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Dry Macular Degeneration

Volume 473: debated on Wednesday 12 March 2008

It is delightful to serve under your careful stewardship this morning, Mr. Bercow.

This debate is about dry macular degeneration. Macular degeneration is the leading cause of vision loss in people over 65 in the UK. Research published in the British Journal of Ophthalmology in 2002 suggested that more than 200,000 people had a condition severe enough to be registered but many more had a less severe form of the disease. In an article in The Times in 2007, Dr. Thomas Stuttaford, an industry expert, said that macular degeneration affected more than 500,000 people in the UK. That is a significant number, and, with an ageing population, it is probably increasing.

Tom Bembridge, the chief executive of the Macular Disease Society, said during a discussion that I had with him recently that one of the most pressing issues is the referral time for those diagnosed with low-vision problems. When someone leaves a clinic, it takes some time for the services that they need to kick in, and there is a particular lack of a joined-up approach between social services and the national health service in respect of this disease. I shall expand on that later.

Tom Bembridge queries what the Government are doing to ensure that there is no postcode lottery for provisional support following a low-vision assessment. There are flagship projects in Camden and Islington, and there has been a project pilot in Gateshead to attempt a joined-up approach by the NHS and social services. The Macular Disease Society would like them to be replicated throughout the country. Part of the problem with equipment is that its supply is down to social services. It has been identified that this major problem falls into the gap between health and social provision, and there is a great belief that there should be a more joined-up approach by the NHS and the Department of Health.

Dry macular degeneration is the most common form of the disease. It occurs when a build-up of waste material and a lack of proper nutrition cause a gradual deterioration of the macula, usually over many years. Dry macular degeneration accounts for 80 per cent. of cases. Wet macular degeneration is less common and occurs when tiny new abnormal blood vessels begin to grow behind the retina towards the macula. They usually leak blood and fluid, damaging the macula and causing a more rapid loss of central vision. That form of the disease has received much high-profile coverage in the national and local press because sufferers face a postcode lottery for funding for the latest drug treatments to ease their symptoms.

I do not wish to dwell on that form of the condition because many people have championed the cause, although I would like to relate that my surgery—I am sure that it is not the only one—has several sad cases of people with wet macular degeneration in one eye and dry macular degeneration in the other eye who have been told that they need to go blind before they can access treatment for the wet condition. Of course, there is the awful time bomb of the wet eye going first and those people being left with only the untreatable dry eye. It is unacceptable to withhold treatment for this preventable form of blindness.

However, I want to focus on those with dry macular degeneration. They form the majority of sufferers but do not seem to be able to grab headlines in the way that wet macular suffers have recently. They face a world of increasing sightlessness. They form the majority of victims but get the least help.

Yesterday, I addressed the annual general meeting of the Macular Disease Society club in St. Albans. It is a very active group. It produces its own leaflets and literature and meets regularly. This large and active club was formed out of desperation; it was not a mutual coming together of like-minded souls. Ken Nutty MBE, the founder of the group, was himself diagnosed with dry macular degeneration, and his woeful experience was a common one: he received little advice on what to expect, doctors were not particularly well informed about his disease, and, after a considerable wait, social services gave him a few basic aids. He graphically describes to the group—he shares his experience with many other people—his depression and frustration at his situation. Unlike many people, he decided to put his anger into action and form a mutual support group.

The St. Albans macular degeneration group was formed in 2002 out of frustration at the lack of information and support. It is a catalyst to try to change the priorities for the treatment of MD sufferers. The group receives inquiries from fellow sufferers across the UK who are anxious to get information and advice. I brought letters with me from people in Andover and other areas of the country who do not have a support society such as the one that Ken has managed to offer in St. Albans. Those sufferers are anxious to get information but do not know where to turn.

In 2004, Mr. Nutty, the leader of the group, started lobbying the Government for a reduction in the cost of closed circuit television readers, and improved accessibility to them. They are not considered a luxury by the many people who suffer from dry macular degeneration. They are considered an aid that makes their life bearable and, indeed, enjoyable and pleasurable again. The rationale is that the readers restore the quality of life for macular degeneration patients, but they cost the individual more than £2,000 if they have to buy them.

