(8 years, 6 months ago)
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Lord Greaves
To ask Her Majesty’s Government what action they are taking to combat Lyme disease and other tick-related illnesses.
Lord Greaves (LD)
My Lords, Lyme disease, or Lyme borreliosis, is an infectious disease transmitted to humans and other animals by bites from infected ticks, which are small blood-sucking arthropods related to spiders, and I can tell you that they are pretty nasty things. Ticks occur throughout the UK. They live on vegetation, particularly damp areas of vegetation such as bracken. They are found throughout the countryside but they also appear in towns—in parks and increasingly in suburban gardens—and they appear to be increasing in number.
Lyme disease can cause debilitating conditions, both acute and chronic. Basically, it can knock people out, producing symptoms similar to ME, migraines, neurological symptoms and persistent flu-like symptoms—symptoms both physical and mental—so it is pretty serious stuff. At the moment, the only test for Lyme disease is a blood test, which is not wholly reliable since it produces many false negatives. The levels of knowledge about this disease within the NHS are inadequate—some would say woefully inadequate.
I thank all noble Lords who have put their names down to speak. The noble Countess, Lady Mar, would very much have liked to be here, but she is poorly; I am sure that we all wish her well.
My interest in this disease came originally from outdoor activities—from a life spent mountaineering, walking and climbing. My interest in it was rekindled about a year ago by an article I read in Le Monde, which led me to put down a number of Written Questions last January, which I trust have been circulated by the Library. The point that I got from that article was that knowledge of Lyme disease is not only insufficient but very controversial in health services in different parts of the world. I pay tribute to Lyme Disease Action, a small charity, which provides assistance to people with Lyme symptoms and with Lyme disease. It also campaigns for improved services within the NHS and provides some extremely useful material, both in pamphlet form and on its website. Without its resources, I think we would be in an even more difficult position.
After I tabled this Question, I spent three weeks last June—skiving off, as they say—in the French Pyrenees, in the mountains. One morning, I woke up in bed to find this nasty creature burrowing deeply into my stomach. It was the first time that I had been head to head with a tick—or should I say her head and my belly?—and it was not a pleasant experience.
Too little is known about Lyme disease, and there is controversy over its incidence, its diagnosis, its treatment and the relative success of different treatments. There is also confusion because there are other tick-related diseases which we appear to know even less about than Lyme disease, and which we might well be talking about in this way in a few years’ time.
Things have been improving. The understanding and importance that the NHS gives to Lyme disease has improved in the past year or two. However, ticks are spreading; there is no doubt that there are more of them. The question is: can anything be done about that, or do we simply have to accept that it is part and parcel of the wildlife out there and we have to live with it?
Information and public education are not as good as they ought to be, although happily this debate coincides with quite a lot of publicity in the media about ticks and Lyme disease largely because a number of celebrities appear to have caught it. John Caudwell, the founder of Phones 4u—I confess that I have never heard of it before—and his family are running a campaign and other celebrities have been found to have this. So, this is causing a useful outbreak of publicity and one which I hope the Government will take advantage of.
I have one or two high-level questions for the Government. First, is it time for a major Government-sponsored inquiry into the growing incidence of ticks in the environment and tick-related diseases? It is not just the countryside—it is happening in people’s gardens. Secondly, is there a need to promote much better knowledge of ticks and Lyme disease among doctors, nurses and health professionals generally? I think it is obvious that there is a very great need for this. Certainly, an increasing number who know about these things, but there are many doctors whose knowledge is woefully inadequate.
Thirdly, what can be done to make the general public more aware? I am talking about the outdoor fraternity, organisations such as the Ramblers and the British Mountaineering Council—I declare an interest as a vice-president—as well as farmers, gardeners, and schools that take their children out into the countryside. There is scope for much better information and understanding out there. Lyme Disease Action has asked for five things to be done and I would like to put these on record and ask the Government for their response to them.
First, it stresses the need to find out how many people in the UK are infected and affected by Lyme disease. We need to know the true scale of the problem and, at the moment, we do not know that. There are something like 1,200 positive test results a year in the UK. The NHS believes the number of people infected with Lyme disease each year is about 3,000, but it might be a lot more. There is a lot of misdiagnosis. People are diagnosed with Lyme disease when they have something else and a lot of people who have Lyme disease, whether it is the immediate form or the chronic form, are not being diagnosed.
Secondly, there is a need for the NHS to acknowledge the uncertainties with diagnosis and treatment. There is a lot of anecdotal evidence of being people being told, frankly, nonsensical things. A classic case was somebody who was told they could not have Lyme disease because they lived in London. People are also being told that the tests are accurate and reliable, and they are not. Too many consultants are saying the blood tests are perfect and the treatment always works. Neither is true.
