1. Transport to UK

In conjunction with the Treatment Abroad Scheme we have developed an information leaflet for those travelling to Kings. The leaflet now appears on www.cldi.ie. It should be available from Crumlin hospital soon.

CLDI's contribution to this leaflet is based on input from parents. It will be updated periodically so please send through your feedback that will be used for future revisions.

Following our feedback regarding difficulties families had with booking commercial flights for travelling to London the Treatment Abroad Scheme are trying to improve the systems. We are working closely with them to try to get a system which is more user friendly for families who are required to travel to Kings.

 

2. Hiqua report and National Aeromedical Group

We are continuing our efforts to get the recommendations from the Hiqua report implemented. We have a representative on the implementation committee to ensure that the views of the parents continue to be voiced and that the requirements of the families continue to be taken into account.

We are continuing our efforts to try to formally agree help from the Gardaí in transporting children from their homes to the airport.

 

3. Emergency kits

Four kits were given to the department. Three of them were used in an exceptionally busy summer. We have donated four more to the unit. These were funded from a kind donation resulting from an event run by the Madigans.

 

4. The Hardship Fund

The Hardship Fund is running successfully. Some money is given to families who are having financial difficulties when they have to go to London at short notice. The families have expressed their gratitude to Dearbhla and Ger.

 

5. Education and information

The team in Crumlin wants to conduct a campaign to educate district nurses about liver disease in babies. We are contributing to this by providing brochures from CLDF-the UK charity. These were provided to the hospital in November along with postage. Friends of the McGiverns kindly donated money for this cause.

 

6. Website

The website continues to attract new members. Should you wish your child's story to appear please send it on. All stories help new parents.

 

7. Irish donor network

The network is working on the next round of legislation covering organ donation consent and related issues.

We are setting up a sub committee who will liaise with the Irish Donor Network. They will also at what we can do to raise donor awareness. We are very keen to hear from anyone who is interested in this area.

 

8.   Domiciliary Care Allowance

We completed the submission on the Domiciliary Care Allowance based on the contributions received from the members. This was sent to the Department of Social Protection.

 

9. Finances/Bank accounts

Friends of the McGiverns and the Madigans made significant donations for specific projects.

We are working with CMRF and Crumlin to get access to the donations made for the benefit of the GI and Liver unit. There is a separate fund for money that is donated to the hospital where people say they want the money to be for the benefit of the GI and Liver unit.

We have set up bank accounts.

 

11. Letter looking for help

We sent an email out to try to generate input from members. If you did not receive it please let us know so we can put you on the circulation list.

 

12. Aer Corps 

For a variety of reasons we were not in a position to go ahead with the family day. We are prioritizing this happening next year.

 

13. Pediatric and Neonatal Group

This is a group to contribute to the development of for paediatric and neonatal services. We were asked to join this small group of some academics and some representatives of children's health charities.

 

Should anyone wish to offer opinions, expertise or become involved in any of these areas please contact us.