2019 has been an extremely busy year for the charity, and for the world of Lyme in general.
With new studies being published, a high profile for a time in the national media, and news of UK research on the horizon, many exciting things have happened and 2020 looks set to be a game changer of a year.
This year, Caudwell LymeCo and its supporters raised over £37,000 towards Lyme disease research. The charity also reached over 200 people with our free Lyme awareness talks, and helped over 290 people through our patient information and advice service.
Read on for our year in review, looking back at the charity’s key activities and successes in 2019, which are largely thanks to you – our supporters and donors. We’d also like to acknowledge and thank the support of our founder and sponsor, John Caudwell, who pays for all of the running costs of the charity, so that every penny we receive from the public goes directly to Lyme research.
We’ll also look at the key developments and news from within the Lyme community.
The year began with some media profile for Lyme disease.
BBC Look North ran a feature on Lyme, for which our former CEO, Veronica Hughes provided an interview. You can watch it here.
Jeremy Vine also ran a feature on his lunchtime BBC Radio 2 show, speaking to patients who were suffering heartbreaking symptoms. You can listen to it here. Our thanks to LDUK for these recordings.
In January, we also put out our first official call for volunteers, looking for those who would like to raise awareness in their local communities, or perhaps take on challenges or hosts events to raise money towards research.
If you’re interested in volunteering, check out our volunteering webpage.
February bought unseasonably warm weather to the UK, and with it an early beginning of tick season.
Continuing with raising awareness in the media, Veronica visited the charity’s local radio BBC Radio station in Stoke to chat with them about Lyme disease and how it can be spotted, prevented and treated.
During this month, we also launched our LifeLyme membership. The fantastic supporters who since signed up to give anything from just £2 a month have now raised over £1,000 towards Lyme research in just 8 months.
If you’d like to look at join as a member, check out our LifeLyme webpage.
In March, our first fundraiser of the year, Sharon Stevenson, took part in the Bath Half Marathon in support of her partner Graeme, who suffers with Lyme disease. She raised over £1,000 towards our research fund – thank you Sharon!
We published the first ever edition of our charity newsletter, and sent a call out for responses to our second ever patient survey, asking for your experiences of doctors using the NICE Guideline for Lyme disease.
March also saw the topic of Lyme disease being brought up in parliament, as multiple MPs questioned health ministers on what was being done to improve diagnostic testing. The original question came from MP Hugo Swire, who contacted the charity beforehand for comment and input.
We shared the video of the question in parliament on our Facebook page, which was shared over 178 times and reached over 9,000 people. You can view it here.
In April we launched our FREE Lyme disease awareness and education talks, delivering our first one to staff at Staffordshire Wildlife Trust, with great feedback.
We’ve since delivered another five talks, reaching over 200 people. We hope to expand the programme and reach over 500 people in 2020.
To find out more or book a talk in your community – or to become a volunteer and deliver talks yourself – visit our talks webpage.
This month also saw a petition launched by Belinda Rigby, for a Centre of Excellence for Lyme. It ended up gathering over 10,000 signatures. Well done Belinda
We launched our brand new fundraising pack for those interested in supporting the charity, filled with ideas for all ages and capabilities.
And Nick Macleod-Ash, along with his group the WOWsers (Wrinklies on Wheels!) rode over 100km in Exmoor to raise well over £600 for the charity – thank you WOWsers!
May was extremely busy for the charity – and indeed for many in the Lyme community – as we took part in our first ever Lyme Awareness Month.
We kicked off with Wear Lime For Lyme Day on 3rd May, pics of some of our favourite green outfits can be seen here!
We also launched our first ever Lymewalks, with our fantastic supporters raising over £2,200 towards our research fund by hosting them. We’ll be looking for more hosts this year!
We also raised awareness with residents of Stoke, handing out leaflets in busy shopping centres and running tombolas at local businesses. And our social media posts with awareness raising facts reached over 30,000 during May.
An amazing community in Hereford hosted a Greatest Showman themed ball, raising over £8,400. Rosie attended and delivered an impassioned speech to those in the room, some of whom had been devastatingly affected by Lyme disease.
We had inspiring fundraisers, Rachael Gibson and Charlotte Pegg support us this month.
Both former Lyme disease sufferers, Charlotte experienced severe neurological symptoms including bilateral facial palsy, and ran the Leeds Half Marathon with a group of work friends and colleagues, raising over £1,800! Rachael suffered for over eight years without a diagnosis and has battled back to better health, raising over £760 by taking part in the Vitality 10k in London.
We are grateful and humbled by their support.
June saw the charity win a place in the London Marathon charity ballot!
Our founder, Mr Caudwell also appeared on the Jeremy Vine TV show, speaking about he and his family’s experience with Lyme disease, and why things need to improve for people in the UK.
Fundraiser Chris Sergeant rode the Chase The Sun bike ride this month, raising over £1,300 for the charity’s research fund.
The race was particularly poignant for Chris, as he had signed up to do it in support of his friend Darren who suffered extremely serious symptoms of Lyme disease, along with complications that ultimately led to him passing away in the week before the race.
Heartbreaking news, but such strength from Chris and the family, who went on to request donations in memory of Darren. Thank you.