Thirdly, there needs to be a better working partnership between LDA and the NHS. One of my daughters’ partners has a lot of Lyme-type symptoms and has been passed from pillar to post by doctors, consultants and clinics in different places in North Yorkshire, where they live. The problem is that nobody is taking responsibility for sorting out what is wrong with that person. That is a typical experience in a lot of places.
Fourthly, guidance for UK health professionals needs to be developed, especially for those in secondary care. I am aware that Public Health England and NICE are working on this, but some interim guidance is needed urgently. Fifthly, regional centres of experience need to be established so that the burden does not all fall on one small charity.
I shall finish with a quote from LDA:
“The current level of knowledge is appalling. Doctors do not understand the tests, the epidemiology or the disease itself”.
I am impressed by the number of people who have been in contact with me since this question was tabled. I would love to read out a lot of what they say, but I have not got time. There is a serious problem. I look forward to the debate and to the Minister’s response.
Baroness Drake (Lab)
My Lords, ticks are a tiny blood-sucking species which feed on animals including humans. They have been around a long time: they belong to the family of arthropods that began to evolve 500 million years ago. Despite this longevity, however, most of the UK population is still unaware of how nasty these little creatures can be.
Last month the London School of Hygiene and Tropical Medicine published its research into ticks to establish to what extent they carry the bacterial pathogen that causes Lyme disease. Its team of experts conducted research in south London parks, including Richmond Park, a nature reserve of some 2,360 acres. There they collected more than 1,100 ticks. A quarter of these were tested for the infectious pathogen and about 3% were found to be carriers. Their report, however, considers the potential risk to humans to be much more significant than the statistics might suggest, because almost all the infected ticks were found in open grassland in areas frequented by the huge number of visitors. According to a 2015 Ipsos MORI survey, Richmond Park receives 5.5 million visitors each year. It is no wonder that the London School of Hygiene has called upon the royal parks to encourage visitors to take preventive measures, by increasing public awareness.
However, this just is not happening—either in Richmond or elsewhere. I walk most days in Richmond Park and much work is done to keep it so beautiful. It has large herds of fallow and red deer, which are ideal tick hosts, but there is little information alerting people to the risks or suggesting what to look for, what to do and how to take sensible precautions, such as stay on paths, avoid dense vegetation, and cover arms and legs. I often see people and very young children with bare arms or legs walking through the dense ferns and long grass, and their parents are oblivious to the risk they face.
I suffered a tick bite, with its bullseye rash, a few weeks ago. My GP at the nearby Sheen Lane Surgery responded quickly and prescribed antibiotics. Other GPs may not be so alert, yet early diagnosis is key to preventing the disease progressing to more serious stages. Public Health England estimates that there are up to 3,000 new cases of Lyme disease in England and Wales each year. The British Society for Immunology confirms that cases have risen steadily, as they have in Europe. Apart from a rash, early symptoms can include fatigue, fever, and headache, y et there appears to be no consensus on the complexity of the disease or the many clinical outcomes that it can produce. The problem of observable clinical features is exacerbated by the difficulty in confirming a diagnosis. As Public Health England confirms, cases left unaddressed or belatedly treated with antibiotics can lead to very serious problems, such as Lyme arthritis, myocarditis, and meningitis.
Testing does not confirm the actual presence of the bacteria, simply the body’s immune reaction to having encountered that bacterium at some previous time. It takes several weeks for an infected person to produce the relevant antibodies, so an early test may produce a false negative result. Treatment by antibiotics can slow or stop the production of the key antibodies altogether. The charity Lyme Disease Action complains that many clinicians remain unaware of the extent of the limitations of laboratory investigations. Tests can help to confirm Lyme disease, but no blood test can completely rule it out. Yet some GPs treat test results as definitive.
The British Society for Immunology is right to call for the funding of further research to establish more accurate diagnostic tests. More research is also needed on the disease itself. No vaccine is available. Protecting against tick bites can help to prevent Lyme disease. Even if, like me, you take great precautions, you can still get bitten. This takes us back to the importance of greater public awareness and of information alerting people to the risk of tick bites, what to look for, what to do, and how to take sensible precautions.
Lord Luce (CB)
My Lords, we should thank the noble Lord, Lord Greaves, for raising this issue. I think I am right in saying that this is the first time that it has been raised in Parliament. That would not be surprising because compared to other diseases it is relatively new, and so little is known about it still. The noble Lord, Lord Greaves, has highlighted the scale of the problem. My interest is not that of an expert. I must underline that point straight from the beginning. I am looking forward to hearing what the experts here have to say and, indeed, what the Minister has to say about this.
