Develop accurate NHS tests and effective treatment protocols for Lyme disease.
- Parliament:
- 2015–17
- Signatures:
- 10,851
- Responded:
- 24 May 2016
The petition
The incidence of Lyme disease is increasing dramatically across Europe. Every year, hundreds of thousands of people contract Lyme disease and because of inaccurate testing, many go undiagnosed and untreated. Allocate funds immediately for research into developing new tests and effective treatments.
Make Lyme disease notifiable so we know the true incidence in Britain. Develop accurate tests because the ELISA and Western blot tests are known to be inaccurate and unreliable. Train NHS staff in diagnosis and treatment of tick-borne diseases. Open dedicated clinics and use effective treatment protocols, extended for as long as necessary. Research the possibility of sexual transmission and dangers to pregnant women. Make the general public aware of the potential risks from tick bites.
The government's response
New systemic reviews and NICE guidance will inform research, services and educational material. The NHS will continue with validated tests, keeping any evidence of undiagnosed infection under review.
The Department is commissioning three separate systematic reviews on the diagnosis, treatment and transmission of Lyme disease to provide evidence to inform future decision making. These will be put into the public domain on completion, which is expected to be in autumn 2017. NICE guidance on diagnosis and management of Lyme disease is currently in development and expected to be published in July 2018.
We are not aware of any evidence that very large numbers of cases are undiagnosed and untreated. Current tests rely on detecting an antibody response and as this often occurs after symptoms appear, General Practitioners (GPs) are advised to treat patients empirically using their clinical judgement rather than relying on a laboratory test. Thus treatment can start immediately and does not depend on a laboratory result.
All cases of Lyme disease confirmed by laboratories in England are reportable under legislation. Following consultation, legislation does not require notification of clinically diagnosed infections apart from very rare cases of encephalitis. As only a proportion of infected individuals present to GPs with symptoms, the actual incidence of infections would remain unknown even if reporting of probable cases based on clinical observations was complete.
Tests used in the National Health Service (NHS), Public Health England (PHE) and national laboratories across Europe are well established, and are highly reproducible between laboratories. International External Quality Assurance schemes are in place to ensure consistency between different tests centres. Commercial manufacturers and international academic groups have research programmes into improved tests, and PHE with the Liverpool University Health Protection Research Unit also has a small research programme. PHE also have links with groups in the United States and Europe investigating new diagnostic techniques.