Dear Minister: Donegal parents tell their stories

Dear Minister: Donegal parents tell their stories
A Pettigo woman has added her voice to those of other Donegal parents who are seeking better access to services for children with special needs and life-limiting conditions.

A Pettigo woman has added her voice to those of other Donegal parents who are seeking better access to services for children with special needs and life-limiting conditions.

Sharon Kelly of Drumawark, Pettigo, is the mother of 4-year-old Caoimhe, who is living with a number of physical and intellectual disabilities and is completely dependent for most activities of daily life.

Sharon and her family live just one kilometre from the border with the north, but Caoimhe’s medical needs mean they must travel regularly to Dublin for the medical clinics the young child must attend.

In a letter to Leo Varadkar, minister for health, Sharon said that the significant distances Caoimhe must travel for these medical appointments have proven exhausting for the pleasant and sociable young girl.

“The additional long waiting times on top of her journey causes her significant stress physically, medically and emotionally, ” Sharon said in her letter to the minister. “To give an example of this, Caoimhe had her MRI scan of brain done in Temple Street after an agonising waiting list time on 11/07/12.

“Caoimhe was given sedation to have this scan but was discharged almost immediately on return from her scan, ” Sharon said. “She became very unwell during our journey home to Pettigo, which required us to ring for an ambulance to meet us on the road, and Caoimhe was admitted to Cavan General Hospital with aspirate pneumonia.”

Sharon is one of a number of parents in Donegal and other parts of the country who is part of the Facebook community, “Our Children’s Voice”. The online community was established by seven Donegal mothers of children with life-limiting or rare illnesses who met earlier this year with Minister Varadkar to plead for better access to paediatric medical, respite and hospice services for Donegal families.

“Our children need to be treated with the fairness and equality they deserve, ” Sharon said. “We are their voices. We need to be listened to.”

Young Caoimhe still has no formal diagnosis, but experiences a number of health difficulties, including global developmental delay, an inability to walk or talk, impaired swallowing, asthma and recurrent chest infections, febrile convulsions, low muscle tone, gastro-oesophageal reflux and scoliosis.

Sharon told the minister there are hospice services providing respite care in the north, just 20 kilometres from their home.

“It is essential that the government move forward and initiate a cross-border initiative to allow our children avail of these essential services which are much closer to us, ” Sharon said. “This is a serious fairness and equality issue for our children who are at such a disadvantage in this life-changing aspect of care.”

She said the Enniskillen South West Acute Hospital is only 26 kilometres from their home. In contrast, they travel 196 kilometres to reach clinics in Dublin, home to most of the clinics Caoimhe attends; 73-74 kilometres to clinics in Letterkenny and Sligo; and 30 kilometres to clinics in Donegal town.

Sharon also detailed a number of other needs Donegal families have, saying more therapists are needed in the county to ensure children receive therapy on a needs basis to maximise their full potential in early childhood learning.

She said Caoimhe has gone months without speech therapy on two occasions in the past because of staff sick leave, maternity leave and unpaid leave.

She also said children with special needs and life-limiting conditions should be automatically given a medical card for the duration of their illness.

Sharon also asked the minister for funding for special needs assistants in the pre-school setting for a second full year. Caoimhe is in her second year at Little Smarties mainstream pre-school in Pettigo, where she attends three mornings a week and has a one-to-one special needs assistant funded by the Health Service Executive.

The only special needs pre-school in Donegal is in Letterkenny. But Sharon said, “It is clearly unequal, unfair, unrealistic and totally wrong to expect children with significant special needs to start primary school at the same age as their peers.”

“This is simply discrimination against children who are in this position, ” she said.

In her letter, she urged the minister to listen to the parents, advocates for their children and for all children with special medical needs and life-limiting conditions.

“Take action now, ” she told the minister.

Speaking later, Sharon said she understood there was a cost involved in securing the medical equipment and services the children need, but said, “It’s a constant challenge and a constant battle and so much time taken up fighting for everything that she needs.”

“Caoimhe needs equipment and facilities to fulfil her life and maximum potential and while there is cost involved to the Health Service Executive and elsewhere, I don’t think we should be made to feel guilty or that we’re begging for something that our children need, ” she said. “These are absolute essentials.”