UPDATE May to July 2012 This is the first update following the AGM of 21st April 2012.  It covers the activities of the group since this AGM.

Travelling to and from London on Commercial Airlines

We are in discussions with Aer Lingus and the HSE Treatment Abroad Scheme to set up a system where families could just ring and book their flights, with the cost being paid for by a HSE account.

We are also discussing with them the possibility of waiving the need for photo ID and receive assistance through the airports for children going to London for medical treatment.

Hopefully these discussions will end with a good result soon.

HIQA Report and National Aeromedic Monitoring Group

The Monitoring group was set up to ensure that the recommendations of the HIQA Report are being implemented. Aoife is the patient representative on the monitoring group.  They are making progress on getting the transport of patients to the UK to the standard our children deserve.  Being part of this allows her to raise any concerns any family have about anything that happens to them.

As part of the progress, the ambulance service are going to set up a proper system to discuss a family’s plan and journey with them over the next few months.

One area of concern has been the assumption that parents will drive their child to an airport when a call comes for a potential liver for transplant.  Through a few different channels we are trying to get this changed so that the plan for a family is that the Gardai or Ambulance Service drive a family to the airport.

Emergency Travel to London for Liver Treatments

3 or 4 times a year families find themselves travelling from Crumlin Hospital to the UK for their child’s treatment without any prior warning.

Following Tara Madigan’s great fundraising day at her school, we purchased emergency kits for the families. They include essentials to help them on their way.

The Hardship Fund

The hardship fund for those who have to travel to London has also been activated using funds from CMRF that had been donated to the hospital for the benefit of the GI and Liver unit.

Education and Information

The GI and Liver unit want to do an information campaign. This would be to increase awareness of liver disease in GPS and district nurses. They need brochures and postage. Currently we are working with Children’s Liver Disease Foundation in the UK to get brochures for them.  We will work with them to ensure that this campaign happens.

Website

The website is going from strength to strength and all contributions are welcome. In particular we would like to have some more stories to put up onto it.

Irish Donor Network

We have been invited to join this network of charities interested in organ donation.  We plan on becoming more involved soon.  If anyone is interested in partaking in these, please let Sylvia or Aoife know.

Crumlin Hospital Development

Some of you will know that the hospital has gone ahead with its development of a specialist cardiac ward.  Until this opens St Bridget’s ward remains the children’s cardiac ward.  St. Bridget’s is also the ward for liver patients, if a bed is available.  We are seeking a meeting with Nursing Administration in the hospital to find out what is planned for liver patients once the cardiac patients move to their new ward.

If you would like to get involved an anything mentioned above or would just like more information, please get in touch.

Next Update in 3 months