The role of the Patient Association – making all the right connections
How & why PINNT was established. Why building a network was & remains key. Engaging with key stakeholders and taking time to understand the landscape you’re aiming to be part of. Why defining boundaries is so important along with being able to represent those on HAN is a range of forums which could mean compromise and understanding on all sides. Why ‘planning’ & ‘compromise’ are important to develop patient advocacy in the world of HAN.
Learning Objectives:
1. Defining the role of the Patient Association within the National group
2. Who to network with and why.
3. Tips on achieving a happy forum in which all parties are equal.
4. Why autonomy is so important
Speaker: Carolyn Wheatley
Chair PINNT, UK support & advocacy groups for people on HAN.
PINNT founder member of our ‘National PEN Association’ - BAPEN
Former executive officer of BAPEN, current council member.
Patient representative on a number of NHS panels.
Patient representative on ESPEN guidelines committee
Bio: Carolyn Wheatley has been on HPN for 37 years due to pseudo obstruction/IF. Founder member of PINNT, as PINNT she was a founder member of BAPEN, the national PEN Association and remains an active member. She campaigned along with another PN patient to bring ambulatory PN pumps into the UK, and continues to campaign for improvements to products & services along with sitting on several committees which aim to develop and review services for those on HAN at the highest level. She has represented PINNT on drug appraisal reviews within the NHS and was involved in commissioning key information for people on HAN when the pandemic struck. She continues to advise within the NHS.She has PN seven nights a week, 12-14 hours and enjoys living by the coast in Dorset with her husband of 36 years. She loves musical theatre and until recently travelling was a passion. Carolyn admits to enjoying a cocktail or two when she can. She has received accolades for her commitment to patient support and says with pride that receiving the John Lennard-Jones medal from BAPEN in 1999 has to be her proudest moment. Professor Lennard-Jones was the founding father of the PEN association in the UK, Carolyn was honoured to work with him to further the cause for people on HAN within the BAPEN forum.