HIV/AIDS

Lord Black of Brentwood Excerpts

Thursday 5th March 2015 Grand Committee

[Lord Black of Brentwood (Con)]

My Lords, like other noble Lords, I am indebted to my noble friend Lord Fowler for securing this debate today and for giving us, as he said, what is probably the last opportunity before Dissolution to discuss the issue of HIV and AIDS.

It is therefore a fitting moment to pay him the warmest of tributes, as other noble Lords have done, for everything that he has done throughout this Parliament to keep this subject right up at the top of the political agenda, focusing on not just the impact of HIV and AIDS in the United Kingdom but on the terrible scourge of the epidemic in so much of the developing world, which the noble Lord, Lord Crisp, spoke about so eloquently just now. I only hope that at the end of the next Parliament in five years’ time, we will have seen more progress at home but also some of the incredibly important changes that need to take place in the developing world as a prerequisite to tackling HIV and AIDS. I absolutely agree with the noble Lord that the most crucial is the rapid decriminalisation of homosexuality in many Commonwealth countries. Criminalisation is not just a moral outrage; it is a public health disaster, and we must do everything that we can to stop it. I do not want to dwell on that subject today, but it would be good to hear from the Minister that the Government are continuing to put pressure on Commonwealth institutions to live up to their obligations under the Commonwealth charter.

I do not know whether it is a coincidence or whether my noble friend has engineered it this way, but this very week is the 30th anniversary of the approval of the first commercial HIV blood test on 2 March 1985. That was a seminal moment in the battle against what was then an unstoppable horror. Testing meant that the blood supply could essentially be freed of HIV. It also helped scientists and other public health officials to determine the extent of the epidemic. For the first time, it empowered individuals by allowing them to know their status and to protect their partners if they had been infected. What a change 30 years have made. Today, HIV testing is at an all-time high. As I understand it, in the United States, 86% of people who are infected know their status, although that means that an eye-watering 186,000 people in the United States of America do not know that they are infected.

Despite that success, however, rates of infection are still disturbingly high, as we have heard, with 6,000 people in the UK diagnosed in 2013. That figure crosses every age group. I am grateful to the Minister for providing information on that point in a Written Answer to me in the past few weeks. While the majority of people diagnosed in 2013 were in the 35 to 50 age group, 462 new cases of HIV among gay men were in those aged under 24 and 308 were in those aged over 50. Among heterosexuals, 105 women and 47 men were aged between 15 and 24 and 439 were over 50. This is still a virus that respects no boundary of age or background.

Despite the fact that an HIV diagnosis is no longer, as it was 30 years ago, a death sentence—indeed, those infected and properly treated will probably have a normal, healthy lifespan—problems, as we heard during the debate, remain. One is prevention, as my noble friend pointed out, and the other is ensuring ever-higher levels of testing. On prevention, there is a great deal of hope and optimism with the development of pre-exposure prophylaxis presenting incredibly exciting opportunities. Although it has been available in the US for some time, it is not yet here, but should, I believe, be available to all those at risk in the UK as soon as possible. As Yusef Azad at the National AIDS Trust—and I pay tribute to its work—put it to me, the very recent PROUD trial looking at the impact of pre-exposure prophylaxis here,

“is a prevention game-changer which we cannot afford to ignore. As a much needed addition to—not substitute for—condom use, its costs are modest when compared with the lifelong costs of treating someone with HIV if we fail to prevent their infection”.

He is absolutely right, and I hope that NHS England will heed those wise words. Action sooner rather than later will save not just lives, but money too. I support everything that my noble friend said. It must be Mickey Mouse economics to spend so much on treatment and so little on prevention.

Similarly, there has been much progress on testing, as we have heard, but the figures for late diagnosis—still above 40%—are shockingly high. To tackle that, I hope that, among other things, the NICE public health guidance recommending that high-prevalence local authorities commission HIV testing to be offered to all those admitted to a hospital and all those registering with a GP is implemented soon. The Government and Public Health England can play a powerful leadership role, and I would be grateful if the Minister could take the lead today in calling for such important initiatives to be implemented.

Of course, key to both testing and prevention is the ongoing problem of stigma. The National AIDS Trust survey on public attitudes published in December last year still makes very depressing reading. If anything, public knowledge and attitudes seem to be deteriorating, and we need to take action to reverse that, otherwise, all the good work on testing and prevention could be in vain. This is, of course, a matter that goes well beyond central government, but local government, the NHS and schools all have a role to play. The Government can, again, take a lead, and I know that the Minister, who has done so much to help in this area in the past, will take up that challenge and this afternoon energise all those involved to redouble their efforts to tackle stigma.

