MINUTES OF THE PKUAI MEETING 28th FEBRUARY 2019 – THE TALBOT HOTEL STILLORGAN
Attendees : Karen Willetts, Fergus Woodcock, Pauline Woodcock, Karen Lavery, Amy Meegan (Nutricia), Fiona Kiernan, Bernadette Gilroy, Mary-Ellen O’Shea (Tralee IT), Nicola Whelan (video call).
European Parliament MEP meeting : Karen W was invited to Brussels by ESPKU to meet and inform MEPs regarding PKU and the ESPKU. Karen reported on this meeting where useful contacts were made and information shared.
Rare Disease Day 28/02/19 : PKU got a lot of coverage in newspapers, radio and TV running up to Rare Disease Day. 3 PKU people including Emer O’Reilly attended the conference “Bridging Health and Social Care” which took place this morning in Dublin but they were not at the meeting to report back.
Charity Status : This has been confirmed and enabling tax exemption for donations is in process. Charity status number : 20202487.
IPPOSI Patient education training : This takes place in UCD tomorrow and Bernadette and Karen W are attending.
Patient Register : further discussion re this was deferred as Colm was unable to be present.
PKU Research :
Mary Ellen from Tralee IT is researching the quality of life in early treated PKU and how management of PKU can be improved. She is looking for further participants to interview (over 18 yrs of age) and has funding to enable her to travel to those who are willing to participate. PKUAI will publicise this research.
Raindrop – Rare diseases groups and professionals will be meeting with researchers from UCD on 4th April. Prof Treacy will be attending. Bernadette will also be attending and is looking for suggestions for research or any points to bring up at the meeting. Some suggestions included : the amount of extra time involved in PKU parenting and food preparation by PKU adults; quantify difficulties experienced with taking formula; problems with blood processing and results; sport and PKU; educational attainment, employment and careers in PKU adults in Ireland; teeth and oral hygiene issues in PKU.
Kuvan : we understand that Kuvan has been approved for reimbursement by the HSE Leadership Team for certain specific circumstances according to a set clinical pathway but we are waiting for official confirmation of this. Update: this has been officially confirmed and will be available from July 1st PKUAI will follow up with a comprehensive update.
LTI scheme : there is no further information regarding Mevalia low protein foods or Cambrooke products and the Mater 30 day study. Vitaflo and Nutricia are waiting to have products accepted onto GMS. The assessment process is not transparent or accountable and the PKUAI needs to challenge the process.
PKUAI Website : the PKUAI address is to be changed as Fergus and Pauline have moved.
NSPKU Conference : This takes place at the end of March and the Raffle has taken place for a sponsored place. Billy James O’Sullivan, a PKU adult, will attend with his family and report back on his experience at the conference.
International PKU day : This is 28th June and plans are being put in place possibly to include “Diet for a Day” similar to that which took place in Australia. Another suggestion to work on is for awards and publicity for restaurants which are PKU friendly – cooking pasta / pizza or including several dishes suitable for a low protein diet.
Nutricia will be present at the NSPKU conference
Event in W5 being held in Belfast
Event planned for Galway end of April and a Dublin / Wicklow event ?date
A day of education and fun to be held in October – with option to stay overnight
(venue/date not yet confirmed)
Date for next meeting : Wednesday 15th May 2019