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26th November 2013 Tuck shop top-ups at Crumlin

Black and white still shot of billy bunter

Billy Bunter pic courtesy of TheGuardian.com

No doubt we have all heard the mud slinging from various HSE departments, government representatives and hospital admin at Crumlin Hospital.

The spin machine was in overdrive for the week before the HSE service plan for 2014 was released to Dr. James Reilly, it’s hard to believe with sick children falling between the cracks of an expensive yet inadequate health system the focus was on “top up reform”.

A transparent payscale comparable with CEOs and consultants in the UK and Europe needs to be implemented or we will have sub-standard levels of care in our Irish hospitals, dispensing with the need to ‘top up’ salaries.

€666 million to be saved by cuts, slashing medical cards and resources to people already struggling with lifelong diseases not recognised by the HSE. (e.g.Crohn’s & Colitis)

The team on the ground in Crumlin do a fantastic job under immense pressure of worsening conditions, the staff, parents and patients of the hospital fundraise to make this a better place for families and children to attend they are ‘topping up’ the inadequate budget given to Crumlin Children’s Hospital as a centre of excellence for many diseases on the rise in children nationally.

The CMRF released this letter to supporters today, don’t stop supporting Crumlin the only ones to feel the brunt of this will be our children/teens.

READ Crumlin’s Medical Research Fundraising LETTER HERE

Irish Times articles for an alternative opinion!

Thursday November 21st Hospitals say no…

Friday November 22nd Crumlin Hospital Board to discuss top ups…

29th July 2013 New hope for a cure Maynooth NUI Crohn’s hope

NUI Maynooth and gardens“Scientists at NUI Maynooth discovered what they described as a crucial role for protein in controlling unwanted inflammation in the intestine.

Professor Paul Moynagh, who led the research team, said the identification of the protein Pellino3 may protect against the development of the incurable Crohn’s disease.

“My hope is that we can build on these findings and use Pellino3 as a new diagnostic for Crohn’s disease and as a target for new drug discovery,” Prof Moynagh said.”

GOSH-Paediatric IBD Management

Red Phone Box 1st June 2013 GOSH Conference on IBD kids London

Tadhg and I travelled with another Gutsykids parent and her son of the same age, which was great. We navigated the public transport system as the train we had planned to take from Stansted wasn’t running. We finally made it, suitcases in hand to the conference. Hopefully you will be as reassured as I was that the G.I. team at Crumlin hospital do a fantastic job with our kids/teens, delivering top quality care in some very difficult circumstances.

The day was structured with the multi-disciplinary team at Great Ormond Street Hospital all speaking on their areas of expertise in IBD from a multi-faceted point of view. Admin, CNS nurses Bonnie and Nellie, Consultants, Nutritionists, Psychologists, Social Workers and Crohn’s and Colitis Groups, I.T. and they had just started the process of putting their Parents Advocacy Group together! Meet the Team

The team were really progressive about early transition, giving the kids/teens the tools and supports to manage their own disease, making it a less scary world as they move on to adult hospitals.

CICRA have a lot of work and research done for kids/teens with IBD, click on the link to check it out on their website. The team and nurses at Crumlin are working on this process for our children and we hope to bring you more on this in the near future.

Wordmap of IBD

The pre-diagnosis stories and medications weren’t much different a few slightly different approaches from Keith Lindley BSc, MB, PhD, MRCP(UK), MRCPCH who spoke very quickly for 15 minutes or so but was very informative…(comments on his slides to follow shortly)

The narratives were sometimes long and we lost the boys after the first hour to their respective tablets, the next time they looked up was to hear the speakers, two young men … and … speak of the own journeys through life, what they had achieved, their families and parents support, relationships and goals, with the interjections of ‘and that’s all with IBD”.

They were positive in their outlook that with the right medications, diet and lifestyle changes you can live a full and happy life despite this disease!

