Our Children’s Voice disappointed after Harris pulls out of planned meeting

The Donegal based group Our Children’s Voice has expressed disappointment after Health Minister Simon Harris pulled out of a planned meeting at short notice and instead sent Junior Minister Finian Mc Grath to represent him.
This was a follow to a previous meeting at which the group made the case for childrens’ hospice facilities in the North West region, outreach clinics in Donegal, and more respite provision.
Our Children’s Voice spokesperson Gina Grant says they were deeply disappointed that Minister Harris did not attend………..

Statement in full –
Our Children’s Voice conducted a series of meetings yesterday the 24-05-17 with Deputy Gerry Adams TD & members of his party, Deputy Michael Martin TD & members of his party, and then with Minister Finian Mc Grath. We brought submissions from parents in Donegal.
We were terribly disappointed to receive last minute apologises from Minister Harris. It was on his request we have this follow up meeting after our meeting with him on the 10-12-16 in Letterkenny University Hospital. He informed us Minister of State for Disability Finian Mc Grath would meet us in his absence.
The meetings in Leinster House afforded us the opportunity to make presentations to cross party leaders about the on-going problems faced by families with regard of nursing respite in/out of the home and end of life care for our children. Families feel isolated and desperate due to complete lack of communication and empathy from management including senior management in Donegal HSE.
Our Children’s Voice spoke of the difficulties faced by sibling as- well as parents when no reliable supports are given.
Members of ‘Our Children’s Voice’ sent several submissions stating the untold mental & physical toll that comes from feeling unsupported when caring for a child with high complex needs. The ‘Intense Parenting’ that is required has effects on all the family. They spoke of the current nursing respite system that they feel  is totally inadequate, indeed, the findings of a survey recently under-taken by the HSE in Donegal reflects the deep dissatisfaction with the services (or lack of) been provided by the HSE at present.
The meetings were very proactive; it was refreshing to hear some suggestion and practical measures on the possible way we could move forward.
Minister of State for Disability Mr Finian Mc Grath TD was understandably shocked by the allegations made in the submissions and personal testimony against the HSE. He said he would be discussing this with Minister for Health Mr Simon Harris TD in greater detail.
We feel we have to give a voice to the voiceless; children with high medical/physical complex needs and their families are too often ignored. We are ever mindful of the fact the parents are reluctant to speak out about their treatment fearful of what the repercussions of doing so may bring.