Mr. Nutty is a delightful, feisty, articulate 90-year-old. I am sorry to say that yesterday was his last meeting. His sight has become so poor and his health so frail that he is now emigrating to Canada to live with his son for support. His legacy is the fact that he has galvanised many people into taking action to lobby on behalf of fellow sufferers. He is annoyed at what he believes is the complacency of this Government over their plight, and I agree with him.

I made notes of a conversation that I had with Mr. Nutty. His biggest gripe is that macular degeneration sufferers are provided with only a piece of hand-held magnifying glass-style equipment. I urge Ministers, if they have not used one, to try doing so. The device gives a very small field of vision that makes reading less of a pleasure, if not an impossibility, for many people. Ken feels that if sufferers were treated in the same way as those who have hearing problems or who need hip replacements, they would have better access to the best services.

Wet and dry sufferers receive little assistance until they are almost blind. They are then provided with simple hand-held magnifiers, and sometimes a piece of equipment akin to a pair of field glasses. Those things often break and are often useless. Ken and other sufferers think that CCTV-style cameras are needed. They help them to live more independent lives. Indeed, if Ken lived in France, Germany, Holland, Belgium, Denmark, Canada or one of many other countries, two thirds of the cost of such a unit—a black-and-white unit—would be paid for by the Government.

Ken has managed to campaign successfully for CCTV units to be put into libraries in Hertfordshire. Thanks to him, there are now 24 units across the constituencies of Hertfordshire MPs, including mine and that of my hon. Friend the Member for Hemel Hempstead (Mike Penning), who has attended this debate. Ken believes that he and other sufferers require such units. He feels that macular degeneration sufferers are being discriminated against, because some of the units are no more expensive than some digital hearing aids. In fact, if there were a bulk purchase or commitment to the devices, the cost would drop.

Ken’s other campaign has been to lobby the Government on the waiting times between being diagnosed and receiving assessment and support from social services. The situation was confirmed by the Macular Disease Society. In fact, a worrying case was outlined to me in the meeting yesterday. A chap who was diagnosed with macular degeneration received very little advice but was savvy enough to look up his condition on the internet. He realised that he had a brief opportunity to get laser treatment. Unfortunately, he had to sell his car to access the treatment, only to be offered a treatment slot some several months later, by which time the golden window of opportunity for treatment for wet would be missed.

The lag between diagnosis and assessment for both sorts of macular degeneration is woeful. A few years ago, some patients were waiting up to nine months to be seen by social services. Some of the waiting times have decreased, but outcomes are still patchy.

Macular degeneration should concern all of us. Hon. Members may note that I am wearing glasses today—age-related sight problems. Many of us will be grabbing them on and off as we grow older. None of us seem to think about the fact that we will be stuck with ineffective readers. As the population ages, there will be even more people suffering from macular degeneration. Ken started his club in 2002 with just 17 local members. There are now 97 on his books, and he regularly has 60-plus at his meetings, as he did yesterday.

Macular degeneration is not only a personal tragedy, but has cost implications for the health service if it is not properly managed. The Audit Commission noted that 190,000 blind and partially sighted people were admitted to hospital in 1999 as a result of falls. The cost to the NHS was estimated at £270 million. Given that huge cost, one would think that it would be vital to ensure that as much as possible is done to assist with sight, but an investigation into equipment for disabled people in England and Wales carried out by the Audit Commission in 2000 found a huge variety in provision.

The Audit Commission ordered a full review and reorganisation of community equipment services, but despite that and other calls for improvements from, among others, the Association of Directors of Social Services, evidence shows that there are still major problems with the current system. Those with sight loss face increasing difficulties gaining access to essential items of equipment, including unavailability of items due to funding restrictions, long waiting periods before items are even delivered and a lack of information and training about how to make the best use of equipment when it is eventually provided.

To establish the progress made by implementing the Audit Commission’s recommendations, the Royal National Institute of Blind People carried out research in 2005 into the experiences of 500 blind and partially sighted people. The evidence from the RNIB’s research shows that blind and partially sighted people are being failed by local authorities at every stage of the process, from the initial referral for assessment to the delivery of essential equipment. The research also shows that access to even the most basic items is often denied and items such as CCTV monitors or scanners, which are vital for communication, are rarely provided by local authorities. I urge the Minister to dwell on that failure and specifically to address in his reply the fact that delivering such services through social services, which are given the job of providing such equipment, may not be the best approach.

