In 2013 LDUK was involved in the following projects,
- In April 2013, LDUK group members conducted a letter writing campaign to the Health Secretary Jeremy Hunt detailing our personal histories with Lyme, how we feel let down by the NHS, how hard it’s been to get appropriate testing and treatment and how many of us are getting into financial difficulty trying to fund private treatment. Our campaign was noted and the Department of Health were made very aware of the discontent we feel about the situation in the UK.
- In May 2013, LDUK group members took part in the Worldwide Lyme Disease Protest outside the Department of Health in London. We raised awareness and educated 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 a considerable amount of media coverage.
- LDUK members 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 that Lyme becomes 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.
- Group members contributed to an awareness video to show the world how Lyme disease has impacted them.
- Over the summer of 2013, LDUK members contributed to a big media drive with many of us featuring in local and national publications telling our stories.
- In October 2013, a number of group members went to a 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 59 questions LDUK group members had prepared and sent in advance. We hoped that this would encourage dialogue between PHE and our patient group and the questions were answered.
- In December 2013, we were nominated for several Wego Health Activist Awards including Best in Show: Community/forum and Best in Show: Facebook.