All Ireland Forum

Please note this contains highlights from that meeting

In attendance:

Board - Chairman Elaine Healey, Treasurer Robert Gordon, Jacky Boyd - Trustee

Staff - CEO Patricia Osborne & Support Development Officer – Coreen Kelday

Ireland Delegation representatives:

Vincent Hunter, Aine Friel, Helen Lehane  

Charity Chairman Elaine Healey welcomed all to the first All Ireland Forum meeting.  

Those taking part were Treasurer Robert Gordon, Trustee Jacky Boyd, CEO Patricia Osborne & Support Development Officer  Coreen Kelday. Ireland Delegation representatives  included Volunteer Co-ordinator’ Vincent Hunter Belfast, Northern Ireland , Aine Friel Republic of Ireland youth delegate from Donegal,  and Co-ordinator from Cork Helen Lehane. Apologies were given from Niamh O’Brien whom we also wanted to attend.

First a presentation and update on where we were with the Irish Forum.

All discussed  the all Ireland Forum Charity’s Consultation Documentation and confirmed the original draft document lists 12 items on the wish list. Lists 1 which was areas the BBS can influence: ie Support, Collaboration, Other Agencies and All Ireland Event Planning.  The second lists covered areas which fall into State directed support but areas the BBS can add to and  compliment ie: Patient Registry, Healthcare Professionals -  diagnosis and treatment, disparity of services and treatment,  transition services.

Membership numbers in both the North and South of Ireland were discussed. We looked at member numbers across Ireland and all agreed to help boost numbers.  It was agreed the BBS should promote themselves more as supporting those throughout Ireland.  All present would be keen to be involved in a membership/supporter drive. E.g. sign up two supporters and you get your next membership fee waived/free! All Support Groups Volunteer Support Groups to devise a plan for this.

We discussed the BBS Strategic Plan – highlighting where we have come from in the past 5 years and looking at the new Strat Plan for 2016, and suggested during the meeting - areas would be raised as to how our plans for Ireland would fit into the BBS future planning. We discussed conference and for the BBS to host and the proposal for running more smaller/regional events would be more advantageous.  This would assist the BBS in being able to reach more families and enable members who are not keen on travelling long distances to attend meetings.

Areas of funding were discussed  prospects of “peace money” available to tap into in NI for cross border/community work and An Ireland Fund  run by American Philanthropists was discussed.

A Discussion was then had about the BBS becoming a Registered Charity in the Republic.  The BBS are looking into this.

More Meetings  in Ireland were considered first to see what the need is and to evidence numbers of people living in Ireland with OI. 

A discussion was then held regarding where to hold and event (ie Dublin or Cork) and the distance and length of travel for members. 

BBS to consider travel to Ireland to make contacts and develop links with more members and medics.  This would develop a foundation to which we could move forward with. 

We discussed in general the Health System in Ireland.  How it is completely different to that of the UK. 

Wheelchair provision in the Republic.  waiting list for Chairs by which time the initial assessment is in need of reform. 

The possibility of holding a medical symposium in the UK during 2016, and we could invite Irish medics. 

PO discussed regular contact with Medical Advisory Board and with Prof Bishop and need to explore gathering in more Irish contacts and of course adult specialists.

To gain points the Event has to be registered–queried charity commission status in Ireland.

BBS noted they are constantly checking with N Ireland CC and no immediacy to join.

A short film was then shown called Medistori at the request of Niamh O’ Brien.  This a toolkit, in a trial period in Republic which allows patients to record all their medical information in one booklit.  This is currently being offered free to BBS members. 

However the consensus was this would be a good way to make initial contact with HSE in Ireland. Discussions followed that the new toolkit would be of specific help and use in Republic of Ireland, as UK and N Ireland already have unique identifiers’ to track info.

15. Date of next meeting.

Once all action points were duly considered and staff and trustees and volunteers reported back it would be good to reconvene. Conference was suggested but all agreed there is too much activity at that weekend. November was floated and time and exact venue to be agreed.

PO and CK to explore and discuss with Chairman EH


PLEASE NOTE ADDENDUM after the meeting.

The HSE website explains the scheme as follows:

"The HSE operates a Treatment Abroad Scheme (TAS) for people entitled to treatment in another EU/EEA member state. The TAS provides the cost of approved treatments in another EU/EEA member state or Switzerland. The TAS allows a Consultant based in Ireland to refer a patient that is normally resident in Ireland for treatment in another EU member state or Switzerland, where the treatment in question meets the following criteria:

(a) The application to refer a patient abroad has been assessed and a determination given before that patient goes abroad.

(b) Following clinical assessment, the referring Consultant certifies the following:

  • They recommend the patient be treated in another EU/EEA country or Switzerland;
  • The treatment is medically necessary and will meet the patient's needs;
  • The treatment is a proven form of medical treatment and is not experimental or test treatment;
  • The treatment is in a recognised hospital or other institution and is under the control of a registered medical practitioner;
  • The hospital outside the state will accept EU/EEA form E112 (IE)"