I should like the Minister to consider a working partnership with social services, as has been demonstrated in other areas, to ensure proper delivery of such services to sufferers of dry macular degeneration, rather than just hoping that local areas are doing their best. As has patently been shown, they are not doing their best. Quite often, local authorities are doing what is cheapest.

I remind the Minister of the answer given to my hon. Friend the Member for Witney in 2004. David Cameron asked the Secretary of State for Health:

“what representations he has received on making magnifying equipment more easily available”—[Official Report, 14 September 2004; Vol. 424, c. 1495W.]

Order. I gently say to the hon. Lady that although she is right to refer to her then hon. Friend—now right hon. Friend—the Member for Witney (Mr. Cameron), she should not refer to him by name.

I take your guidance; I am sorry, Mr. Bercow.

The brief answer to the question asked by my right hon. Friend the Member for Witney stated that there had been several representations from hon. Members and the RNIB about

“the provision of closed circuit television (CCTV) readers to help visually impaired people with certain tasks”,

but

“The provision of CCTVs and other non-optical aids is a decision that lies with social services departments as they are considered to be aids to daily living. Being registered as visually impaired is not a pre-requisite to receiving services. Social services departments are responsible for assessing an individual's needs and for arranging services to meet those needs; this could include the provision of CCTV. However, hand-held, stand and spectacle-mounted magnifiers are easier to use, more widely available, more accessible and more cost effective.”

I assert, and Mr. Nutty and his group assert, that what is really driving the lack of adequate provision of CCTV monitors, which make life so much easier for people, is the cost element, which is leading to patchy provision. The then Minister of State, Department of Health, on behalf of the Secretary of State, went on to say:

“Encouragement is being given to hospital and social service departments to work more closely together, and perhaps operate a joint budget to allow more flexibility in funding equipment, and provide a wider range of services and equipment than has hitherto been available. The overall level of funding for aids to vision will, however, rest with primary care trusts and local councils.”—[Official Report, 14 September 2004; Vol. 424, c. 1495W-1496W.]

I should like the Minister to examine that statement, to see whether any encouragement was given and, perhaps, to give us an update on the impact of that encouragement, because I believe, as do macular degeneration sufferers, that little has changed since that answer was given.

In 2006, NHS South West managers spent nearly £400,000 on sculpture for mental health units and a further £100,000 on research into whether anybody liked it. That is an interesting use of public money. Mr. Nutty would say that better services could be provided for those who are struggling to see. Similarly, in 2003, NHS trusts all over the country introduced schemes to teach senior citizens the right way to wear slippers and now Hull is offering replacement of worn-out slippers with new, professionally fitted slippers. Hon. Members might ask how that is relevant to macular degeneration. As I said earlier, loss of sight means that many people fall and end up in hospital. Surely, giving people vision aids would be more useful than slippers. Of course, some would beg to differ. However, there is money in the system for some rather more dubious schemes that, perhaps, affect fewer people than are affected by going blind. In one of the more controversial examples, those who are troubled about losing their virginity can access a hymen-replacement repair: more than 24 of those were done in 2005-06. Those whose sex life is flagging due to age can access vacuum pump devices for erectile dysfunction—again, on the NHS.

I mentioned some of those schemes to Mr. Nutty and his group yesterday and they found them quite amusing, but they might say that although those things are not essential, they improve the quality of life. Mr. Nutty would argue that CCTV readers would improve the quality of the lives of dry macular degeneration sufferers, yet they are being denied them. Why can certain parts of the NHS give away funding to services that do not necessarily treat symptoms, although they aid or help people in their lives and relationships, while those with dry macular degeneration are given the cheapest and most accessible option?

I remind the Minister that, in 2006, the then Health Minister promised free trampolining and tango lessons for the unfit as part of the Government’s attempt to tackle obesity, which costs the NHS £7 billion a year. Perhaps the Minister will say today that a small amount of that money could go to the 500,000 sufferers of dry macular degeneration. If all the other causes that I have mentioned can attract funding and high-profile support, why are my constituents and those of other hon. Members left scrabbling around with equipment that is undoubtedly inferior?

