BSE and New Variant CJD
The final item of business is the members' business debate on motion S1M-2592, in the name of Kenneth Macintosh, on the continuing presence of bovine spongiform encephalopathy and new variant Creutzfeldt-Jakob disease.
Motion debated,
That the Parliament notes the continuing presence of Bovine Spongiform Encephalopathy (BSE) in Scotland and the growing numbers of cases of new variant Creutzfeldt-Jakob Disease (CJD), including at least two cases in the parliamentary constituency of Eastwood; welcomes the setting up of a National Care Co-ordinator and CJD advice network, but acknowledges the devastating effects this disease can have on victims and their families and believes that the Scottish Executive should give its continuing support to those families affected by this terrible disease.
The purpose of the debate is simply to draw the Parliament's and the public's attention to the number of people in our community who die from variant CJD. For many of us, it is easy to assume that that most devastating of diseases has gone away, that that most tragic of episodes has been dealt with and that we can get on with normal life. However, we cannot and should not be complacent about variant CJD.
I welcome two of my constituents, Malcolm Tibbert and Graham Steel, who are in the public galleries. They have had to face up to the dreadful consequences of variant CJD. In Graham's case, the disease led to the death of his brother, Richard, and in Malcolm's case, it led to the death of his wife, Margaret. Malcolm Tibbert was the driving force behind today's debate. He convinced me of the need to remind all of us about the facts that surround variant CJD.
Malcolm Tibbert and his family were let down by the Government, the authorities and the system. They were let down by the agriculture system, which put economic confidence before public safety; they were let down by the health system, which failed to recognise and to respond effectively and appropriately to the family's needs; and they were let down by the justice system, which failed to bring the guilty to account and to prosecute those responsible for Margaret Tibbert's death.
I want to tell members the story in Malcolm's words. Margaret Tibbert first started to feel pins and needles in her hands and feet in March 1994. She started to lose her confidence and, upset and crying, she would call her husband at work. She developed a slight difficulty in walking distances and she was eventually admitted to the neurology department at Glasgow Southern general hospital. All the tests were inconclusive and she was sent home.
By the summer of 1994, Mrs Tibbert began to lose weight and feel increasingly tired. She was referred to a dietician and suspected of a psychological rather than a neurological illness. As her fatigue increased, she would often fall asleep after her evening meal and she began to have difficulty in writing. By the end of 1994, her speech started to become slurred and her short-term memory was impaired. She could no longer work and was prone to falls when left unattended.
Between January and April 1995, all those symptoms became worse and Margaret Tibbert went from using a walking stick to using a walking frame and, eventually, a wheelchair. The strain on the family was overwhelming. Malcolm Tibbert still believed that a diagnosis would be made and treatment started to restore his wife to fitness. However, at the end of two very demanding weeks of tests on Margaret, the neurologist first mentioned the possibility of CJD, although reserving judgment due to her age. It should be remembered that the first confirmed death from variant CJD had not occurred at that time, and sporadic CJD was an illness that affected older people. Nonetheless, the doctors confirmed to Malcolm that his wife had dementia and he faced the additional burden of coming to terms with the fact that she was terminally ill.
Margaret required 24-hour nursing care. Her memory continued to deteriorate, her speech became even more affected and she found it increasingly difficult to express herself. She once commented that she knew what she wanted to say but could not find the words. At that time she started to experience problems in swallowing her food and her husband was pressured into a decision concerning where her future care would be conducted. In July 1995, he took Margaret home. However, he soon found the strain of caring for somebody with a high-dependency illness, coupled with looking after their four-year-old son, too great. At the end of August 1995, Margaret was admitted to the local hospice for respite care.
In September 1995, a feeding tube was inserted into Margaret's stomach, as she was unable to swallow food and a liquid diet was recommended. By the end of the same month, she could no longer recognise her husband and was unable to communicate in any way. She suffered from chest infections that were slowly making her weaker and, eventually, on the morning of 5 January 1996, she died. She was 29 years old.
Margaret Tibbert's death was both avoidable and unnecessary. The majority of evidence supports the belief that Margaret Tibbert's death was caused by BSE-infected material entering the human food chain. Variant CJD stripped her of her dignity, and even now her family have to live with the trauma and distress of her death. Nevertheless, like the Tibbert family, we have moved on since 1996. Rigorous procedures for food handling and meat hygiene have been introduced and are overseen by the newly created Food Standards Agency Scotland, which is accountable to the Scottish Parliament. The Phillips inquiry, which reported in October 2000, exposed the errors of the past and focused our concern on the care of patients with variant CJD and support for their families.