The NICE Quality Standard was published this month, which aims to work alongside the NICE Guideline and help identify areas of improvement in the care of Lyme disease patients.
The charity was involved in the formation of this quality standard, sitting on the committee and feeding back the patient experience to help inform the quality statements that were made.
Towards the end of the month, BMJ Open published a study that sent shockwaves throughout the Lyme disease community and raised a great amount of media interest.
Rosie Milsom and John Caudwell were both interviewed for TV broadcasts about the study, which found evidence to suggest that UK annual cases of Lyme disease are three times higher in number than previously thought.
Rosie also delivered another awareness talk, this time to a group of Beavers and Cubs in Staffordshire.
Rosie was interviewed for a BBC Yorkshire piece on Lyme disease that featured Carly Ellis, a young woman who passed away in June 2019 following complications of the disease.
We have worked closely with the family, who have shown great strength and inspiration in the face of such a devastating outcome. Since her death, they have been lobbying the government to take issues surrounding Lyme disease seriously, and her young nieces, Sophie & Millie, have worked to raise awareness of the disease locally, selling our charity wristbands and running fundraising collections and bake sales.
In August, Rosie also held an awareness talk with staff at Derbyshire Wildlife Trust alongside volunteer Natalie, and appeared on local radio station 6 Towns to talk about Lyme disease and the work of the charity.
Caudwell LymeCo celebrated its third birthday this month, with some important developments and lots of activity!
John Caudwell along with Rosie and Trustees of the charity met with the Department of Health & Social Care to discuss plans for research into Lyme disease.
They acknowledged that Mr Caudwell’s lobbying and generous pledge towards research had spurred on their plans, which include a research project to find a more accurate diagnostic test, which we are in discussions to co-fund.
We have been awaiting the next government budget (delayed because of Brexit and the General Election) before talks continue.
Fab fundraiser Martin Smith cycled from John O’Groats to Lands End, raising over £3,000 to be split between Caudwell LymeCo and two other charities.
We know it was a tough slog and we’re so grateful to Martin for taking on the challenge. He did so in memory of his friend Darren, who Chris Sergeant also rode for back in June.
Rosie also delivered a free awareness talk to County Rangers at Cannock Chase District Park, as well as one to pupils at Meadowside Primary School in Gloucester, which is attended by Millie Lee, niece of Carly Ellis mentioned earlier in this article.
Rosie also appeared on BBC Radio Stoke to discuss Lyme disease.
October saw media attention again focus on Lyme disease, but this time in not such a positive light.
In response to the BMJ study in July that found higher numbers of UK cases of Lyme disease that previously thought, some doctors called a conference to which the media were invited, and argued against these findings, claiming that most people who think they have Lyme disease are actually suffering from Chronic Fatigue Syndrome. You can see our response to this here.
And during this month, one of our volunteers, Poppy who works in a veterinary practice, sent us a photo of an astonishing amount of ticks all collected from just one hedgehog, reinforcing the fact that ticks feed on small animals who can end up in your back garden, and not just on deer.
The image was shared many times on social media, eventually reaching over 3,000 people.
November saw the Calling Time on Lyme conference, hosted by Lyme Disease Clinic UK in London. This was attended by Rosie and some Caudwell LymeCo volunteers, who heard from speakers sharing the latest in their areas of research and treatment methods.
We also hosted an exhibition stand at Guidelines Live 2019, a conference for primary care health professionals to help them share best practice and make sure they’re up to date with the latest health Guidelines.
We spoke to practice nurses and GPs about their experiences of Lyme disease, took requests for leaflets, and handed out resources on the NICE Guideline, Quality Standard and GP Toolkit.
We also attended a research workshop, hosted by Public Health England and the NIHR Health Protection Research Unit for zoonotic diseases. They invited Lyme charities, patient groups and organisations to present their research priorities, and gave an update on the current status of research in the UK – as well as some agreed priority areas for future research. We hope to share the details of this meeting in due course.
One of our volunteers, Adrian delivered an awareness talk to the Inner Wheel, a women’s community group in Staffordshire.
In December, we announced our first charity ambassador, Lara Asprey.
A relationship and dating expert, businesswoman and TV star, Lara has a personal motivation for supporting the charity, as her brother Roy suffered with the disease for ten years before being diagnosed, and is still ill with symptoms from the infection.
She is passionate about helping the charity raise awareness of the disease, and will be supporting our efforts in 2020. Read her full story here.
This month also saw us run our first ever Big Give Christmas Challenge campaign.
This gave donors the chance to double their donation towards Lyme disease research, and with a target of £4,000, we ended up raising over £5,250! (Over £6,000 including Gift Aid).
Thank you to all who supported us, and to our pledger, Mr Graham Hunt, and charity champion, The Hospital Saturday Fund who provided us with the match funding.
Our future plans for 2020
As we mentioned at the beginning, we hope that 2020 will be a gamechanging year.
We aim to secure plans around a research project, deliver more free awareness talks across the UK, expand our fundraising events programme, and recruit more volunteers and ambassadors to help support our cause and raise the profile of Lyme disease and its sufferers.
If you would like to get involved, contact Rosie Milsom on 01630 620523 or email firstname.lastname@example.org.