Following our meeting in April, we agreed to try to address issues with the hospital.
The Crumlin hospital web site now has lots of the information that we were looking for. The link for it has been put onto our site.
We investigated parent accommodation. The information about it is now on the website.
We approached the hospital about a dedicated ward. The hospital are hoping to start work on a new 5 bed (all en suite) ward next year dedicated to GI patients. There may need to be some fundraising to complete the ward. We will wait to be approached by CMRF (Crumlin Hospital’s charity) before we decide on our involvement.
Many members are having problems as medical cards for their children are being withdrawn. We have decided to try to get this sorted out for all our children and get the HSE to recognize children with serious liver disease as people who require medical cards. We have written to the Ombudsman for Children about this and other issues common to our children. If someone has been refused a medical card for their child and would like to complain to the Ombudsman for Children please do. It might help our cause. We will put a link to the Ombudsman’s side on the web site.
District Nurse Campaign
A meeting is being held between the GI team and the head of the district nurses next week. They are hoping to roll out an awareness campaign to all district nurses in Ireland.
Transitioning from Crumlin to St. Vincents.
When children move from Crumlin to Vincents it is a big day for the child, the family and the GI team. We are investigating what we could do to mark the occasion.
Family Fun Day
WE spent a lot of time trying to organise a family fun day in Baldonnel, for this Autumn. However our efforts have failed and there has been a change of personnel in Baldonnel again. We will make one more attempt finalize a date for the family day with them. Should that not work out we think that it is important to have a family day anyway. We will investigate the options for an alternative venue for a family fun day in Spring 2013.
Medical Information Day
The GI team suggested that we do a day where we have various professionals speaking to the group. In principle we think it is a good idea but that a family social day takes priority.
Transplant and Donor Games
Sylvia and Aoife attended a sports day in ALSAA organized by Colin White, manager of the Irish Transplant Games Team. There were not too many children there. Colin White of IKA is hoping to approach other organizations associated with transplantation to try to get more children involved. He would like to organise a team of younger children to attend the British Transplant Games and get more teenagers involved in the European and World Transplant Games. These events are a combination of fun and competitive competitions. Colin White’s schedule of activities were put onto the CLDI website. We are hoping to help him make this more inclusive for children in the future.
We would like to congratulate them on the wonderful haul of medals from the World Transplant Games in South Africa. They won 34 medals-12 of them gold. Four of the medals were won by the first Irish adult liver transplant recipient-Tony Gartland-20 years after he received his transplant.
We are always looking for more stories to put on the website. Grannies, Granddads, aunts, uncles, cousins, brothers, sisters and friends all share in the experience. They are all welcome to write their story, we are sure other people’s friends and relations would like to read them.
We contacted CLDF (UK children’s liver charity) regarding methods of having regular web chats. They said that they do them regularly but do not get a high level of attendance at them. Therefore it is not practical for us to do them. We agreed to put their details for chats and information on the CLDI website so people who needed to chat to someone could do it through CLDF. If anyone would like to contact someone in Ireland we can put them in touch.
For a variety of reasons our facebook page has been inactive for some time. The issues have now been resolved. We are planning to use facebook as an additional method of keeping members updated. If you friend our page-childrens liver disease ireland- you will get all of our posts.
Organ Donor Calendar
Deidre Faul of the Irish Transplant Team is putting together a calendar for Organ Donor Awareness. She is planning to have photo of an organ recipient for each month. She would like to include photos of children and asked us to see whether any of our children are interested. A photographer would take a photo of the child doing an activity that they enjoy. We will put this request on the website and sent out an email looking for volunteers.
Treatment Abroad Scheme and Payment of Flights to London
We are still in negotiations with the Treatment Abroad Scheme about the TAS setting up an account with an airline. This would mean parents could book flights on account and stop having to pay for them and then reclaim them.
The fund is operating well and helping many families. If people have any suggestions on this fund, please email CLDI.
Emergency Visas to the UK
In the past some parents who do not have visas for the UK have been delayed in getting to Kings to be with their children. The GI team now has a contact with the British Embassy which should overcome this issue.
The Ambulance service, NACC are looking for feedback on trips to London. They are keen to improve the service for future users and past experience is the best way to do this. We have put this request on the CLDI website and sent an email about it.
So far in 2013, we have received four very generous donations. Thanks to everyone for their efforts in raising this money. The money will be spent between the hardship fund and improving things for children in Ireland.
Further details will be in the accounts for the year ended 31 December 2013.