National care co-ordinators have been established at the CJD surveillance unit in Edinburgh. They are assisted by an advice network that is available to support local services. Those moves have been welcomed, but more needs to be done. For example, further assistance is needed in the area of palliative care to sit alongside the help that is available from the national CJD surveillance unit. The Human BSE Foundation has established a scholarship for research into complementary palliative care, but more could be done. Health care workers also need support if they are to make the vital early diagnosis of the disease. Guidance for doctors and other professionals on identifying symptoms is crucial, as is training, so that they may assist families that are coping with variant CJD.
BSE also continues to be found in cattle in this country although, thankfully, it is becoming less frequent as a result of the control mechanisms that were put in place. There are expected to be around 200 cases this year, declining to around 100 in 2003. The over-30-months rule prevents older animals from entering the human food chain, which greatly reduces the risks. However, I would welcome an assurance from the minister that resources, which may have been diverted because of the foot-and-mouth outbreak, will now be redirected to the over-30-months cattle cull and other BSE control measures.
Another source of concern is the risk of person-to-person infection. That has been addressed through substantial investment in our health service to improve decontamination procedures. For example, tonsillectomies are now carried out with single-use surgical instruments. That should be welcomed in its own right and as part of a wider drive to reduce health care-associated infection.
However, it is perhaps most important to be reminded that this horrific disease is still with us. No one wants to cause alarm or panic, but we should not be complacent about the dangers to human health. To date, variant CJD has caused more than 100 deaths in Scotland and people are continuing to develop the disease.
Parliament is founded on the principles of openness and transparency. If the public can be kept aware of the facts about BSE and variant CJD, they will develop a greater understanding of the disease and its effect on families. I thank all my colleagues for supporting the motion.
Five members want to speak in the debate, so speeches should be about four to five minutes long. I call first Shona Robison, who will be followed by Mary Scanlon.
I begin by congratulating Kenneth Macintosh on securing the debate. I agree with him that the debate will remind Scotland about this devastating disease and its continuing presence. The debate's timing is good.
First, I want to comment on the setting-up of the national care co-ordinator and the CJD advice network. On the diagnosis of such a devastating illness, patients and carers require good information and advice and the necessary support. I understand that a part-time neurologist in the network team is available by telephone and provides a good level of medical advice to those who require it. A care package can be put in place for people with CJD. As Kenneth Macintosh outlined, the condition progresses, so the care that the person requires also progresses. It is important that the patient and carers get the required intensive care, particularly as the disease reaches its final stages. The CJD care team provides essential help to improve sufferers' quality of life. Nothing can take away the devastating effects of the illness, but we must be vigilant in ensuring that care is provided throughout Scotland, no matter where the sufferer lives.
The impact of the disease is all the more devastating given that, as we have heard, the illness was avoidable and unnecessary. The unacceptable practices of the past have left their legacy for the many affected people, many of whom are young and have been cut down in the prime of their life by CJD. I hope that we have learned the lessons of the past. Public health should never again be treated so recklessly. The legacy of BSE and CJD has had a major impact on trust in government. Governments are often no longer believed when they give assurances about public health issues. It will take a long time to re-establish that trust.
I am grateful to Kenneth Macintosh for raising the issue. Like many members in the past year, my attention has focused on foot-and-mouth disease. The debate is a worthy reminder of BSE and CJD.
That it has taken so long for so few cases to present with variant CJD might suggest that it is not likely that there will be as many sufferers as was feared at the outbreak's height, when incredible figures were quoted. I hesitate to say that, because the disease apparently has a long incubation period and young people are particularly vulnerable to the disease. In preparing for the debate, I found that it was difficult to be categorical about anything. We have a right to be concerned, because enormous uncertainty still exists and, as a Parliament, we must be well prepared.
New variant CJD was first defined in the UK in 1996 and it is widely assumed that eating BSE-infected food causes the disease. It is not clear whether the 100 or so cases that have been observed to date merely represent the tip of the iceberg or whether the number of people infected has peaked already and is likely to fall—I sincerely hope that the latter is the case.
In 1990, the national CJD surveillance unit was set up at the University of Edinburgh to monitor CJD in the UK. It was there that the new form of CJD was discovered in 1995. There are specific concerns in Scotland because the unit recently highlighted a possible north-south divide in the incidence of variant CJD. It has been noted that the number of cases per million people is nearly twice as high in northern England and Scotland. A possible, but unproven, explanation for that divide is that the northern diet includes more of the food products that are assumed to be of higher risk, such as the mechanically recovered meat in sausages and burgers. I hope that the FSA will closely monitor practice in the production of those goods.