I speak as someone who knows a number of people who have Lyme disease, and I know how unpleasant it is. It is clearly very complex, as the noble Lord, Lord Greaves, has highlighted. It has spread to many parts of the United Kingdom. It is the largest tick-borne disease in the United Kingdom and it is also a serious problem elsewhere, including the United States and parts of the continent. It is a relatively new experience for us in this country.
To me, the key point made by the noble Lord, Lord Greaves, is the lack of knowledge on the parts of both the public and most of the medical profession. Indeed, it has been suggested that as far as the public are concerned, one in three people does not realise that they have a tick on them, or have had a tick. They would not know that they had this particular disease, or what caused the symptoms. We are told that earlier diagnosis and treatment is very important. If this can be achieved, the disease may still not be 100% safe but at least it is better than the second stage.
There are two areas where I would like to add to the points made by the noble Lord and ask the Minister to comment. The first is the position of the medical profession. As someone who campaigns on the issue of chronic pain, I have every sympathy with GPs, who very often are overwhelmed by pressure and demands. Here we are with another issue which we are asking them to pay attention to. Some of them probably never see, or have not yet seen, cases of Lyme disease themselves, so it is not surprising that many of them do not know much about it and may misdiagnose. I very much want to support Lyme Disease Action. The question of a regional service with specialist GPs was raised by the noble Lord, Lord Greaves. A regional service with specialist nurses and disease consultants could provide services and support for GPs in that region. Would that help the GPs to do their job more effectively? I would be interested to hear what the Minister has to say.
My second point has also been touched upon. How do we help those who are not diagnosed early enough, or who for the reasons we have already discussed have fallen through the net and received no treatment whatever? We do not know how many are in this category, and I hope that more information will be made available in due course. We have already heard about the kind of symptoms that people face when they have had this disease for some time: flu-like symptoms, persistent fatigue, pain, and impaired memory. People can be affected for a large part of their life, or for many years. Indeed, they may lose their job—it is that serious. It seems to me that the great uncertainty is what is the most effective diagnosis and treatment for those who are suffering from this in the longer term. We ought to acknowledge the work of the Public Health England Porton Down laboratories, which provide specialist expertise in Ebola and Lyme disease. We should not underestimate what they do for us.
There seems to be a considerable dispute as to whether chronic and persistent Lyme disease actually exists at all. I know that some doctors can be dismissive of the idea and dismiss people with the symptoms we have been talking about. They quite often lash around spending money on researching what to do about the symptoms, perhaps without realising that it is Lyme disease, thus incurring quite a lot of expenditure for the National Health Service. I look forward to hearing from the Minister on that issue as well. Could we fund extensive research in order to find out more about it?
Baroness Masham of Ilton (CB)
My Lords, I thank the noble Lord, Lord Greaves, for this short debate alerting your Lordships to a topical issue. Last Thursday, the Evening Standard had a double page headed, “The Ticking Lyme Bomb”, and yesterday the Daily Mail had a large article entitled, “So what IS the truth about the Lyme disease ‘epidemic’?”. I come from North Yorkshire, which is one of the areas listed as having a particularly high population of ticks. Lyme disease is transmitted by the bite of a tick affected with Borrelia burgdorferi bacteria. Ticks do not jump or fly but climb on clothes or skin. The bite does not itch or hurt, so the tick can remain on the skin for longer than 24 hours, which is dangerous.
Gamekeepers who walk in heather and bracken are always well protected as they are dressed in thick tweed plus-fours and jackets, thick stockings and boots, but nowadays I see more and more people running in shorts, sometimes with no socks, or having picnics in parks in hot weather wearing little clothing. Could this be a reason for the increase in tick bites? I know of a woman from the Czech Republic who got a tick bite picking mushrooms in a forest. She got a rash and went straight to her doctor. She was given the appropriate antibiotics and did not develop the problems which can be associated with Lyme disease. Can the Minister tell us whether enough people know what to do when bitten?
I am told there are three vaccines for dogs but none for humans. How much research is taking place? Are we sharing research with other European countries, Canada and the USA that have the problem? The Health Protection Agency is very important. Can the Minister tell the Committee what research is being undertaken into complications resulting in long-term damage to the nervous system, joints and heart issue? Could there be any danger of Lyme disease being passed on by body fluids, such as infected sexual fluid which is lingering on and being found in people with Ebola?
Now the problems have been highlighted, results should be made public and help should be made available for those who need it. I hope this debate will help to make more people aware of what infected ticks can do.
