HHT Ireland | Minutes - Patient and Family Forum

HHT Ireland Minutes

Minutes of Meeting: HHT Ireland

Patient Family Forum

Maldron Hotel, Portlaoise

Saturday 19th May 2018: 10.30am – 2.30pm

Attendance: Dara & David Woods, Aodhán and Mary Quinlan, Michael MacGinty, Rosaleen Reilly, Deirdre & Larry Hogan, Marie Ralphs, Petronella McLoughlin, Sinead & Madge Crabby, Liam & Ann McCarthy, Rachel Irwin, Eilish McCarthy, Elaine Solan, MaryAnn McCafferty, Donald Whoriskey

Apologies: Pauline Guerin, John McArt, Sinead Flanagan, Orla Ryan,

Brian&Dee Scanlan and Gerard&Shirley Murray.

INTRODUCTIONS

Mary Quinlan welcomed everyone, some who have previously attended Patient Forum and some who have not. She introduced herself and asked each person, in turn, to introduce themselves and say why they are at this meeting. She said this Forum is for everybody associated in some way with HHT. We are here to share our stories, support each other and grow the HHT family e.g. HHT Ireland.

UPDATES ON HHT IRELAND LIMITED

With the aid of slides, Dara updated the meeting on the present position of HHT Ireland, a company limited by guarantee not having a share capital.

HHT Ireland has completed its registration with the Charities Regulatory Authority (CRA)
We have also finalised our registration with the Companies Registration Office (CRO)
Tax Exemption with Revenue – we are currently registering for this.
Rare Diseases Ireland (RDI) – we have requested to become a member of this group and await confirmation of same from RDI.
HHT Europe – we are also a member of a wider community – HHT Europe (hhteurope.org). We have attended many of their meetings. We need to be there as they are more advanced than us in their development and growth of their organisations.
Currently, we have a Board of Trustees of HHT Ireland: 7 members. David & Dara Woods, Mary Quinlan, Elaine Solan, Gerard & Shirley Murray & Liam Trundle. Others would be very welcome as we are actively seeking new trustees.

2.1. RAISING AWARENESS: WHAT HAS BEEN HAPPENING?

Women’s Mini Marathon June 2017
Tour de Burren Cycle (Ballyvaughan) June 2017
Annual Summer BBQ Sept 2017
Christmas Chandelier Sessions Dec 2017
Cork Shave-athon Feb 2018
Rare Disease Day Feb 2018- last day of February every year
RTE Today Show Feb 2018
LMFM & Cork 96FM Feb 2018
UCD4HHT April 2018
Band on the Run – take your blue HHT wristband where you go and take some photos of wherever you are and/or with well-known personalities and post on HHT Ireland Facebook Community page

2.2. STILL TO COME in 2018

Women’s Mini Marathon June 2018
Tour de Burren Cycle June 2018
Tesco Bag-Packing Artane, Dublin 5 on 1^st& 2^ndSept 2018
Annual Summer BBQ Sat 8^th Sept 2018

2.3. Any Suggestions from participants?

Eilish had 5 suggestions

She is a lecturer in Griffith College who have colleges in Cork, Limerick & Dublin. 2^nd Year students do a Business Plan and she will ask about engaging them to do some work for HHT Ireland
She has a Dance School and will target an event to raise awareness and funds
She will approach Limerick Tesco for HHT Charity
She suggests we do a story about HHT on Facebook to help spread awareness.
She has a good friend in Michael McNamara from 2FM radio and will talk to him.

Aodhán said he would be organising a cycle in Cork within the next month – needs wristbands and a bucket. Wristbands were made available to everyone to take home with them.

Dara suggested we should all nominate HHT Ireland in all Tesco stores’ Community Fund scheme around the country. Use info@hhtireland.org as the email.

