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Meet the Goleniowskas!


30-September-2015

In August this year we were delighted to host a visit from Hayley Goleniowska and her family.  Hayley is well known as being the founder of the blog, Downs Side Up.  This blog started following the birth of her youngest daughter, Natty, who was born with Down’s Syndrome.  Downs Side Up started as a way of sharing her and her family’s story and resources with other parents with a child with Down’s syndrome.  Hayley and Natty have become pioneers, changing the perceptions of Down’s Syndrome through the development of her blog and other work.

Hazel Powell, Programme Director, NMAHP got to know Hayley through her work on the Learning Disability programme at NES. This led Hazel to invite Hayley to present at a recent UK conference on Learning Disability Nursing. Hayley gave an inspiring presentation and talked about her antenatal experiences and the birth of Natty, highlighting the importance of language and society’s messages and attitudes to learning disability. She spoke about the support and care she received from a range of health professionals – some good, but many not so good experiences.

Hayley talked about how different things might have been and the potential role for learning disability nurses to be present when screening is taking place and a diagnosis is given.

She also spoke about the invaluable role of the learning disability nurse when Natty underwent surgery.

Hayley urges us to break down labels and see individuals as unique. She tells us that Natty has enhanced her family’s life and asks that medical and health teams do not be sorry when a child with Down’s Syndrome is born; do not see a child as a collection of co-morbidities or perceived cost; but simply as an individual and that they congratulate parents on the birth of their baby.

Hayley and her family worked with us to develop a range of educational and learning initiatives to highlight the importance of family and person centred care with a range of health professionals. The specific aims include:

  • Highlighting the importance of language and objective information from health professionals particularly at the point of diagnosis  Emphasising the added value of learning disability nurses working as early as possible with children with learning disabilities and their families
  • Emphasising the importance of family centred care and strong collaborative care between health professionals
  • Considering new and expanded roles for learning disability nurses
  • Highlighting the importance of valuing each child as an individual with their own unique set of abilities and potential

The work includes a video podcast in which Hayley and her family share their experiences, highlighting key messages to health care professionals.

If you would like to find out more about the Learning Disability programme in NES visit  /education-and-training/by-theme-initiative/mental-health-and-learning-disabilities/our-work/learning-disabilities.aspx

 

Author: Christina Bickers, Project Lead, NMAHP, NES.

For more info contact: media@nes.scot.nhs.uk

The Goleniowska Family, Hayley, Mia, Natty and Robert