A new paper entitled, ‘Knowledge and Uncertainty in Lyme Disease Detection: An Evidence-Based Activism Research Study in the UK,’ has emerged in the journal Critical Public Health following research conducted by Professor Alex Faulkner at the University of Sussex and the patient organisation Lyme Research UK, led by Kate Bloor. The paper details the disturbing inconsistencies when it comes to numerous different aspects of the disease. In the paper, the researchers reveal: ‘Our analysis shows a lack of consistency in policy, consumerist strategies among patients, and official policy that inhibits illness identity and maintains hard boundaries between patients’ experience and public health practice.’
The University of Sussex news piece on their website about the research states that there are ‘stark discrepancies between the different policy and clinical practice guidance documents issued by Public Health England and other health bodies.’
Lyme patients are often fully aware of these discrepancies as they usually have to live them out, receiving conflicting messages from doctors and fellow patients who have walked this path. ‘The researchers also suggest that patients and patient groups should have greater involvement in decision-making processes, as their knowledge about the disease is often underestimated.’
Furthermore, ‘Alex Faulkner, Professor in Sociology of Biomedicine and Healthcare Policy at the University of Sussex, said: “The symptoms of Lyme disease can include a ‘bull’s eye’ rash, aching and swelling joints, neuralgia, problems of the nervous system and heart inflammation. But we found that official guidance by Public Health England, the British Infection Association and NICE, all differ in their statements about the typical symptoms. Only NICE refers to the possibility of a later-stage rash, while joint pain and swelling were inconsistently referred to across the various sources we looked at. These mixed messages are highly confusing for patients.”
Co-author, Kate Bloor commented: “We need to relieve the difficulties of diagnosis, that patients and their doctors face (when the medical practice only ‘fits’ certain types of acute cases) for Lyme disease. It is particularly important to understand what patients groups’ views on current practices are, in a real human and experiential context – since this will assist in developing future and better knowledge.”
Lyme disease patients, by default, have to become ‘expert patients,’ which often leads to defensiveness from doctors. Lyme Disease UK welcomes more patient involvement in policy making and we have seen some positive changes as patient organisations have been invited to be stakeholders in the NICE guideline writing process, the NICE Quality Standard for Lyme disease, the independent government reviews and a research workshop. We feel there should be plenty more opportunities for collaboration as more is done to understand the complexities of this disease.
It is a useful paper for summing up the different roles played by the UK Lyme disease charities and patient groups and LDUK is described as being an ‘evidence-based activist organisation…meeting all the criteria of experiential knowledge, articulation of credentialed knowledge, redefining the disease, and participating in established networks of expertise.’
Thank you to Professor Faulkner and Lyme Research UK for producing this valuable resource.
Read more here.