Newsletter January 2018

CLDI Newsletter  January 2018  

It has been a while since there was an update so I thought it would be useful to start the new year off with a summary of what has been done since the AGM last year.

One of the major issues, that came to a head last year, was about emergency transfers to the UK. The AirCorps no longer had the ability to do flights in the evening and it was unclear how families would make it to London for lifesaving operations. It had caused great distress to families who were on the waiting list.

SERVICES TO THE UK

Aoife has been working tirelessly on this issue for the last 6 years and had been greatly involved in putting forward the patient and their family’s perspective. In November a solution was found. A private air ambulance service was put in place by the HSE for patients who need transport at night. We look forward to hear how this is working for families.

In December we had a lovely day out to Lullymore Farm. The children got to meet Santy. It was lovely to see children from different families playing with each other. It was also great for the adults to catch up.

UPDATE FROM APRIL

At the last meeting we decided to write to Crumlin regarding a number of issues that were raised. We wrote regarding Brexit, CNS cover, Endoscopy and Kasai. The response noted our concerns but did little to address them.

We also wrote to Ryanair, Aer Lingus and City jet in an attempt to get access to their ‘emergency’ fares for families who have to go to London. This was also unsuccessful. If anyone has any contacts in these organizations please let us know. We’ve got to keep trying to get a better system for commercial flights to London for our children.

Some parents raised the issue that they had not been aware of all of the benefits and allowances that were available to them. The list was developed. There has been some discussion about who on the team should distribute it in Crumlin. The document is on the website.

We had hoped to do a family day in Baldonnel in 2017. Due to resource issues the AirCorps were not in a position to accommodate us. However they are hoping to run a family day before the summer to which CLDI members will be invited. We will let everyone know when this happens.

OTHER ITEMS

We want to thank Deidre Lyons for all her hard work at updating facebook.

We have had some very generous donations this year.

Amanda Groarke ran the Dublin City Marathon and Laura McCoy ran the Dublin City Marathon in aid of CLDI. The Ladies Day in Mount Juliet also chose CLDI as their charity this year. Finally GoDolphin made a contribution to the Santy day this year. We want to thank all of them.

We have been in touch with CMRF-the charity attached to the hospital. We have set up a fund within CMRF called CLDI. If anyone wants to donate to the hospital directly please tell them it is for the CLDI fund and we will get access to it.

We will still be accepting donations to CLDI directly.

The next meeting Parent Networking Meeting will be in April. The date will follow.

If anyone wishes to add to this please let me know on childrensliverdiseaseireland@gmail.com

ACCOUNTS 2014, 2015, 2016

Minutes AGM 6th May 2017

CLDI 6th May 2017

INTRODUCTION

• There are 450 children under the team in Crumlin with 66 having undergone transplants.

• We discussed the power of parents groups and the fact that groups produce much more pressure on the issue than can be produced by individuals.

• All attendees introduced themselves and explained their situations

SERVICES TO THE UK

1. TAS

The Treatment Abroad Scheme (TAS) continues to be a difficult service to deal with and here are some of the concerns raised

• Only one parent flight being funded, no consideration of siblings needing to visit children who are in Kings for a longer term

• No baggage allowance / seat allocation / flexible fares allowed

• Difficulty in getting payments sanctioned, some families can have a large backlog of payments owing to them, one mentioned their financial stress due to being owed in excess of €2000 from the TAS

• General lack of empathy and understanding from personnel in the TAS

• Backlog of payments allegedly due to staffing shortage, recent development is the promise of some temporary staff cover

• We discussed the possibility of establishing a system where families could be given a voucher/code to get a ‘Medical needs fare’ would enable a much less stressful and cumbersome way of booking travel directly with the airline

• Micheal Martin has been supportive of seeking improvements in the level of service currently being delivered. His ongoing involvement will be sought

TO DO :  a. Contact Aer Lingus and Ryanair to try to get a ‘Medical Needs Fare’. Sylvia, Aoife

b. Contact Michael Martin to discuss TAS. Susan, Aoife

c. List of tips on how to apply for TAS and how to deal with them. Susan

2. UK EMERGENCY TRANSFER ISSUES

• Baldonnel only opens between the hours of 9am to 5pm due to lack of air traffic controllers and trained pilots and the coastguard is providing cover when available. 

