June 2014 Newsletter
IRISH ISSUES
New Ward for Crumlin
The new 5 bed ward will be built at the end of St Josephs ward which is an orthopedic ward. Patients are being admitted to the existing St Joseph’s ward.
The team have been involved in running study days for the staff of St Joseph's. There are some nurses there who have worked on GI and Liver before. All of the staff are very enthusiastic about the training and the changes on the ward.
The building project is progressing.
Medical Information Day
We are funding a medical information day on Saturday, September 27th in the Red Cow Hotel. There will be speakers who will address issues related to living with liver disease. The team has ideas about what is to be included. We are going to ask for input from members as well so that we have specific issues addressed. More details will follow.
District Nurse Campaign
Slow progress is being made in getting the CLDF leaflets into the packs that district nurses have. Ultimately we want every district to have the CLDF pack that they can use when assessing infants.
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 agreed with the team that we would get a photo frame with our logo. This will be presented to the child by the team on their last visit. If the family wants a photo with the team they can take one on the day. We hope to have the frames soon.
Medical card
We have followed the progress of the medical card issue.
Many Members signed up to the petition on OurChildrensHealth which was a campaign to put pressure on the government to get medical cards for all children who have serious illnesses or congenital conditions. We have kept in touch with this campaign and will help them if they need further help.
In June the HSE have advertised for people to make submissions. These will be used to help an expert group to decide who would benefit most from medical cards. We are making a group submission a submission in an attempt to get our children automatic medical cards based on their conditions. We believe that it is most important that our children have access to medicine, vaccines, GPs and Hospital care whenever they need it. Please make a submission on behalf of your child before June 30th.
Drugs Payment Scheme
See medical cards above.
Training
The two clinical nurses went to go to the European Liver Conference in London. There is no funding available in the hospital. It is critical that this ongoing training is conducted so we funded the trip.
SOCIAL AND ORGAN DONOR AWARENESS
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.
The Facebook page has been used to publicize the ongoing issues.
Organ Donor Awareness
We have had a quiet few months in the area of organ donor awareness.
AGM
We will have a short AGM on the medical day in September.
UK ISSUES
Treatment Abroad Scheme (“TAS”) and Payment of Flights to UK
In April we discovered that the TAS had stopped reimbursing flight costs of families travelling to and from the UK. We lodged a compliant with the HSE and since May the TAS has started reimbursing flights again. If anyone is having trouble getting one child and one adult flight costs reimbursed please let us know.
We have continued to ask the HSE to improve their payment of flights to the UK.
Travel Bursary
The fund is operating well and helping many families.
A questionnaire was sent to the families who had received the travel bursary and the emergency kits. We have received some overwhelmingly positive responses. We will put a sample of them together and put them on the web site.
Ambulance Service
The ambulance service continues to coordinate emergency transport to the UK. They welcome all feedback. We will pass on any negative or positive feedback to the ambulance service.
FINANCE AND ADMINISTRATION
Charity Number
The application for charity number has been submitted. It will take some months for this to come in.
Accounts
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.
FINALLY
We were informed of the death of one of our adult members Angela Leddy. She died suddenly. We send our condolences to her family.