quarterly update Nov 2012

1. Transport to UK

In conjunction with the Treatment Abroad Scheme we have developed an information leaflet for those travelling to Kings. The leaflet now appears on www.cldi.ie. It should be available from Crumlin hospital soon.

CLDI's contribution to this leaflet is based on input from parents. It will be updated periodically so please send through your feedback that will be used for future revisions.

Following our feedback regarding difficulties families had with booking commercial flights for travelling to London the Treatment Abroad Scheme are trying to improve the systems. We are working closely with them to try to get a system which is more user friendly for families who are required to travel to Kings.

2. Hiqua report and National Aeromedical Group

We are continuing our efforts to get the recommendations from the Hiqua report implemented. We have a representative on the implementation committee to ensure that the views of the parents continue to be voiced and that the requirements of the families continue to be taken into account.

We are continuing our efforts to try to formally agree help from the Gardaí in transporting children from their homes to the airport.

3. Emergency kits

Four kits were given to the department. Three of them were used in an exceptionally busy summer. We have donated four more to the unit. These were funded from a kind donation resulting from an event run by the Madigans.

4. The Hardship Fund

The Hardship Fund is running successfully. Some money is given to families who are having financial difficulties when they have to go to London at short notice. The families have expressed their gratitude to Dearbhla and Ger.

5. Education and information

The team in Crumlin wants to conduct a campaign to educate district nurses about liver disease in babies. We are contributing to this by providing brochures from CLDF-the UK charity. These were provided to the hospital in November along with postage. Friends of the McGiverns kindly donated money for this cause.

6. Website

The website continues to attract new members. Should you wish your child's story to appear please send it on. All stories help new parents.

7. Irish donor network

The network is working on the next round of legislation covering organ donation consent and related issues.

We are setting up a sub committee who will liaise with the Irish Donor Network. They will also at what we can do to raise donor awareness. We are very keen to hear from anyone who is interested in this area.

8.   Domiciliary Care Allowance

We completed the submission on the Domiciliary Care Allowance based on the contributions received from the members. This was sent to the Department of Social Protection.

9. Finances/Bank accounts

Friends of the McGiverns and the Madigans made significant donations for specific projects.

We are working with CMRF and Crumlin to get access to the donations made for the benefit of the GI and Liver unit. There is a separate fund for money that is donated to the hospital where people say they want the money to be for the benefit of the GI and Liver unit.

We have set up bank accounts.

11. Letter looking for help

We sent an email out to try to generate input from members. If you did not receive it please let us know so we can put you on the circulation list.

12. Aer Corps 

For a variety of reasons we were not in a position to go ahead with the family day. We are prioritizing this happening next year.

13. Pediatric and Neonatal Group

This is a group to contribute to the development of for paediatric and neonatal services. We were asked to join this small group of some academics and some representatives of children's health charities.

Should anyone wish to offer opinions, expertise or become involved in any of these areas please contact us.

Update May-July 2012

UPDATE May to July 2012 This is the first update following the AGM of 21st April 2012.  It covers the activities of the group since this AGM.

Travelling to and from London on Commercial Airlines

We are in discussions with Aer Lingus and the HSE Treatment Abroad Scheme to set up a system where families could just ring and book their flights, with the cost being paid for by a HSE account.

We are also discussing with them the possibility of waiving the need for photo ID and receive assistance through the airports for children going to London for medical treatment.

Hopefully these discussions will end with a good result soon.

HIQA Report and National Aeromedic Monitoring Group

The Monitoring group was set up to ensure that the recommendations of the HIQA Report are being implemented. Aoife is the patient representative on the monitoring group.  They are making progress on getting the transport of patients to the UK to the standard our children deserve.  Being part of this allows her to raise any concerns any family have about anything that happens to them.

As part of the progress, the ambulance service are going to set up a proper system to discuss a family’s plan and journey with them over the next few months.

One area of concern has been the assumption that parents will drive their child to an airport when a call comes for a potential liver for transplant.  Through a few different channels we are trying to get this changed so that the plan for a family is that the Gardai or Ambulance Service drive a family to the airport.

Emergency Travel to London for Liver Treatments

3 or 4 times a year families find themselves travelling from Crumlin Hospital to the UK for their child’s treatment without any prior warning.

Following Tara Madigan’s great fundraising day at her school, we purchased emergency kits for the families. They include essentials to help them on their way.

The Hardship Fund

The hardship fund for those who have to travel to London has also been activated using funds from CMRF that had been donated to the hospital for the benefit of the GI and Liver unit.

Education and Information

The GI and Liver unit want to do an information campaign. This would be to increase awareness of liver disease in GPS and district nurses. They need brochures and postage. Currently we are working with Children’s Liver Disease Foundation in the UK to get brochures for them.  We will work with them to ensure that this campaign happens.

Website

The website is going from strength to strength and all contributions are welcome. In particular we would like to have some more stories to put up onto it.

Irish Donor Network

We have been invited to join this network of charities interested in organ donation.  We plan on becoming more involved soon.  If anyone is interested in partaking in these, please let Sylvia or Aoife know.

Crumlin Hospital Development

Some of you will know that the hospital has gone ahead with its development of a specialist cardiac ward.  Until this opens St Bridget’s ward remains the children’s cardiac ward.  St. Bridget’s is also the ward for liver patients, if a bed is available.  We are seeking a meeting with Nursing Administration in the hospital to find out what is planned for liver patients once the cardiac patients move to their new ward.

If you would like to get involved an anything mentioned above or would just like more information, please get in touch.