I am conscious that there are no noble Baronesses speaking this afternoon, undoubtedly because of the clash with the debate on International Women’s Day, but I want to say a word or two about the special issues still faced by women with HIV and to cast a quick glance beyond our own shores to where the situation for people with HIV is still incredibly difficult and in some cases horrific. I commend an excellent report published in the past few months by the Salamander Trust, which last summer conducted a global survey on the sexual and reproductive health and human rights of women living with HIV. Of those who responded in a survey that took place in 94 countries, a shocking 89% reported that they had experienced violence or fear of violence since or because of their diagnosis— in their homes, in their communities and even, most appallingly of all, in healthcare settings. Only 50% of respondents found their healthcare service providers to be well trained and knowledgeable about their condition. A significant number emphasised the challenges of poverty and the resulting strain that it places on mental as well as physical and sexual health. It is little wonder that 80% of respondents reported experiences of depression, shame, loneliness and feelings of rejection.

The report contains a wealth of recommendations about how to improve the specific condition of many women across the globe living with HIV. I hope that the Government will be prepared to support such recommendations. It is an initiative that the Commonwealth in particular could pursue. Progress may be slow—I think that we all understand that—but this is a tangible way in which we could help improve the lot of thousands of lonely, frightened and vulnerable people across the globe.

As so often in debates on this subject, there is much significant progress to applaud and great hope and optimism, but there are problems, too: in tackling stigma in particular. There are serious challenges beyond our shores in tackling the criminalisation of homosexuality, which is turbo-charging the HIV epidemic in much of the world, in dealing with the special problems faced by women with HIV and in ensuring access to healthcare for all who need it. As I said earlier, some of those issues will take time to tackle, but I hope that this debate will again spur us to redouble our efforts both here in the UK and in the wider world one day to bring to an end a horrific epidemic which has already claimed too many lives and will yet claim many more.

Young People: Suicide

Lord Black of Brentwood Excerpts

Thursday 27th February 2014 Grand Committee

[Lord Black of Brentwood (Con)]

My Lords, I join others in expressing gratitude to the noble and right reverend Lord for securing a debate on this tragic and important subject. I want to highlight one particular group of young people for whom suicide and attempted suicide is a very real issue. Gay boys and girls are vulnerable because they are struggling with how to come to terms with their sexual orientation and they can face an unacceptable degree of bullying because they are different from others in their school or local community.

I am indebted to Stonewall, as is so often the case in these debates, for providing me with some deeply disturbing figures. According to a study conducted for the organisation by Cambridge University two years ago, almost one in four lesbian, gay and bisexual young people say that they have tried to take their own lives. That is a truly shocking figure when compared with the estimate of 7% of young people in the general population. The same research showed that gay young people who are bullied are tragically much more likely to take their own lives. More than seven in 10 of those who suffer homophobic bullying contemplate suicide at some point, and half of them have symptoms consistent with clinical depression. Let me put these appalling figures into the human context. The Stonewall study highlights the case of a 15 year-old boy called Rabi, who reported as follows:

“The bullying went on for the whole five years of secondary school. I tried to fight back. I was depressed. I cut myself. I was on the verge of suicide. For one year, I came home every day crying into my mum’s arms”.

Rabi was lucky enough to be given the support that helped him get through it. One young man who did not was 14 year-old Essex schoolboy, Ayden Keenan-Olson, whose case has just been highlighted by my noble friend Lady Brinton. He was found dead in his bed by his father in Colchester almost exactly a year ago. His case was highlighted by the publication Pink News, which does an excellent job of campaigning in such crucial policy areas. As my noble friend said, Ayden, who had come out to his parents just a few months before his death, left two suicide notes outlining the homophobic and racist bullying he had experienced. He had been targeted with consistent violence, abuse and malicious allegations because of his sexuality and his Japanese origins.