Baroness Warwick of Undercliffe (Lab)
My Lords, I thank the noble Lord, Lord Greaves, for introducing this debate and for his continued commitment to bringing this complex disease to our attention. As we have heard, many of us know someone or of someone who has experienced the distressing symptoms of Lyme disease. That is certainly what sparked my interest in the topic. The high public profile of some sufferers has meant that their stories and the controversies surrounding the disease have been widely reported in recent weeks.
Lyme disease has been in the UK since the late 1970s, but over the past decade cases of the disease have quadrupled. Public Health England suggests that there are some 3,000 new cases each year, although others put the figure much higher. We know the disease is transmitted by infected ticks, often on deer and mice, and they like grassland and leafy areas, so we are at risk whether we are walking on the Yorkshire moors or in London’s deer parks.
Lyme disease is on the increase across the UK, yet it is not diagnosed easily and there is a lack of adequate treatment. A common thread of the many cases we read about is that the doctors know very little about Lyme disease or have ruled out the diagnosis. Perhaps that is not surprising, given how new the disease is to the UK. Many doctors will simply never have come across a case. However, there is also division within the medical community on just about every aspect of this disease. Some think it is rare and easy to treat with a few weeks’ of antibiotics and that there is no such thing as long-term Lyme disease; others believe that it is becoming more prevalent and is much more difficult to treat than previously suggested, and that it can lead to severe chronic illness. Medical opinion in the UK has tended to the former view.
One complication is that symptoms can vary; not everyone bitten by an infected tick will display the so-called bull’s-eye rash. If this is the case, then what the doctor sees could be just a range of flu-like, non-specific symptoms, such as tiredness, muscle and joint pain, headaches, fever and chills, before more serious neurological or heart problems develop much later. Reliance on a diagnosis has almost exclusively rested on the blood test which detects antibodies to the disease. Yet these tests, as again we have heard, are too often inaccurate or unreliable, and even if antibiotics are prescribed the dose may not be strong enough, or the course long enough, to deal with the Lyme bacteria. UK cautiousness about overprescription of antibiotics is blamed for this.
It is good news that US researchers are making progress on developing a vaccine-like treatment, which would provide immediate protection against Lyme disease for the six months when the ticks are active. But until that emerges, the only way in which to prevent the disease is to avoid getting bitten. So it is vital that people are shown what they can do to protect themselves, and that GPs are given more information about the growing prevalence of the disease.
I am encouraged that the charity Lyme Disease Action and the Public Health England Lyme disease reference laboratory are now able to work together on difficult cases and equivocal test results. But more GPs need to be made aware of the testing facilities and expertise at the Government’s Porton Down laboratories. Public Health England currently recommends guidelines published by the Infectious Diseases Society of America, but we need UK and European guidelines to provide GPs with the full range of scientific evidence and medical opinion available. So will the Minister, on behalf of the Government, ask Public Health England to produce national guidance? We also need better diagnostic tests, more surveillance and more information about the scale of the problem. Can the Minister tell us what consideration is being given to whether Lyme disease should be given notifiable status by medical practitioners? Until we have greater GP and public awareness, more testing and earlier diagnoses, we will continue to have more chronic, life-changing cases of this complicated disease.
Lord Patel (CB)
My Lords, I thank the noble Lord, Lord Greaves, for introducing this debate and I have pleasure in contributing to it. First, I want to talk about personal experience. My wife, Helen, whose chosen full-time occupation would be gardening, is continuously bitten by these things and is always pulling them out using sharp tweezers, except for the places that she cannot reach, in which case she has to wait until I get home. The year before last she had a tick bite and removed it. Unfortunately, a week or so later she developed some symptoms when I was not there—I was away. Fortunately, our resident young doctor, the partner of my son, realised that, having pulled out a tick a few days earlier, the symptoms could well have been those of Lyme disease. She found a GP and suggested that Lyme disease be considered as a possible diagnosis. The GP prescribed antibiotics and my wife was fine. However, it is a nasty disease if not treated properly.
Diagnosis is based on the so-called classical bull’s-eye rash, although it does not occur every time; nor can you find the tick on each occasion. Diagnosis can also be made through blood tests; the first is an antibody test. Antibodies do not develop until the bacteria have been in action for a while and the body responds to them—hence, if the initial test is made too early, it often gives a false negative. Another test is the Western blot test, which is much more reliable but has to be done much later. If you wait for that test without treatment, the question is whether the treatment is likely to be less satisfactory, particularly if the bacteria have progressed—because the disease is caused not by the tick but by the Borrelia bacteria. The vector is the tick but the primary reservoir is not the tick; it is either a mouse or other rodent, and it is carried by other mammals such as deer or even dogs, although they do not get infected. When the tick sucks blood from your body, the bacteria are transmitted. If while removing the tick you crush it or try to burn it off, the bacteria will spread and get into your blood, where it causes the different symptoms of the disease.