• The option of having an aircraft at Dublin airport is not an option due to air corps policy.

• Some families with a child currently on the transplant list have had to make the decision to move to London as transfer within the six hour window cannot be guaranteed.  Such families are currently not in receipt of any financial support from the HSE. However children currently on the transplant list for cardiac have a four hour transfer window and due to this shorter time frame these families do get financial support. CLDI believe that this differentiation is illogical and unfair.

• It was agreed that a letter from CLDI will be drafted highlighting that the current situation stating that it needs to be sorted. The letter will address the current failure to guarantee the transfer of children within the required timeframe is in breach of the HIQA recommendations set out following the investigation into McGivern case and this is causing great concern to CLDI. We will start with sending a letter to Crumlin hospital and then send another letter to the Department of Health. 

TO DO: a. Write a letter to send to Crumlin Hospital and the Department of Health. Aoife, Sylvia

3. KINGS HOSPITAL

• A number of services have changed in Kings. We are hoping that current patients of Kings will be able to help us update the website. 

TO DO: a. Update website with information. Sylvia, Karen

4. BREXIT

• Concerns were raised about the impact of Brexit on the services with Kings in the future.

The NHS has segmented the globe and apparently Ireland is well placed on the priority list.

TO DO:  a. A letter will be sent to Crumlin hospital to ask how they expect Brexit to affect the                                           services. Aoife, Sylvia

SERVICES IN IRELAND

1.NURSING STAFF-The CNS Dearbhla has gone on maternity leave. She will not be replaced until June. Everyone was very concerned about the situation.

TO DO: Letter to Crumlin regarding the the decreased staff levels. Sylvia, Aoife

2. ENDOSCOPY–the backlog of endoscopies has been alleviated somewhat by the use of a private facility in Kildare.  This is however not always suitable for Liver patients due the higher risks associated. The group have agreed to draft a letter to Crumlin to voice our concerns about the ongoing backlog in this area.

TO DO: a. Letter to Crumlin regarding Endoscopies. Sylvia, Aoife

3. KASAI -  this surgery continues to be performed in London as a surgeon has not yet been put in place in Crumlin.  CLDI to write a letter questioning the plans for this appointment / training of a surgeon and to express our concern about the current service.

TO DO: a. Letter to Crumlin regarding the future of Kasai surgery. Sylvia

4. NEW WARD – It is now up and running. Feedback from families who have used the new ward is very positive. Members who have had a positive experience are encouraged to write a letter of appreciation to CEO, to be communicated to benefactor who funded the beds.

We also need to put up a notice board and a plaque.

TO DO: a. Letters sent to Crumlin from families who have used the new ward. Susan, Evelyn

b. Encourage anyone who has used the new ward to write to the hospital with their        positive experience. Anyone who has used the new ward. 

c. Order and put up a notice board and plaque. Sylvia

5. CAR PARK VOUCHERS-

TO DO: a. Continue to try to get the vouchers. Sylvia

6. BENEFITS AND ALLOWANCE TO DO:                  a. A list of benefits, allowances and grants will be compiled and distributed to newly    diagnosed cases families?

7. REVIEW OF AGM.

• It was suggested that the activities of the meeting are not described well by calling the meeting an AGM. We could call it a Parent Networking Meeting.

• It was suggested that the dates for the AGM should be reviewed as it clashes with the communion/confirmation season.

TO DO : Have the meeting in April and call it Parent Networking Meeting. Annamarie

CONNECTING FAMILIES

1. FUN DAY

It was suggested that the fun day at Baldonnel should be organised for this year’s event. The Air Corps had said that they would love to have us again. It was a great success on the last visit.

TO DO: a. Get a contact in Baldonnel to arrange the fun day. Aoife

b. Organize the day out. Ciara

ORGAN DONATION

1. ORGAN DONATION AWARENESS

• There is a reduction in the number of livers available. It is therefore important that we get involved in organ donor awareness. 

• Michelle our coordinator for last year sent a report. She had contact with the IKA. They made some suggestions regarding promoting organ donor awareness. She also suggested that the next coordinator should be closer to Dublin as the 2 events that she was called for were difficult to attend. 