Although huge strides have been made in recent years in the battle for equality for gay men and women, it is a sad fact that there is still too much homophobic bullying in some schools, much of it now done through the internet, which can all too often lead to tragedy. There are too many Aydens, but there need not be. There is a great deal that schools can do to turn the tide. Much of it is set out in Stonewall’s excellent “Education for All” packs, including schools having clear and promoted policies on tackling homophobic bullying, whether it is physical bullying or cyberbullying. It makes clear that school staff should be trained to spot problems and to provide young people with information and support to keep them safe, signposting them in the direction of professional help when they need it. It means that school nurses should make clear that young people can talk to them in confidence about their sexual orientation, and be aware, too, of the particular mental health issues they may face, intervening as necessary to support them. Local health services have a role to play in working alongside schools to focus on early intervention, a subject mentioned by my noble friend Lady Brinton, which is absolutely crucial because early intervention is the sort of thing that might have saved the life of a young man like Ayden. Local health services can also help train their staff on the particular issues that young gay boys and girls might face as they struggle with their identity.

When we passed the Marriage (Same Sex Couples) Act last year, with a huge majority in this House, many may have believed that the dark shadow of inequality, prejudice and intolerance was now behind us. It is a deeply regrettable fact that in too many communities those basest of human instincts are alive and well and, as we have heard, have deadly consequences. It will take many years to tackle that, but in the meantime we can and should do a great deal more to protect those who we know are most vulnerable—young people who are struggling because they are different. Will the Minister restate the Government’s strong commitment to tackling this issue and encouraging all schools and local health services to ensure that they have the policies and procedures in place to spot trouble, intervene where they can, and provide the support that too many frightened, lonely young people desperately need?

NHS: Keogh Review

Lord Black of Brentwood Excerpts

Tuesday 16th July 2013 Lords Chamber

[Earl Howe]

The noble Lord makes an extremely important point. Those hospitals that I have visited where the standard of care is manifestly excellent have all had nurse leaders at board level whose responsibility it is to make the quality of nursing care absolutely centre stage at every board meeting and to transmit to every nurse in that hospital what good quality care looks like. Whether we call that person a matron or not is perhaps a matter that we can discuss at leisure—but the point that the noble Lord makes is extremely valid.

[Lord Black of Brentwood]

My Lords, I agree with my noble friend very strongly that failure should never be a consequence-free zone. But would he agree that, for far too long, the bitter truth is that it was a consequence-free zone? My late mother was treated in the Basildon and Thurrock University Hospitals NHS Foundation Trust in 2008 and 2009, on two occasions. On the first occasion, she sustained an injury after being left on the toilet for 40 minutes, from which she never recovered. On the second occasion, having been admitted suffering from a heart attack, she was shifted between wards three times in 24 hours. I wrote to the chief executive and he wrote back to me with 11 separate apologies. I wrote back to him saying that apologies were no good unless something happened.

I agree with the noble Baroness, Lady Jolly, that boards must have responsibility. Would my noble friend agree that they must have responsibility for scrutinising data and, above all, looking at complaints, otherwise nothing will ever change?

[Earl Howe]

My Lords, the historical culture of that particular trust has been focused on financial targets, and the tone from the top now needs to focus on improving quality and long-term sustainability. There is a string of issues identified in Sir Bruce’s review, all of them urgent. The good news is that I know that the current management is addressing those issues. I am naturally sorry to hear of the personal experiences of my noble friend’s family.

Care Bill [HL]

Lord Black of Brentwood Excerpts

Wednesday 3rd July 2013 Lords Chamber

[Baroness Pitkeathley]

My Lords, I apologise to the noble Baroness, Lady Campbell. I was so eager to follow the noble Baroness, Lady Jolly, on Amendment 79, and I did not know that she was wishing to speak.

I particularly wanted to follow the noble Baroness, Lady Jolly, in speaking in support of Amendment 79, on which my name appears as well as hers and the noble Lord, Lord Warner, who was unavoidably absent today, and indeed the noble and learned Lord, Lord Mackay.

It will not have escaped the notice of the Committee that we are all members of the Joint Select Committee which scrutinised this Bill. We were very keen to have in Clause 1 the recommendation that when making regulations or issuing guidance, the Secretary of State must have regard to these principles, as must as local authorities.

We put this issue to the Secretary of State and the Minister as the noble Baroness, Lady Jolly, has mentioned, when they appeared before the Joint Committee. They appeared to be very favourably inclined towards it. We were very hopeful that this would be in the Bill. The civil servants were clearly less eager about this, so perhaps it was no surprise that it did not appear. However, we took away from the evidence session the understanding that Ministers were sympathetic to the idea. That is one of the reasons this amendment has been tabled.