MEMBERSHIP

3.1. Membership Fee for HHT Ireland?

Now that HHT Ireland is fully legal and constituted in the Irish State we need to address the issue of Membership and if we should become a membership organisation. What does that mean in terms of gathering statistics on HHT in Ireland and the importance of creating a database for advocacy purposes? Should we charge a fee?

It was agreed that HHT Ireland should have a membership especially for formally gathering statistics on the prevalence of HHT in Ireland; for creating a database of doctors and medical personnel who know about HHT and for advocacy purposes.

It was agreed not to charge a fee at this stage but that all HHT sufferers who are in contact with HHT Ireland should be considered “Members” of HHT Ireland and those others be considered “Supporters” of HHT Ireland.

We have 93 contacts presently on our Exel Spread Sheet. Due to GDPR, an email is being issued to those who wish to opt out of our database. Those who remain will be categorised as Member or Supporter.

It was emphasised that gathering information on all aspects of HHT and HHT patients in Ireland is vitally important for medical and statistical information purposes. This information will never be attached to or associated with individuals. Personal anonymity and transparency are guaranteed.

What do we get for membership?

Information on various aspects of HHT
Information on any new Research updates
Support and sharing of updated information
Gathering information for Statistics
Membership of HHT Europe
Membership of Rare Diseases Ireland
Close liaison with Specialist Centre, Mercy Hospital Cork (However it was noted that recent HHT patients who attended Cork were not informed about HHT Ireland or given the Blue Bands).

3.2. HHT and the 4 Provinces

Rather than having HHT Dublin-based we believe it would be great to build up communication and information and support bases in the 4 provinces. Volunteers were requested to begin the process.

Leinster

Mary Quinlan
Petronella McLoughlin

Munster

Rachel Irwin (corporate events) & Eilish McCarthy(Limerick)

Connacht

Marie Roscommon

Ulster

Michael MacGinty

Donald Whoriskey

Famous people, known and noted by participants at the meeting, who might be contacted for raising awareness events are as follows:

Brian O’Driscoll
Paul O’Connell
PJ McManus
Sean Brett of Steeltech Sheds
Irish Women’s Rugby Team

3.3. HHT Europe – Volunteers for Youth Programme & Scientific Area & Communications area.

Dara outlined HHT Europe’s call for designated volunteers in each of the representative countries of HHT Europe in the 3 areas of Youth, Scientific and Communications.

Check out treatment within EU if you can’t get treatment in Ireland….should be able to travel for treatment within EU

Scientific Group

Marie Ralphs
Petronella McLoughlin
Richael Timothy (added by Rosaleen)

It was noted that under EU law if you cannot get access to treatment in Ireland you should be able to travel to any EU country to avail of its expertise. (To be checked out)

Short break for Teas/Coffees,

WORKSHOP ON 4 KEY AREAS

Lungs
Brian
Liver
Gastro-Intestinal

The group broke into 2 groups with those affected by HHT in the Lungs & Brain in one group and those affected by HHT in the Liver & Gastro-Intestinal tract in another. We asked ourselves the following questions:

Who and Where do I attend for my HHT?
How do I take care of myself? …How to recognise symptoms….
How can we empower the Patient?

A comprehensive bio of several persons present with HHT was taken and has been kept for safe keeping in our Personal History File. If anyone wishes to view their notes, please let Dara know.

Any Other Business:

The ladies participating in VHI Womens’ Mini-Marathon in Dublin 3rd June 2018 agreed to meet up outside Shelbourne Hotel 30mns before kick-off – for a photo opportunity for Social media!

Mary Quinlan recommended a book recently written by an American HHT sufferer entitled “Living with HHT” Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia by Sara Palmer PhD. Published by Johns Hopkins Press Health Book. It is available from Amazon.

The group photo was taken for uploading onto the website & Facebook page.

End of meeting

Dara wrapped up the meeting & thanked everyone for their participation. Everyone believed the Forum was both energising & informative and gave everyone the time to share their own personal HHT stories.

Minutes

Dara Woods & Mary Quinlan

24th May 2018