Next Update in 3 months

Minutes of AGM 21 April 2012

Minutes of AGM of CLDI of 21st April 2012

1. Newsletter giving an update of ongoing issues was issued and discussed. See updates section

2. Discussion regarding the constitution was conducted.

3. Constitution was voted on and accepted unanimously.

4. Roles were discussed and the following roles were deemed to be required

5. Roles were voted on and the following appointments were made

Constitutional Roles

• Chairperson - Aoife O Gorman

• Treasurer - Greg McDowell

• Secretary – Sylvia Webb

Additional Roles

• Social and Publicity - Suzie Murphy

• Transport to the UK – Joe McGivern, Aoife O’Gorman, Sean Madigan, John Murphy

• Website – Sylvia Webb

• Organ Donor Awareness – Nikki Thompson and John Murphy

6.  A wide ranging discussion related to the many issues on Transport to and from the UK happened. We decided that a committee approach to this issue was appropriate. There are many issues and those on the committee will take responsibility for different issues with quarterly catch ups as a minimum. Below are some of the areas that we plan to address. There are many more.

• Have people employed to get ambulance service runing the emergency transport as recommended in the Hiqua report.

• Returning of families from London by air corps

• Discussions with airlines to facilitate easy commercial flights and travel

• Flight cost

• Get patient and parent to be seen as a unit so parent can’t be left behind-1 parent minimum

• Get agreement that 2 parents can go unless there is an unusual circumstance.

• Getting to Baldonnel safely in emergency cases

• Luggage

• Getting passport requirement waived

7. Revision of Emergency transport patient leaflet.

8.  The transition from Crumlin to Vincents was discussed. Further information is being sought for a section on the web site.

9. Joe will appear on the Wednesday Midweek Show.

10. Membership forms will appear on the web site.

11. Questions were raised about fundraising that people might like to do. In principle we are not a fundraising organization.  However occasions arise where we want to be able to support. We will discuss this issue with CMRF.

12. Travel Bursary to be finalized

13. Charity number will be applied for.

14. The new hospital was discussed. It was decided that when it is becoming a reality that we will again be involved in the meeting to ensure that our concerns are taken into account.

15. Prof Corbally is not available in Crumlin so surgery all has to happen in London. We will approach the hospital to ask what the future plan is.

16. Family fun day will be held in Baldonnel. Suzie has started planning it.

17. Discussions regarding Donor awareness occurred. We will take a more active role in the organ donor network. It was agreed that all individuals could do more to promote donor awareness. Suggestions will be put on the web site.

Newsletter April 2012

CLDI Newsletter April 2012 1. Name/Logo/letterhead

Aoife O Gorman Conor Richardson

Conor designed the logo and did the letterheads required.

2. Website set up

Sylvia Webb/Conor Richardson/Teresa Yi Zhang

Ken O Brien paid. The web site is up and running on www.cldi.ie. Conor designed the logos etc. Teresa set up the emails and facebook page.

3. Support of McGivern

Joe, Assumpta and Maedhbh did an amazing job of getting things changed which had originally led to Maedhbh loosing her chance of a liver in July. They presented themselves and their case in a very measured and positive way and achieved amazing results that will benefit future children who need to go to London. We supported them in providing media comment where required.

4. Review of UK transport arrangements-Hiqua report

The hiqua report that resulted from the McGivern’s work confirmed that the emergency transport system was not systemized and worked on good will of the services involved. This showed how things had to be changed to ensure that this did not happen again.

5. Got parent rep Membership of the Hiqua Implementation body + attended meetings

Aoife worked to get a parent rep on the Hiqua Implementation team. Joe and Aoife are working to ensure that the report is implemented

6. Overseas travel

Aoife has been involved with the overseas travel section to try to get some of the systems and rules changed. She is making some progress.

7. Contact with Make a Wish Foundation

The foundation was contacted to try to clarify whether members would qualify for a wish.

8. Constitution written

The constitution has been written.

9. Rep for new hospital Aoife represented us on the group that was discussing the design of the new children’s hospital.

10. Member of organ donor network

We are members of the organ donor network. Aoife attended meetings. Aoife and Sylvia represented the group at the press launch of the Donor Awareness week.

11. Meeting organized

This meeting was organized.

12. Notices for Crumlin

We have posted notices in Crumlin outside Dearbhla’s office publicizing the group.

13. Home Tuition information/clarification

Sylvia made contact with the department of Education to clarify home tuition details and to express concerns related to how it is named on their web site.

14. Medical Finances updated

Information regarding finances that might interest members was investigated, clarified and put on the web site.

15. Psychological issues paper

Sylvia consulted with Liz Nolan regarding the psychological issues page for the web site.

16. Psychological services

Crumlin’s psychological services were clarified with Liz Nolan for the web site.

17. Actions against changes in Psychological provisions Members raised concerns that the services might have been changing in the budgeting process. There was talk that the provision that is dedicated to the GI and Liver team would be put into the general pool. This would have led to a decrease in the services that we could expect. A letter was sent to the head of the psychological department. Following phone calls we got written confirmation that they would not change it and so we could maintain our services.

18. Review of accommodation, transport to Kings and Restaurants

Annamarie and Sylvia put together information on practical issues in London.

19. Database of stories

Some members sent in their stories that have been put onto the web site.

20. Advice on contacting donors

The Donor Family Network and Kings College was contacted to get their input into the advice for the web site.

21. Hardship fund

It came to our attention that some families who need to go to London urgently are struggling with the immediate out of pocket costs. We have been working to set up a system to help in this situation. We are accessing donations that have been made to the CMRF in the name of the liver unit. It is almost ready.

22. Donor awareness

Martin Sweeney spoke on radio on Turbidy discussing the illness of their daughter Isabel and the option of living donor. He also promoted the organization on the show. He has also appeared on many newspapers.