There are two aspects to this, one of which is prevention. In prevention, the key factor is that those who are likely to be exposed to the risk of tick bites should be aware of that and take precautions to avoid being bitten, which includes wearing clothing that may be impregnated with something like DEET, which is a powerful insecticide. The other is the need for heightened awareness among health workers of the likelihood of a diagnosis of Lyme disease. It is easy to diagnose when the patient has a history of a tick bite and there is a rash. However, while the guidance produced by NICE, which was revised in February 2015, is good, where I differ from it is that the guidance states that if you do not have a rash and there is no sign of a tick bite, antibiotics should not be prescribed. I think that if there is a history of a tick bite and the symptoms fit with those of Lyme disease, treatment with antibiotics should begin. If it is not treated early, the antibiotic treatment has to go on for a long period. Once the bacteria get into the spinal fluid or the nervous system, the disease is difficult to treat.
So the key issues are prevention and heightened public awareness, along with the need for greater awareness among health workers. They should think about Lyme disease if there is a history of tick bite and the patient presents with symptoms which, while they may seem flu-like, typically progress to other symptoms. Those are the key points which are reported. Why is it called Lyme disease? Because it started in a small town called Lyme in Connecticut.
Lord Trees (CB)
My Lords, I too thank the noble Lord, Lord Greaves, for bringing forward this timely debate. As someone who for much of their professional life has researched and taught on tick-borne diseases, I never imagined that I would be speaking on this subject in your Lordships’ House, but I would say that my students might have preferred it had my lectures been limited to four minutes, as are today’s contributions. I may be the only person here who has actually been to Lyme. During a road trip down the eastern seaboard of the US some years ago, I dragged my wife on a detour to visit the lovely New England village of Lyme in Connecticut with white clapboard houses. It is where, in the 1970s, the first outbreak of the disease was thoroughly investigated, which led to the discovery of the causal organism and much of the characterisation of the disease. However, the first important point to appreciate is that this is not a new disease. The characteristic skin lesion was first described as far back as 1909.
Looking at the data from Public Health England, it is not clear whether there has been a big change in incidence, but there is certainly a big increase in concern. There is certainly some evidence of increased distribution and abundance of the tick vector, Ixodes ricinus, and in recent years we have seen an increase in the number of wild animal hosts, particularly deer and game birds, both of which are extremely good hosts for ticks. There is also an increase in human contact with ticks, not only in rural areas but also in peri-urban and suburban areas.
As I say, it is well known that deer are excellent hosts for the tick. Like the noble Lord, Lord Patel, I live in Perthshire and I regularly have to pick ticks off myself that I contract in the garden, which is frequently visited by deer. But—this is an important point—the ticks are almost always at the larval stage; they are tiny, pinhead-sized larvae which do not transmit Lyme disease. It is during the larger nymphal and adult stages when the disease is transmitted, and these ticks are much less abundant than the larvae.
There are risks, but I would like to make the point that it would be a tragedy if people were dissuaded from enjoying the great benefits of the outdoors for fear of Lyme disease. Having said that, there is no doubt that it is a severe and debilitating disease if it is not diagnosed and treated early. In the absence of a vaccine for humans, I suggest that the key to controlling it, as has been said by a number of noble Lords, is to ensure that GPs are aware of the threat and are thus able to instigate early diagnosis and treatment.
It is a fact that in western medicine GP training in zoonotic infections and parasitic diseases is very limited. That is for understandable reasons, and I am fully aware of the pressures on curriculum time in our undergraduate medical courses. None the less, what are the Government doing to encourage awareness among GPs of tick-borne infections? This is of course a matter for continuing professional development but there is also a role for the state, which bears the costs of undiagnosed and misdiagnosed cases that lead to severe and chronic disease.
Lyme disease is a good example of the “one health” concept, which recognises the connectivity between human and animal health, and indeed plant and environmental health. It is a concept embraced well by vets but, I suggest, is understood much less by our hard-pressed GPs. Pathogens do not recognise differences between humans and animals. With regard to zoonotic infections, those infections specifically transmitted between animals and humans and vice versa, such as the agent of Lyme disease, we need to ensure that our GPs are adequately aware of the hazards. That way we can prevent serious illness in people and reduce burdens on the hard-pressed NHS.
