Meeting of Children’s Liver Disease Ireland on 28th April 2013 Thanks to those who came to the meeting and contributed. The most important part of the meeting is meeting people who have a similar experience with one of their children.

Apart from people sharing their child’s experience to date, below are the main topics discussed in the meeting, with the resulting action points.

Crumlin Hospital Discussed Points • Difficulty Parking • Poor parent accommodation. • Food – Told there is a delivery service to ward, food cart. Breakfast, Lack of ability to have coffee in room on ward. • Loud banging doors, loud music on corridor • No shower/one shower on wards • Crumlin should have parent representative body but haven't set it up. We would be able to bring these things up to this body. • Lack of Dedicated Ward

Action Points • Put information on Crumlin Hospital on web site in a similar way to Kings Hospital. • Prepare/Find an admission sheet with useful information including about showers and canteen • Get Hospital to set up a Parent Representative Body • Review parent accommodation - Find out the criteria for Ronald McDonald House, Other houses near hospital, Look at funding an apartment or house close to the hospital. • Lack of Dedicated Ward – a. Contact consultants to see what they need clinically, b. Follow through to get what they need

Transplant and Donor Games Discussed Points • Colin White from Irish Kidney Association runs the Irish Team for the British, European and World Transplant Games and would like to get more liver transplanted children involved. • We are looking for children who would like to get involved. • The meeting agreed that CLDI would help fund travel to transplant games for members • Kings bring group skiing. Must be aged 8+.

Action Points • We will start to put the schedule of activities from Colin White on CLDI web site • We will attend 19th may sports day in Ailsa • We will find out more about King’s skiing trip

Further Meetings Discussed Points • Planned Family Day with Irish Aer Corps in Baldonnell in September • Suggestion for a day consultants, dietician, physiologist, etc a. Would children attend and be minded? b. Other groups get it paid for by drug companies c. Suggestion that we should get the hospital to organise it, while we strongly support. d. Marian can get pamphlets of other days for other groups that are not a conference, just fairly general and loose.

Action Points • Keep going organising Family Day in September • Discuss further day with dearbhla and ger and consultants, perhaps one for 2014.

Travel To the UK Discussed Points • Aer Corps have to have a medical person fly with a patient. • One family’s baby had to fly with the Aer Corp without either parent, as there was no room on the aeroplane. • Following 2010 Hiqa Report, this has been addressed and the Aer Corps only have one helicopter which if used, may result in a parent being left behind. • Social Worker in Crumlin was asked to travel to Kings Hospital to increase her knowledge of what families face in their travel.

Action Points • Follow those set out in the Annual Report

Organ Donor Awareness Discussed Points • Activities as outlined in Annual Report

Action Points • Ann Marie Howard is joining the sub committee • Sub committee to look at Irish Donor Network activities re proposed legislation.

Finance & Administration

Website Discussed points • Stories on website • Opinions from new diagnosed families view the website • Opinions on replying to a new member’s registration – survey etc.

Action points • Increase the information on the website. • Update website looking for more varied stories. • Add information to help new diagnosed families. • Try to gather more information from members to help but people in touch with each other.

Communication Discussed points • How best to communicate between members

Action Points • Continue with Quarterly Updates • Email for any major news • Look at UK charity’s CLDF’s forum for families to see if we to add onto it.