Newsletter November 2015

IRISH ISSUES

New Ward for Crumlin

The new 5  bed ward has been built at the end of St Josephs ward which is an orthopedic ward.

There was a delay with the opening of the new ward. Patients are being admitted to the new rooms while the original ward is being renovated. It will all be officially opened in December or January.

The hospital asked us to help with the parents room in 2 ways.

They looked for suggestions on what was required for a parents room. Members contacted us with suggestions.

They also wanted to see whether people wish to donate money for some items that will be used in the parents room. We asked anyone who wished to donate to send in donations. Thanks to everyone for your contributions. We raised €1000. The hospital are delighted.

Yellow Alert Campaign

We want every district nurse to have information on infant jaundice. The team in Crumlin is working on getting this to happen. This is in negotiation and is taking a long time.

We decided that we needed to try to other methods of getting information out is a less structured way.

We contacted the Director of Public Health Nursing. She sent an email to all of the assistant directors who passed it on to all of the local district nurses. They then requested the jaundice packs. To date we have distributed 175 packs directly to public health nurses who requested them. Since there are 1200 working public health nurses that means that the pack is in the hands of 15% of all district nurses. We consider this a result.

CLDF launched a jaundice app aimed at medical professionals in October. This gives all the information required to spot infant jaundice which could be liver disease.

Here is the link.

http://www.childliverdisease.org/Information/Baby-jaundice/Yellow-Alert-App

We sent information on the app to Crumlin hospital. We developed a press release and distributed it to organisations in the medical profession to be published in their magazines and websites. We published information to members through Facebook.

The app has a facility for the medical professionals to request a copy of the brochure which will be delivered by CLDF.

Crumlin will continue to try to get the stool chart as part of every public health nurses pack.

Therefore we now consider the project complete from CLDIs point of view.

Training

We have agreed to fund some training for the team.

Meal and Car Park vouchers

The team requested us to get set up and fund meal and car park vouchers for families who are long term stay patients.

A limited number meal vouchers have been put in place. These seem to be working well.

We are still in negotiations with the car park people to see whether we can set up a similar system for a limited number of car park vouchers.

Hepatobiliary surgery

Currently Kasai procedures are performed in London. Dr. Corbally, who used to do them, has now officially left Crumlin. The hospital has put in a training program for an existing surgeon under the supervision of the surgeons from London. We have asked when this surgery is likely to be conducted in Ireland again and we are waiting for a response.

App

CLDF are developing an app which will be used to give to children when they are starting to take over taking their own medication. It is expected to be available in February/March

 

SOCIAL AND ORGAN DONOR AWARENESS

Website

We are always looking for more stories to put on the website. Grannies, Granddads, aunts, uncles, cousins, brothers, sisters and friends all share in the experience. They are all welcome to write their story, we are sure other people’s friends and relations would like to read them.

Facebook

The Facebook page has been used to publicize the ongoing issues.

Organ Donor Awareness

There were a number of articles in the national press. We are looking for anyone who would be happy to put their stories when the press asks us for a family to talk to.

When the press approaches us they usually ask us for information on how many children had transplants in the previous year. Due to a change in policy these enquiries now have to go to the press office in Crumlin and not the team. This delay can cause problems and we have had articles issued without numbers recently. We have applied to the press office to try to get this information every year. We would hope to publish it on the web site.

This has still not happened though we keep chasing the press office.

Family Fun Day

We had a great family fun day in Tayto Park on Saturday 3rd October. Over 100 people attended.

It was a cold day but it was bright and dry. The children and their parents had a great day.  We met for lunch in the middle of the day. It was great to see the families together with the children looking the picture of health.

SAVE THE DATE

We are planning to have a meeting on ———–. This will be the 5th year anniversary of the setting up of CLDI. This will be a meeting to review what we have done and to decide what we want to do for the next 5years. Please reserve the date as we would like to have a big turnout.

UK ISSUES

Treatment Abroad Scheme (“TAS”) and Payment of Flights to UK.

We know that lots of families are having trouble with getting repayment of flights from TAS.  We wrote to Aer Lingus and Ryanair looking for help with the price and help with the flights for families.  No response yet from either airline.

We also met with the Director of Nursing in Crumlin and we are going to try to meet the Minister of Health to get a fund set up so families can have their flights booked by someone in the HSE and would have the taxis, trains etc. to and from the airports repaid.

The more specific examples we have of issues that have arisen the stronger our case in looking for change. If you have had an experience of TAS please let us know. All information will be completely confidential. Contact childrensliverdiseaseireland@gmail.com

Travel Bursary

The fund is operating well and helping many families.

Emergency Bags

There are families who are told in Crumlin at short notice that they have to go to London. The bag holds some essentials that are needed. Another 10 emergency bags were given to Crumlin.

If anyone has received one of them feedback would be great. Are there any suggestions about what else could go into them? Was it useful?

Ambulance Service

The ambulance service reports their Priority 1 transfers of patients to the UK.  They have made all journeys in the time given by the hospital in London in the last 12 months (and longer).  If anyone has any feedback (good or bad) for emergency transfers to and from the UK, please let us know and we will pass it on to the ambulance service.

 

FINANCE AND ADMINISTRATION

Charity Number

We have now received the charity number. It is CHY21244. We are hoping to set up a mycharity account for anyone who wishes to raise money.

Accounts

The annual accounts are available on the website

 

Story Categories