The RNIB says that blind and partially sighted people are being poorly served by the community equipment system. There are pockets of good practice—only pockets but in most areas people are being given a very limited range of items that are almost always low cost. The need for essential equipment supporting independent living, communication and mobility is not being met. The RNIB believes, as I do, that that should be addressed as a matter of urgency. The provision of the right equipment at the right time, with the right training, would contribute towards the independence and quality of life of blind and partially sighted people. Surely, that is what the other examples that I have mentioned do.

The RNIB also believes that better provision would help prevent accidents and early entry into residential care, providing cost savings. It estimates that only 8 per cent. of visually impaired people have access to a CCTV unit—it is no wonder that such units do not come down significantly in price—and a quarter of those have had to pay for the item themselves.

In his response to Mr. Nutty’s campaign, the then Health Minister said:

“I have recently received many representations from people with macular degeneration…at present there is no allowance specifically for non-optical low vision aids within the money granted to NHS hospital trusts”.

Yet as I said earlier, there are supposed to be talks about having some sort of joint budgeting service. Again, I press the Minister to tell me what has happened to that aim. Mr. Nutty, accompanied by the Bishop of St. Albans, met the then Health Minister in 2005 and felt that, at that meeting, they had both received assurances that things would improve. However, things have not improved.

A survey by the RNIB in 2004-05 showed that of the 2 million people with sight loss, approximately 380,000 are registered blind or partially sighted. Many of those people are living in poverty. Some 73 per cent. of older people with sight loss surveyed by the RNIB lived in poverty—in line with the Government's definition of poverty—compared with 27 per cent. of all pensioners. Sight loss has many implications.

Economic deprivation is, equally, a major factor for those of employment age due to the high levels of unemployment among people with sight loss. Three out of four blind and partially sighted people of working age are not in paid employment. Isolation and lack of mobility is a major problem, with 76 per cent. of people with sight loss saying that they get out of the house never, rarely or less than before they lost their sight. If people do not visit those people and they cannot get out, then how much more miserable is it for them to try to occupy their time by reading a novel or a newspaper through a 3 in by 2 in spyglass?

Hospitals and social services struggle most. Twenty per cent. of hospitals and social services reported that patients waited between two and six months to be assessed for optical devices. Those results show that one person in 10 waits between two and six months before being assessed, and the picture is similar for assessments regarding home adaptations and daily living aids. We are failing people with dry macular degeneration.

Ken said yesterday, as he has said on many occasions, that his main passion is that

“these people”—

people who could be us—

“should not be left on their own to cope with just this hand-held magnifier.”

He said that some of those people are ladies aged 80-plus who lost their loved ones in the war. Many of them have paid into the system and feel that they get very little back. He wants to know,

“who is caring about them?”,

and wants me to convey the anger and frustration felt by his group. He wants me to ask the Minister today to say whether there will be improvements in future.

It is always a privilege to serve under your chairmanship, Mr. Bercow. I will not make the mistake of naming the leader of any political party—if the hon. Member for St. Albans (Anne Main) had simply said “the great leader”, she would have avoided the need for Mr. Bercow to intervene.

I congratulate the hon. Lady on securing the debate. I am sure that there is tremendous consensus from all parties on the points that she has made about the impact of dry macular degeneration on the quality of people’s lives. There is no doubt that we owe those who suffer from macular degeneration the best and that, too often, the system in some parts of the country does not respond to the challenges faced.

I will try to address the issues raised by the hon. Lady. My only gentle disagreement with her is that, although the Conservative party consistently talks about the importance of decentralisation and the local devolution of accountability and responsibility—both in terms of the management of public services and clinicians on the front line—Conservative Members come to the House and demand ministerial intervention from offices in Westminster and Whitehall. I gently say to her that to have that vision and view of how public services should operate nationally and then to give a slightly different impression to constituents is perhaps usual during parliamentary and constituency duties, but it is not entirely acceptable.

I accept that people such as Mr. Nutty deserve better and that they do a tremendous job in bringing together people who have similar difficulties. As well as medical intervention and the health service fulfilling its responsibilities, I believe in people who have similar challenges and conditions coming together to support one another and press public services. That is a very powerful way to achieve improvements and changes to public services. For example, you, Mr. Bercow, have been heavily involved in raising in the House the profile of the needs of disabled children and their families. As a consequence of the pressure from parents and families who are supported by parliamentarians, we have a much more progressive and advanced approach to meeting the needs of those families. The concept of mutual support and of people who use public services applying pressure to improve standards and quality is incredibly important.

