Group Projects

Lyme Disease UK was founded in March 2013 and has since undertaken many projects to help push forward advancements in awareness, diagnosis and treatment of Lyme disease in the UK.

 

2013

• In April 2013 we conducted a letter writing campaign to the Health Secretary Jeremy Hunt detailing our personal histories with Lyme, about how we feel let down by the NHS and how hard it’s been to get appropriate testing and treatment, with many of us getting into financial difficulty or making huge sacrifices to pay for private treatment. They noted our campaign and were made very aware of the discontent we feel about the situation in the UK.

• In May 2013 we took part in the Worldwide Lyme Disease Protest outside the Department of Health in London. We were raising awareness and educating the public about Lyme disease, how to spot it and how to avoid it. We gave out leaflets, made banners and made friends. We also added our voice to the worldwide movement that got much media coverage.

Worldwide Lyme Disease Protest – UK May 2013

• We also helped to collect signatures for one of the biggest petitions on Lyme disease the UK has seen with over 5,000 signatures at the time of handing it in to the Department of Health. It demands Lyme to be made a notifiable disease not just when serologically confirmed but also in clinically diagnosed cases, so that accurate statistics can be compiled on its prevalence in the UK as well as more accurate diagnostics and clinically based treatment.

• For the protest a group member made an awareness video with many participating from the group to show the world what having Lyme disease has meant to them.

• Over the summer of 2013 we had a big media drive and many of us featured in local and national publications telling our stories. We hoped this would raise further awareness of what is a fairly unknown disease which is so massively under diagnosed.

• In October 2013 a number of group members went to the Public Health England Lyme Disease Conference held in London. The Countess of Mar, a member of the House of Lords, opened the conference and specifically asked Dr Brooks and Dr Dryden to review and reply to the questions we had prepared and sent to them.

• Before the conference a document containing 59 questions was compiled by group members for the staff at the Rare & Imported Pathogens lab and the new Lyme Disease Referral Clinic at Winchester. We hoped that by posing these questions we’d gain insight into any new advances PHE have made in diagnosing and treating tick borne diseases so that members had up to date information for making their own health decisions. We also wanted to further a dialogue between PHE and patient groups. The questions were answered shortly afterwards which can be read in pdf format. Public Health England answers to group questions document.

• In December 2013 we were nominated in the Wego Health Activist Awards in several categories including Best in Show: Community/forum and Best in Show: Facebook.

 

2014

• Co-founder Natasha Metcalf featured in a BBC Inside Out West documentary in January 2014 featuring the problems surrounding Lyme disease testing and treatment.

• Group members Nicola Seal and Jenny O’Dea from Ticktalk Ireland featured on Katina Makris’ US-based radio show Lymelight Radio in April 2014 to discuss Lyme disease in the UK and Ireland. The archived podcasts can be found here.

• In May, group members organised and attended the UK’s part in the Worldwide Lyme Disease Protests 2014, garnering much media and public interest. The protests were held in two locations for the first time, Manchester and London. Waterloo MP Simon Hughes attended the London protest and will be raising the issues in parliament.

• In December 2014, LDUK was nominated again by group members in 5 different categories for the WEGO Health Activist Awards: Best in Show Google +, Health Activist Hero, Best in Show: Community; Forum, Best in Show: Facebook, and Best Kept Secret

• LDUK group members Sophie, Val and Holly set up new UK based charity LymeAid UK (www.lymeaiduk.com) to provide grants for people who suspect they have Lyme disease to carry out private testing at overseas laboratories.

 

2015

• In January 2015, LDUK group members Demetrios Loukas, Denise Longman and Peter Kemp organised the first ever patient-lead Parliamentary Conference on Lyme disease which was opened and chaired by The Countess of Mar. LDUK’s write up of the event and links to the presentations can be found here.

•  In April 2015, The Big Tick Project was launched in the UK which is a collaborative research effort organised by the University of Bristol and UK vets across the country and backed by celebrity naturalist Chris Packham. The launch of this project sparked a lot of media attention and LDUK group members were interviewed by My Pet Online, BBC Breakfast, STV, BBC Radio Suffolk, ITV and also featured in The Daily Mail. A good round up of the publicity can be found on Joanne Drayson’s blog; Looking At Lyme.

• Group members have made lasting friendships and met up not just in the UK but across the world at various Lyme treatment centres. The value of making new friends who have had similar experiences as you, understand what you’re going through and who provide real support, is priceless.