Baroness Parminter (LD)
I add my thanks to the noble Lord, Lord Greaves, for calling this important debate. It is clear that cases of Lyme disease are increasing across Europe. As someone who, like the noble Lord, Lord Trees, is passionate about the countryside and encourages people to go out and enjoy it, I think we need to address the problems that this disease is causing but in a way that does not stop people going out and getting the health-giving benefits of being in the countryside. The noble Lord, Lord Greaves, is right to focus on the need for better understanding of the level of the disease, as many noble Lords have said, on the necessary improvements in diagnosis and testing, and on the critical importance of some speed in getting clear guidance for our health professionals.
I come to this debate today, with the short time allotted to us, to make one point, which was first raised by the noble Baroness, Lady Drake: the need for far better public awareness of this issue. In looking into the research for this debate over the weekend, I was at the same time packing my eldest daughter’s kitbag for her Duke of Edinburgh award. She was off to the South Downs. Like the noble Baroness, Lady Masham, I was looking at the lists of where the most infected ticks are: it is not just North Yorkshire but also the South Downs. I asked my daughter, as we were packing an increasingly large amount of kit into her bag, what she would do if she encountered a tick. My daughter is a fairly intelligent 15 year-old but she had no idea what to do. I asked her whether they had talked about it in her D of E training but they had not. When I went back through the information that I had been sent—you get voluminous lists of kit that you as a parent need to provide—there was nothing about ticks. We were sending off these girls for two nights and three days on the South Downs, and not one of them would have known what to do.
The great thing about the Duke of Edinburgh scheme is that it gets our children out into the countryside and teaches them great skills of leadership; it is growing, which means more children are taking part, and that is to be encouraged. However, it is quite clear that it has no engagement with a fundamental problem that these young adults, who are going to be the young parents and young leaders of the future, might encounter. It strikes me that we need to address that, and I urgently ask the Minister to talk to Public Health England about what it is doing to encourage greater public awareness, looking particularly at organisations. The noble Lord, Lord Greaves, mentioned organisations such as Ramblers; I would add the Duke of Edinburgh scheme, given the number of children going out into areas that might be affected.
It amazed me, when I was looking through the fantastic pack that the Library has provided, to find that there is the Big Tick campaign. I thought, “Fantastic! Someone is doing something”—and it is the vets. They have a high-profile celebrity, Chris Packham; they have a very good website; and they have resources going out to the veterinary profession that are then being cascaded down to pet owners, telling them all about the dangers. There is nothing with an equivalent status for parents. So while I applaud the work of LDA, which does a good job on very limited charitable resources, it is time, given the scale of this problem, that we did more on this subject and had far better public awareness.
Baroness Wheeler (Lab)
My Lords, I, too, welcome the initiative of the noble Lord, Lord Greaves, in securing this debate, which we hope will play a helpful role in raising awareness and understanding about Lyme disease and facilitate the real progress and action that is obviously needed. Although we are talking about a relatively small patient population, it is important to underline that cases of the disease have quadrupled over the past 12 years, taking into account the latest NHS data and the fact that, as we have heard, many cases are not formally diagnosed or clear up without any treatment. It has been a comprehensive and expert debate and I look forward to the response from the Minister on the number of issues that have been raised. I do not intend to repeat them.
I also pay tribute to the work of Lyme Disease Action. Its developing work and improving relationship with the Department of Health and Public Health England is a sign of hope for the future and is to be welcomed and commended, as is its partnership with the Royal College of General Practitioners in working on, for example, online training for GPs. In particular, LDA’s help desk for patients and medics, helping to document cases, including test information, talking to laboratories about test results and offering GPs a conversation with the medical director, has led to the successful treatment of patients. Surely it is a model that needs to be taken forward across the NHS as it uses the expertise and knowledge built up by the LDA over many years and, if more widely adopted, would go some way towards addressing the lack of awareness about Lyme disease among many GPs and hospital doctors.
As we have heard, early treatment of Lyme disease is almost always successful but the best treatment in late-diagnosed cases is unknown and the resulting disability can become very severe and lasting with, frustratingly, no consensus on approach or treatment. I recently watched a DVD from the charity Canine Partners which showed how an assistance dog helped and supported a wonderful woman called Sue, who was diagnosed with Lyme disease 17 years ago and has suffered chronic fatigue, painful and stiff joints and muscle and back pain since then. I watched it because my partner had a major stroke seven years ago and he has an assistance dog, so I know first hand how helpful and vital assistance dogs can be for people with disabilities in supporting their independence. It would be good if we could all see that DVD now because it underlines the terrible cruelty of the disease for patients in the chronic state. Sue’s assistance dog is trained to wake her up in the morning because her extreme fatigue means that she has no time awareness of how long she has been sleeping; and, if she needs to rest during the day, the assistance dog is trained to keep an eye on her. It supports her in so many ways—by passing clothes to her for dressing, picking up the phone and so on. It is very good to watch that DVD, which shows the impact this terrible disease can have.
