https://vivbennett.blog.gov.uk/2014/11/20/the-parents-perspective/

The Parent's Perspective.......

futures rosiedownssideup

 

 

 

Today I'm delighted to introduce two blog sites run by parents and both have written a special blog for our week.

Hayley Goleniowska is Mum to two girls, the youngest of whom has Down’s syndrome.

Visit Hayley's blog at http://www.downssideup.com/2014/11/nhs-learning-disability-nurses-PHPCYPweek.html where she talks about the key medical professionals that have supported them all and the vital role of learning disability nurses for families like theirs.

Recently, these specialist nurses helped liaise between the family and surgical teams and discuss Natty’s specific needs and her parents’ worries during routine surgery. The result was a calmer, smoother and shorter period of time in hospital.

LD nurses are so rarely introduced automatically when an individual with an LD is hospitalised and many GPs haven’t heard of them. Hayley would like to see their profile raised and feels that every hospital should have a Learning Disability team within it. Ultimately they work to reduce stress, fear and the number of deaths that occur when symptoms are misinterpreted as a patient’s baseline.

You can also watch this video Hayley has made http://youtu.be/Aihhva5cfUg

Tom Bachofner is a father to three beautiful children and started his blog as 'online therapy' and to celebrate the progress of his daughter, Rosie, who was born with Down's Syndrome (DS) and a Complete Atrioventricular Septal Defect (AVSD).

This year Tom won the Blog of the Year Award and Best Blog Writer Award and has posted a special blog for us today on the power and importance of parent blogging as a means to be heard and share experiences with other parents and healthcare practitioners.  Visit Tom's blog at http://www.thefuturesrosie.com/

Tom writes in his blog, "I think established and trusted parent blogs could be used by healthcare professionals (HCP’s) in conjunction with current information resources to show, not only the HCP’s themselves, but also new parents what it’s like living the day-to-day. This would help parents deal with the news of a diagnosis and help them see past the initial fear and look towards a brighter future. In the cases of a pre-natal diagnosis having this information from a parents perspective could also help couples make a more informed choice about whether or not they feel prepared to continue with the pregnancy."

 

 

1 comment

  1. Hayley Goleniowska

    Thank you Viv for the opportunity to share our experiences with others as part of #PHPCYPWeek and to work alongside medical professionals for better outcomes for other families with a child or young adult with a learning disability.

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