Sadly, the official line now seems to be that used by the Minister at Second Reading on 21 May, when he said that,

“the well-being principle in Clause 1 is intended to apply at an individual level, when a local authority makes a decision. This individual focus on the specific well-being and outcomes for that person is at the heart of the way that the Bill has been drafted. It is not intended to apply in a more general way. Given that we do not think it would be appropriate for the Secretary of State to be subject to the same duty, the Secretary of State does not make decisions at the individual level”.—[Official Report, 21/5/13; col. 829.]

Nobody could disagree with the first part of that statement but the second part simply does not follow on, because the Secretary of State’s actions in regulations and guidance determine to a great extent whether local authorities can discharge their duties under Clause 1.

If the Secretary of State asks so much of local authorities without adequate funding being available, they will simply be unable to discharge their duty. Only if the Secretary of State is bound by the same duty as the local authorities can there be any realistic chance that, over time, he will avoid making unreasonable demands of local authorities in the instructions that he gives them. The way that the Bill is drafted, the Secretary of State can simply pass the buck back to the local authorities, which differs from his position in relation to the NHS, where he is required to act in accordance with the NHS Constitution. If it was the Secretary of State’s intention, as he seemed to be saying in his oral evidence to the Joint Committee, to support the well-being principle in practical terms, this amendment should be acceptable, and I hope it will be.

[Lord Black of Brentwood]

My Lords, I shall speak to Amendments 78E, 87K and 88J, which are in my name. They raise the issue of companion animals—mostly cats, but dogs as well—and the positive role that they can play in the care of elderly, vulnerable and sick people, whose welfare is at the heart of the Bill. I should declare an interest as president of the Printing Charity, as it runs two homes providing sheltered accommodation and financial support and care for people from the printing industry.

Amendment 78E includes the positive contribution of a companion animal to an individual’s well-being in the list of factors to which a local authority must have particular regard in exercising its functions under Part 1. Amendment 87K includes identifying the role of companion animals in the care and support of an individual when a local authority is assessing their needs and those outcomes that an individual wishes to achieve in day-to-day life. Finally, Amendment 88J deals with the issue of companion animals in regulations under Clauses 9 and 10. Taken together, their purpose is to ensure that the benefit which companion animals can provide to well-being, a subject not currently covered in the Bill, is not overlooked by those implementing and interpreting it.

It is estimated that 25% of people over retirement age own one or more pets. For the elderly and vulnerable, the companionship that cats and dogs can bring cannot be overstated. Academic research over many years has documented this. One study by Brooks, Rogers and others, published just last year, highlighted the emotional and practical impact that companion animals offer. Noting that they provide unconditional support and love, as we all know, the study concluded that,

“the policy implications of this study suggest that pets might usefully feature alongside consideration of the usual support systems associated with the management of long-term conditions and in planning how needs might be ... creatively met”.

That, of course, is precisely what this Bill is designed for and what these amendments are crafted to deliver.

Cats in particular can help those who are vulnerable, through age or health, in three ways. First, there is a powerful body of evidence about the contribution of cats to physical health. According to one study published recently in the Journal of Vascular & Interventional Neurology—not a magazine I look at frequently, but it is there—they contribute to a reduction of fatal cardiovascular disease by around 30%.

Secondly, the ownership of a cat brings positive benefits to an individual’s mental health. Research conducted in 2011 for Cats Protection and the Mental Health Foundation among people with a mental health problem found that 76% of people who owned a cat felt they could cope with everyday life much better as a result, and that 87% said it had a positive impact on their well-being. Cats can be especially helpful for depression during the winter period—a particularly important point since, as we now know, this goes on for about nine months of the year. As the Cinnamon Trust, which works tirelessly to support the elderly and their pets, summarises it:

“Pets have the ability to bring happiness and laughter and lift depression. Communication with other people is often easier when a pet is present for reassurance”.

Thirdly, cats make particularly suitable companion animals for those with chronic health problems, including those who are immobile or disabled. I know that this is a charge always made against cat lovers, so I am not forgetting our canine friends. I highlight, for instance, the excellent work of the innovative Dementia Dog Project, which helps to keep people in the early stages of dementia active and engaged with their local community, as well as providing a constant companion to reassure those suffering from dementia in new or unusual situations. This project in particular shows that a dog may aid a sufferer to stay on longer in his or her home—an important ambition that many noble Lords have highlighted in this debate—and may even slow the onset of this terrible disease.

