DEBRA Ireland

Lobbying Organisation DEBRA Ireland

Date published 13 Sep, 2016

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 May, 2016 to 31 Aug, 2016

Specific Details The funding of the Home Nursing Support for Patients living with EB in Ireland

Intended results The HSE/ Department of Health to 1)fund a full-time EB Outreach Nurse, 2) Fund 2 additional full time EB nurses based in OLHCH & 3) Reinstatement of the full-time EB nursing post in SJH.

Name of person primarily responsible for lobbying on this activity Fiona Aherne

Did any Designated Public Official(DPO) or former Designated Public Official(DPO) carry out lobbying activities on your behalf in relation to this return? You must include yourself, and answer Yes, if you are a current DPO or a DPO at any time in the past. (What is a Designated Public Official?) Yes

Current or Former Designated Public Official(s)

Senator Colm Burke (Currently employed as a DPO) Senator (Dáil Éireann, the Oireachtas)

Did you manage or direct a grassroots campaign? Yes

What is the directive you gave to the grassroots campaigners? To secure a meeting with The Minister for Health and Minister for Disability

Was this lobbying done on behalf of a client? No

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Email (31-50)

The following DPO's were contacted requesting a meeting: Minister Harris, Senator Colm Burke, Minister McGrath, Deputy Caoimhin O Caoilain, Deputy Billy Kelleher, Deputy Kate O' Connell.

Phone call (21-30)

Numerous follow up phone calls were required to confirm initial emails had been received. We are yet to receive a response from Deputy O Caolain and Deputy O Connell.

Meeting (1)

DEBRA Ireland met Minister McGrath at Leinster House 2000 on 2nd August 2016.

Submission (1)

DEBRA Ireland forwarded an expression of Interest for inclusion in the upcoming Advisory & Consultative Group on personalised budgets for people with disabilities.

Letter (2-5)

DEBRA Ireland sent a letter of congratulations to Minister Katherine Zappone on the AIM model. An acknowledgement for this was received. A letter of acknowledgement of our meeting request was received from the Department of Health. A subsequent letter was then received suggesting action to be taken by DEBRA Ireland prior to meeting Minister for Health.

Social Media (11-20)

Ongoing relationship building on Twitter and Facebook with DPA's.

Designated public officials lobbied

The following DPOs were lobbied during this return period on this specific Subject Matter Area. These DPOs were involved in at least one of the Lobbying Activities listed above, but not necessarily all of them. As returns are specific to a Subject Matter Area the above Lobbying Activities may be associated with multiple returns.

Simon Harris Minister (Department of Health)

Kate O'Connell TD (Dáil Éireann, the Oireachtas)

Finian McGrath TD (Dáil Éireann, the Oireachtas)

Billy Kelleher TD (Dáil Éireann, the Oireachtas)

Caoimhghín Ó Caoláin TD (Dáil Éireann, the Oireachtas)