1. Connecting people
2. Annual day
3. Hardship fund
4. Emergency bags
5. Advocacy
6. Disseminating information

1. a. CONNECTING PEOPLE

The next event is the AGM. Annamarie is already looking at booking this. The date will be sent out in advance so it can be put in your diaries.

Outstanding

1. REGIONAL CONNECTIONS

People felt it would be useful if families had an option to speak to someone when they get diagnosed.

TO DO: Ask people in different parts of the country to put their names on the list with phone numbers. Post them on the website. AOIFE/SYLVIA/DENISE/MICHELLE/SHARON

1. b. Annual day

What a great day we had a Tayto park. It was raining in the morning, it was cold, there was an All Ireland Football replay and still we had 79 people attending. The best comment was from a Mam who said her son was so happy to be the reason that the family got a day out that he went to the counter and said that he was the one with the sick liver.

Well done Ciara for all of the effort in making the day such a success.

1. c. Hardship fund

This is still rolling along.

1. d. Emergency bags

We have not been asked for more bags yet.

We have been asked for more lunch vouchers which we have sent on to the team.

1. e. Advoacy
   1. MEDICAL CARDS- In the budget they have confirmed that any child is in receipt of the Domicillary Care Allowance will be automatically entitled to the medical card.

This is fantastic news for our group. In our experience all children who have liver disease have been given a Domiciliary Care Allowance and therefore we expect that this means everyone in the group should get a medical card in the new year. Therefore we can now consider this issue completed.

Well done to Aoife for her continued working on medical cards over the years and to Michelle for running the campaign with the Ombudsman. We can never know what worked to achieve this but I think we can be proud of the contribution CLDI has made in getting this solution. Roll on January.

Should anyone have a different experience please let us know.

1. Aoife continues to look for improvements in the Treatment Abroad Scheme.
2. Michelle has been in touch with Colin from IKA and will report back at the AGM.

1. f. Disseminating Information

Jaundice Campaign

We continue to get a small number of requests for Yellow Alert packs. If you have any contact with your district nurses please discuss it with them. The packs are approved by Crumlin and the head of the District nurses in Ireland has sent information out about them.

Outstanding

1. There was a problem where families had not gotten the information about the social welfare that they are entitled to.

TO DO:

• We are going to develop a checklist of social welfare entitlements to be given out by the CNS to families at the beginning of their journey. It will say that further information is on the website. KAREN
• Consider speaking to the head of social work in Crumlin

1. DPS

Getting to know the pharmacist was very important in getting medicines that are not covered on the DPS scheme paid for. They seem to be able to help if they are motivated.

TO DO: Put this advice on the website. SHARON

1. ACCOMODATION IN LONDON

There seems to be a shortage of accommodation in London for families who have to go there for treatment. Families have had to stay in hotels which is unsuitable.

TO DO:

• Contact Irene and confirm what the situation is at the moment. RORY/KAREN
• Contact the Rhys Daniels Trust RORY/KAREN

1. g. OTHER AREAS

1. Accounts-   a. Accounts 2014 and 2015 are on the way. Aoife/Greg

b. Changes to do with charity numbers mean that we are reviewing this issue. -Padraig

1. We received a lovely donation from the family and friends in lieu of flowers at the funeral of Dualtaig Donnelly.

They pay all medical expenses to the hospital. All emergency transport is paid for.

When travelling on commercial airlines the only cost that is paid are the flights for the child and one parent.

CLDI have been fighting since our inception to get flights for 2 parents to travel with the child and for the travel expenses from Crumlin to Kings.

Delays have occurred in repayments of the flights. We have had confirmation that payments should be made within 4-6 weeks of application being made. Should this not happen call people below.

1. All first calls should go to Conal McLoughlan who does all claims at 056 7784548. He should be able to deal with all queries

2. Should you not be happy with the results please contact Catherine Donohue-The Manager of TAS  at catherinet.donohoe@hse.ie

If you are still not happy let us know and we will contact the Department of Health on your behalf.

childrensliverdiseaseireland@gmail.com

As a result CLDI was put in as the charity that her employer Rathangan Stud award €5000 to every year. In light of her magnificent effort it was awarded to us.

Fantastic.