Month: September 2019

TGA Consultation – Assistive Technologies and Excluded Goods

The TGA has released a consultation paper: Clarification of the regulation of products used for and by people with disabilities – Options for amendment to the Therapeutic Goods (Excluded Goods) Determination 2018

This consultation is seeking feedback on options for amending the Therapeutic Goods (Excluded Goods) Determination 2018, to clarify which products intended for use for, or by, people with disabilities are excluded goods, and so regulated as consumer rather than therapeutic goods.
 
Consultation details, including the paper, are available on the TGA website at: https://www.tga.gov.au/consultation/consultation-products-used-and-people-disabilities. Submissions close 25 October 2019.

South Metropolitan Health Service – Consumer Advisory Council – New Member Opportunities

Rockingham Peel Group (RkPG) is committed to partnering with consumers to ensure a patient-centred approach to service planning, delivery and evaluation. RkPG Consumer Advisory Council are looking for new members.

The Consumer Advisory Council (CAC) establishes a formal partnership between consumer, carer and community representatives and RkPG. The CAC members provide support and advice to RkPG in order to improve the hospital experience for patients, families and other consumers.

What does the CAC do?

  • Advises on the planning, development and delivery of health services.
  • Provides valuable feedback on the needs of consumers, carers and the community.
  • Promotes consumer, carer and community participation.
  • Facilitates communication and cooperation between Fiona Stanley Fremantle Hospitals Group, local service providers and the community.
  • Advocates for consumers, carers and the community.

Meetings

  • The CAC meets monthly at Rockingham General Hospital.

Contact
Anyone can apply to become a CAC member, or register for other opportunities for consumer and carer involvement. If you would like to raise an issue or
suggestion with the CAC, or apply to be a member, please contact the Rockingham Peel Group directly.

Rockingham Peel Group Education,
Safety, Quality and Risk Department
Phone: 9599 4322
Email: RPGConsumerAdvisoryCouncil@health.wa.gov.au

Health consumer sought to present on “Treatment overload: lifting the burden of too much healthcare”: diagnosed with high PSA or breast cancer

The National Health and Medical Research Council (NHMRC) Partnership Centre for Health System Sustainability is seeking a health consumer to present at their November event – A simulation of the Australian health system – Treatment overload: Lifting the burden of too much healthcare

The NHMRC Partnership Centre for Health System Sustainability is hosting a unique event to talk about the complex issues affecting the sustainability of our health system. One of the current problems is healthcare waste. Approximately 30% of care is of little or no value to the patient and may in fact be harmful. The NHMRC Partnership Centre are seeking a person who would be willing to share their experience of being diagnosed with a high PSA (indicative of prostate cancer) or breast cancer. The successful applicant would deliver a 15-minute talk sharing the following:

  • how their diagnosis affected them and/or their family emotionally and financially
  • what course(s) of treatment(s) were offered
  • any discussion they may have had around the possibility of not treating the disease
  • what the person ultimately decided to do

A hundred people are expected to attend this event.  Attendees will represent all sectors of the healthcare system, including policy makers, researchers, health professionals, the media and consumers.

The work will consist of a writing a 10-15 speech and presenting it on Wednesday 13 November 2019 during the event, which will be held:

  • 2:30pm – 6 pm followed by a cocktail reception, Sydney Harbour Marriott, 30 Pitt Street Sydney NSW

Please note that the NHMRC Partnership Centre will cover all travel expenses and waive the registration fee for the successful consumer representative.

The NHMRC Partnership Centre welcomes expressions of interest by close of business Monday 30 September 2019.  To apply, please email the following to Research Officer at the NHMRC Partnership Centre, Dr K-lynn Smith at  klynn.smith@mq.edu.au :
• a letter verifying experience
• A CV in pdf format

Please contact K-lynn Smith at the NHMRC Partnership Centre on 02 9850 2243 should you have any queries.

