Newsletter July 2016

Following our AGM new people have taken over responsibility for different areas. This newsletter is now a combination of their reports. Below are the areas that we decided at the AGM were the priorities and the progress in them.


  1. Connecting people

  2. Annual day

  3. Hardship fund

  4. Emergency bags

  5. Advocacy

  6. Disseminating information



Handovers have happened in most areas to the new volunteers.


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.


This information was fed back to the team. They said that they review all emails and phone messages at least once a day and usually more. They return calls as soon as they can depending on what is going on.

They agreed to review the answering machine.


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

  1. a. Letter to the ombudsman for Children if you have no medical card

  2. b. Letter to the ombudsman for children if you do have a medical card

  3. c. Letter that you can use to go to your politician to try to get a medical card. 

  • Put advice on the website about how to get the medical card SHARON

The template letter was distributed to all and letters were send to the Ombudsman. Unfortunately, the response from the Ombudsman was they did not feel that they had any examinable role in our claim. This was disappointing and Michelle was considering what our next move should be.

However, events seem to have overtaken us as there was an announcement that the government are going to issue medical cards to anyone on the Domiciliary Care Allowance. The legislation has to be passed through the Dail. We will be keeping a close eye on this.

5. 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


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

Rory and Irene’s contact information was exchanged.

Irene sent a lovely email saying ‘once again on behalf of Paediatric Liver and all of us at Kings thank you for all your support to families coming from Ireland – it really makes a huge difference to them and us knowing your support is there.’

All the very best.


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


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

Ciara has been looking for suitable venues for the varieties of ages that we look after. If anyone has any suggestions, please let us know. We would consider any locations.


  1. Website-Sharon has taken on the website and Facebook page. She has done updates and posts since taking it on.Unfortunately, the site was hacked. It has been resolved by the person who set up the site and is now operating well.

  2. Aoife is continuing to chase the Treatment Abroad Scheme for improvements.

  3. Email and contact List-Denise has been managing this area.

  4. Funstuff-Ciara has been put in contact with Crumlin for this area

  5. Jaundice-Karen has started to work on this area. There continue to be enquiries for the packs which we send out to the district nurses.

  6. Accounts-Accounts are on the way.

  7. CMRF contact and Charity number returns are now being managed by Padraig.

  8. Hardship fund-We received a lovely email from Crumlin saying that we have now helped 58 families with the hardship fund. They said a big thank you to us as a group.

  9. The British Transplant Games seems to have been a great success. One of our members Tara, won 2 gold medals. Her Dad Sean wrote about the positive experience that the family had at the event.