Month: July 2019

Palliative Care – or Quality of Life Care?

On Saturday 20th July I attended an event in the community, run by the Uniting Church on the Voluntary Assisted Dying Bill. One of the speakers was Emma-Jade Sanderson, who is the Chair of the Joint Select Committee on End of Life Choices. The My Life My Choices Report from this committee is a weighty 600 pages, and a 16-page summary of the report and the response from the current government is also available.

As we noted in pages 9-10 of our Autumn edition of Health Matters, there are divergent views on end of life choices. A key concern from disability advocate Sam Connor was the systemic discrimination of people with disabilities, and the plea to be assisted to live, before being assisted to die.

Our submission to the WA Voluntary Assisted Dying Legislation Consultation echoed this concern. We also noted that “In truth, VAD is going to be accessible to very few people.” What is going to make the most difference to the most West Australians we believe, is access to good quality palliative care.

It would be wonderful if palliative care had more positive community connotations – about living well, having choice and comfort from distressing symptoms.

So I took great heart from Amber-Jade Sanderson’s reflection that whenever there is a focus on voluntary assisted dying in any jurisdiction around the world, more focus and funding is put onto palliative care. And right now there are important opportunities to influence palliative care/ quality of life care.

Your opportunity to have a say on Palliative Care

Summit

On Saturday 24th August there is an important opportunity to have your say on palliative care. A summit is being convened at the Perth Convention and Exhibition Centre:

  • 7am Breakfast
  • 9am Summit

You can book for both (“with breakfast” option), or just for the Summit (“without breakfast”) option.

This is an opportunity to bring together everyone interested in the delivery of palliative care in Western Australia – Health professionals, general practitioners, palliative care specialists, health consumers and carers. It aims to shape how we put into practice Recommendations 7-18 of the My Life My Choices Report, the Palliative Care Strategy 2018 – 2028 and relevant Sustainable Health Review Report 2018 Recommendations. Attendees are encouraged to share their experiences to provide insight and influence the provision of high quality palliative care for all Western Australians. It is a partnership event with Palliative Care WA, WA Country Health Service, WA Primary Health Alliance, Palliative and Supportive Care Education and the Health Consumers’ Council of WA.

An additional session will be held by video conference from multiple sites across regional WA for those unable to travel to Perth on Monday 19 August from 10am to 1.00pm.

Please note that the registration form requires you to complete the job title and place of work. You can just complete “Consumer” or “Carer” for both Job Title and Company/ Organisation. For address you can complete your own address or write the words “Home Address” if you don’t want to complete this information. You can repeat your home number or mobile number for Work Phone.

Register Here

Survey

Whether or not you want to attend, you can have your say in this short survey – you can have a look at the questions here before you jump online and complete the survey.

Complete the survey here

 

Pip Brennan, Executive Director

 

Why am I here? Because Informed consent…

This week, the I have the honour as the Health Consumers’ Council Executive Director to be guest tweeter on the Croakey @WePublicHealth page for the week of 15th July 2019.

For the first tweet I thought it only polite to introduce myself, and it got me to thinking again – why am I here? Why am I in this role? Why did I choose the topic of Informed Consent this week? In many ways informed consent is at the heart of most health complaints, and is a core part of why I believe in the importance of the work of the Health Consumers Council.

My passion for informed consent started from this GP conversation that happened to me and I would suspect pretty much every pregnant women in Australia:

GP: Congratulations, you’re pregnant! Do you have private health insurance?

Woman: Yes

GP: Which obstetrician would you like?

This is not an informed consent conversation. Why not? Because there is no mention of midwifery-led services here. There is no nuanced conversation about the evidence-based models of care that note that if you are low risk, you don’t actually need an obstetrician.

Like many people, my first real adult interaction with the health system was when I was pregnant. It really got me thinking, why is it so hard to access evidence-based models of care because they happen to be midwifery led? In my nearly twenty years as a consumer representative, I don’t believe this initial GP conversation has shifted in the way I hope it will in time.

I also think this type of conversation is by no means unique to maternity care, and that the path from the GP to a surgical specialist is short, with not enough detours past midwifery, nursing and allied health professionals. Not so long ago, my partner came off his bike and attended a GP. The advice was that it possibly was a full thickness rotator cuff tear in his shoulder, and surgery was required. However, the physiotherapist he went to noted it was a partial tear and gave him exercises. It healed beautifully over the next six to eight weeks without any need to trouble the surgeon.

Don’t get me wrong, I am very committed to the importance of having a really good GP that knows you over the course of your life, and here at the Health Consumers Council we regularly advise consumers to invest time in finding the right GP. I am very attached to my GP and she is a really key part of my wellness plan. But GPs are usually the gateway to the path of care we can travel, and it’s important that we choose the right care for our circumstances. The consumer always pays the ultimate price for their own health care choices.

Twenty years ago, after much research and some very good luck at stumbling across a birthing centre in a local hospital, plus the grace of everything going well on the day, I was able to have the drug free delivery I was hoping for. I have never forgotten the day my daughter was born. The medical and midwifery staff would have gone home at the end of the shift and likely not given it another thought.

In short, informed consent is a fundamental consumer right. And to exercise that right, we need to know that a) it’s OK to ask questions, and b) it’s also OK to say “can I think about this” or even “no” to suggested treatments.

Pip Brennan is Executive Director of the Health Consumers Council in WA, and independent, not for profit organisation dedicated to ensuring the consumer voice is at the heart of health policy, service planning and review. Pip has worked in the community sector for the last 18 years. Inspired by her own experiences of the confusing maternity care system, Pip initially volunteered as a maternity consumer representative in a range of roles. She began her paid health career as an Advocate working at the Health Consumers’ Council (HCC) from 2006. She has been a conciliator of health complaints, a health NGO professional and always a firm believer in the value of consumers being at the table. She took on the role of Executive Director of the Health Consumers Council in WA from 2015 and was a panel member on the state’s recent Sustainable Health Review.