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Getting closer to our goal of more research into personality disorder & autism

Elena and Fiona from Words That Carry On

Moving into a new year often spurs reflection on the distance travelled over the past 12 months.  At Words That Carry On we’re looking back on the first 9 months of the fund and reflecting on just how generous people can be, having propelled the fund well towards our original target. Words that Carry On emerged from a family and friends discussion on how to celebrate Lindsay’s life. In early 2018 Lindsay’s family made a huge effort to involve her friends and during one of these conversations, a notion began to emerge: that we could do something bigger than ourselves and create a legacy for Lindsay, so other people who faced her challenges could recover and live. You can read more about us here.

A few weeks later we tentatively approached the McPin Foundation, a mental health research charity that champions, in particular, expertise from experience, and to our delight they responded instantly and enthusiastically to our idea of a legacy project. In next to no time, Words That Carry On was born, with a fundraising page, website and objectives to go with it all in time for Lindsay’s London memorial service. Fast-forward to today, and we have raised £35,000 – 70% of our £50,000 target to fund research. People have been very open with their thoughts and experiences, and by donating what they can we are now at the starting line of selecting which research area we should focus upon. It feels so fulfilling to be at this stage already.

To narrow down our research focus, we worked with people with personal experience of mental health problems and in particular personality disorder, practitioners and researchers to create a short list of topics that people believe are priorities today. We’re now asking for feedback from a broader cross-section of interested groups and individuals. We want to ensure the voices of people with lived experience are fully represented in our work. Please consider helping us by having your say and filling our short survey (deadline is February 15). It only takes a few minutes to complete.

What we have found most rewarding about setting up Words That Carry On is bringing people together. Through our events, social media and conversations, we are supporting Lindsay’s network to celebrate her, her ideas, life and work and also forming links with a host of people who didn’t know her, but strongly believe in our cause and want to help us fight for it. Over the past few months, we have been approached by people with personal experience of personality disorders, autism, clinicians and professionals all of whom support the effort and encourage us to keep going – and we intend to. There is much to do as the areas we are interested in are very under-researched!

This process has also helped us too as a family and friendship group working through bereavement. None of this has been easy, but Words That Carry On provides us and many people whom Lindsay touched with a small sense of hope for the future.

2019 is the year Words That Carry On will move from planning to action, realising our ambition to commission the research that our fundraising will support. This is an exciting, new stage where we shall develop a dedicated evidence base and test new ideas around improvements to practice and approach so people with personality disorders and autism can live happy and healthy lives. Do please fill out our survey – and help us decide how to use the funds we have raised to make a difference.