Lyme Disease

Lord Greaves Excerpts

Thursday 22nd October 2015 Grand Committee

Asked by

[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.

--- Later in debate ---

[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.