Monday, November 6, 2017

Annual General Meeting - 2017

 On Wednesday 1 November we had the Annual General Meeting of the Health Care Consumers Association.

We are pleased to announce that the following people are on the Executive Committee:
Sue Andrews (President)
Michelle Banfield (Vice President)
Indra Gajanayake (Treasurer)
And the general members of the committee are
Lou Bannister, Marion Reilly, Alan Thomas, Marcus Bogie, Shelley McInnis and Bernard Borg Caruana.
Chris and Yelin

Kate, busy taking the minutes of the meeting.

HCCA Staff - Yelin, Kate, Kathryn and Sandra

Kathryn and Fiona

President, Sue Andrews
Fiona Tito Wheatland presented on her thesis.

Indra reported on the financial position of the organisation.

After 16 years, Meg, HCCA Bookkeeper, retired!

Tuesday, July 4, 2017

COTA Affordable, Accessible, Appropriate Housing for Older Australians

HCCA Consumer Reps Ros Lawson, Sue Andrews and Marion Reilly attended the Council of the Ageing (COTA) Affordable, Accessible, Appropriate Housing Forum on Thursday 22 June 2017 at the National Press Club and have written a summary below of their thoughts and findings from the event.

An impressive range of expert speakers with both research and lived experience representing the community sector and government addressed the themes of the forum, many warning of a looming crisis as older Australians face mounting pressure from rising rental prices and carrying mortgages into retirement. They discussed new ways to address the changing housing needs of older Australians including affordability, housing security and housing options appropriate for older Australians, now and in the future.

With much criticism of one of Australia’s biggest retirement village operators as “bleeding residents until they die” in the news lately, the forum couldn’t have come at a more pertinent time. Surprisingly only a small percentage (5.7%) of seniors actually live in Australia’s 2,200 retirement villages , according to Ben Myers from the Property Council of Australia. He told the forum that the average age of entry to these villages was 75 with most staying about 7 years. The industry was now facing some serious problems. Most of the residential village housing stock is more than twenty years old and is often not what people want. These days village residents demand cinemas, gyms and coffee shops on site, pet friendly policies, communal gardens, and integration into the surrounding communities. One solution is to make retirement village mixed age communities. Myers quoted examples from Queensland where younger residents joined the villages where the average age was 80 and bought back the choirs and volunteering that had been in decline.

Providing residential villages in regional areas was often difficult because housing prices are currently not high enough for people to get sufficient equity to buy into the villages, and construction costs are often too high in rural areas.

Opening the forum, Ian Yates, CEO of COTA emphasised that the focus was on providing affordable, accessible and appropriate housing for seniors, and not residential aged care facilities. It costs the government as much as $34,000 a year to keep a person in residential aged care compared with $4,000 -7,000 to provide home support and care. Keeping people in their own homes and their own local community also promoted social connectedness with consequent good effects on their health and wellbeing.  

Overall, there is good news on the housing front for the majority of Australia’s 65 plus age group. But there is part of the population who are facing tough times.
Dr Judith Yates from the University of Sydney’s School of Economics said that 84% of the nation’s 65 plus are homeowners with 76% of that group owning their homes outright. The remaining 8% have mostly modest mortgages, and therefore most have very small housing costs. But private renters are in trouble, with about a quarter of them spending more than 50% of their income on rent causing much financial stress.
Renters also have much lower amounts of assets to call upon in times of economic hardship (the average is $1.2 million in super and property compared to under $200, 000 for renters). And this disparity will become even greater as the next generations face retirement.

The forum’s keynote speaker, John Daley CEO of the Grattan Institute (Australia’s leading non -partisan domestic research institute) says there are storm clouds on the horizon of housing accessibility for seniors.

A copy of John Daley’s presentation is on the Grattan Institute website:

Currently it’s not a social catastrophe as today’s seniors are net savers not spenders and will often pass away with more money in the bank than they retired with. But there are serious issues for those renters who are on pensions. They often have to skip meals, and are unable to pay utility and car registration costs so they can meet housing costs.

Rates of home ownership are falling for those in the 35-44, 44-54 age groups compared to those today who are 65 plus for whom the home ownership rate is the same as it was 35 years ago. In fifteen years’ time he predicts there will be significantly fewer people owning their own home, and there will be a real problem for renters as there has been little social housing built in the past 30 years. Currently the mix between private and social housing renters is about fifty fifty. Those people who have managed to get into social housing now will be staying on for many years so little will become available in the long term. According to Daley the only people able to access social housing now are the homeless and those suffering domestic violence.