Noble Lords have commented on recent press coverage. One of the articles I read as background to this debate commented that,
“few diseases have aroused more emotional attention in the press and the public than Lyme disease”.
We saw this in the recent publicity, with the all main problems identified: the ongoing problems with diagnosis; patients going to private clinics for tests or travelling abroad to seek tests not available in the UK, or desperately searching for countries with greater knowledge and expertise on the disease than in the UK; and the firm conviction by patients that the disease can be transferred from human to human despite the strong scientific evidence so far that it cannot. These patients all felt that treatment for the disease had not worked for them and that is important. The major themes of this debate are about the overwhelming need for more data and research and I look forward to the Minister’s response on that.
On the issue of guidance for UK health professionals, I understand that there is a general acceptance by both PHE and LDA of a need for guidance for health professionals covering secondary care in particular. What discussions has the Department of Health had with PHE and NICE on this and can the Minister commit to ensuring that a work programme and timetable for such guidelines is produced in the near future?
I was interested to learn from someone who has a particular interest in the provision of specialised care—I do not have time to say why—that paediatric Lyme disease is within the scope of specialised commissioning whereas adult Lyme disease appears not to be. Can the Minister shed any light on the background and reasoning behind this situation and agree to look into the matter?
The Parliamentary Under-Secretary of State, Department of Health (Lord Prior of Brampton) (Con)
My Lords, I echo other noble Lords in thanking the noble Lord, Lord Greaves, for raising this important issue. I, too, have read a lot in the media over the past two or three weeks; that has been good in raising awareness of the whole issue, and I hope that this debate today will also do so. A big theme in the contributions from noble Lords has been the need to raise awareness, not just with the public but with GPs and clinicians.
I seem to be almost the only person in this room who has not had—if I may put it this way—a head-to-head relationship with a tick, but I can imagine that it was not a happy occasion for the noble Lord, Lord Greaves, or for others.
The briefing by the Lyme Disease Action group was excellent. It was measured, well-informed and very constructive, so I thank the group. Secondly, I know that Dr Tim Brooks, the head of the Rare and Imported Pathogens Laboratory at PHE at Porton Down, is very happy to meet with noble Lords or others who are interested outside the Chamber to discuss this in more detail.
I would like to deal with two issues before I talk more generally about the importance of awareness, treatment and research. First, the noble Lord, Lord Greaves, raised the issue of a national inquiry. I do not think that we will go down that route at this stage. Secondly, on the point raised by the noble Lord, Lord Patel, about the NICE guidelines on how early we should start treatment with antibiotics, I will take that up separately with NICE.
We recognise that Lyme disease is overwhelmingly the most important tick-borne infection in the UK, and we are aware that its incidence has risen severalfold over the past couple of decades. Even so, the UK has a much lower incidence of tick-borne diseases than the rest of Europe or North America—indeed, I believe it was in Lyme in New England where it was originally discovered. Many of the more deadly diseases do not occur here at all. However, as noble Lords have mentioned, Lyme disease can be acquired almost across the country now—in Richmond Park or in North Yorkshire. Therefore, it is important that doctors across the country can recognise the features of these diseases even if the patient lives in an area not hitherto associated with Lyme disease.
I will talk first about public awareness, an issue that all noble Lords have raised, particularly the noble Baroness, Lady Parminter; she described her daughter going off on a Duke of Edinburgh’s Award trip, which is a good illustration of the need for public awareness. To raise awareness among the public, the first line of attack should be on the tick. Public Health England is working with Liverpool University and others to survey tick populations and the organisms they host to determine risk areas across the UK. PHE, the charity Lyme Disease Action and various local councils and national park authorities produce public information leaflets on how people can protect themselves against tick bites and on what to do after a tick bite. Noble Lords might like to look on NHS Choices, for example, where they can see what a tick bite looks like, and if anyone would like any materials on this horrible disease, I would be very happy to distribute them later.
Early diagnosis and treatment of Lyme disease is the best way of limiting complications once a patient has been infected. GPs are, of course, at the front line of this. NICE and Lyme Disease Action produce guidance and training modules for GPs, and PHE has a helpline for doctors, as well as running GP training days. Specialist doctors have access to the literature on Lyme disease and are trained in the recognition and management of the disease within their higher professional training and continuous professional development. There is clearly much more that we can and should do in raising awareness. Of course, one of the difficulties is that many GPs never—or very rarely—come across a case of Lyme disease. Nevertheless, we can and must do more to raise awareness. That is possibly the most important thing that we should be doing.