Expressions of interest close COB on Monday 30 September 2019

Improving Engagement Practices – People with Disabilities

People With disabilities WA (PWDWA), Health Consumers’ Council (HCC) and a working group of people with disabilities have recently been working on a partnership program together—Empowering Health Consumers’ with disabilities.  Sam and Pip from PWDWA and HCC identified the opportunity to improve the experience of people with disabilities in the health system.  With funding from an Information, Linkages and Capacity Building (ILC) grant, staff from PWDWA and HCC supported a group of people with disability to create and deliver information sessions to people with disabilities and staff.  The work we have done together has been a great learning experience on how we can better engage people with disabilities.  To share some of these learnings, we asked members of the working group for their thoughts on how services could involve people with disabilities differently—and have selected some answers below.

 

What are some of the barriers that might stop yourself and people with disabilities from participating in engagement activities? (e.g. working groups, community advisory groups)

“Physical access, not flexible whether you can use alternative method of participation e.g. Skype, interpreters, etc. Finishes too late at night (after 8 pm) Not near reliable public transport.”

“A lack of understanding of facilitators of what life experience and background a person with a disability has to offer”

“Most working groups or advisory committees usually meet during my work hours. I may not be paid for my time and service on those committees. I may not have the expertise to speak on behalf of people with diverse disability than my own. Cost of travel to and from the meetings maybe too high.  Pay for the time and services of the person with disability sitting on that committee just as all the other members of the committee are getting paid. Meet their travel cost. Make sure that the person has some experience in the area of your work group meeting purpose and or the advisory committee”

“Knowing about them in the first place – I think it’s important to ensure that people with diverse disabilities are considered as a “must include” group when engagement activities are being planned. Being able to physically participate – consideration should be given to how to make engagement activities accessible to all Not being given the opportunity.”

“Health – like if am sick or in hospital. I know some of my peers are house bound and they are happy to attend remotely but can’t always get there.”

 

Do you have any advice for organisations that would like to find people with disabilities for engagement activities?

“Broaden your perspective of disabilities to beyond what’s visible.  Acknowledge that people with disabilities can often work and recognise that while not everyone chooses to disclose. If you provide info in a non-threatening way you might find them in your workplaces and neighbourhood. Consult with GP’s, community groups, Facebook and places like the Arthritis Centre and other places who have newsletters. Schools, Youth Centres, Youth Disability Advocacy network and Youth advisory councils. LinkedIn, Facebook, YouTube, Instagram”.

“Approach disability advocacy and support agencies, disability service providers, peak bodies etc.”

 

What would you like to see change to better involve people with disabilities in engagement activities?

“Let organisations know that there are lots of people with disabilities who are willing to share their lived experiences”

“Organisations would need to understand the life experience that a person with a disability brings to the group.”

“That people find out who they can turn to for expert advice about making activities and communications accessible”

“Education of the community that there are a lot of people with disabilities who would love to be involved. It should be mandatory that all boards or committee should have at least one member with a disability”

 

Some additional lessons that our team has learnt from this project would include:

Video content should include captions: a great way to do this quickly and at a low-cost is to use YouTube’s auto-captioning and edit where necessary.

Provide plain-text versions of material: uploading a plain-text version—and ensuring the headings are accessible through navigation—is a quick task that can make our materials even more accessible.

Keep our written content simple: everybody has a different level of reading comprehension but using simple English as a standard is a great place to start if we want our material to be accessible.  To provide information accessible to many people with intellectual disabilities, Easy English versions should be available.  We have produced the written resources from this project in Easy English and are available at this link if you would like to learn more.

Consultation: Increased online access to ingredient information – closes 10 October 2019

The TGA is seeking feedback on a proposal to publish the names of excipient ingredients used in therapeutic goods in the public view of the Australian Register for Therapeutic Goods (ARTG).

TGA is responding to consumer frustrations that they cannot easily access this information through existing mechanisms. By making this information available in the public ARTG view, which is available on the TGA website, it hopes to help consumers make more informed and safer choices about their medicines.

