AGM Aoife O’ Gormon
AGM was conducted focusing on main issues of:
Travel for families, costs etc.
Endoscopy waiting times
New dedicated liver ward in Crumlin hospital
Aoife asked for anyone who is interested in helping to contact us.
CLDI wants ideas for our next family day. We would hope that the day would be an event to include the children.
A handout was distributed listing the activities that CLDI have been involved in this year and the accounts for 2013.
Everyone is asked to let us know if there are areas that they would like us to get involved in or input that they would like to make to the areas that we are already involved in
WHAT HAS CLDI BEEN DOING SINCE THE LAST AGM IN APRIL 2014.
IRISH ISSUES
New ward for Crumlin In December 2013 an anonymous donor agreed to fund a new five bed GI ward. We are following progress of the project that is due to be completed in December 2014.
District Nurse Campaign Previously we funded the purchase of leaflets from CLDF that were developed to give to medical professionals to diagnose and deal with liver disease. Broad agreement was reached with the HSE that it would be a good idea to give leaflets to all district nurses. Implementation has been slow. Work is still on going. In the meantime the leaflets are being sent to medics involved in the care of newly diagnosed patients.
Transitioning from Crumlin Hospital to St. Vincent’s Hospital. We have agreed that a photo frame with CLDI logo on it would be a good gift to give to children who are leaving Crumlin. We hope to have the frames soon.
Medical card
Following a number of children losing their discretionary medical cards, we met with the Office of the Ombudsman for children. They declined to help us unless we got each family to make an individual complaint.
We then approached the advocacy service of the HSE. But actions following the OurChildrensHealth campaign meant that we did not pursue our complaint to the HSE advocacy service.
We were in touch with OurChildrensHealth campaign that is putting pressure on the government to get medical cards for all children with serious conditions. Many of our members signed their petition.
The pressure on the government worked and it was announced that medical cards would be given back to those who had them revoked since 2011.
An expert group was set up by the Government to decide which groups should get automatic medical cards. CLDI made a submission to this group in June 2014 and many members made personnel submissions.
We will continue to monitor events around this issue and get involved as we can.
Training We funded 2 nurses to go to European Liver Conference in London
Crumlin Hospital We raised practical issues with the administration of the hospital which led to revision of their website to address the issues. There are new links on the CLDI website to address the issues.
Endoscopy Cuts Changes in the theatre arrangements in Crumlin have led to a decrease in the theatre time for liver patients. We have written to the hospital to express our concerns and plan to follow up on this letter.
SOCIAL AND ORGAN DONOR AWARENESS
Website
We have appealed for input to update the website. We really need information from people who have been to London recently, are newly diagnosed and from anyone who has a condition not covered by the stories so far. Please consider writing a short article about whatever you think would be of use to people who are going to be in your position in the future.
We have to shutdown the website briefly to do some maintenance. It is now up and running again.
Facebook The facebook page is very popular and has been very successful in passing information around.
CLDF Webcasts At the AGM it was suggested that newly diagnosed patients might like to speak to others who had been through it. We approached CLDF in England who did a couch web cast weekly for anyone interested. Unfortunately they had to close this service as it was not being used
Organ Donor Awareness
We attended a sports day for the Irish Transplant Games. They are trying to get more children involved.
The IKA offered us places on a skiing trip www.tackers.org. Unfortunately no one was in a position to go this year. The skiing trip is a heavily subsidized annual weeklong event for children aged between 8 and 15. Anyone interested in their child attending in 2015 or in the future please get in touch.
Deidre Faul of the Irish Transplant team put together a 2014 calendar for Organ Donor Awareness. We got involved in it and 6 of our children appeared in the photos. She donated €1270 from the proceeds to CLDI.
We asked for volunteers for Organ Donor Awareness week. Ellie Cole was seen in lots of photos in the press.
Baldonnel Day Out We had a great day at Baldonnel in November. About 80 people attended. The Aer Corps made it a fantastic day.
The Santy Express A number of our children were lucky enough to be chosen for the Santy Express in December. They had a wonderful day. This is an annual event organized by Nursing Administration in Crumlin Hospital. If you are interested in your child attending we can pass on your information to Nursing Administration.
Medical Day 27th September 2014 In conjunction with the team we have organized a medical day where expert medical personnel talk about issues that arise repeatedly in clinic. CLDI are funding the day.
AGM The AGM will take place as part of the medical day.
Next Years Event. We are looking for ideas for next years day out following on from Baldonnel and the Medical Day. We would like next year’s day out to include children so all suggestions are welcome.
UK ISSUES
Treatment Abroad Scheme (TAS) and Payment of flights to London
A very frustrating year.
After much work in summer 2013, we were told that the TAS were taking our idea and setting up an account with the airlines. This would mean parents and children could fly to and from the UK, without paying. The flight cost would go on the TAS account and the bill would be sent to the TAS. To the HSE this is the same cost as the payment that they make under the current reimbursement system.
However over a year later, there has been little to no progress on this and we are very frustrated. We are planning a new strategy for 2015 and welcome anyone’s views or ideas.
There have been significant delays in the reimbursement of flights from TAS. In May 2014 we made a complaint to HSE patient advocacy. TAS explained that the delays were due to staff shortages that we were assured had been resolved following our complaint. However we have recently heard that it is happening again. If anyone has experienced delays can they please let us know and we will follow up with TAS and HSE advocacy.
But some positives
Emergency Visas Some non-EU national parents were having trouble getting visas to go to the UK with their sick child. We got involved with the GI team and the GI team now has a contact at the British embassy for such situations.
National Aeromedic Group We continue to attend this meeting to ensure that the transport system is running smoothly. Since 2013, all liver transplant referrals have been transported within the required time.
Ambulance service We were in discussions with the ambulance services regarding potential cuts to the services that they supply for emergency transfers. We have been given assurances that our services will not be cut.
Travel Bursary The system has been operating very well with a bursary being given to any family who has to travel to the UK.
Emergency Bags These continue to be given out to parents who need them when they are going to the UK.
Questionnaire A questionnaire was given to parents who had received the travel bursary and emergency bags. The comments were overwhelmingly positive and we are grateful to those who send them. These replies help us to ensure the scheme continues to work as well as possible.
FINANCE AND ADMINISTRATION
Money We have received a number of generous donations in 2013 and also so far in 2014.
Charity Number We continue to try to get the charity number. We hope we are on the last leg.
Accounts Income and Expenditure Account and Balance Sheet for year ended 2013 are on the link below.