Public Health England has a long and distinguished history of diagnosing infectious disease and developing tests for this purpose. A key principle is that the test should be able to recognise true cases of the disease and distinguish it from other conditions that might cause the same symptoms.
In Lyme disease, current tests rely on finding the organism, which is rarely present in the blood and so it would be looked for in tissue samples taken by a biopsy. This is impractical in general practice and, of course, not popular with patients. Rather than finding the organism, looking for the antibody response is the most productive diagnosis. The body produces the antibodies as it tries to clear the infection. If a patient is treated early, there will be insufficient antibodies in the blood so the test will also be negative. Tests taken early in infection, before enough antibodies have been made, also will be negative. Therefore, doctors should be aware that if symptoms persist a second sample should be taken at a later date when the antibodies have developed.
There is a routine test used by PHE of a commercial product used by many other national laboratories across Europe. Through an international, external, quality assurance scheme, the performance of these tests is compared regularly against more than 70 other state laboratories in Europe and meets the current high standard. Tests used by private laboratories may not be subjected to the same rigorous quality control and I think this is an important issue that has been obscured in some of the reporting by the media. There is no requirement for these labs to demonstrate the evidence base for their test and some tests inevitably will give a very high rate of false positive results. This is why some GPs and infectious disease specialists frequently will not accept test results from independent laboratories because they wish to avoid unnecessary or inappropriate treatment. Of course, I can totally understand how frustrating and upsetting that is for individual patients. PHE recognises limitations in the present tests, especially in early disease and in the subset of complicated cases, and is working with national and international partners to develop and evaluate new testing methods. It is a complex disease, it is a difficult disease and I do not think we will be doing ourselves any favours if we try to oversimplify it.
Turning to treatment, oral antibiotics are the mainstay of treatment for Lyme disease and are successful in the majority of cases. Of course, the earlier that the bite or disease is treated, by and large, the better. However, it is becoming increasingly apparent that in complicated disease, especially where there are significant neurological symptoms, more than one course of antibiotics may be needed and a course of intravenous antibiotics may sometimes be indicated. PHE has published a referral pathway for GPs to follow to ensure that problem cases are seen by appropriate NHS specialists.
Some patients suffer debilitating illness with symptoms that persist after treatment for several months or longer. What therapy is appropriate for these patients depends on whether symptoms are a function of persisting pathogen or a legacy of damage that the pathogen has left behind. More research is needed to identify the basis of these persistent symptoms and define effective treatments. As the symptoms may be non-specific, a key part of management is a careful investigation to ensure that other serious conditions are limited. I am reminded by a question this week in the House of Lords about post-polio syndrome. It seemed to raise very similar issues.
Patients need to have access to physicians with an interest in Lyme disease. Since the disease can be present in many different ways and can be confused with other more life-threatening conditions, in future this could be best done by establishing a network of interested NHS practitioners across the country with multidisciplinary experience. This issue was raised by a number of noble Lords and clearly is important.
On research, PHE has a long track record in infectious disease research both through its laboratories at Porton Down and in partnership with universities and international groups. This provides PHE with deep background knowledge and specific expertise and techniques. With the University of Liverpool, PHE is looking at new markers of Lyme disease infection and this is supplemented by work in the Czech Republic to evaluate potential test methods at different stages of disease by accessing a large clinic with a high throughput of Lyme patients. PHE is also exploring new concepts for both diagnosis and treatment through its relationships in the United States. Having a network of interested professionals across the country will enable further clinical studies to be undertaken if funding can be secured. Funding is clearly going to be extremely tight within the NHS. If we could secure funding from private sources as well, that would be a very sensible way forward.
This has been a very good debate. Just having the debate itself helps raise public awareness. A lot is being done but clearly there is a lot more that needs to be done. I reiterate the offer from PHE that if noble Lords would like a more detailed discussion with it, perhaps along the same lines as the discussion the noble Countess, Lady Mar, had at Porton Down with members of Lyme Disease Action, we are very happy to organise that.
Lord Greaves
Before the Minister sits down, will he comment on the suggestion that the pressure on the small charity LDA to provide help and advice in individual cases might be lessened by some sort of regional organisation: clinics, groups of GPs or whatever?
Lord Prior of Brampton
I think I mentioned that the intention is to have people with specialist knowledge of Lyme disease around the country. We feel that that would be a better approach than having a single centre.