CLDI Newsletter April 2012 1. Name/Logo/letterhead

Aoife O Gorman Conor Richardson

Conor designed the logo and did the letterheads required.

2. Website set up

Sylvia Webb/Conor Richardson/Teresa Yi Zhang

Ken O Brien paid. The web site is up and running on www.cldi.ie. Conor designed the logos etc. Teresa set up the emails and facebook page.

3. Support of McGivern

Joe, Assumpta and Maedhbh did an amazing job of getting things changed which had originally led to Maedhbh loosing her chance of a liver in July. They presented themselves and their case in a very measured and positive way and achieved amazing results that will benefit future children who need to go to London. We supported them in providing media comment where required.

4. Review of UK transport arrangements-Hiqua report

The hiqua report that resulted from the McGivern’s work confirmed that the emergency transport system was not systemized and worked on good will of the services involved. This showed how things had to be changed to ensure that this did not happen again.

5. Got parent rep Membership of the Hiqua Implementation body + attended meetings

Aoife worked to get a parent rep on the Hiqua Implementation team. Joe and Aoife are working to ensure that the report is implemented

6. Overseas travel

Aoife has been involved with the overseas travel section to try to get some of the systems and rules changed. She is making some progress.

 

7. Contact with Make a Wish Foundation

The foundation was contacted to try to clarify whether members would qualify for a wish.

8. Constitution written

The constitution has been written.

9. Rep for new hospital Aoife represented us on the group that was discussing the design of the new children’s hospital.

10. Member of organ donor network

We are members of the organ donor network. Aoife attended meetings. Aoife and Sylvia represented the group at the press launch of the Donor Awareness week.

11. Meeting organized

This meeting was organized.

12. Notices for Crumlin

We have posted notices in Crumlin outside Dearbhla’s office publicizing the group.

13. Home Tuition information/clarification

Sylvia made contact with the department of Education to clarify home tuition details and to express concerns related to how it is named on their web site.

14. Medical Finances updated

Information regarding finances that might interest members was investigated, clarified and put on the web site.

15. Psychological issues paper

Sylvia consulted with Liz Nolan regarding the psychological issues page for the web site.

16. Psychological services

Crumlin’s psychological services were clarified with Liz Nolan for the web site.

17. Actions against changes in Psychological provisions Members raised concerns that the services might have been changing in the budgeting process. There was talk that the provision that is dedicated to the GI and Liver team would be put into the general pool. This would have led to a decrease in the services that we could expect. A letter was sent to the head of the psychological department. Following phone calls we got written confirmation that they would not change it and so we could maintain our services.

18. Review of accommodation, transport to Kings and Restaurants

Annamarie and Sylvia put together information on practical issues in London.

19. Database of stories

Some members sent in their stories that have been put onto the web site.

20. Advice on contacting donors

The Donor Family Network and Kings College was contacted to get their input into the advice for the web site.

21. Hardship fund

It came to our attention that some families who need to go to London urgently are struggling with the immediate out of pocket costs. We have been working to set up a system to help in this situation. We are accessing donations that have been made to the CMRF in the name of the liver unit. It is almost ready.

22. Donor awareness

Martin Sweeney spoke on radio on Turbidy discussing the illness of their daughter Isabel and the option of living donor. He also promoted the organization on the show. He has also appeared on many newspapers.