TOUCHED BY LYME: British Lord discusses Lyme in “Queen’s Speech” debate
This week has been a momentous time in the UK. Amidst a lot of pomp and pageantry, the annual Queen’s Speech marks the State Opening of Parliament and presents a list of laws that the government hopes to get approved by Parliament in the coming year.
After the Queen has presented it, Members of Parliament discuss it over the following five days. Today, as part of that discussion, Lord Astor of Hever, whose daughter has Lyme disease, made the following remarks.
(The whole thing is quite good, but I have put in bold type a few comments I hope you’ll pay particular attention to.)
My Lords, I want to speak briefly on the specific health issue of Lyme disease, which is a rapidly increasing health risk in the United Kingdom. If Lyme disease is not treated early, it can cause significant illness and devastate affected patients’ lives. This is what life has been like for my daughter, and I declare this personal interest.
Many noble Lords will be aware that ticks harbour Lyme disease, as well as many other equally serious infections. These infections are passed to humans and animals via the bite of an infected tick, due to and during their method of feeding. The danger is no longer confined to rural areas, with ticks now being found in every county of the United Kingdom, and increasingly so in urban parks and people’s gardens.
If Lyme is diagnosed and treated early, the chances of a full recovery are good. However, failure to diagnose early and treat adequately can result in serious consequences to the patient. Tick-borne diseases that are misdiagnosed or neglected result in complicated infections, which have devastating and multisystemic consequences. Patients can be left with extremely debilitating and chronic symptoms, needing a wheelchair or completely bedridden, and enduring intense and relentless suffering.
Despite the increasing threat that Lyme disease poses to public health, there remain no suitable UK official guidelines for diagnosis or treatment. What we do have is outdated National Health Service guidance, relying on guidelines written by the Infectious Diseases Society of America and supported by the CDC. According to the National Guideline Clearinghouse of America, the IDSA-CDC guidelines are not fit for purpose. They are outdated and do not take into account recent developments in the understanding of these complex infections.
The absence of adequate guidelines is closely linked to the fact that insufficient levels of training are available to our doctors. Even if a positive test is obtained, expertise is seriously lacking, both in value of interpretation and in dealing appropriately with the illness. That stark statement is in accordance with multiple testimonies from patients. Expert patient input is crucial in turning the situation into a positive solution, not only for patients themselves but for the National Health Service as a whole.
Failure to meet the challenges of Lyme disease has led to unknown numbers of people becoming infected, but not diagnosed or treated. It could amount to tens or even hundreds of thousands of people. The UK now finds itself in a situation where patients with diverse illnesses and symptoms might actually have unrecognised Lyme disease.
In these patients, the infection could have reached a stage where treatment will be difficult and lengthy and will require the supervision of expert physicians, trained and experienced in this complex disease and the frequently occurring co-infections.
The cost to the Exchequer in terms of numbers of patients unable to work and using the NHS for serious health problems must be a truly staggering amount. Neither this country, nor affected patients, can afford this. Early recognition of symptoms and early treatment would save our National Health Service a great deal of money.
Given the huge cost, both in terms of the impact on the patient’s quality of life and, in practical terms, on our health service, it is clear how important it is to prevent as many cases as possible reaching this stage. Improvements in the training available to our doctors should be made a top priority. However, awareness among the general public of the risk posed by ticks should also be prioritised.
There are some very simple measures that can be taken to reduce one’s chance of becoming infected with Lyme disease. However, few people have any knowledge of this. How can we safely, and with a clear conscience, encourage children to play outside and make the most of the outdoors if we are carelessly allowing them to risk their health by contracting one of these insidious, infectious diseases?
Outdated guidelines, unreliable blood tests, insufficient training for doctors, a lack of tick-borne specialists of calibre and a widespread lack of awareness among the general public of preventive measures are all factors that are leaving us alarmingly ill-equipped to tackle a problem that poses a rapidly increasing risk to every UK citizen.
In the light of this, I ask my noble friend what his department is doing to ensure that GPs receive training in Lyme disease that is mandatory and thorough enough to allow them to make clinical diagnoses. Proper awareness will prevent the number of Lyme disease sufferers growing.
Lyme patients want to regain their health. They want to get back to work. They wish for nothing more than to regain control over their lives and take part in all the activities they enjoyed before they became ill. Most Lyme patients have the will and determination to achieve this.
But none of these aims can happen if they are sidelined and hobbled by misguided opinion—which includes the current health system situation, with its constraints and limitations.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at firstname.lastname@example.org