Real-life examples of how cats promote well-being and play a vital role in an individual’s care appear regularly in the excellent magazine, The Cat, which is a publication I do look at regularly and is published by Cats Protection. In recent months, there have been stories about how their cats helped an owner to cope with epileptic seizures, helped a seven year-old boy to deal with the debilitating problem of selective mutism, and comforted a 17 year-old girl confined to bed with the life-long incurable condition of Behçet’s syndrome. One particularly moving story related to how a visit from a cat to an elderly lady who was in a hospital ward and suffering from severe dementia got her to speak for the first time in three months.

There are many other examples. Indeed, I think of the experience of my own mother. In the last year of her life, she was widowed, immobile and more or less housebound. Her faithful cat, Toby, was her constant companion. She talked to him, laughed with him and moaned and shouted at him; he cared for her in return. Indeed, he lay on her bed as she died. That companionship is a priceless gift, which this legislation should protect. Let me explain briefly how these amendments might help, as I ask my noble friend the Minister to consider these three issues.

First, one of the many problems that those who are elderly with a pet can face is how to care for it when they go into a care home. There are some amazing care and retirement homes which welcome pets but others do not have a policy on them, which can cause anxiety and distress to those who need to enter one. For a person to have to give up what might be their sole companion is a tragedy for an owner and for the pet. It also adds to the growing burden on many animal charities, which are having to take increasing numbers of abandoned pets as economic problems have bitten hard in so many families.

Secondly, it would encourage those at the front line of care—GPs, in other words—to become aware of the role of a pet in an individual’s life. Many GP surgeries include in their information about the over-75s whether a companion animal forms part of the client’s household. The signal sent from amending the Bill would encourage many more GPs and clinical commissioning groups to ensure that this important information is routinely collected for all age groups, including the elderly.

Finally, the Bill needs to be drafted widely enough in its definitions of well-being and needs assessments to allow for money, whether budgets or direct payments, to be used where necessary to support an individual who perhaps wishes to retain a pet but is having problems due to health. Professional pet-sitting or feeding may be needed when an individual is hospitalised and where there are no friends or family to help. Knowing that a pet is being cared for can help encourage otherwise reluctant individuals to go into hospital for treatment and relieve anxiety. Equally, in cases where a care assessment shows that a companion animal would bring individual health benefits, money may be needed to help an individual obtain a companion animal. There are many examples of such budget programmes in other countries—most notably, I think, in Australia—where health and local authority budgets are pooled to provide companion animal support programmes. This principle should be embedded in regulation and statutory guidance for all relevant implementing bodies.

Most importantly of all, these amendments would ensure that the role of companion animals is given proper recognition and protection through an individual’s care journey. Some may be too vulnerable or frail to request that their beloved pet is taken into account when their care is planned. Others may need help or assistance in retaining their companion. Others still may not be aware of how a cat or a dog could improve their quality of life, ease their loneliness or help tackle a chronic disease. The amendments I have tabled would ensure that this happens as a matter of routine and is not left to chance in the way that, tragically, too often happens now.

[Baroness Masham of Ilton]

My Lords, today is bowel awareness day. I have been chairing a reception for bowel care this afternoon. Two of the speakers had disabilities: one with multiple sclerosis and one a tetraplegic, paralysed from the neck down. Both needed bowel care and they both said that dignity and respect were so important. Amendment 78ZA should therefore be a must for the Bill. There are many important amendments in this group, including those on well-being and companion animals, which I support. Happiness is something we should all aim for.

Health: Polymyalgia Rheumatica and Giant Cell Arteritis

Lord Black of Brentwood Excerpts

Wednesday 30th March 2011 Grand Committee

[Lord Black of Brentwood]

My Lords, I am greatly indebted to the noble Lord, Lord Wills, for securing this debate. Polymyalgia rheumatica, on which I want to concentrate this afternoon, is an illness about which I have deep personal feelings, for reasons that I shall explain in a moment, and I am enormously grateful for the opportunity to say a few words on it.

Polymyalgia rheumatica is a dreadful condition which, I believe, has for far too long been overlooked. In answer to a Question that I tabled at the end of last year, the Minister—and I was very grateful to him for his reply—said that there were not even any central records about how many people were afflicted by this illness. He helpfully cited a review from the British Medical Journal of April 2008, which reported that the incidence of polymyalgia rheumatica in people over the age of 50 was about 100 per 100,000.