There are also concerns about imported meat and the means by which that meat is recovered. I have asked several parliamentary questions about that issue and I am aware that in the past few months BSE has been found in meat imported from Germany and other European Union countries. I take this opportunity to raise an issue that Ian Jenkins often raises. We should ensure that councils have adequately staffed their environmental health departments with sufficient numbers of environmental health officers to scrutinise both meat production and imported meat.
I would like to believe that all EU abattoirs and the meat that is produced in other countries are of the standard that we expect in Scotland. Although I have asked a number of questions on that subject, it seems to be difficult to get answers. Our representatives in Europe should ensure that meat that is imported into the EU reaches that standard.
I turn to a point made by Kenneth Macintosh about treatment of the underlying disease process and the need for more research. Any finding that may lead to effective treatment must be welcomed but, in the light of the experience of Kenneth Macintosh's constituent, we must do further work to establish whether drugs can provide effective treatment and to develop better assessment and diagnosis. That work must be carried out in the context of well-designed clinical trials.
The 1999 report on care and treatment recommended that all patients with a clinical diagnosis should be allocated a key worker to co-ordinate care for both the patient and the family. Assessments should be constantly and more rigorously updated to ensure that the care package suits the needs of patients who have a dramatically deteriorating condition.
I hope that the minister will respond to those points and that she will assure us that those steps are being taken in Scotland.
I, too, offer Kenneth Macintosh my congratulations on securing the debate and on his speech, which I found very moving. One cannot tell such a story well—well is the wrong word—but he told a terrible, true story with dignity.
Variant CJD is sinister and terrifying. I am a layman in health matters—Mary Scanlon is a health spokesman, but I am not. From everything that I read and am told about variant CJD, I know that it is absolutely terrifying. As we know, something called a prion, which is an abnormal protein, gets into nerve cells, particularly in the brain, and manages to kill those cells and create holes in the brain.
What is so scary about the disease is the inevitability of a sufferer's fate. The point has been made that we must pursue research. How true that is. It does not matter whether one person or 100 die of variant CJD; it is an awful way to go.
Mention has been made of the carers and what it can be like to be in that seemingly no-hope situation. It is not as if they are combating a germ or a virus. What they are combating is worse as science does not know how to get at it.
Kenneth Macintosh spoke about the failure of putting economic confidence before public safety, which is what happened. The tale is an awful one of greed, profit and speed. It is a tale of casting safety to the winds and saying, "What does it matter?"
Mary Scanlon has rightly drawn out the fact that there is a north-south divide in the number of variant CJD cases. Perhaps people who eat pies and burgers are more likely to get the disease.
We still do not quite know where we are with the disease. We know how many people have died of it so far, but we do not know how many people have it. We do not know how many old people may be dying of variant CJD. There are more facts to be found out.
As has so rightly been pointed out, variant CJD strikes down people in the prime of their lives with so much of a beautiful life ahead of them. When they get it, that is it—they are looking over the cliff and there is no escape.
I hope that what I say is stronger than tea and sympathy. Let us do anything that we can do. We have done good work with the FSA. That is a huge move in the right direction. However, there is much more to be done. The minister has been asked whether, with foot-and-mouth disease having occupied our attention, we are still keeping an eye on BSE and CJD. Are we doing all we can? I am sure that we are, but we need the minister to confirm that.
I hope to God that we have learned a lesson about public health and that in Scotland, the United Kingdom and the world we will not again make the damned mistake of letting BSE get into the human food chain and into humans themselves, through bad practice in agriculture and slaughterhouses.
Like others, I congratulate Ken Macintosh on securing the debate.
In Scotland, 1999 was a year of celebration with the establishment of our Parliament. It was a year of new hopes and aspirations for Scotland's future. However, for one family in my constituency, it was a year of grief and tragedy: 1999 was the year that Marie and James McGivern lost their daughter, Donna Marie, who was one of the youngest victims of variant CJD. The family want me to mention Donna Marie and some of their experiences in the debate.
Before she became ill, Donna Marie was a bright, caring young girl who loved music. She had won a number of medals for athletics and for Irish dancing. In the summer of 1996, at the age of just 14, Donna Marie began to experience health problems. She complained first of double vision, followed a few months later by pains in her legs and headaches. Her family also noticed that she seemed to be undergoing a personality change, with, for example, uncharacteristic violent outbursts.
