National EB Nurse Program Update - September 2011
Our two national EB nurses, Helen O'Grady and Samantha Hay, have been on board for about nine months now, and they are making excellent progress in expanding the support available for EB patients. Sam's main focus thus far has been to develop contacts with EB families in Queensland and improve procedures so that the EB clinic at the Children's Hospital is running smoothly. She has spent a lot of time assisting families with applications to join for the National Dressing Scheme and helping to sort out biopsy procedures. She is also working on ideas to help with support of older patients and has also written some clinical procedures for EB management for Queensland Health, which will be shared with other hospitals and health professionals in the State and can be consulted when new patients are identified.
Helen's focus has been on national needs, as well as acting as a back-up in Sydney when needed. She has met with health professionals and families in South Australia and Victoria, and was invited to attend two EB clinics at the Royal Children's Hospital in Melbourne, to assist the local team with case reviews. A project is also underway to standardise a "care pack" and information which can be sent rapidly to hospitals with newborns suspected of having EB.
The nurses have identified the need to improve the taking of biopsy samples for EB diagnosis. A confirmed diagnosis is essential for patients to be accepted onto the National Dressing Scheme. Clearer and more detailed instructions will be available for anyone involved in the biopsy procedure with the aim of reducing the number of inconclusive results.
A workshop for health professionals is being planned in conjunction with DEBRA's next Conference and Kid’s Camp in April 2012, to provide more information about some of the new projects the have been nurses working on and foster discussion about clinical and research developments.
National EB Rapid Response Nurses employed at Sydney Children's Hospital & Royal Children's Hospital Brisbane
As you may know, nib foundation recently granted DEBRA Australia’s application for funding and awarded us a massive $100,000 over 1 year to fund national, part time, rapid-response EB nurses. We have been hard at work with major hospitals to get these new resources in place, and finally we have some fantastic news.
Debra’s National EB Nurse Program has now commenced with the first EB nurses, Helen O’Grady and Samantha Hay, being employed and based at the Sydney Children’s Hospital in Randwick & Royal Chilren's Hospital in Brisbane respectively.
Helen’s & Samantha's appointments at the Children’s Hospitals have been achieved with the generous funding from nib foundation's grant, DEBRA supporters, members and mentors. We are very grateful to everyone who has helped us get to this point.
Although Helen & Samantha are based in Sydney and Brisbane, their roles are to support families caring for children with EB across the country, especially those families who do not have ready access to a specialised EB clinic.
The EB nurses' roles are not meant to replace the locally available care and support in your community but to support families, community staff (e.g. child care, pre-school and school staff) and health care professionals to care for families and children with EB.
Helen & Samantha would love to hear from our families with children with EB so they can start to get to know you all and begin to work out how they can best help our members. Their details are;
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Helen O'Grady
Days of Work: Monday and Tuesday
Telephone: 02 9382 0389
Mobile: 0488 937 007
Email: Helen.Ogrady@SESIAHS.HEALTH.NSW.GOV.AU
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Samantha Hay
Days of Work: Thursdays & Fridays - 7am - 3.30pm
Telephone: 07 3636 1790
Mobile: 0458 937 000
Email: samantha_hay@health.qld.gov.au
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We would like to offer our thanks again to nib foundation for recognising the very real needs of our members.
DEBRA helps secure a National EB Dressings Scheme
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Josh Gibson with the supplies he received from the EB Dressings Scheme
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After years of lobbying the government, finally success! In its last budget for 2009-2010, the Australian Federal Government pledged $16.4m over four years to establish a National EB Dressing Scheme. This scheme allows access to costly and necessary dressings to people with EB, which they normally would have had to completely fund themselves, sometimes costing thousands of dollars a month.
The scheme will be administered by BrightSky Australia.
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