The hon. Lady asked about community equipment services. Last year, we recognised that community equipment services in most parts of the country are not working well—they are not efficient and they do not give people speedy access to the equipment that they need. We believe that, if the systems that underpin the provision of community equipment are reorganised, available resources will be used more effectively and people will have speedier access to equipment. That is why we have started reforming the provision of community equipment and, in certain areas, have trialled a new model, called the retail model, which essentially attempts to simplify the whole process—from assessment to receiving community equipment. In the next few months, we hope to roll out that model throughout the country. The difficulty is that to impose a one-size-fits-all system on every local authority is simply not within our gift, so we have trialled best practice in simplifying the process—from assessment to delivering the equipment that people need. We believe that we have identified a model that does that. I would have hoped that the hon. Lady had asked the local authority—the local NHS—in her locality whether it intends to apply the principles of the retail community equipment model, so that people such as Mr. Nutty and those in a similar position with dry macular degeneration have access to the equipment that they need.

There is also a resource issue, and the hon. Lady asked all sorts of questions about the way in which NHS resources are deployed. The vast bulk of NHS resources have been deployed to create a situation in which waiting times and lists are at a record low. Some 90 per cent. of people who actually use the NHS, rather than simply reading about it, say that they have a high level of satisfaction with the service that they have received. There are more doctors and nurses than ever before. Advances have been made in the NHS, and the hon. Lady should therefore have been a little more balanced in her presentation. On her point about the use of resources, it is important to reform and reorganise the system to deal with the issue of community equipment and to make the best use of resources.

I accept that there must be prioritisation in the use of resources; as the Minister says, decisions have to be made. May I ask for his view on whether CCTVs should be made available?

We cannot have the following approach to the NHS: make the money available, allow local primary care trusts to make the right commissioning decisions based on their population needs and on non-negotiable national priorities, as well as allowing them to make the decisions about the needs of their local populations, and then stand up in the House and issue diktats on certain types of equipment. Having studied the new approach to community equipment, I really believe that, if local authorities and primary care trusts in every part of the country adopted the new model, it would free up considerable resources. I assume that those resources could then be used to purchase the equipment that people require for their individual needs. I am not a clinician, and although it would make me incredibly popular to make sweeping statements that every individual should have access to a particular type of equipment, I am not sure that it is appropriate for a Minister to make those kind of commitments.

If the quality of life of someone with dry macular degeneration would be clearly and considerably enhanced and improved as a consequence of having access to a certain piece of equipment, the local NHS should do everything possible to make that equipment available. However, I do not run every local primary care trust or local authority. We have to accept that we ask people in those organisations—leaders, managers and commissioners—to make difficult decisions.

I would just like a little clarity. The Minister says that, if the equipment would make people’s lives better, the local NHS trusts should make it available, but how does the funding work in relation to social services and providing the equipment?

The issue is about assessing each individual’s needs and considering what would make the most difference to enhancing that person’s quality of life—in this case, a person’s ability to live independently and have as full a life as possible. Obviously, if the determination is that a particular piece of equipment is required, the people making the decision have to consider the available resources and make the right decision.

Part of getting the best use of resources is having a far more joined-up approach between the local NHS and the local authority. I urge the hon. Lady to ask the local authority and the primary care trusts in her local community some hard questions not only about their processes, practices and policies as independent organisations, but about how they propose to have an integrated approach to meeting the needs of a whole range of groups—in this context, people with dry macular degeneration. She should challenge local commissioners in the local authority and primary care trust. Instead of asking Ministers in Westminster and Whitehall to issue central diktats, she should use her influence and her passion on this issue to ask fundamental questions of her local authority and primary care trust.

The hon. Lady obviously genuinely cares about the matter and has spent a lot of time with people who have articulated the difference that could be made to their quality of life. To support that, the Government have instituted a radical reform of the way in which community equipment is provided, and I hope that that will lead to change not just in a few local authorities and primary care trusts, but throughout the country. I believe that people with dry macular degeneration deserve the best possible support and the best quality of life. It is clear what we expect of local PCTs and authorities in the commissioning and provision of equipment.

Sitting suspended until Four o’clock.