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Online PNH Patient and Family Conference – Saturday 18 March 2023
March 18 @ 10:00 am - 1:00 pmFree
Time: 10am to 1pm
9.30am – Zoom session opens for people to login.
10.00am – Welcome and introductions from PNH Support/PNH Scotland/PNH National Service
10.15am – Icebreaker to get to know one another (via Zoom break out rooms)
11.00am – Overview of PNH and updates on PNH research and clinical trials – PNH National Service
11.45am – Q&A
12.00pm – Comfort break
12.05pm – Managing Uncertainty – Lesley Howells (Lead Psychologist, Maggie’s Centre).
Lesley worked as a Clinical Psychologist in the NHS for 18 years before joining Maggie’s. She specialised in working with people juggling the demands of chronic physical health problems such as cancer, diabetes and cystic fibrosis. She is an NHS Accredited Trainer in Advanced Communication, Accredited Mindfulness Teacher and has specialist expertise in the teaching and supervision of NHS Specialist Palliative Care professionals. Since qualifying in 1991 her research and clinical focus has been families, individuals and couples facing life-changing trauma and transitions, primarily those prompted by changes in physical health (e.g. families with cystic fibrosis, diabetes).Before joining Maggie’s in 2014, she was the Clinical Health Psychology Lead for NHS Dumfries and Galloway. Lesley is also working to create a plan for provision of psychological support for the bone marrow failure patient communities as part of the Better Together Project.
12.25 – Q&A
12.40 – Break out room small group discussions on what further support/information is needed by patients/families
1pm- Conference closes