And the answer to getting more housing is not for today’s seniors to downsize from their large suburban homes. When they downsize their choice is often limited to high end low density dwellings like townhouses and duplexes. Daley says this has arisen because those areas ripe for redevelopment- the medium density suburbs 10-15k from the city centre, are precisely those suburbs where there has been resistance to increasing the density of dwellings with apartments- the NIMBYs. As people prefer to downsize to a location that offers them shops, transport and community, most prefer to stay in the area they currently live in. Affordability is not on their list of desirability. So when large family home blocks are sold off, they are often replaced by high end town houses and duplexes. What is needed is to force developers to create affordable housing in larger developments and to ensure that the suburbs stay mixed as they are in Europe.

Daley warned of the shift from a system of stamp duty to land taxes which like rates would be paid over time. When land values go up because of favourable developments like trains and jobs then residents would pay more, and owners may have to seek economic buffers like reverse mortgages. 

He ended his talk by saying that what is needed is policy reforms like owner occupied housing being included in the asset test, and tax benefit and superannuation reforms. These are political debates that have currently stalled but he says when they next come to the fore they will run and run.

At the end of the discussion on affordability the former Senator Susan Ryan and now Age and Disability Discrimination Commissioner, raised the issue of the gender divide. She pointed out that there are more than 700, 000 women over 45 on low incomes who are single and do not own their own home. And John Daley agreed that the housing issue was most serious for women and that the overwhelming number of disadvantaged over 65s were women in single households and who are in the private rental market.

Other highlights of the Forum were the panel discussion about Affordable housing. Adrian Pisarski from National Shelter pointed out that there is no reliable current data about housing supply to inform policy decisions. More vulnerable people are more likely to be displaced and are then more at risk of homelessness which is on the rise including for older women. He mentioned Wintringham housing service in Melbourne as one of only a few who provide housing services for homeless people. Social housing is ‘broken’ and not meeting demand as the government is not investing enough. He thinks that the Community Housing sector has the capacity to increase supply but will always need investment from government.

Jeff Fielder from Housing for the Aged Action Group (HAAG) in Melbourne talked about their operation as an information and support service for older people. They provide early intervention for the growing number of older people at risk of homelessness. Again he noted that the private rental market does not work for older people because of short leases, high rentals and much lower rental housing in very poor condition. There need to be more options for people to access affordable housing equitably – public, community, independent living units, rental villages, aged care linked housing, Abbeyfield model, residential parks, shared living and a lot more advocacy. And he also noted that the aged care sector is well placed to assist with advocacy and appropriate placements by being better integrated with the housing and homelessness sector.

Lisa Langley from COTA NSW presented some outcomes of research with older NSW residents which tested attitudes and policy assumptions about housing which are made on behalf of older people.

The panel discussion about Accessible housing (regardless of age or ability) focused on issues of universal design, with contributions from Denita Wawn, CEO Master Builders Association, Sue Salthouse, Director of Rights and Inclusion Australia and David Brant from the Australian Network for Universal Housing Design. Contrary to the commercial market driven approach of the MBA, Sue Salthouse emphasised that self regulation doesn’t serve the market which shouldn’t only be driven by demand, an unreliable predictor of future longer term needs. Housing needs to be provided within the framework of human rights and our responsibilities under the relevant UN Conventions. She pointed out that all housing needs to have accessible and appropriate features. There is a complicated set of standards and regulations for builders, government and providers which makes accessible housing very challenging to regulate. 

David Brant picked up this issue saying that there needs to be more regulation and all new housing must meet a single basic accessible standard which ANUHB is lobbying for. This includes easy access from the outside (including lifts), internal ramps with no steps, wide doorways and halls, accessible toilet and bathroom and capacity for carer sleepover. This is slowly being implemented, especially in Victoria. This will ultimately be very cost effective by contributing to preventing older people being admitted (no falls, general safety) to aged care facilities.

The overlooked but very important issue was raised about older people living in rural and remote communities. They are unable to stay ‘home’ but can’t afford to move and are ineligible for assistance. This highlights the broader issue of lack of appropriate affordable services for remote communities.

For more information about the Forum go to the COTA Australia website where most of the presentations are available to download:

Sue Andrews
Ros Lawson
Marion Reilly

Tuesday, June 20, 2017

The challenge of communication – why it matters #hellomynameis

By our nature we are communicators, we trade information using a range of communication methods. When we are sick, feeling vulnerable, needing care, communication forms a central element in ensuring the quality and safety of the care we receive meets our needs. It can be hard for health professionals to get it right, when the volume of work is ever increasing, when the supporting structures are a bit shaky, when a multitude of specialists and professionals are involved, when you have never met the consumer before, when the information you need to give the consumer never seems to appear in a timely manner.
The consumer feels the same way, this is when a smile and a greeting can mean the world and can often unlock the answers required to ensure the quality and safety of the care received is just that little bit better.

Dr Kate Granger, a registrar in geriatric medicine, was diagnosed with terminal cancer in 2013 and passed away in 2016.

In one of her many stays in hospital she made the stark observation that many staff looking after her did not introduce themselves before delivering her care. It felt incredibly wrong that such a basic step in communication was missing.

