I am a clinical nurse manager and research nurse in paediatrics and child health in the Trinity Centre, Tallaght hospital, which is a post that is supported by Down Syndrome Ireland.
Having worked for many years within the area of disability, caring for children and adults in community, residential and hospital environments, I’m now working as a clinical nurse manager II for children with Down syndrome. I’m the only nurse in the country who specialises in the area of Down syndrome, providing a nationwide service for children and families from birth to 18 years.
It’s an extremely busy role. I currently have 450 children and their families attending Tallaght hospital and take hundreds of calls annually from families across the country.
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I also play an active role in clinical decision-making and ensuring children have all their medical needs addressed. It is vital to empower parents from a child’s early years and involve them from the very beginning, and it’s something I’m very happy to help with. Parents need to be supported within the healthcare system and my unique position allows me advocate for children on a daily basis.
As the sole speciality nurse in the area, I receive referrals from maternity hospitals across the country, community services and also self-referrals from parents, and all parents are welcome to get in touch.
Each work day is different and this variety is what keeps my role interesting. I’m continuously learning new things from children with Down syndrome and their families, and I trust that some of the information I give to parents helps them too.
Queries
The nature of the calls I receive include queries from parents requesting appointments for their children, requests from ward consultations, new parents, visits to other children’s hospitals and general medical queries. I also provide training to professionals in relation to Down syndrome and advise on how the news should be delivered to parents that their child has Down syndrome.
The way in which parents are first told that their son or daughter has a disability can stay with them for the rest of their lives. I recognise that this can be a difficult task for medical professionals and it is one that they can struggle with. As a result, all Trinity College medical graduates on their paediatric rotation receive a full day's training in how to deliver news in an appropriate manner. I also provide these sessions to student midwives.
Research is a central aspect of my job. For example, I played a pivotal role in setting up the national register for children with Down syndrome, for which the data is held and managed within the department of paediatrics and child health in the Trinity Centre at Tallaght hospital. I also collaborate with other clinicians on research projects.
In my work over the years with children and their families, I’ve met many who have had both positive and negative experiences of the services they have been provided with. I have seen children linked with excellent services that have helped them meet their developmental milestones, and supported parents in ways that are unmeasurable.
Struggle
Unfortunately, I have also seen first hand the struggle that some families have had to obtain the therapies their children need and to which they are entitled. Brendan O’Connor’s interview on
The Late Late Show
a few months ago gave the public a brief glimpse of one parent’s experience of the reality of having a child with Down syndrome and the difficulties that they have faced.
Resources that are offered vary from place to place across the country and this is something that I find frustrating and unjust.
I have experienced families that may live within minutes of each other, and one child will be offered early intervention services such as speech and language therapy and physiotherapy within weeks of the birth, while the other child may be waiting up to 18 months to receive the same service.
All children should be given equal opportunities to thrive and learn.
Postal codes should not warrant who is and isn’t given services quicker. It’s only fair that each child is given care packages that are tailored to their needs. For example, many children – once they are walking – may not need as much or any physiotherapy, but they will need speech and language therapy on an ongoing basis. It is really not acceptable that some children may get only two sessions a year.
Speech and language development is a recognised area that children with Down syndrome have a particular difficulty with, and it is also an area that is under-resourced in the community. As a result, some parents need to avail of speech and language therapy privately or through subsidised community services delivered through Down Syndrome Ireland’s branch network, without which their children may not be able to communicate effectively.
We’re plugging the gap in Government services. Unfortunately, some parents still cannot afford to access services privately and their children may struggle as a result.
Imagine your child being in a classroom environment or with their friends and being limited with their language skills as a result of not being provided with appropriate resources. How upsetting and frustrating would it be for you and, most importantly, for your child? It is simply not acceptable.
The most important message I have learned in my career is to always put the child and their families first, and if you follow this mantra you can be sure that the care you provide is always of a high standard.
Family-centred care is vital to ensure that the family is always the focus and that the child and their families are listened to. When a professional is providing care, parents they should ask themselves: “Would this be good enough for my son/daughter or family member?”
What is Down Syndrome Ireland?
Down Syndrome Ireland (DSI) is the national charity for people with Down syndrome and their families in Ireland. It was established in 1971.
It supports more than 3,500 members across 26 branches nationwide and is funded primarily through public fundraising.
Its goal is to improve the quality of life of children and adults with Down syndrome to ensure they have the opportunity to develop to their full potential as well as be seen as valued members of Irish society.
It is the biggest single group concerned with the welfare of people with a learning disability in Ireland.
DSI provides a number of services, including subsidised speech and language therapy through some of its branches countrywide.
Nationally, the charity also offers a speech and language consultant, advice on early development as well as a national education consultant who travels the country providing training to teaching professionals in school settings.
