ANNUAL REPORT 2015/2016

Transcription

1 ANNUAL REPORT 2015/2016

2 Chairperson s Letter I was bewildered when my eldest daughter Eve s two-month stint in a hip harness, for developmental dysplasia of the hip (DDH), turned into a two-year ordeal. While her younger sister, Maya s journey was less stressful; I became all too familiar with the need to assist DDH-affected families who are overwhelmed and uninformed about the condition. This inspired me to set up Healthy Hips Australia (HHA). My sincere thanks to our volunteer board members Dr Bruce Matthews, Mrs Amy Lymbery, Mrs Ruby Johnston, Dr Nicole Williams, Mr. Chris Pearce, Mr. Greg Godwin and Dr Kate Stannage (retired). Thank you for believing in my vision and for giving your time and expertise to the formation of HHA. Currently, up to 1 in 50 babies are being treated for DDH in Australia, despite this, awareness of DDH and factors influencing it in Australia is limited. Late diagnosis statistics for the condition are also continuing to rise nationally; this has been declared a significant public health issue. I hope you join us in 2016/2017, and beyond, as we work to improve awareness, support and early diagnosis for hip dysplasia. Sarah Twomey Founder & Chairperson Healthy Hips Australia Ltd

3 What is DDH? DDH is a common condition that health professionals aim to diagnose early in babies. It can result in months and in some cases years of medical treatment. Left undiagnosed, it is the leading cause of early-onset arthritis of the hip in women. Also known as hip dysplasia, DDH occurs when the ball and socket of the hip do not fit together in their 'normal' position. Sometimes this is due to abnormal development and/or lack of growth of the hip joint. What is HHA doing about DDH awareness and support? Our Vision is to ensure resources, education and support are readily available for all people living with hip dysplasia, or raising and working with those affected by it. To achieve this we have worked on four exciting initiatives to commence in 2016/2017.

4 Timeline 2015 March April May June July August o Surveys conducted of parents of children with DDH o HHA Facebook page launched o Charity license WA (Registration Number: 21910) o Registered as Company Ltd o Registered with ACNC as health promotion charity o Endorsed as deductible gift recipient o Handouts and flyers developed o Website launched o Bruce Foster announced as Healthy Hips Patron o Sarah Twomey (founder) appointed to International Hip Dysplasia Institute international advisory board o Voluntary board of directors established/first meeting held 2016 March April May June o Bank West $1000 Easy Grant recipient o Healthy Hips Week April o Harrison Peacock announced as first Healthy Hips Ambassador o Healthy Hips Kits for DDH Kids initiative announced o Leadership Western Australia Rising Leadership Program- Healthy Hips Project o Charity license NSW (Registration Number: CFN/23882) o Charity license SA (Registration Number: CCP2294) o Recipient of $ Real Needs Grant from Real Insurance o Pinky McKay announced as Healthy Hips Ambassador o Hip Wise Awareness Campaign tabled at board meeting o 2795 Facebook June 30 o website June 30

5 Highlights Survey - March 2015 To determine if there was a need, in her home state of Western Australia (WA), for an organisation such as Healthy Hips Australia, Sarah sent a survey to the DDH community online. Within three weeks, with 364 responses, it was clear there was most certainly a need not just in WA, but nationally. The stand out statistics were: 67% Felt at best minimally informed day 1 of a DDH diagnosis Not Informed 26.72% Minimally informed 41.05% Neutral 11.85% Informed 15.98% Well informed 04.41% Facebook Voted the most practical source for DDH information Rank #1 Informal networks (Facebook) 38.2% #2 Internet/website 36.69% #3 Medical professionals 25.28% Resources developed Currently, when a baby or toddler is diagnosed with DDH, their family walks away from the news bearer with their child in a harness or brace, for up to 24-hours a day for a minimum of 6-12 weeks, or worse still, the wait for surgery to reposition the hip ball and socket. The daily challenges of feeding, bathing, playing, sleeping, nappy changes and positioning their child in car seats, prams and highchairs that are not designed with hip dysplasia babies in mind is overwhelming initially. Healthy Hips Kits for DDH Kids is our initiative to see every newly diagnosed family given an information pack at the start of their treatment to help make an overwhelming time a little bit less daunting. These will be released in September The following handouts have been helping DDH families since May 2015: Breastfeeding Swaddling and Sleeping Bags Eating and Highchairs Clothing- Harnesses & Braces Clothing Spica Cast & Broomstick Signs & Symptoms Flyer Safe Swaddling Flyer Prams Sleep Time Car Seats Nappy Changes Babywearing Handouts Available Here

