“Our Childrens’ Voice” say their campaign for services is being stymied

our childrens voice
The support group “Our Childrens Voice”, which represents parents of children with terminal illnesses, says it feels let down by the HSE after promised advances did not materialise.
The group established in Donegal in 2014, and last year, gained national prominence when it launched a campaign for more support services locally, and sought clearance to bring children for treatment in Belfast instead of Duiblin.
A request for a Paediatric Palliative Care Outreach Nurse was approved last summer, and the group understood that post was advertised in September.
No appointment was made, and spokesperson Gina Grant says they’ve now found out that the post was only advertised this week……….

Full text of OCV statement –
Our Children’s Voice was established in October 2014 in Donegal by a group of concerned mothers who had children with life-limiting and terminal illnesses or had lost their precious child to a rare disease.  We established this group principally to highlight the plight of parents with children who have life-limiting and terminal illnesses and to suggest practical and achievable proposals which would greatly improve the services and level of care provided for them in County Donegal.
The group believe that this cohort of very sick children and their families in Donegal have their own unique set of problems, due primarily to geographic location, but we were also endeavouring to shine a light on the very neglected area of children with rare disease in Ireland.
With the help of Joe Mc Hugh, T.D., we secured a meeting with the Minister for Health, Mr. Leo Varadkar in Leinster House on the 4th of February 2015.  During the course of that meeting we outlined our proposals for change in this area and he assured us that he would take the time to consider them. This was a highly emotive meeting, during which we all gave a brief but personal account of our own situations.  We also briefly met with An Taoiseach, Mr. Enda Kenny, during our visit to Leinster House and gave him a copy of our proposals, which he said seemed “reasonable and quite achievable”, and said he would look forward to being updated on the progress of our campaign.
One year after that meeting, we are still waiting. Our children are still waiting. After a year and a half of meetings with health officials in Donegal and Dublin, we feel like we have been used and betrayed.
Our  proposals included:
–       Establishment of community-based Paediatric Palliative Nurse Specialist who would be linked to Letterkenny University Hospital, to provide direction and guidance to the five paediatric consultants based there.
–       Specialist outreach clinics to be conducted every six months in the areas of metabolics and neurology at Letterkenny hospital.  This is now being done in cardiology and it eliminates all that stress that an already very sick child must endure by travelling more than four hours to Dublin on a regular basis, as well as the expense involved, for what can often be very brief appointments.
–       Appointment of an epilepsy nurse specialist in Letterkenny hospital, so if any of these children, many of whom suffer from chronic seizure activity, are admitted to the hospital there would be someone there who can advise their consultant on what action to take, rather than awaiting instructions from Dublin.
–       Financial assistance to be given to The Laura Lynn Children’s Hospice or establishment of a second children’s hospice to be funded by Government. Laura Lynn is the only hospice catering for children in the Republic of Ireland and having only eight inpatient beds means it is always under huge demand.
–       Establishment of a cross-border agreement between the Health Service in Northern Ireland and the HSE to allow children in Donegal avail of respite and end-of-life services provided by the Children’s Hospice’s in Enniskillen or Belfast, halving the journey they currently must take to Dublin. Also to allow children from this county to have basic investigations performed in Derry, Enniskillen or Belfast such as MRI, videofloroscopy etc.
–       An assurance given that the future of Ballaghderg Special Needs Preschool in Letterkenny, the last remaining special needs preschool for the entire county, will be secured.  Ballaghderg  caters for children with severe disabilities and complex medical needs, many of whom would never be able to attend mainstream preschools.  This school was threatened with closure last year and is currently under threat of closure once again.
> –       Access to the subsidised flight scheme offered to cancer patients in Donegal, for all children with life-limiting and terminal illnesses in the county.
–       Re-introduction of the feeding clinic in Letterkenny, which serviced the needs of all the children in the county. Abolishing this clinic without any prior notice over two years ago has meant that children must now travel to Dublin for basic feeding studies that were once done locally.
> –       The urgent need for the appointment of at least one extra Paediatric Palliative Consultant nationally. Currently there is only one Paediatric Palliative Consultant for the entire country, Ms. Mary Devins, who acknowledges that she will never have the time to meet all the children who have been referred to her.
–       Counselling to be offered to all parents of children upon diagnosis of a life-limiting or terminal condition in Ireland.  The Minister for Health seemed to be under the illusion that this service was being offered, but we were quick to point out that this is certainly not the case within the three national children’s hospitals.
–       Genetic counselling must be offered to all parents of children upon diagnosis.  Currently the waiting list for genetic counselling in some of the hospitals is over two years.
From the outset, we entered into this campaign with a huge amount of sincerity, determined to work hard and with a sense of selflessness that we were not just undertaking this mammoth task for our own children, but for all the very sick children, like ours, who have no voice to fight for change.
We hoped that we would achieve positive change which would impact on the lives of very sick children, providing them with a better quality of life for however short that may prove to be.
