On 23rd February 2016, representatives from Lyme Disease UK attended a scoping workshop hosted by NICE as part of the first stages of the new Lyme disease guidelines formation. The workshop involved an introduction to the guidelines writing process and a chance to meet the chairperson. Group discussions were held on the draft scope document and many different aspects were debated.
There were numerous patient groups in attendance and NICE is encouraging patient groups to have an active role in the process in a variety of ways. Individuals from patient groups can register as stakeholders at any stage throughout the entire guideline writing process, so there’s still time to get involved!
Professional stakeholders included microbiologists, Infectious Diseases consultants, GPs and neurologists.
Formal comments from stakeholders on the draft scope document will be requested soon. This will allow stakeholders to make suggestions about editing the document in any way. The draft scope will also be available on the NICE website from the 17th March 2016 for consultation. [It’s now online here]
The committee selection process will be underway shortly which will be a critical part. The committee members commit more time to the guideline writing process but they also have more of a say in terms of the outcome of the final guidelines. They are required to have professional experience of Lyme disease although two to three lay members are also included.
For more information on the NICE Lyme disease guidelines, see here.
Documents relating to this guideline process can be found here including a list of stakeholders and notes taken from scoping workshop.
The draft scope has numerous problematic areas from the perspective of patients and these will be reflected in Lyme Disease UK’s stakeholder comments.