GOSH are more progressive in sharing the information between all carers of the patient with IBD which is something we can pursue with the HSE at a later date! For more communication between health professionals and the patient we need to break down barriers of paperwork and centralise the information to make it accessible. (copy and paste this url into your browser to find out more https://improvecarenow.org/)

Links to research publications carried out in the past 3 years click on the link GOSH Research

Gerald Nash TD30th May 2013 A delegation of parents from Gutsykids met with Gerald Nash at Leinster House to discuss the deficit in the G.I. unit of a Clinical Nurse Specialist at Crumlin. We also raised concerns about the inadequate facilities (not enough toilets) and no dedicated ward for IBD kids. Gerald was very understanding having lived with Crohn’s for 23 years himself since the age of 14yrs old. He has taken the journey most of our children have been on especially the pre-diagnosis horror tales some of us have!

We spoke to him about an awareness campaign and educating the teachers carers and GP’s regarding IBD, Crohn’s and Colitis in children living in Ireland.

As the lifelong illness card from the HSE does not look very likely we want you all to push for a medical card for our kids so that they might have an independent future. Please download pdf’s and send them to your local T.D.’s we need to really push against the wave of  complacency to guarantee a Universal Care Package for theses kids no matter what hospital they attend in Ireland. (similar to the rapid access clinics for stroke, diabetes etc.)

Click on the links below;

Letter for your Local TD here

Letter for your Local TD regarding toilet facilities at Crumlin

He is committed to doing anything he can for our children and works closely with the ISCC, he will bring a list of concerns to the attention Ceann Comhairle in the coming weeks.

May 28th 2013 Congratulations, the Journey’s on us!

“Your group has won a free return trip from any destination to any destination on Iarnród Éireann’s network for up to 50 people.

The Journey’s on us is a community initiative in association with the Mooney Show on RTÉ Radio 1 to support organisations and groups in the voluntary, community, sporting and charity sector.

It’s our way of saying thank you for the great work that your group does in your community”.

This will go along way toward organising our fun day this summer! Details to come…

 March 9th 2013 A big thank you to everyone who attended and helped out at our first GutsyKids national meeting held on Saturday 9th March 2013 in The Plaza Hotel, Tallaght.  And in particular, our appreciation goes out to our guest speaker, Dr. Seamus Hussey of OLCHC for being so generous with his time and our sponsors on the day, MSD.

We can truly say that our Gutsy Kids now have, for the first time ever, a strong and determined voice in the form of our fledgling parents support group.

The turnout on the day of over 60+ concerned parents at our first meeting, with many people travelling from around the country, was very encouraging.  As indeed, was the open and generous sharing of information and “war stories” and the passionate discussion on issues to be addressed and suggestions to improve the lot of our children.

Thanks also to all of you who completed the feedback forms or separately emailed us with comments, encouragement, and offers of assistance.
If you have had any thoughts or comments since then, or remembered a talent/skill you have that could help GutsyKids, please drop an email to info@gutsykids.ie.   We’re looking for lots of helpers!

To asses the wants and needs of a Parents Advocacy Group to represent children and teens with IBD we analysed the data from the feedback forms and found the following information. The key points emerging from the feedback received to date from our meeting are summarised below:

GK-pie

The small core group of parents (new members welcome!) got together recently to discuss our first national meeting and have tentatively agreed the following next steps (time and resources permitting!):

  • Keep up the pressure lobbying for additional IBD nurse resources and better/dedicated facilities in OLCHC (including all parents lobbying local politicians)
  • Formalise Gutsy Kids as a charity and give it some shape and organisation, including set-up of bank account for fundraising / online donations
  • Devise a plan for an awareness campaign (posters, business cards, flyers, articles in medical journals, etc.)
  • Continue with build-out of our website, including looking for appropriate input from some of our children
  • Consider a summer (picnic?) family get together
  • Aim for next national meeting in Autumn, including workshop/event for children