Newsletter JUNE 2015 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 ward is expected to be ready in early July. The playroom will then be started. The entire job will be completed and opened in September.
The hospital have asked us to see whether people wish to donate money for some items that will be used to finish off the ward. We will get a final list and will circulate it.
Yellow Alert Campaign
We want every district nurse to have information on infant jaundice. The team in Crumlin is working on getting this to happen.
We have decided that we need to try to other methods of getting information out. We are in contact with a number of organizations to try to get information on line.
CLDF are developing a jaundice app aimed at medical professionals. This will give all the information required for infant jaundice. It should be available in September.
When it is available we will publicize it to the medical community in Ireland.
Publicity is an area that we are new to. If anyone has any expertise in this area please contact Sylvia on childrensliverdiseaseireland@gmail.com as we need some advice on how to proceed.
Training
We have agreed to fund some training for the team.
Meal and Car Park vouchers
We were approached by the team to see whether we could get involved in helping families who are long stay in Crumlin with meal and car park expenses. We are in negotiations with the members of Crumlin to see what we can set up.
Hepatobiliary surgery
Currently Kasai procedures are performed in London. Dr. Corbally, who used to do them, has now officially left Crumlin. The hospital has put in a training program for an existing surgeon under the supervision of the surgeons from London. We have asked when this surgery is likely to be conducted in Ireland again and we are waiting for a response.
App
Recently we were investigating whether to set up an app. This was due to be a medicine reminder and also a way to help us with children who are transitioning to taking meds themselves.
On investigation there are many medicine reminder apps. However they are not much more than alarms.
There are companies who are developing behavior modification apps which are based around gaming. This sounds very interesting. One of them is based in Ireland. And is called transplant buddies. The app however is some way off. They are developing it for adults first. We will keep in touch with them.
CLDF the UK support agency, are developing an app for the transition phase. This is probably a year away. They are happy for us to take this app when it is available. This is the most promising option.
So the final decision is that we will not develop our own app at this point.
We cannot recommend any medicine reminder apps. There are so many and none are completely what we need.
We will keep in touch with transplant buddies and CLDF offering whatever assistance they need to get their apps developed.
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
There were a number of articles in the national press. We are looking for anyone who would be happy to put their stories when the press asks us for a family to talk to.
When the press approaches us they usually ask us for information on how many children had transplants in the previous year. Due to a change in policy these enquiries now have to go to the press office in Crumlin and not the team. This delay can cause problems and we have had articles issued without numbers recently. We have applied to the press office to try to get this information every year. We would hope to publish it on the web site.
Family Fun Day
We are having a family fun day in Tayto Park on Saturday 3rd October. We have had great interest in this day out. We need to have numbers for the booking. If you wish to come but have not yet let us know please email childrensliverdiseaseireland@gmail.com.
UK ISSUES
Treatment Abroad Scheme (“TAS”) and Payment of Flights to UK.
We know that lots of families are having trouble with getting repayment of flights from TAS. We wrote to Aer Lingus and Ryanair looking for help with the price and help with the flights for families. No response yet from either airline.
We also met with the Director of Nursing in Crumlin and we are going to try to meet the Minister of Health to get a fund set up so families can have their flights booked by someone in the HSE and would have the taxis, trains etc. to and from the airports repaid.
The more specific examples we have of issues that have arisen the stronger our case in looking for change. If you have had an experience of TAS please let us know. All information will be completely confidential. Contact childrensliverdiseaseireland@gmail.com
Travel Bursary
The fund is operating well and helping many families.
Emergency Bags
There are families who are told in Crumlin at short notice that they have to go to London. The bag holds some essentials that are needed. Another 10 emergency bags were given to Crumlin.
If anyone has received one of them feedback would be great. Are there any suggestions about what else could go into them? Was it useful?
Ambulance Service
The ambulance service reports their Priority 1 transfers of patients to the UK. They have made all journeys in the time given by the hospital in London in the last 12 months (and longer). If anyone has any feedback (good or bad) for emergency transfers to and from the UK, please let us know and we will pass it on to the ambulance service.
FINANCE AND ADMINISTRATION
Charity Number
We have now received the charity number. It is CHY21244. We are hoping to set up a mycharity account for anyone who wishes to raise money.
Accounts
The annual accounts are available on the website.