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Report from the Parents Conference 2015
This year’s Parents Conference took place in the Sheraton Hotel in Athlone over the weekend of 19th to 21st June. We had 71 adults and 78 children booked in for the weekend, along with 36 volunteers, staff and speakers. We left the office early on Friday morning to make our way to Athlone to set up. With everything organised, we were ready for registration at 6pm. As members registered with their children it was obvious how excited the children were to meet up with their friends again, and they were all so looking forward to the weekend.
On Saturday morning the adults programme started with a session on the ‘New Children’s Hospital’. Ms. Deirdre Coakley and Ms. Suzanne Dempsey gave excellent presentations on the new state of the art plans for the hospital which will be located in St. James’s Hospital. The new hospital will bring together in one entity the 3 existing children’s hospitals; Our Lady’s Children’s Hospital Crumlin, Temple Street, and the National Children’s Hospital at Tallaght. The new hospital will be a world class facility providing paediatric services and specialist services for the country as a whole. Children who need to stay in hospital will have their own room. Every room will have an en-suite bathroom and facilities for parents to stay overnight, and there will be free Wi-Fi. There will be 32 different specialities in the new hospital. The attendance at this session was excellent and there were plenty of questions from the floor.
Although the attendance wasn’t great at the next session on the adults programme “Teenagers communicating with health care workers”, the interaction between parents and Dr. Yvonne Duane, Psychologist from Our Lady’s Children’s Hospital Crumlin was excellent. Dr. Duane was able to simplify parents’ concerns and give them tips on how to encourage their children to communicate with health care workers. More education for teenagers on relationships and sex also came up during this session and we agreed going forward that this is something that parents, Crumlin and the I.H.S. could all work on together.
While the parents were at the talks on Saturday morning the children were enjoying all sorts of activities. Haemophilia Nurse Specialist Eibhlin McLaughlin spoke to the children’s groups about self-infusion, although from what I heard I am not sure if the 4 to 7 year olds in the cubs group were very interested. They were more interested in finding out what time they were going swimming! The crèche was full to capacity and they enjoyed a morning of arts and crafts. The kidlink group enjoyed indoor party games and the youth group put together a magazine.
To read more on this event, click here
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PEP 2014
My name is Deirdre, I am the mother of four boys one of whom has severe haemophilia. Three years ago I was invited to attend a new programme being given by the IHS called Parents Empowering Parents, I had no idea what to expect other than it was a programme specifically aimed at parents of children with a bleeding disorder and of a certain age. I didn’t need any persuading to attend as I was going through a very tough time, my son was being bullied in school, he was angry about his haemophilia, and we were all feeling very stressed and unsure how to deal with things. Children don’t come with a how to operate manual, and things certainly don’t get any easier as they get older, and so I put myself forward for the PEP programme, any help was welcome, I felt like we were drowning. As a family we had not gone to many of the weekends the IHS organize, this is partly because I didn’t want to be reminded of the terrible tragedy that had befallen many of the haemophilia community, but by doing this I was isolating myself and my son from the support available at these amazing events.
To read more of this, click here
To book a place for the I.H.S. PEP Conference 2015, Friday 20th - Sunday 21st November, Clarion Hotel, Liffey Valley call Fiona on 01 657 9900.
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A special word of thanks!!!
After such a successful Parents Conference, held last week in the Sheraton Hotel Athlone, and with a record number of children (yet again, what can I say we like breaking records in the I.H.S!!!) I think it is really important to say a special thanks to our volunteers. As always it was an absolute pleasure to work alongside each and every one of you so far this year. Your energy, enthusiasm and good humour never fail to put a smile on my and most importantly the children’s faces! It may seem like you are not making a huge difference to this kids and their parents but by engaging with and looking after the children at the conferences but you do. Friendships are developed, connections are made, and with a rare disorder identification with somebody in a similar position as you is invaluable. You as volunteers facilitate that, I hope you realise how important and valued you and your work is to the Society!