TO DO: a. Organ donor cards are available from IKA. Members can ensure that our chemists                                 have donor cards in them. All

b. IKA have a program for transition year students on line. Members could promote                               it to their local secondary schools. All

c. New Coordinator to be found. Suzie and Annamarie said that they will take it on in                            the interim. Anyone who is interested please contact us. Suzie, Annamarie, All

d. Get a list of anyone who is happy to get involved in events. Any volunteers

2. TRANSPLANT GAMES

• The transplant games take place in the UK every year. This is a great event for promoting organ donor awareness. It is also a great event for the children. Sean sent in a report about their experience of their daughter Tara who attended the event. She did really well and came away with a big medal haul. However he said his abiding memory was of two guys coming in last and second last racing each other and ‘doing what you can as well as you can’. 

TO DO: Anyone who wants to take part contact Colin White at IKA. All

ADMINISTRATION

1. ACCOUNTS Accounts were presented to the meeting

TO DO: a. Put the accounts on line. Sylvia, Aoife

2. WEBSITE A number of issues arose regarding the website.

TO DO: a. Work on facebook - Deidre (Emma)

b. Put ‘Patients like me’, on the website-Sylvia

c. connect to ‘Liver Mums’ on facebook

d. A map of Ireland of Liver disease cases to be compiled (something like the Jo Ramsey liver cases map in the UK)

3. CHARITY NUMBER A discussion was had about the renewal of the charity number. A review is being made as to whether it is required.

TO DO: Finalise whether to continue with the charity number. Padraig, Aoife

Newsletter March 2017

Newsletter March 2017 Newsletter  March 2017

Below are the areas that we decided at the AGM were the priorities.

1. Connecting people

2. Annual day

3. Hardship fund

4. Emergency bags

5. Advocacy

6. Disseminating information

1. CONNECTING PEOPLE AND ANNUAL DAY

The family fun day on 1st October in Tayto Park was a great success. Ciara did a survey monkey poll to get consensus about where to go. This seems to have worked very well.

The AGM is being organized now. Date to follow.

2. HARDSHIP FUND/EMERGENCY BAGS/LUNCH VOUCHERS

The lunch vouchers have gone down well and are being used as specified by the team.

The hardship fund continues to be used.

3. ADVOCACY

a. Transport Issues

There are dreadful problems with transport to the UK. The Air Corps cannot guarantee the transfer times to the UK that had been agreed. Families have been left in a terrible position.

Aoife has been dealing with this through the cross services group set up following the Hiqua report. All of the services that are involved have been doing everything they can to get the problem resolved. Aoife will report on this at the AGM.

b. Medical Card

Currently the legislation which is required to give medical cards to those in receipt of Domicilary Care Allowence is going through the Dail.

c. New Ward

The new ward is up and running. It looks great. The parents room was kitted out by CLDI. If anyone has any suggestions for additional items required please let us know. Having looked at it I thought there was a distinct lack of colour/ pictures etc.

4. DISSEMINATION INFORMATION

a. Scopes

Due to issues in the hospital there has been a long delay in scopes in Crumlin. We were delighted to hear that they are trying to clear the backlog by using Clane Hospital. It is not suitable for all of our children but hopefully it will clear some of the backlog, which also opens up space in Crumlin.

b. Jaundice program

A small number of the brochures continue to be sent out upon request.

5. OTHER

a. Training

We have agreed to pay for 1 CNS to go to a conference in Kings College in London. It is titled ‘Liver Transplanation in children and young adults. Facing the future with the wisdom of the past.’

b. Donations

We received a very generous donation from the family and friends in memory of Dualtagh Donnelly.

The proceeds from the annual charity lunch in Howth Yacht Club were donated to CLDI. Suzie and John Murphy nominated us.

Newsletter July 2016

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

1. VOLUNTEERS

Handovers have happened in most areas to the new volunteers.

2. 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.

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.

3. SOCIAL CARE

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.

4. MEDICAL CARD

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.

TO DO: 

• 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

6. 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

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.

7. 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

8. GETTING TOGETHER

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. 

TO DO: 

• 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.

OTHER AREAS

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.