The Health News – 6 June 2016

Overview:
• Disability advocates believe that in the past, little sex education had been aimed at people with a disability. People with disabilities can now get support with organisations such as CARA, which has adopted an open approach to sexuality with its client base.

• A dedicated paediatric palliative care nurse will soon begin working with children and their families in Canberra.The ACT Government has announced $2.1 million in funding over the next four years to expand palliative care services.

• Northern Territory Chief Minister Adam Giles said Poor design, rather than a lack of government funding, is to blame for a mobile dialysis truck sitting idle in an Alice Springs community health centre car park for two years.  NT Health Minister John Elferink said he did not know when the dialysis truck was last used, but believed it did provide dialysis at special sporting events and festivals.

News on Health Professional Radio. Today is the  6th of June 2016. Read by Rebecca Foster. Health News

http://www.abc.net.au/news/2016-06-05/sexual-education-people-disabilities-no-longer-taboo/7478718

The sexual development of people with a physical or intellectual disability is being freed of its taboo status with disability services prepared to embrace the subject for their clients’ benefit.

Disability advocates believe that in the past, little sex education had been aimed at people with a disability.

Women with a Disability Australia committee member Bonnie Millen said social expectations had left them in the dark.

“There was a general assumption by the public that they wouldn’t be able to act in a manner that was sexually appropriate, so having those tools like contraception condoms, sexual rights, reproductive rights, they’re generally non-existent,” she said.

“It’s a very sad thing because it’s not encouraged and it’s not implemented by schools or in later life to encourage people with disabilities to have an active sex life.”

Amber Del Pin from Adelaide has Osteo Genesis Imperfecta, also known as brittle bone disorder, and has been in a relationship for 10 years.

She believed not providing advice about sex and relationships might put someone else like her in harm’s way.

“I think that sometimes leads to risky behaviour and I kind of wish that there had been someone back when I was much younger to pull me aside and go ‘Hey these are the things that you are going to have to consider’,” she said.

People with disabilities can now get support with organisations such as CARA, which has adopted an open approach to sexuality with its client base.

… CARA’s approach to educating clients about sex was being adopted by disability service organisations around Australia.

http://www.abc.net.au/news/2016-06-05/palliative-care-nurse-canberra/7477844

A dedicated paediatric palliative care nurse will soon begin working with children and their families in Canberra.

The ACT Government has announced $2.1 million in funding over the next four years to expand palliative care services.

Assistant Health Minister Meegan Fitzharris said the position was an important addition.

“This position will be dedicated to understanding the special needs of children and their families, particularly working with the families who often may have other siblings that need to be considered in the palliative care stages,” she said.

“While children needing treatment for cancer usually go to Sydney, when they return to Canberra having someone there to help support them navigate local services can be vital.”

The nurse will maintain a close link with the Sydney Children’s Hospital network.

New funding will also support palliative care education for health professionals to strengthen their skills in end-of-life care and support patients to actively make end-of-life decisions.

Yvonne Anthoney’s daughter Dainere died in 2013 after a battle with brain cancer aged 15.

She said a paediatric nurse would be a major support for families at a difficult time.

“I think that a palliative care specialist in Canberra would make so much of difference both for the patient and the support for all the family members as well,” he said.

The Anthoney family is holding a ‘Happily Ever After’ gala dinner later this month to raise money for Dainere’s Rainbow Brain Tumour Research fund.

http://www.abc.net.au/news/2016-06-04/dialysis-truck-sitting-idle-adam-giles-denies-blame/7478060

Poor design, rather than a lack of government funding, is to blame for a mobile dialysis truck sitting idle in an Alice Springs community health centre car park for two years, according to the Northern Territory Chief Minister.

… Federal Member … Warren Snowdon, lobbied for the Dialysis on the Move truck, and in March 2011 … announced it would give the Territory government $396,000 to develop the unit.

Chief Minister Adam Giles said the truck was now not being used because of ongoing repair and maintenance costs resulting from its poor design.

While the Federal Government funded the truck, the vehicle was designed and developed by employees of the Northern Territory Health Department.

Western Desert Dialysis/Purple House chief executive Sarah Brown has run an organisation providing dialysis treatment to remote communities for more than a decade.

Her organisation operates a community-funded mobile dialysis unit called the Purple Truck.

Ms Brown said the Purple Truck was developed about the same time as the Territory government’s dialysis truck and its design was almost identical.

Ms Brown said she has had informal talks with the NT Health Department to discuss running the truck, but had not been able to reach an agreement.

[She] said it was a “shame” the dialysis truck had not been used, but because her organisation relied on philanthropic support she could not afford to fund the truck without input from the Government.

She said initial discussions with the Health Department revealed the steer axle of the truck was being leased to the Government from NT Fleet and has so far cost taxpayers $80,000 in hire fees.

NT Health Minister John Elferink said he did not know when the dialysis truck was last used, but believed it did provide dialysis at special sporting events and festivals.