You’ll know that we support the PCD Support Group through Fiona’s role as Chair and my occasional forays to help with goals and objectives. It’s all voluntary but important and the group has done some great things since it formed nearly 30 years ago.
The group reviews its objectives every couple of years and I have facilitated the process for the last few years. I offer a slightly detached, external perspective. This time, it was in the light of the new NHS Funded Adult Service and the need for a new Chair from 2020. Fiona has given notice of her retirement from that job.
This time, we invited the key medics in the field who gave up the Saturday morning to help us. Their input was invaluable, on top of that from the other attendees who represent every group within the patient community.
As usual, we started with the aims and objectives to ensure they are fit for the next 12-24 months. It was gratifying for the group to hear, first-hand, from the medics, how valuable the group’s contribution was and still is.
Then we reviewed the existing activities and identified anything else required. Next, we prioritised that list – the challenge of a purely voluntary group is that you never have enough resources to do what you want to do.
Finally, we explored options for resourcing the work and a way of slightly changing how the group is organised.
The output from the session will be reviewed at the January 2020 Committee meeting and then it’s onward and upwards.
Fiona spoke at this meeting as the Respiratory GeCip Patient Representative. Her role is to act as the patient’s eyes and ears in the Respiratory world regarding the 100k Genomes Project. Fiona was asked to speak about what difference she had made to being involved in the project and to encourage other clinicians and researchers to get closer to the people affected by the conditions they are researching.
It was a great interactive session in the Methodist Central Hall Westminster with over 600 delegates. Fiona was following on in the footsteps of many great leaders from the past who have spoken on this stage … including Martin Luther King and Winston Churchill.
For more information about the PCD Family Support Group please visit their website.