Lifeline for people with rare diseases in health system maze
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Lifeline for people with rare diseases in health system maze

A new trial aims to help people with rare and debilitating diseases access support, treatments and clinical trials amid a malaise of confusion, red-tape and dead ends.

People with rare conditions speak of an overwhelming disorientation as they attempt to navigate the complex health system.

People with rare conditions speak of an overwhelming disorientation as they attempt to navigate the complex health system.Credit:Nicolas Walker

A three-year pilot trial funded by the federal government will station 10 telehealth nurses at 10 charities that support people with rare and complex conditions to connect them with the best-suited services and information for them.

After the initial shock of a diagnosis, these patients and their families can feel overwhelming disorientation as they attempt to navigate a nebulous health system better equipped for more common ailments.

The trial aims to ensure people who are in need of support get fast, expert advice tailored to their particular circumstances in a coordinated way, Health Minister Greg Hunt said. Be it specialist care, home services, mental health support, emerging technology or opportunities to participate in clinical trials for potential new treatments.

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“This is particularly beneficial for patients where there is a lack of treatment options for their condition,” Mr Hunt said.

The trial will be co-ordinated by the International Centre for Community-Driven Research (CCDR) led by chief executive Dr Catherine Holliday.

“We have a great health system but a diagnosis can come with a lot of shock. When you go home you might not have anyone to talk to or answer your questions,” Dr Holliday said.

She said the first point of contact after a rare disease diagnosis is often a local non-profit for information and support.

The program hopes to make the most of this by creating a central point of contact - a specialist Patient Pathways nurse - for patients and their families to access existing services and medical trials.

“We don’t want to hear patients say any more, ‘I wish I had known about that mental health care plan, or I should have asked about clinical trials',” Dr Holliday said.

Non-profit organisations will be invited to apply for a grant to take part in the trial.

A steering committee of eight organisations (MS Australia, the Unicorn Foundation, Rare Voices Australia, SMA Australia, hearts4heart, Lymphoma Australia, Muscular Dystrophy WA and Save Our Sons Duchenne Foundation) will determine which organisations will receive a grant. The majority of the funding will be distributed to the organisations by CCDR.

The committee will assess which patients have the greatest need, who has the most difficulty navigating the health system, and which diseases disproportionately affect disadvantaged and vulnerable populations.

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“These groups have been champions of this kind of service ... they could have asked for the grants themselves, but they said 'let’s open it up to other charities and make it fair and transparent',” Dr Holliday said.

The CCDR will help the charities design a protocol for the telenurses, connect them with the latest information about clinical trials, treatments, programs, subsidies and support them through the trial.

The trial will also help inform future research, treatments and care models for these groups, Dr Holliday said.

The program will officially launch in May at the first Patient Organisation Annual Conference.

The government funding for the trial is part of the Primary Health Care Development Program.

Kate Aubusson is Health Editor of The Sydney Morning Herald.

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