March 2014 Newsletter IRISH ISSUES
New Ward for Crumlin Hospital Management at Crumlin hospital have confirmed that they have received funding from a private anonymous donor to refurbish part of an existing ward into ensuite bedrooms for GI patients. This is a big breakthrough and will help our patients who need isolation or a special bed.
Medical Information Day The GI team in Crumlin hospital have suggested holding a teenager information day. We are going to discuss this in more detail at our next meeting with them.
District Nurse Campaign The GI team in Crumlin hospital are still following up on this. Apparently it has been agreed in principle and the HSE now have to conduct training for district nurses. This has had slow progress but all involved believe that it will happen. If anyone has contact with their district nurse please ask them about this awareness campaign and let us know whether it is on the ground yet.
Transitioning from Crumlin Hospital to St. Vincents Hospital. When children move from Crumlin to Vincents it is a big day for the child, the family and the GI team. We have had a few ideas to mark this occasion and will discuss them with the GI team at our next meeting.
Dearbhla's wedding Dearbhla Conner, liver clinical nurse in Crumlin hospital got married in March. We gave her a present from CLDI.
Medical card We had a meeting with the Ombudsman for Children. They deal with individual issues so anyone who has been turned down for a medical card can send a complaint to them. However their role is to ensure that the application has been handled correctly by the HSE. So any complaint needs to have gone through all of the appeal procedures. They do not get involved in changing government policy or in fighting for something that the complainant thinks is unfair.
They suggested that we approach the Advocacy services in the HSE. We have done this. They are arranging a meeting for us with someone from the medical card section. We would like to hear from anyone who has been turned down for a medical card. The more stories we have the stronger our case is for medical cards for all children with serious liver disease.
Drugs Payment Scheme Some of the medicines for our children are not covered by the Drug Payment Scheme. This can be costly for families who have to pay for them. We have asked HSE patient advocacy to try and see if these medicines can be put on the Drug Payment Scheme and then would be covered by a medical card or the €144 per month.
SOCIAL AND ORGAN DONOR AWARENESS
Family Day at Baldonnel We had a great day out in Baldonnel in November. About 80 people attended. The Aer Corps put on a fantastic display. A report about it is in the news section on the web site.
AGM Suggestions about incorporating the children into the AGM were taken on board from the AGM last year. We are investigating options for a suitable venue for adults and children. Hopefully we will hold the AGM for 2014 in the Autumn.
Transplant Games Colin White, Manager of Irish Transplant Team, attended the Baldonnel day. Deidre Faul, a team member and winner of many gold medals also attended. They gave a good idea us of what is involved. We hope that some children will get involved as a result.
Calendar promoting Organ Donor Awareness Deidre Faul approached us to help her to develop a calendar to raise organ donor awareness, in honor of the 10th anniversary of her own liver transplant. She asked us if any children who would like to be in the calendar and the resulting photos were fabulous. All proceeds were divided between CLDI and the St Vincent's Foundation. She sold all of the calendars in the run up to Christmas. She raised €1270 for CLDI.
Website 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.
CLDF have stopped doing their couch web casts. However if anyone has used their other services please let us know what the experience was.
Facebook Our Facebook page is now in operation and is successfully spreading the word about different events. It was used to publicise the Santa Express (organised by Crumlin Hospital) which some of our families were lucky enough to attend. If anyone has anything that they think we should share please let us know.
Organ Donor Awareness Week We were asked to put someone forward for the PR for Organ Donor Awareness Week. Ellie Cole has appeared in many photos for the campaign.
UK ISSUES
Treatment Abroad Scheme and Payment of Flights to London We have not made any progress on our attempts to get flights paid up front. We are taking this issue very seriously as some families have found themselves in unbelievably difficult situations. We continue to make representations to the HSE and plan to do all we can to resolve this issue.
Hardship Fund The fund is operating well and helping many families. If people have any suggestions on this fund, please email CLDI.
Ambulance Service We have been in touch with the ambulance services regarding the financial pressures that they are under. We have been trying to ensure that the services that were put in place following the HIQA report are not compromised as a result of their financial issues. This is ongoing at present.
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.
FINANCE AND ADMINISTRATION
Charity Number Getting a charity number has been on our to do list for some time. A couple of runs have been made at it. We plan to put some effort into it again and hope to have it by the end of the year.
We have received more generous donations.
The 2014 accounts are being prepared. If anyone would like to see them before the AGM please email CLDI. They will be presented at the AGM.