Hello, my name is Lucy Watts MBE and I am a new Trustee for Pathfinders Neuromuscular Alliance. I’m currently 27, I live with a (possibly unique) syndrome without a name incorporating neuromuscular, systemic and connective tissue features. It means I have very complex medical needs and I live at home In Essex with my mum and my Assistance Dog Molly. I manage a very complex Personal Health Budget package, in which I employ my own Registered General Nurses (RGNs) and PAs to manage my needs, as a large part of my needs are nursing-based, not able to be delegated to PAs. I am also very fortunate that good NHS care and palliative care means I have a fairly decent quality of life, all things considered, and do not let anything hold me back.
I’ve known the co-founders of Pathfinders, Jon Rey-Hastie and Mark Chapman, since we worked together with the Open University Sexuality Alliance, and so have been aware of Pathfinders pretty much since the beginning and always admired the charity. I was delighted to find out they were expanding to all neuromuscular diseases, and when invited to apply to become a Trustee I jumped at the chance.
I’ve led an interesting life up to this point. I spent 5 years through my mid to late teens completely bed bound, and technology was my window to the world. After doing some filming for the hospice that support me in 2011, the journalist doing the filming encouraged me to start my blog; which I did, but it took me over a year to get it sorted. I loved my blog, but I wanted more; that’s when my palliative care nurse nominated me to speak at an event in the House of Commons and in November 2013 I delivered my speech – the first speech of my life – in front of a crowd of MPs, Peers and eminent professionals within palliative and hospice care. That day I found my purpose.
I’ve worked closely with the NHS as a peer leader, sitting on the NHS Assembly and the NHS England Personalised Care Strategic Co-production Group, amongst various other boards, getting involved in lots of work across NHS England, and wider NHS trusts, services and related organisations. I’ve spoken at events locally and nationally, including giving a TEDx speech in 2019 for TEDxNHS and at national conferences, as well as internationally via video link or pre-recorded video. In 2018 my words were taken to the World Health Organisation, following which the WHO Director-General, Dr Tedros, requested to personally meet with him, which happened a month later whilst he was in London. We have remained friends and continue to stay in touch; my words have helped keep universal health coverage, including palliative care provisions within UHC, firmly on his agenda. I also work with a number of charities. I also run my own business, Lucy Watts Ltd, offering Independent Advocacy, Support Brokerage, consultancy, digital marketing support (for health and social care services and the third sector) and other services.
Outside work – well, I am a workaholic so not that much happens other than work – but when I force myself to take time out, I enjoy making videos and photography. I am most certainly an amateur filmmaker, mostly making factual videos and vlogs, including about my Assistance Dog Molly (who has a popular Facebook blog called Molly, Dog With A Blog), about my life, my work and relevant topics, and also make films to be played at events and in projects when I cannot do things live.
So that’s me! I look forward to getting to know you all and contributing to the work of Pathfinders. It’s a privilege to be involved in this fantastic, unique charity.