As Donna Marie's health deteriorated, her parents gave up their jobs and dedicated their time to caring for her. Looking after a young person whose condition will not improve, but will in fact deteriorate, is heartbreaking for any parent. It is also physically and emotionally straining on carers. It is crucial that support services exist to help people in such circumstances. The BSE inquiry noted that standards of care and support for sufferers of CJD and their carers varied widely and that improvements were needed in diagnosis and in advice and assistance for carers, including a co-ordinated care package.
In the hope of responding more quickly to the needs of people with CJD, the Government provided a much welcomed sum of money to help improve care. I understand that that package is accessed via the national care co-ordinator for CJD and health authorities, but much more emphasis needs to be placed on partnership working and opening up the channels of communication between the health service, social services and the CJD care package.
I hope that the Government's measures prevent anyone else from having to go through the frustration experienced by the McGivern family when, for example, they tried to access a wheelchair for Donna Marie. They went to their general practitioner, who told them that there was a waiting list, which they could join. The Red Cross supplied a wheelchair but, unfortunately, it was too small. A local special-needs school then gave Donna Marie a wheelchair, but it fell apart because it was simply not suitable for anyone suffering from sporadic limb movements. Eventually, a suitable wheelchair was found, but by that time Donna Marie was far too ill to use it.
CJD is a devastating disease, not only for those who suffer from it but for their relatives and carers. Research into its cause, diagnosis and treatment goes on, but people continue to suffer from it, as we have heard from other members. According to an article in the "British Medical Journal" of September last year, the rate of contracting variant CJD has been found to be twice as high in Scotland and the north of England as elsewhere in Britain.
It is vital that a high quality of care is provided for all the people who are affected by this fatal and debilitating disease so that some of the burden placed on their families and carers can be relieved. A co-ordinated care package is fundamental to ensuring that other families do not have to go through the experiences of my constituents, the McGivern family.
I am very pleased to associate myself with Ken Macintosh's motion.
First, I apologise on behalf of Shona Robison, who has had to leave to chair another meeting. She intends no discourtesy by her absence.
I assure Graham and Malcolm, who are in the public gallery, that I am quite certain that all members of the Parliament will read this debate and take on board the messages from it, and that the debate and the Official Report of it will be referred to and read with interest well beyond the Scottish Parliament. I warmly congratulate Ken Macintosh on giving us the opportunity to throw a little further light into some of the dark corners of a horrendous disease.
I want to speak, relatively briefly, about two areas: agriculture, from which, essentially, the disease sprang; and, for slightly longer, about the very real human impact that such diseases have, not just on the sufferer, but on the families of sufferers.
Science let down agriculture, which let down the wider community. An unjustified enthusiasm for new ways of feeding our beasts and an unjustified optimism about the consequences of scientific advances led us into a trap. We can understand it to some extent: the related disease in sheep, scrapie—which is very much akin to BSE—had been with us for hundreds of years. Many people had eaten scrapie-infected animals without apparent consequence. I stress "apparent consequence"—our diagnostic skills were not as great a hundred years ago as they are now, and we cannot be certain. It is precisely that lack of certainty that lies at the root of much of the distress of the families of sufferers, or of people who fear that they may be sufferers. We must exercise considerable caution in future.
We note that although the incidence of BSE in our herds is declining—which is good—the disease is not yet eliminated. We must also note that its incidence in France and other countries from which we import meat is rising. There is also considerable concern in many people's minds that the control of food imports is inadequate, and that much meat is bypassing the system. I would be interested to hear what can be done about that.
Between school and university, I worked for less than a year—although very usefully—in a psychiatric hospital. A number of the patients whom I, along with others, looked after suffered from similarly debilitating conditions that isolated them from their families and the reality of the world. There is nothing more moving than approaching a patient who is left with a single reflex. Placing a spoon on their bottom lip would cause their mouth to open to allow them to be fed. There was nothing left: the body was simply a hulk that contained a physical manifestation of a previously loved and valued member of a family.
That is the experience of our friends in the gallery and of others elsewhere. It is an experience that we would in no circumstances wish to inflict on anyone else. We inflicted such an experience on these people accidentally, but it was avoidable. That is the hurt that families feel particularly strongly. If there is one thing that we can take out of what has happened, it is this. I hope that every sufferer has increased medical understanding of this condition and that measures to treat and prevent it will improve in future as a result. I have some confidence that that is the case. Our sympathy extends to all who will be affected in future and to those who have been affected in the past. Once again, I congratulate Ken Macintosh on giving us the opportunity to discuss this issue.
I, too, congratulate Ken Macintosh on his success in securing today's debate.