This is not therefore a very common illness. It impacts mainly on older women over the age of 70, and often on people who are already ill with other conditions such as osteoporosis, which is itself a dreadful scourge. Perhaps that is why we pay so little attention to it. However, we should, because my belief is that this condition is really a potential killer—not because the symptoms overwhelm the patient but because the treatment can. In itself, this illness is self-limiting and will disappear within two to three years, but my fear is that far too many people never get to that point because the steroids that are at the moment the only realistic treatment for this illness so weaken them over that time period.

If your Lordships will indulge me, I should like to tell the Committee about my personal experience. My mother had suffered from osteoporosis for many years. It was, as is so often the case, diagnosed too late because of the failure of GPs to recognise the condition. However, that is a matter for another day. In the summer of 2008, she fell ill with the excruciating pain in the joints that is the classic hallmark of polymyalgia rheumatica. A specialist diagnosed the illness and began her on a course of treatment with a corticosteroid called Prednisolone.

Neither he, nor our GP, informed me or any of my mother's closest relatives about what the appalling consequences of prolonged treatment with this dreadful drug would be. We were told that this condition was easily manageable with these tablets. But we soon found out at first hand that it was not.

Within a month of being started on a high dose of this steroid, this normally slim lady put on a great deal of weight, placing burdens on her heart. Then, even more devastatingly, infections began in the chest and in the bladder. Each month a new one developed, with prolonged spells of hospitalisation, as her immune system was shredded by these steroids. Then injuries began in her legs as her skin became thinner and thinner. During one admission in Basildon hospital, she sustained an injury to her leg when a wheelchair was banged into her. The wound never healed.

Worse was to come. In what turned out to be her last Christmas, her personality began to change, as she became anxious, depressed, confused and irritable. It was not until I begged her doctors to reduce the high levels of Prednisolone that she regained her warm and ebullient personality. At the same time, these drugs took a blow torch to her osteoporosis, which rapidly worsened, causing her excruciating pain in her shoulders and legs.

Not long after, thanks no doubt to the weight she had gained and the trauma caused to her body, she suffered a heart attack. A few weeks after that she fell ill with her fourth chest infection in eight months and died in February 2009. Although it is not a killer disease, it was, I believe, polymyalgia which killed her. Not the illness but the only available treatment.

Since then, I have looked in much more depth as a lay person—I readily admit that I have no medical expertise—at the impact of Prednisolone, used over a prolonged period, on the human body. An article in the Nursing Times on 25 April 2006 set it out rather well. It mentioned that Cushing's syndrome, water retention, weight gain, acute risk of infection as a result of the attack on the immune system, gastric disturbance and peptic ulceration, skin changes and bruising, increased risk of osteoporosis—or a worsening in those that already have it—changes in mental state, inability to sleep, worsening arthritis and glaucoma and, of course, giant cell arteritis, are all side effects of the prolonged treatment that is necessary for polymyalgia. I know from first hand how devastating they can be. How many people have died? How many more will have to do so before we recognise this often overlooked condition and treat it as such?

I am not so naive as to believe that there are any easy answers to this question, but there are things which can and should be done. First, we should recognise that this is a life-threatening disease because of the way that it is currently treated. As an illness it can mean prolonged steroid use for up to three years, and that can be a death sentence in older people.

Secondly, I believe that GPs should be better trained to explain to polymyalgia sufferers and their relatives what the consequences of steroid use will be. There should be proper advice on how to mitigate those effects, including diet changes, the use of prophylactic antibiotics, or a pneumococcal vaccine to help prevent lung infections, none of which was offered to my own mother.

Thirdly, corticosteroids such as Prednisolone should come with much more serious warnings than they do about their harmful consequences. Doctors should be obliged to keep the doses of it as low as possible, seeing their patients every week if necessary to try to monitor their impact and to cut them down when they can. Finally, there should be more research into what causes this illness and how it can be prevented. As an illness of those in their twilight years, in those who are already ill, it is often overlooked. But if we could get to the root causes of it, and help to try to prevent it, many thousands of lives would be lived more fully than they currently are.

I have been able to relate today the experience of just one family. There are many more out there for whom it is already too late. But let our gift for the next generation be to redouble our efforts to deal far more effectively and humanely than we ever have before with this horrible illness.