All good things
by Lucy Dixon
Last month we held our Annual General Meeting, where I announced that I have decided to step aside as chair of PCD Support UK. I will still very much be around but am looking forward to doing slightly different things in the role of Vice Chair: more projects, less day-to-day meetings! In my place will be the marvellous Dr Katie Dexter, who (among many other things) has managed our communications since 2019. I know that under Katie’s leadership our much-loved charity will continue to grow and develop as it has done over the past 30 plus years of its existence. So, as we start preparing for these changes - which will officially come into effect from 1st September 2023 - we thought it would be useful if I shared my experience of being your chair.
In the coming months, we will be producing some case studies to tell people’s personal PCD stories, so I will leave telling you about my own health journey for another time. What I will say is that the isolation I felt as a 20-something year-old who was constantly in and out of hospital during my university years is what first led me to get in touch with the Primary Ciliary Dyskinesia Family Support Group (as it was known) in 2014. I spoke to the then chair, Fiona Copeland, who put me in touch with someone my age called Bea. Bea and I chatted for hours, and I’ll never forget the joy of connecting to someone who knew exactly what it was like living with PCD. After years of not knowing anyone with this disease, it was so weird hearing someone with the same cough as me.
I joined the committee in 2014 and loved being among the first to hear about new research and having an opportunity to shape what we wanted from PCD services. However, when Fiona Copeland announced her intention to move on from the chair role in 2019, after a mammoth 17 years in the post, we were all a bit terrified. At that point, I had stopped working for a year, having become quite poorly after working in a massive East London state school. I was struggling with the hours and the infections and had decided to take a year off to focus on my health. This was only possible thanks to my lovely mum who let me live at hers back in Wales whilst my partner was studying in the USA (he’s an American!). Unfortunately, getting resident’s health insurance with PCD in America was unbelievably expensive, and so during this period I reluctantly agreed to take on the role of chair “for one year”! That was December 2019 and well…we all know what happened after that.
The Covid-19 pandemic was incredibly stressful for everyone but the months of isolation resulting from being deemed to be ‘clinically extremely vulnerable’ gave our committee a fresh energy to revamp the charity. Our charity objectives stayed the same: we’re here for those affected by PCD, we talk about PCD as widely as possible, and we champion research to improve its diagnosis, management and treatment. However, when I took on the role of chair, I had 3 personal goals. Here they are, copied and pasted from an email to the committee in early 2020:
· Image. Updating the website/rebranding/ making sure we look current for both patients and medics.
· Community + inclusivity. Making sure that as a charity, we appeal to all individuals affected by PCD, regardless of ethnicity, religion, gender, age etc. and that this diverse community is connected and visible.
· Empowerment. Identifying ways to empower people with PCD to take control of their health, possibly through new technologies (e.g. med tech) and better education.
There was a lot of learning on the job: I didn’t have any special qualifications or superpowers. I was just a bit of a Labrador and was excited to be able help people. I also knew that we had an opportunity to get creative, and to connect with more people who are constantly being diagnosed with this rare/not so rare disease. I am therefore really pleased to say that in addition to just about keeping things ticking over, I think the plans that I jotted down during that time have materialised.
Parents of children with PCD often worry that their child will be limited by this disease and that’s true: I don’t agree with the phrase I used to hear thrown around, that ‘people with PCD can live a normal life’, because we know that is not the case. Hours of treatments each day is not ‘normal’, but then again… what is ‘a normal life’? I am really proud to have been the first chair of PCD Support UK to live with the disease, but I also recognise the impact this can have. I work full time as a social researcher for Surrey Heartlands NHS, I still get quite unwell (for example, I’ve had 4 weeks of IV antibiotics since February), and I am unhelpfully curious – I love travelling, live music, and new hobbies. PCD doesn’t stop me, but it does mean I have to make some sensible decisions from time to time – like knowing when I need a rest!
Being your chair has been an absolute privilege and I want to give my heartfelt thanks to every single one of you: whether you are a person with PCD who has shared your story with me, or a medical professional who has given me a seat at the table and an opportunity to influence. I have never felt so challenged, fulfilled and proud to be part of this snotty, coughy, old gang.
I look forward to supporting Katie in her new position and to taking on different projects as Vice Chair, but in the meantime, here’s a look back at some of the bigger changes from the past 3 years...
1. Full rebrand and a new website:
2. PCD Live! Patient education series:
3. PCD-ENGAGE Clinical Trial (please join if you’re eligible!)
Thanks to everyone, for everything. Lucy x