Newsletter FEBRUARY 2013 1. Awareness of Childhood Liver Disease

District Nurse Campaign - The Brochures for the District Nurse Education Campaign have arrived and the GI team are working on getting them approved by Crumlin Hospital so they can be distributed to all District Nurses.

 

Organ Donor Awareness - The Irish Donor Network is getting very active in lobbying the government for proper funding and legislation for organ donation.

 

We are the only peadiatric group in the Irish Donor Network and they are keen for our group to be involved.  We are setting up a sub committee within CLDI who will liaise with the Irish Donor Network and see what we can do to raise donor awareness. We are very keen to hear from anyone who is interested in this area.

 

2. Support

Family Day - We are working on having a family day with the Aer Corp in Baldonnel this summer.

Website - The website continues to attract new members. Should you wish your family’s story to appear please send it on. All stories help new parents.

Transplant Games and associated sport and social – The Irish Kidney Association would welcome our involvement in their sports and social events for children, teenagers and adults.  Some liver children and adults are already involved and we are looking for someone to coordinate our involvement with the Irish Kidney Association in this area.  Easy job as they do all the organising, we just need to turn up!

 

3. Hospitals and Health

Transport to UK - We are continuing our efforts to get the recommendations from the HIQA report implemented.  As part of this some changes are being tested in the administration area of people going to the UK.  We would really appreciate it if anyone who has recent experience of going to London could let us know their experience. Discussions with the HSE are much easier with real examples from families.

Transition to St. Vincents – We have made contact with an adult liver transplant recipient who would like to help with the practical side of teenagers moving their care from Crumlin to St Vincents.  Would a teenager or their parent like to make up a list of questions on the move to St Vincents that we could get this lady to answer as a start to the process?

 

4. Administration

Finances - We have been negotiating with CMRF (the charity associated with Crumlin Hospital) for the release of funds held by them on behalf of the liver unit.  We are hoping to get an annual allocation of money for CLDI and the GI team.

 

This funding would be used for the hardship fund, training bursary for members of the GI the team, family day, information campaign, web maintenance etc.

 

Charity number - We should make some progress with this as we now have a volunteer.

 

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