Patient Representation on the Lyme disease Guideline Committee

This petition has been set up following the decision, by Public Involvement Programme Recruitment (PIPR) acting within the National Institute for Health and Care Excellence (NICE), to remove Veronica Mai Hughes Application to become a Lay member of the Lyme disease Guideline Committee.

Nice state that they are looking for Lay Members; who can help to ensure that the views, experiences and interests, of people affected by the guidance, inform the Committee’s work. Which may include:

 identifying issues of concern to people using NHS, public health or social care
services
 making sure that patient, service user, carer or community views are taken into account
 raising awareness of any studies known to you (for instance, surveys of patient, service user or community views and experiences) which highlight issues that may inform the work of the Committee
 reviewing evidence and draft recommendations from a patient, service user, carer or community perspective (for instance, did the research address issues or outcomes that people affected by the guidance consider important? Do the recommendations take their views into account?)
 highlighting areas where the preferences and choices of those affected by the
guidance may need to be acknowledged

We are an independent group of patients affected with, or by, Lyme Borrelia & Coinfection's; who wish to be represented by somebody we trust and who we feel confident will best represent us all; whilst also meeting the Lay Member Personal Specification Criteria, which you have published.

Veronica Mai Hughes has contact with many 1,000's of patients and we feel confident that she would be the perfect candidate for the position. She has held her membership with LDUK (Lyme Disease UK) for a number of years and this has allowed us all to become acquainted with her; leading us all to the conclusion that her involvement, as a Lay Member, would be positive, from every angle.

No Selection Criteria has been made available. We feel this is unethical and it worries us all of, greatly. We are concerned that the selection processes should be fair, objective and free from bias to ensure that the best candidates are selected.