There is one item that needs your urgent attention. We are going to do a campaign to get the Ombudsman for Children to get medical cards for children with liver disease. We want as many people as possible to send a letter to the Ombudsman for children in the same week the 2nd week in May-See below. We have attached a suggested template. The more letters they get the more likely that they will take up the case. Whether your child has a medical card or not please send the letter in support of the campaign.
16TH April 2016 in Red Cow
We had a very productive meeting on Saturday.
There was a broad raging discussion which covered peoples experience of CLDI and issues that they were dealing with at present.
We agreed as part of the discussion what the areas are that are priorities for CLDI into the future.
Below are some of the issues that were raised and the actions agreed upon.
Since Aoife was stepping down as the Chairman we spoke about what would be needed for the group to continue. Aoife and Sylvia do not have as much contact with the hospitals and so felt that people were needed who were closer to the day to day issues to take on actions. It is a many hands make light work situation.
A list of activities that are currently going on was put on the screen. These actions do not necessarily take much time as they have been broken down into small blocks and can be done at peoples own pace. Every quarter Sylvia will send a reminder looking for an update which would then become the newsletter-in many months nothing will have needed to be done.
It was great that so many of these activities now have someone allocated to them.
Handovers of issues to those who have volunteered. SYLVIA/AOIFE
The list is attached with the volunteers on it and there are still some spaces if anyone wishes to volunteer. Also if there is an area that you would like to be involved in with someone who has already volunteered let us know.
ACCESS TO THE TEAM
There was a discussion about access to the team in Crumlin. There was a feeling that the answering machine message is a bit unfriendly and it is unclear when the call will be returned. People would prefer to speak to the CNS rather than the Medical Reg as they do not have to explain their history.
TO DO: We will feed information back to the team SYLVIA
There was a problem where families had not gotten the information about the social welfare that they are entitled to.
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
There was a discussion about getting medical cards. It seems that politicians had been a great help to people who had received them. There were strong feelings that we needed to do something to try to get liver disease defined as an illness so people could get discretionary medical cards as people with other illness get automatically.
Template letters will be distributed. We will all send the letters to the Ombudsman for Children in the same week-2nd week in May. This will get their attention. MICHELLE/SHARON/AOIFE
Letter to the ombudsman for Children
Put advice on the website about how to get the medical card SHARON
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
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.
Contact Irene and confirm what the situation is at the moment. RORY/KAREN
Contact the Rhys Daniels Trust RORY/KAREN
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.
It was decided that we should hold an AGM every year in April as everyone there felt that they had gained a lot from it. It was decided that The Red Cow was a good venue as people would be used to coming to Crumlin and it was close to all major arteries. The AGM will be separate from the Family Fun Day which would be held in Autumn. Ideas on locations for this event would be most welcome.
Organise and AGM every April. ANNA-MARIE
Organise a family fun day every year in Autumn Ciara
Finally it was clear from the meeting that people felt that CLDI was worthwhile and that over the last 5 years that much had been achieved. People felt that it was important for the group to continue and develop.
Thanks were given to Aoife for her role in setting up the group and for the work that she had done in the last 5 years. Aoife made it clear that she is still going to chase the Treatment Abroad Scheme for improvements.
There were other issues raised which are in the minutes attached.
We all agreed that the work of CLDI was valued and should continue.
I am delighted to have been involved in CLDI and with the great input at the meeting I know that things will continue to grow and develop.