Newsletter March 2017

Below are the areas that we decided at the AGM were the priorities.


  1. Connecting people

  2. Annual day

  3. Hardship fund

  4. Emergency bags

  5. Advocacy

  6. Disseminating information



The family fun day on 1st October in Tayto Park was a great success. Ciara did a survey monkey poll to get consensus about where to go. This seems to have worked very well.


The AGM is being organized now. Date to follow.


The lunch vouchers have gone down well and are being used as specified by the team.

The hardship fund continues to be used.


a. Transport Issues

There are dreadful problems with transport to the UK. The Air Corps cannot guarantee the transfer times to the UK that had been agreed. Families have been left in a terrible position.

Aoife has been dealing with this through the cross services group set up following the Hiqua report. All of the services that are involved have been doing everything they can to get the problem resolved. Aoife will report on this at the AGM.

b. Medical Card

Currently the legislation which is required to give medical cards to those in receipt of Domicilary Care Allowence is going through the Dail.

c. New Ward

The new ward is up and running. It looks great. The parents room was kitted out by CLDI. If anyone has any suggestions for additional items required please let us know. Having looked at it I thought there was a distinct lack of colour/ pictures etc.



a. Scopes

Due to issues in the hospital there has been a long delay in scopes in Crumlin. We were delighted to hear that they are trying to clear the backlog by using Clane Hospital. It is not suitable for all of our children but hopefully it will clear some of the backlog, which also opens up space in Crumlin.

b. Jaundice program

A small number of the brochures continue to be sent out upon request.



a. Training

We have agreed to pay for 1 CNS to go to a conference in Kings College in London. It is titled ‘Liver Transplanation in children and young adults. Facing the future with the wisdom of the past.’

b. Donations

We received a very generous donation from the family and friends in memory of Dualtagh Donnelly.

The proceeds from the annual charity lunch in Howth Yacht Club were donated to CLDI. Suzie and John Murphy nominated us.