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GSNV Presents: Strengthening the Support Sector

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Location

The Royal Children's Hospital, Melbourne

50 Flemington Road

Ella Latham Theatre

Parkville, VIC 3052

Australia

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Description

In 2018, we are beginning to see the results of investment into genomic and genetic technologies by Governments and the health sector; locally, nationally and internationally.

There are active interventions underway to release pressure points particularly within the medical and health systems. In other sectors, such as the support sector – we are not prepared. The Genetic Support Network of Victoria (GSNV) is concerned that the downstream effects into a continuum of care, from diagnosis to self-management and everything in between, will put pressure on more individuals, their families and communities.

We have a small window to ‘get ahead’ of this wave and to be proactive. Our challenge in the support sector is now. We do not have the resources for duplication of effort and the people we support need us to be collaborative and focussed on their needs.

On the 30th August 2018, The GSNV will host an open workshop for the community, health professionals, people with genetic conditions, families, support groups and support agencies. I am writing to make you aware of this event and to provide an opportunity for you to review the agenda and provide feedback prior to its finalisation.

The purpose of this workshop is:

  • To understand the likely impact of technological advances and increased investment into the health sector for genetic conditions, on the current support structures.
  • To develop a broad plan to strengthen and support the sector.
  • To understand as a sector, how do we ensure people with genetic conditions are supported at every level of health and wellbeing?
  • To agree on what do we need to stop doing, keep doing or start doing to meet the changing needs?

The following is a draft agenda and we would welcome your feedback and input by return email.

Strengthening the Support Sector Workshop - Thursday 30 August 2018, 9.30 – 4.30pm

Our workshop will clearly interface with the Strategic objectives in the National Health Genomics Policy Framework, primarily:

  • Person-centred approach: delivering high quality care for people through a person-centred approach to integrating genomics into health care; and
  • Services: maximising quality, safety and clinical utility of genomics in health care

Activity

  • Purpose

Opening

9.30-9.45am

To confirm the policy environment now and going forward.

Introduction to the objectives of the day

9.45-10.00am

To set the scene and agree the objectives for the day – we’ve got national framework, years of evidence building

The current Landscape

10.00-10.45am

To understand the impact of the technology and science – what does it mean for people with genetic conditions – what is the evidence that we have gathered to date about

Health Professionals Landscape

10.45 – 11.15pm

What’s changing in this space – what does discovery mean to the way clinicians work and the support they think would be of benefit to their patients wellbeing. How should the sector keep up?

Morning Tea

11.15-11.30am

Morning Tea

Panorama of genetic conditions

11.30 – 12.30pm

What’s changing for individuals – To understand the needs of the individuals

Support Group Landscape

12.30 – 1.00pm

How are people currently supported

Facts and Figures

Current experience – what’s different now to 1 yr ago, 3 years and how is it impacting (NDIS, mental health, recreational genetics)

Lunch

1.00-1.30pm

Summary

1.30- 1.45pm

So what does the support continuum look like now as part of the continuum of health care and is it adequate for the future

Workshop Afternoon – Group work

1.45-3.45pm

Questions

What are the most significant challenges we will face to support people with genetic conditions inside and outside the health system?

What are the key pillars of support that will be required into the future to overcome these challenges?

- 1 year priorities

- 3 years

- 10 years

How do we/should we build this capacity?

What do we need to Stop, Start and Keep doing?

Summary

3.45-4.15pm

Conclusion and next steps

- Recommendations about what needs to happen next

- Actions for implementation

We believe this is a critical discussion in the current environment and as we seek to implement the National Health Genomics Policy Framework. Support Groups play a vital role in supporting people with genetic conditions and carers, in wellbeing and mental health.

We strongly believe that for all Victorians to have the opportunity to flourish, it is imperative for people with genetic conditions and those who support them to have access to support in addition to medical and clinical support. Support such as community services, community networks, support groups, family and peer support is critical to the wellbeing and mental health of newly diagnosed, non-diagnosed and those on their continuing personal journey through the health care system.

Thank you, I look forward to discussing this event with you further and seeing you on the 30th.

Yours sincerely,

Monica Ferrie

Chief Executive Officer

Genetic Support Network of Victoria

P: +61 403 909 748

E: monica.ferrie@vcgs.org.au

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Date and Time

Location

The Royal Children's Hospital, Melbourne

50 Flemington Road

Ella Latham Theatre

Parkville, VIC 3052

Australia

View Map

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