6 Healthy Hips Week Healthy Hips (HH) Week April 2016 was Australia s first dedicated week to raising awareness for hip dysplasia. Our expectations for the week were exceeded with the following achieved: HH Week was successfully listed on the Australian Government- Department of Health s calendar of major health events. Just over $5000 was raised over face-to-face fundraisers and an online Healthy Hips Challenge Over 30 known media pieces were generated by our HH Week media release including 2 news stories on TV, 7 radio interviews, and multiple online articles, state and local newspaper articles. The ripple effect reached as far as the UK. Facebook Page April 10-16: o post reach; post engagement o 854 page views; 201 new likers Website visits for month of April: o visits, highest month to date. View Video Here

7 Testimonials I have hip dysplasia that was never picked up when I was a child. Both my son and daughter have DDH. Neither had symptoms as a newborn, so if not for my history, and insistence for repeat ultrasounds and x-rays, they probably would have had a late diagnosis like me. I discovered Healthy Hips Australia (HHA) on Facebook. When my son was first braced I felt lost. You are sent home with a brace and a very grumpy child but very little support. HHA has provided so many helpful tips for making my son and now my daughter comfortable during this time. I love reading other parents success stories shared on their website. Via the HHA website, I was able to read up on swaddling techniques and any other lifestyle factors that increase the chances of DDH before my daughter was born. I think the knowledge and awareness efforts of HHA will help prevent other cases of DDH going unnoticed until it is too late. HHA has been a life saver, they are doing a fantastic service to the community. Gen Harding Mother of child with DDH Sarah, the Founder & Chairperson of Healthy Hips, presented on DDH to the ABC Plus Nurses. This professional development opportunity was specific to the diagnosis, treatment and on going management of hip dysplasia. Along with the many online resources available through the website, this information session has been invaluable. We now refer parents of children with DDH to the Healthy Hips website, and confidently educate the parents whom we see about the importance of safe swaddling. Briony Pearce RN/Clinic Coordinator ABC Plus Financials at a glance Donations received $13,507 Fundraising $690 Grant funding received $20,909 Sponsorship funding received $1,394 To Our Supporters We cannot thank you enough for contributing towards our vision to improve awareness, support and early diagnosis for hip dysplasia. Special thanks to: Aver Group Accountants; Real Insurance; BankWest; Starfish Babes; Taylah Tree; Merino Kids; Fertile Mind; Kevin McCarthy; Jason Allan; The Australian Paediatric Orthopaedic Society Presidents: Michael Stening and Bruce Foster - Our Patron; Our Ambassadors: Harrison Peacock and Pinky McKay; Jemma Bailey; Sophie Richards; Sue Henderson; Tammy Tansley; Sharon Vladusic; Dreamfit Foundation Founder Darren Lomman; Amanda Young Foundation Founder Barry Young; Chad Price Chairman of the International Hip Dysplasia Institute; and lastly the DDH Parent community.

8 2016/2017 Initiatives Online Support Thanks to the $ grant from Real Insurance, we are able to set up an online support service. This service will help provide practical solutions for the day-to-day challenges faced during treatment, and support to overcome social isolation, improve leisure engagement and minimise the impact of hip dysplasia treatment on the children and their families. This service will be run by an occupational therapist and trialed in WA starting in early Healthy Hips Kits for DDH Kits Our vision with this initiative is to see every newly diagnosed family given an information pack at the start of their treatment to help make an overwhelming time a little bit less daunting. This initiative will commence in September DDH Friendly Equipment Hire Thanks to the $ grant from Real Insurance, we will be making available DDH friendly equipment for hire to families in WA. We are talking with a national baby equipment business about a partnership to facilitate the implementation of this service nationwide. This initiative will commence in late HipWise Awareness Campaign The rate of late diagnosed DDH in Australia, and lack of awareness for the potential signs, symptoms and risk factors, needs to change. We have drafted a health promotion campaign targeting these issues and plan to implement this in 2017, starting in Western Australia, where we have meetings with the Health Minister and Shadow Health Minister in late July Hip dysplasia may not be life threatening but it can certainly be life changing. All parents and parents-to-be need to know about this condition and community based health providers need more resources available to assist them in educating parents about DDH.

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