe):

I join other members in congratulating Kate Maclean on securing this debate. As others have pointed out, because our population is growing older, treatment such as this is becoming more and more important.

Without doubt, age-related macular degeneration and the loss of sight it causes is one of the most distressing conditions facing elderly people in Scotland. I have listened with interest to the points that have been made in the debate and assure members that the Executive well understands the wish to ensure that everything is done to help people who are affected by the condition. I also welcome the opportunity the debate offers to stress that blindness is an issue that the Executive takes seriously. I will set out the specific steps that we are taking to tackle ARMD.

Blindness is a condition that strikes fear into all of us; blindness caused by ARMD is particularly distressing as it adds a frightening dimension to the potential vulnerability of old age. Any advance that tackles its cause is to be welcomed. Photodynamic therapy is one such welcome breakthrough. As numerous members have said, PDT was the subject of guidance from NICE last September. As with all NICE health technology assessments, the advice in the guidance was considered by NHS QIS and found to be as applicable here in Scotland as it is in England and Wales.

We require NHS Scotland to take account of NHS QIS advice and ensure that recommended treatments are provided to meet clinical need. The chief executive of NHS Scotland recently issued a letter to all NHS boards reminding them that that commitment applies to the NICE guidance. A copy of that letter is available in the Scottish Parliament information centre. I hope that that information will reassure members who have expressed concern about possible inconsistency across Scotland. The Executive will monitor how NHS boards pay attention to the guidance.

I do not diminish the considerable potential of PDT, but it is crucial at the outset to be clear that the NICE guidance clearly states that PDT does not cure blindness: it may slow or halt the damage done by some forms of ARMD. Anything that slows the rate at which vision is lost is to be welcomed.

As has been noted, ARMD is subdivided into dry and wet forms. The wet form has several classifications, but for our purposes we should be aware that NICE states that only the classic with no occult variety has been demonstrated to benefit from PDT.

What analysis has the Executive undertaken of the long-term savings that could be made and released as a result of early treatment by PDT for the small group of people who have the wet ARMD types to which the minister referred?

Mr McCabe:

The information that I just relayed to members suggests that around 350 people a year in Scotland could be expected to benefit from PDT. We have not done any specific research into how much money that would save. Our efforts are channelled into ensuring that the people who need the treatment get it.

NICE also noted that people with a slightly different manifestation of ARMD—predominantly classic with occult—might also benefit from PDT. However, NICE advised that they should receive treatment with PDT only as part of a new clinical study. Therefore, Scotland will take part in a UK-wide cohort study to establish the benefits of PDT for people who have classic with occult ARMD. That is likely to mean that a further 350 people a year will be treated with PDT.

Kate Maclean:

While we are waiting for the results of that study, which could take a considerable time, could not we explore methods of getting funding and treatment for the people who have wet ARMD—the minister said that there are 350, but the figures that I have say that there are 650—and who would benefit from the PDT that is available? If they had PDT, that would ensure that they would not have to wait until further studies are carried out on a form of ARMD that does not apply to them.

Mr McCabe:

I thought that I had made the distinction clear, but I will do so again. The chief executive of NHS Scotland has written to every NHS board in Scotland and made it clear that they should comply with the NICE guidance. I have also made it clear that the Executive will monitor compliance with the guidance. That should ensure that people who require the treatment receive it.

The technology is specialised, however, and there is a need for staff training. NICE made it quite clear that, in England and Wales, it would take some nine months to establish the new service. That allows for the installation of the equipment and the training of staff to read the necessary angiograms. Those factors also apply here in Scotland.

The work that we have done so far has demonstrated that there is both considerable clinical expertise and considerable enthusiasm in the ophthalmic community to make this treatment available across Scotland. Equipment and expertise are already available in Scotland and we are in the process of establishing the appropriate training and co-ordination to ensure that treatment is available when it is required.

We recognise that the treatment is important, but it is also important to put some perspective around the entire debate and the entire issue of blindness. There are some 37,000 people registered as blind or partially sighted in Scotland. As we expect that the number of people who will benefit from PDT in Scotland each year will be around 700, it is important that we also do all we can to help those who will not benefit from that new therapy. I want to make it clear that this is not a postcode issue. With the number of people involved, it will be a regional service. It will not be down to each individual health board to create services and specialisms in their area. That would not be the best use of resources, so of course it will be a regional service.

To help those outwith the treatment, we recently launched a document on community care services for people with a sensory impairment. It set out a number of recommendations for service delivery for people with sensory impairment, including the recommendation that, by April 2006, every social work or social care facility should have staff who are able to meet the basic communication needs of a person with sensory impairment. It also recommended that a short-life working group be established to produce common sensory impairment service standards, which will be completed for implementation by September 2005. I have also commissioned a review of the system for registering people as blind or partially sighted following a diagnosis of permanent and uncorrectable sight loss, to ensure that improvements are made to the system. Rehabilitation workers have been identified as a key group of people who assist visually impaired people to adjust to loss of sight and to live as independently as possible.

I hope that what I have said has reassured colleagues that blindness is an issue that the Executive takes seriously. Our work on community care services for people with a sensory impairment will lead to real service improvements.

Although PDT is not a cure for blindness in general, it can slow the progress of a specific sub-type of age-related blindness. Work is already under way to implement the NICE guidance and to ensure that eligible patients across Scotland benefit from the introduction of this exciting new technology.

Meeting closed at 17:48.