Jacqui Cannon is the CEO of the Lewy Body Society in the United Kingdom, whose mission is to fund research into Lewy body dementia and to raise awareness about the disease.
In my previous professional life, I was a Senior Business Analyst working for multi-national companies, such as Accenture. My responsibilities and position were clearly defined. As CEO and sole paid staff of the Lewy Body Society, my roles and duties are wide-ranging from admin to public appearances.
I am not a medical professional, scientist or researcher but I am an “expert by experience”. For many years I cared for my father, who had Lewy body dementia (LBD), and my commitment to the Society’s mission is total. I was a volunteer for the charity for 9 years whilst working and was then asked by the trustees if I would like to work full time with the charity and grow it. I had transferrable skills and I wanted to share my dad’s story and to help people living with this disease.
For those of you who don’t know, LBD is the second most common form of age related dementia after Alzheimer’s, accounting for 15-20% of all people with dementia. It has symptoms similar to both Parkinson’s and Alzheimer’s diseases as well as hallucinations and extreme fluctuations of consciousness. The Lewy Body Society was founded in 2006 to support research into LBD and to raise awareness of it by educating the public, the medical profession and those in decision-making positions and now it is my job to lead it.
The Society’s mission is two-fold and information driven, dedicated to improving and facilitating research and awareness. My work involves facilitating both. My working life is a whirlwind of activity.
I am based in the North West of England but we operate nationally and I do enjoy and value my trips to London! I try to pack as much into each visit that I can.
Spreading awareness of Lewy body dementia
I am often asked to deliver awareness sessions about LBD. I present these sessions to practice nurses, Council staff, carers’ groups and hospices. It is really important that people receive a correct diagnosis of thetype of dementia that they have so that they receive the right support, the right care and the right medication. I hope to help with this in any way that I can.
Meanwhile, back at the desk…
Call for grant applications 2020
Over the last few weeks I have been dealing with questions to the charity regarding our third call for grant applications as an AMRC member (Association of Medical Research Charities) . The Society has a Specialist Advisory Committee, composed of15 members who are specialists in the field of LBD. These members are clinicians, researchers and academics. The committee review all grant applications and decide which should go forward to the trustees with a recommendation to fund. It’s my job to prepare the Specialist Advisory Committee to meet and organise the independent review of grant applications received.
Website and social media
I work with our Public Relations and Communications Officer, an independent contractor, on website content, and I can usually be found updating all our social media channels.
A typical day involves me speaking to a number of carers over the telephone. I find that they value speaking to someone who has the lived experience of caring for someone with dementia. In order to understand fully the challenges and complexities of LBD, you really have to have lived with it. Although carer support is not strictly within the remit of the society, we feel that we provide support by providing information to carers. I am proud that the Society makes people affected by LBD feel validated in a way no other organisation possibly can. We work in partnership with Dementia UK, especially referring calls around medication and paying for these calls to be taken. The Society also funds an Admiral Nurse to specially focus on LBD. Admiral Nurses work alongside people with dementia to give them one-to-one support, guidance and practical help. Our Admiral Nurse splits her work load, spending 25% working to help people with LBD, and 75% educating people and raising awareness about LBD. The role is based in London but the nurse operates UK wide.
So, what does the CEO of a small charity do? The short answer is everything and I love every minute!