Month: September 2019

Breast Implants – national recall

CONSUMER ALERT – The Therapeutic Goods Administration (TGA) continues to review and assess breast implants available in the Australian market. For more information and the latest updates, see the TGA’s online breast implant hub.

  • On 2 August 2019, the Allergan company voluntarily recalled their un-implanted Biocell macro-textured breast implants and tissue expanders due to a risk of breast implant associated anaplastic large cell lymphoma (BIA-ALCL), a rare cancer of the immune system. Another company also cancelled their product (Emergo Airxpanders Aeroform tissue expanders)
  • On 26 September 2019, the TGA published its decision to recall and suspend a number of other breast implants and tissue expanders. The full list of recalled and suspended products can be found on the TGA’s Breast Implant Hub.

The TGA has developed a fact sheet for consumers regarding the Allergan recall. The TGA fact sheet states that:

If you have symptoms such as pain, swelling, a rash or a lump in your breast, armpit or elsewhere or you are not sure about changes in your breast, please discuss these with your general practitioner (GP), surgeon or other appropriate medical professional as soon as possible.

Patients can also call HealthDirect on 1800 022 222 for further information.

World Patient Safety Day

Today, 17th September, is World Patient Safety Day – a day where 194 countries come together to recognise patient safety as a global health priority.

The slogan for the day is “Speak up for patient safety”, to increase public awareness and engagement, enhance global understanding, and spur global solidarity and action.

So what can you do to speak up for patient safety?

If you are a patient or caregiver

  • Be actively involved in your own care
  • It is good to ask questions; safe health care starts with good communication
  • Be sure to provide accurate information about your health history

From our work with health consumers, and from the personal experience of some of our staff, being prepared to speak up when you know something is not right with your care is a critical element in patient safety – even in the face of health professionals not immediately agreeing with you.

It is only by advocating for yourself, learning as much as you can, and feeling OK about asking questions that you can get the best health care. There are resources available to help you speak up and become more active in the important decisions around your healthcare.

The Choosing Wisely “5 Questions to ask your doctor” is a great prompt for starting important conversations with your doctor about your care.

The Question Builder tool can help you prepare for appointments. By creating a list of questions that you can print or email to yourself, you can get more out of your time with your doctor and remember what you want to discuss.

If you are a public health advocate or from a patient organisation

  • Promote patients’ voices in their own safe care
  • Advocate for safety in health care as a requirement

We have compiled these Self Advocacy resources that you may wish to share to help others advocate for themselves.

If this is an area you’d like to get more involved in, take a look at our Consumer Representation training. Consumer Representatives play an integral role in the Australian health care system. They provide vital information and ideas from a service user’s perspective, to health services and government committees. We can help you use your experience as a patient or carer to create a better health system.

If you are a health worker or health care leader

  • Engage patients as partners in their care
  • Work together for patient safety
  • Ensure continuous professional development to improve your skills and knowledge in patient safety
  • Create an open and transparent safety culture in health care settings
  • Encourage blame-free reporting of and learning from errors

If you are a policy maker

  • Investing in patient safety results in financial savings
  • Invest in patient safety to save lives and build trust
  • Make patient safety a national health priority

If you are a researcher, student, academic, or professional institution

  • Generate evidence to improve patient safety, your research matters
  • Encourage research in patient safety
  • Incorporate patient safety in educational curricula and courses

If you are from a professional association, international organisation or foundation

  • Promote patient safety for achieving universal health coverage
  • Provide learning and development opportunities for patient safety

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.

Improving engagement practices – people with disabilities share their feedback

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.  So others can learn from this project,  members of the working group shared their thoughts on how services could involve people with disabilities differently—here are some of their responses.

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”

 

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.”

 

Some additional lessons that the HCC team has learnt from this project include:

  • A major issue is ensuring information is accessible in the first place.
  • 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.
  • People with different disabilities – for example, physical, sensory and speech, intellectual, psychosocial – may have different needs in terms of what information and how it’s communicated. This may take time to plan and organise so that information is accessible to all at the same time.

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.