Since the establishment of this group, we have invested a huge amount of personal time attending a huge number of meetings with the HSE and other interested parties, issuing correspondence and meeting with parents from across the county to discuss their problems.  The energy we have poured into this campaign has been, at times, to the detriment of our own families and personal health.
Indeed since we began this campaign two of our members have lost their precious children to a rare disease here in Donegal, and despite being in the throes of their own grief, they were determined to improve the services and level of care given to children with life limiting and terminal conditions.  They have a courage we can only admire.  For those of us who are blessed to have children still here with us, we have sacrificed valuable time with our own very sick children and their siblings to try our utmost to achieve change. This need is urgent.  Time is not on the side of the children we speak of.  The clock of life is ticking against them.
To crush us then completely, we are informed that the HSE does not know how many children who would benefit or need hospice/respite services in Donegal – it was put to us to find the numbers, Are we now expected to do the work of senior management within the HSE who are paid handsomely? We are ordinary parents who have chosen to undertake this campaign for no monetary gain, yet what is being asked of us goes far beyond that now.
We are parents juggling sick children, trips to Dublin, family demands as well as the emotion that having a child with high complex needs puts on siblings. We have to fight for so much. In our naivety, we thought in the case of dying or severely ill child the only fight we would have is our own emotion.
Imagine our disgust and horror to find out recently that the post of Paediatric Palliative Nurse Specialist for Letterkenny hospital, which we had been informed had been approved and was sent to advertisement in September 2015, has only just gone to advertisement yesterday after we had persistently queried the delay in doing so.
While we reached an agreement with the HSE locally to secure access to the subsidised flights for sick children to Dublin, this information has not been passed by the HSE through the relevant channels to all parents who have children who fall within this bracket or who have been recently diagnosed.  We have also had numerous parents contact us who feel that the parameters for qualification are far too narrow.
To add insult to injury, we recently arrived for a scheduled meeting with senior local HSE management (which we have attended regularly for the last year), to find only one person in attendance. The remaining members of the group had neither sent notification that they would not be in attendance, despite having contact details for ourselves, did not sent apologies for their absence and have not contacted us since that date in December.  In our minds this was highly disrespectful and a downright ignorant attitude displayed towards us, and we were very upset and hurt by the actions of people whom we were led to believe were working with us towards a common goal.
We have gone out of our way to use our own initiative to explore every possible avenue to achieve some of the proposals we had made to improve the services and care provided for these children. We have forged relationships with individuals and organisations who work in this area both professionally and from a charitable perspective.
We made a presentation to the Committee of the Donegal Hospice in October of 2015, asking them to consider funding hospice and respite access to the Belfast Children’s Hospice for the very sick children of Donegal, if we could achieve an agreement with the NHS to provide same, as we had been led to believe that finance would be the most immediate stumbling block.  We prepared a very personal presentation which was very well received and the committee voted to provide us with necessary funding.  Sadly we were unable to gain access to Belfast Children’s Hospice as the NHS informed us that they are experiencing staffing problems and could only cater for children within their own jurisdiction.  Imagine then, after all that, to be recently asked by a senior manager within the HSE whether we could guarantee this funding should they be able to find a suitable premises.
They were unwilling to discuss the location of the premises or provide any details.  We explained that we were not at liberty to ask the hospice for funding for an alternative project which we are not being invited to view or indeed discuss.  Are the HSE now only willing to explore this possibility of accessing respite and hospice services for these children if we take on the huge responsibility of providing funding for such a project?
We have now reached the very obvious conclusion that we have been committed to discussions for the last year and a half with the HSE, who have been, for want of a better phrase, “stringing us along”. Whilst we were involved in this process, we have not been as publicly vocal as we had been prior to entering these talks. We have not spoken to politicians or media.  It seems almost like a relationship of convenience was established to keep us distracted and quiet.
We REFUSE to be dealt with in this manner and we REFUSE to stop our campaign to achieve our proposals for change for children with life-limiting and terminal illnesses.
These children have a right, as citizens of this State, regardless of their disability, to receive adequate healthcare supports and to be afforded the right to die with dignity, just as adults in this country rightly are. There are hospices to cater for adults in almost every county in this country, not least in every province, yet there is one hospice for children for the entire country. How ludicrous is that?
Indeed the Minister for Health, when posed this very question by our group, responded that ” the HSE do not support the hospice model of care”.  If Minister, you do not support the hospice model of care, then put in place vital supports into Paediatric Care, which are glaringly lacking in this country, to allow us as parents to care for our children till they die.
There seems to be an attitude within Government in this State, that parents should just accept their lot, and struggle at home behind closed doors with their terminally ill children.
They deserve more than that, they deserve to be treated equally and this State is failing them miserably.
We are our children’s voice and we are not going away!


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