Simon Harris

Raise awareness of wellbeing programme

Specific actions requested of Minister Harris regarding the need to address the needs of families affected by FACS (improved diagnosis & service provision; an investigation into the issue) and measures to be implemented to reduce the incidence of FACS in future.

Relevant Minister to attend a meeting in UCD

Detailed update on outcome of the meeting detailed above and proposed plan for 19 ALPHA One patients.::Commitment that the HSE would continue to fund the administration of the therapy supplied free of charge by the Pharma company

An introduction to PHP and a general discussion on primary health care policy in Ireland

implementation of the neuro-rehabilitation strategy and appropriate funding for ABI services.

A meeting between the HSE and the manufacturers of Translarna to negotiate treatment access for children with Duchenne Muscular Dystrophy

Establishment of new system to make ocrelizumab available to people with primary progressive MS as soon as possible

Review of current system of medications reimbursement and access

Support for request by the Irish Society of Physiotherapists (ISCP) that Physiotherapists be named on the list of health professionals as ‘referrers’ entitled to refer individuals for medical radiological/ ionising radiation procedures in the forthcoming Bill to transpose…

Correct the Record - We submitted information about successful implementation of an Electronic health record in Serbia & Macedonia::Inform elected representatives about Opportunities to Deliver Sláintecare more rapidly using technology successful overseas

That the Irish government would be proactive in requesting an extension to the public consultation on the UKs Nuclear Development Programme to allow Irish citizens to be properly informed and provide an opportunity for quality consultations

Initiation of a stakeholder group (of which IFAN will be one) to scope out the subject with a view to developing a draft policy

For the Minister to attend our launch of organ donor awareness week

We run a virtual consultation service that delivers specialist opinion from the hospital to GPs looking after heart failure patients in the community. We are looking for funding to secure our current service and expand into the North Dublin area.