PCD Day / AGM Minutes- Hilton Hotel, Kents Hill, Milton Keynes
Over 25 families and their children met at the Hilton Hotel, Kents Hill, Milton Keynes for PCD Day/AGM.
Introduction from Fiona about the PCD Family support group and the agenda for the day. Introduction by Fiona the of specialists / key speakers:
- Amanda Harris – PCD Specialist Nurse
- Terry James – Respiratory Nurse
- Rajinder Khang – PCD Specialist Physiotherapist
- Amanda Parsons – PCD Specialist Nurse
The minutes from the last AGM at Woburn Safari Park can be requested if individuals would like to read.
Achievements of last year:
- 25th Anniversary of the PCD Family Support Group – a very successful event with all supporters of the charity and individuals from the medical profession.
- Continued to support families – provided email, phone, website, forum support as well as events like the PCD Day.
- Website Update – the website was upgraded to word press and new case studies and video content was added, as well as content being separated into age related sections.
- Raising Awareness – the website achieved the highest level of hits in a year (20k) and the Family Support group continued to drive awareness via social media. Fiona and committee members attended a number of events including the PCD Medial Board Meeting, BTS Conference, European Respiratory Conference, and working with Genetic Disorders UK (Trade name Jeans for Genes Day).
- Promoting Research – supporting the RBH with biomedical research as well as taking part in the Ciliopathy Alliance and recruiting individuals for PCD Research including the 100,000 Genome project.
- Advocating for Best in Class Care for PCD Patients – continuing the Diagnostic and Paediatric Management Service across the four UK centres (3 diagnostic). Finalizing the funding for the PCD Adult service. Working with the Scottish NHS to improve access to diagnostic testing and management as well. One concern to note for 2017 is whether the congenital heart disease unit moves out of the RBH and the potential knock on impact for PCD patients that the Support Group will continue to monitor and ensure that any changes do not have a negative impact on patient care.
- Fundraising – lots of activity last year across many activities including marathons, Tough Mudder, jewellery sales etc. We will be doing the Wee Wander at the Kilt Walk in Scotland on the 17th September as well to raise awareness and fund the next Scottish PCD Day.
- Despite additional costs for 2016 due to the anniversary day, additional conference attendance and the updating of the website, increased funding raising activity meant that overall the group remained even in terms of funds for this year.
- For 2017 there are no concerns re finances.
Plans and Activities for 2017:
- Continue to support the NHS and the Diagnostic and Management Centres
- Host the PCD Medial Board Meeting in March 2018
- Continue to drive forward the Adult PCD Service and secure funding
- Support the development of the Scottish PCD Group via a new sub committee
- Work with Genetic Disorders UK to promote Jeans for Genes day in schools and generate additional awareness and fundraising
Election of Officers:
- Fiona will continue as Chairperson for another year. She was nominated and seconded.
- Myra will continue as Secretary for another year. She was nominated and seconded.
- Mick will step down as Treasurer after 12 years of service.
- General committee members Nhu, Charlotte, Lucy, Jacob, Terry, Sylvie, Liz, Gary, Sarah and Bea will continue. We have new members as well with Susi, Edel, and Alice.
- Key roles that we would require people for are: Treasurer, Events Management coordinator, Schools Coordinator (Jeans for Genes) and Website manager.
PCD Research Presentation by Amanda Harris:
Key points to take away:
- PCD is a very rare condition and consequently a lot of the guidelines on management best practice is based on research on other similar conditions that are reviewed and adapted by PCD experts.
- We need to improve evidence based guidelines based specifically on PCD patients and ensure that it drives positive health outcomes. To do this, research needs to be coordinated across all UK centres as well as working with EU and other global partners.
- If patients want to take part in research they should always carefully review the Patient Information Sheet and understand exactly what the requirements both in terms of time and treatments will be before deciding whether to proceed. They should always feel able to say no.
- It would also be helpful if there could be a mechanism on the PCD website to 1) highlight current research, 2) enable people to voice topics that they would like the medical profession to research.
Action: Jacob to work with Fiona and Amanda to determine if this is possible and how it would work in practice.
Avoiding Pseudomonas by Terri James
Full presentation available on line or Facebook Video. The presentation covers an overview of what pseudomonas is, activities to definitely avoid to minimise risk of catching it, and activities that individuals should be cautious of to reduce the risk of catching it.
The children had a great time learning about science from Kelly of Science Boffins.
Lunch too was great and an opportunity to talk to other families.
Let’s Do Physio First:
Rajinder Kang then led a workshop which explained using the ‘Red Shoe Story’ about the genetics of PCD – using red and black dots we all learnt about how PCD is passed on and it generated some interesting discussions.
Note from author – Red Shoe Story
The author would like to point out that the Red Shoe Story is an oversimplified explanation of a complex process. It is designed to engage young children to gain a basic understanding of genetics.
We were then split into groups to play a board game where we were asked to answer PCD related questions and had forfeits of physiotherapy activities and some of us even had to do frog jumps. The rest of the group listen to a story about the importance of physiotherapy. Finding A Home
Note from author – Finding a Home
The author would like to point out that ‘Finding a Home’ is a fictional story aimed to engage and encourage young children about hand hygiene, general health and the importance of doing their physio. The author is not claiming the story is an accurate representation of scientific facts.
We finished the day with a Question and Answer Session which can be viewed on our Facebook page
We also for the first time filmed our presentations which can be found on our Facebook page.
Thanks to all our families who attended and we look forward to seeing you next year.
Jacob Fries and Fiona Copeland 03-07-17