To make safe and informed choices, people need access to information about the ingredients in their therapeutic goods. It is also important to have this information to identify when specific ingredients may have contributed to an adverse reaction.

Some information about the ingredients in therapeutic goods is available to consumers in public documents. Alternatively, consumers must contact the company responsible for the goods or make a request for specific ingredient information from the TGA. Consumers have expressed frustrations that these mechanisms do not provide easy access to information about excipient (or ‘inactive’) ingredients in all medicines.

In response, TGA is consulting on options for making this information available online in the public summaries of goods on the ARTG.

Consultation documents

Content of submissions

Submissions may address any, or all, of the questions posed in the consultation paper.

TGA is specifically interested in what impact (health, safety or commercial) displaying the names of excipient ingredients would have on you. If the proposals in the paper are implemented, TGA is also interested to know if any organisations are willing to collaborate to help raise consumer awareness about the availability of this information.

How to submit

Complete the online consultation submission form to upload your submission in either pdf or word format.

Consultation submission form

Alternatively, hardcopy submissions with a printed cover sheet may be mailed to:

ARTG excipients project
Scientific Operations Management Section
Scientific Evaluation Branch
Therapeutic Goods Administration
PO Box 100
WODEN ACT 2606

Enquiries

Any questions relating to submissions should be directed to ARTG.excipients@tga.gov.au

FOR MORE INFORMATION visit https://www.tga.gov.au/consultation/consultation-increased-online-access-ingredient-information

Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

​​The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability was established on 4 April 2019 by the Governor-General of the Commonwealth of Australia, His Excellency General the Honourable Sir Peter Cosgrove AK MC (Retired).

The Commissioners are required to provide an interim report no later than 30 October 2020, and a final report by no later than 29 April 2022.

The Disability Royal Commission wants to hear from all Australians about their experiences of violence, abuse, neglect and exploitation of people with disability.

They want to make it as easy as possible for people with disability to participate in this Royal Commission and share their stories, so they are now accepting submissions where you can share your experiences.

CLICK HERE to find out how you can make a submission. There are Easy Read and Auslan versions available.

 

WA Sexual Health and Blood-borne Viruses Advisory Committee

  • Three consumer representative positions are now being recruited. The Department of Health is working closely with Health Consumers’ Council in the recruitment and support of consumer representatives.
  • WA SHaBBVAC provides a forum for a multi-agency and community partnership in the prevention and control of human immunodeficiency virus (HIV), viral hepatitis and sexually transmitted infections (STIs) in WA.

The WA SHaBBVAC assists the WA Department of Health’s (WA DoH) Chief Health Officer (CHO) under the Public Health Act 2016. It includes members from non-government organisations, health service providers, researchers, policy-makers and representatives from affected communities.

Consumer representatives are currently being recruited.

People with lived experience of HIV, viral hepatitis and sexually transmitted infections (STIs) in WA who are interested in advocating for and contributing to a coordinated public health response to these infections are encouraged to apply.

Learn more about the role and how to apply.

The key roles of the WA SHaBBVAC are to:

  • develop and maintain partnerships amongst health service providers, researchers and non-government organisations working to prevent and manage HIV, viral hepatitis and STIs in WA
  • discuss and develop innovative approaches to prevent and control HIV, viral hepatitis and STIs in WA
  • provide input into the WA DoH’s state health plan and policies for HIV, viral hepatitis, and STIs, taking into account matters such as prevention, education, treatment, care, surveillance, research, legal and policy issues, and evaluation
  • advocate for people living with or at-risk of HIV, viral hepatitis or STIs.

WA SHaBBVAC meets three times a year for a two-hour meeting.

Remuneration for consumer representatives participation on the committee is provided.

More information

Contact the WA SHaBBVAC Secretariat on 9222 2326 or email paramjit.kaur@health.wa.gov.au with any queries.