V is for the Very special people that you are.
O is for the Overwhelming support & compassion you offer others during their time of need.
L is for the Little things you do that make such a difference in someone's life.
U is for the Unspoken words that sometimes mean just as much.
N is for the Need you fill when others aren't able.
T is for the Time you give of yourselves on top of your own busy schedules.
E is for the Emotional support you continually give.
E is also for the Endless energy you all seem to possess.
R is for the Responsibility you have taken on & never once complained.
S is for the Smiles you bring to patients & families by just being you.
I am looking forward to the next event already guys!!!
Endless thanks and appreciation,
Fiona Brennan, I.H.S.
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VHI Mini Marathon 2015
The Women's Mini Marathon took place on the 1st June, but the typical Irish weather meant we had gale force winds and rain on the day. I'm delighted to say the weather didn't dampen the spirits of the 37,000 women who took part, many fundraising for so many worthy causes. This 10 km race is the biggest single day charity event in Ireland and the biggest all-female event of its type in the world. Miserable weather or not, we had a great day, we had a good laugh, enjoyed the fantastic atmosphere and the sun came out as we crossed the finish line. We would like to thank everyone who took part to fundraise in aid of the IHS, we really appreciate your support, GO TEAM IHS! Personally I would like to thank everyone who sponsored me and who texted me good luck messages on the day and I was delighted to raise €598.
Nina Storey, I.H.S.
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New I.H.S. Website
The I.H.S. new look website will be launched in the coming weeks. We are very, very, very excited about it. It is a great design, that is user friendly and easy to navigate for optimum use for our members. We hope you all like it.
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To view all the presentations from the very successful European Hepatitis C Conference that took place in the Grand Hotel, Malahide, Dublin on 5th - 7th June 2015 click here
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Calling all parents of children with a bleeding disorder aged between 7 and 17 years!!!
Barretstown are holding an exclusive camp for children with bleeding disorders from October 29th – November 1st 2015, based on how successful the same camp was in 2014.
Why should my child go to Barretstown you might ask??
Firstly and importantly, Barretstown have a fully trained medical staff with doctors and nurses attending from Crumlin and various hospitals from Ireland and the UK so you can be assured your child is in the best medical care for the duration at camp.
While the prognosis for children with bleeding disorders is normal to their peers, they are faced daily with challenges that their peers will never experience. The opportunity to bring these children together in a place like Barretstown helps them to adopt a positive outlook that will stay with them well into their adult years and help them to live confidently with their condition.
Working directly with those children through my work with the I.H.S I often hear the difference a week or for that matter a weekend at Barretstown has made to these children’s self – esteem, confidence and outlook. This peer support is hugely beneficial; as the condition is rare children may often feel isolated and angry at different stages of their development.
Since the last bleeding disorders camp in November 2014, I have spoken to several parents whose children have made new friends and they are in contact and supporting each other with self-infusions and other issues. This has also offered parents the opportunity to meet with other families in the same situation which can drastically change people’s perspective on their situation. To bring this group together in a positive, fun and encouraging atmosphere to develop and foster friendships for the future, for children who may struggle with their condition - the benefit of this cannot be emphasised enough. Being a part of that camp as a volunteer I find it hard to describe the impact the weekend had on me. Barretstown is like no other place I have ever been, the smiles, the laughs and the friendships are so enduring and powerful. I left camp feeling enriched, positive and so proud of both the kids that took part and experienced so much in such a short time but also proud to be involved in a wonderful weekend.
If you are interested in sending your child to this camp, please don’t hesitate and contact me today on 01 657 9900 or you can email me on fiona@haemophilia.ie
Fiona Brennan, I.H.S.
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I.H.S. Summer Magazine
The I.H.S. Summer Magazine will be published in the coming weeks. It will be sent out to members and will also be available in pdf form on our website. All our previous magazines can be view on the I.H.S. website just click here.
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