As we have heard, variant CJD is an especially distressing condition. No one can fail to be moved by the deterioration in mind and body of those who suffer from it. Neither can anyone fail to appreciate the grief of families and carers at seeing a loved one, often in their prime, being afflicted in such a way. It is therefore fitting that at the outset I pay tribute to all those who have cared so feelingly and diligently for sons, daughters, other family members or friends who have suffered from this appalling disease.
We also applaud the work of organisations such as the Human BSE Foundation, which were born out of adversity and real experience and seek energetically to secure the standards of care and support that sufferers fully deserve.
Bearing in mind the time available, I will try to describe as best I can the point that we have reached in tackling the spread of the disease and what is being done to respond to the needs of sufferers. I hope that Kenneth Macintosh will recognise that I will not comment on individual cases.
There have been 116 cases of variant CJD in the UK, of which 18 have been in Scotland. We hope that there will be no more, but realistically we must expect more. The exact number of cases cannot be predicted, so I will not speculate about that, but as Mary Scanlon said, we must be prepared.
Although there are various recognised forms of CJD, variant CJD has caused the greatest public concern because scientific evidence to date suggests that the most probable reason for the appearance of this new disease is transmission to humans of the agent that causes BSE through the consumption of contaminated meat.
Extensive controls are now in place to eradicate BSE from the Scottish cattle herd and the disease is in sharp decline. Last year there were 24 confirmed clinical cases, compared with 36 cases in 2000, 37 in 1999 and 85 in 1998. So far this year, there has been one reported clinical case of BSE in Scotland. The peak year for BSE in Scotland was 1993, when 2,208 clinical cases were confirmed. Because of the long incubation period associated with the disease—as with variant CJD—it will take some time before BSE in cattle drops to minute levels.
The Executive also has in place an active surveillance system for BSE, focusing on high-risk cattle—adult bovines found dead or killed on farm for welfare reasons—as is required by European legislation. Active surveillance procedures were first introduced on 1 July 2001 and a further 28 BSE cases were identified last year. I understand that current levels of BSE in Scotland compare favourably with those in other parts of Europe.
The Food Standards Agency, to which members have referred, oversees the range of controls that are in place under national and European legislation to prevent BSE infectivity from reaching consumers through meat, meat products and other foods.
The major safeguard in the UK since 1996 has been the over-30-months rule. In addition, for animals being used for food, the tissues most likely to carry any BSE infectivity—principally the brain and spinal cord—have to be removed in abattoirs as specified risk material. A similar requirement to remove SRM from sheep applies on a precautionary basis. We are taking on board the lessons of the past. A high level of protection is vital and those safeguards are enforced by having staff from the Meat Hygiene Service present day by day in all abattoirs.
We have also moved to improve surveillance of CJD and variant CJD, as well as to enhance the care and support provided to sufferers, their families and carers. The incidence of CJD is monitored in the UK by the national CJD surveillance unit, which is based at the Edinburgh western general hospital. The unit brings together a team of clinical neurologists, neuropathologists and scientists specialising in the investigation of the disease. Along with the UK Government, we have provided more funding to enable an increase in personnel and resources at the unit to aid the early identification of variant CJD cases, carry out further investigations into the disease and provide care co-ordination for patients. It is essential that health, social care and other resources are fully integrated—as Elaine Smith suggested—to ensure optimum and focused benefit for patients. To assist the process, two national care co-ordinators have been appointed at the unit.
Resources have also been made available to provide an extra tier of support for patients and their carers—in addition to that already supplied through existing health and community care arrangements. That allows, for example, for the rental of a stair lift or the hire of specialised, adapted transportation aimed at increasing the patient's comfort and quality of life.
A no-fault compensation scheme has been introduced, under which substantial payments to the majority of victims or their families have already been made, and guidance has been issued in the field to ensure that health care professionals are fully aware of the special needs of patients with variant CJD. The thrust of the guidance is to provide fast, sensitive care locally, backed up with national support and expertise. Action has been taken on the prevention front as well. In the past three years the Executive has introduced measures to reduce the potential risk of variant CJD being spread through health care procedures.
But the debate is not only about what the Executive is doing. I have already referred to the work of organisations such as the Human BSE Foundation to raise awareness of variant CJD and its implications and to respond to the particular needs of variant CJD sufferers and their families. Such organisations provide much needed support to the victims and their families—in many cases based on their personal experience of caring for loved ones afflicted by the disease.
I hope that what I have said today will reassure Kenneth Macintosh and others who have taken part in the debate that the Executive is taking action to improve the care and support available to the victims of this devastating condition.
I conclude by reiterating my sympathy for those who have the disease and my admiration for the courage and dedication of the many committed families and carers who devote themselves unstintingly to their care and support.
Meeting closed at 17:44.