I was invited to speak at the BEAT-PCD conference this year on how patient organisations can have an impact on driving patient services. The audience were keen to hear how our small group has managed to help secure funding from the NHS for PCD Diagnostic Services and for the management of PCD patients throughout their lives.
I explained that as well as supporting patients we have also, over then past 26 years, built relationships with the scientists and clinicians looking after PCD patients in the UK. We have done this through numerous activities including hosting Medical Board meetings, raising awareness of the condition, telling our individual stories, speaking at conferences, helping to write PCD research grants and papers and doing joint fundraising initiatives. This has resulted in a great team work in driving forward applications to get funding from the NHS. During this time we have also built relationships with the families we support and so they too have been able to demonstrate, via case studies and surveys, why the services were needed to back up the evidence that the clinicians had.
I also had the pleasure of meeting with a group of Portugese PCD Families who are keen to set up their own PCD Support Group.
The Conference was a great opportunity to learn more about PCD. It is still reassuring, as a parent of two sons with PCD, that there is such an appetite to learn more about cilia and PCD. There were an impressive number of new young scientists presenting their research into PCD. Although some of the lectures were far too scientific for me to understand – I particularly enjoyed the lectures on how the body places organs to the left or the right (why some people get Situs inversus), how CT Scans and MRI scans are used to look at bronchiectasis, how important it is to have good nutrition if you have PCD and learning about the role of mucus in the body.
It was a great privilege to be able to go to this conference and a thoroughly enjoyable week.
By Fiona Copeland