Both her and her husband decided to start a campaign, primarily using social media initially, to encourage and remind healthcare staff about the importance of introductions in healthcare.

The twitter handle #hellomynameis and blog
Within two years the campaign had won the backing of more than 400,000 doctors, nurses, therapists, receptionists and porters across more than 90 organisations in the UK and in 2014 a number of administrators and clinicians made Change Day pledges in Australia to adopt the #hellomynameis challenge. Canberra Hospital and Health Services adopted the challenge in 2015.

Kate’s belief that introductions are about making a human connection between one human being who is suffering and vulnerable, and another human being who wishes to help. They begin therapeutic relationships and can instantly build trust in difficult circumstances.
Health providers around the world have adopted many approaches based on the #hellomynameis campaign, it remains a simple approach. Many providers have short You Tube videos played from their websites and in waiting rooms, on screen savers internally, some have used posters and badges. 

Below are a number of YouTube videos providers have developed to demonstrate how they have implemented the campaign: – Western Health, Australia – Southern Health & Social Care, Scotland – Royal Cornwall Hospital, England – The Chesterfield Royal, England - Belfast Trust, N.Ireland

Kate viewed the #hellomynameis as the first rung on the ladder to providing truly person-centred, compassionate care. We agree.

Further resources for communicating with health professionals are found here:

Sally Deacon
Manager, Consumer and Community Participation


Monday, June 12, 2017

Health Consumers Queensland Annual Forum 2017

I recently attended the annual forum of Health Consumers Queensland (HCQ). It was held in Townsville, in North Queensland. The theme of the forum was Power and Passion: Culture Change through Consumer Empowerment and Partnerships.

Th team and HCQ will make videos, transcripts, and visual presentations from all sessions available soon.

Over the day I took notes and am posting my thoughts and take away messages in a series of blog posts.

Mark Tucker Evans, Chair, HCQ
The forum opened with a welcome to attendees and acknowledged the Hospital and Health Services (HHS) who supported consumers to attend as well as staff from HSS’s, Primary Health Networks, the Department of Health, a range of non-government organisations and private services. He thanked the consumers and carers on the reference group who developed the program. He reflected that there was a rich and diverse range of participants which would add value to the day. Mark said: "the Forum is about exploring opportunities for meaningful consumer engagement and demonstrations of how it changes culture of organisations and improves the delivery of patient centred care".
Mark also reflected that the Minister launched the Queensland Advancing Health 2026 at the inaugural forum in 2016 and would be at the forum today to give a report on achievement in the past 12 months.

Professor Gracelyn Smallwood – conducted the welcome to country and reflected on 50 years of working in th healh sector, as a nurse including her training and now being involved in training others.

Reflecting on closing the gap she said: “We all have to come together in a collaborative approach, public sector, non-government sector and corporate private sector and then we can move mountains.” Prof Smallwood was also very clear that “A tripartite approach is needed to close the gap. Not paternalism, it’s not about equality, it’s about equity.”

Melissa Fox, Chief Executive Officer
Melissa Fox introduced a short session highlighting the work of the HCQ.  HCQ began in 2008 initially as a Ministerial Advisory Committee. With the funding of the Queensland Government in the past few years they have been able to deepen the work they do in supporting strong consumer participation. The Board and staff of HCQ recognise that the Government has invested heavily in establishing the organisation. They received a three year funding $2.6m in 2015 over three years. Melissa introduced each staff member and they each spent a a few minutes talking about their work, reflecting on highlights and challenges in the past two years since they came a funded organisation.

Jo Sherring, Lin Hinspeter (consumer) – Raising health staff awareness about health literacy issues – impact of a consumer video on staff perceptions of health literacy. Townsville HHS

Jo Sherring is Clinical Lead for Townsville HHS. Lin is a retired nurse and consumer rep. They have been working to raise awareness of the importance of health literacy in the planning and delivery of heath care.

Staff truly believe they are communicating well and that patients have knowledge and understanding but this is not always the case. With this in mind the patient information and Health Literacy group at the Townsville Hospital decided to make a video for patients and their families on te difficulty of understanding medical information.
  • ·        Consumers and carers were given common medical terms and asked to describe what it meant. Words included: triage, NUM, observations, oedemema, consultant, diuretic, titrate, intravenous, handover, multidisciplinary, analgesic, UTI, femur, hypertension, coronary, evidence based, self-care.
  • ·      They were also asked what was it they would like health staff to know and to understand about them to improve their care.

The video has been shown in staff orientation, during Heatlh Literacy week and in staff training.

The key messages were excellent:
  • It’s not our job to know your language. It’s your job to help us understand. Use plain language with everyone people can’t take care of their health if they can’t understanding it. How you provide information to us is important.
  • There are lots of words and includes description and diagnose that is communicated quickly and we don’t; have enough time to process it. And we don’t always know the right questions to ask.
  • Make sure the message you give is the message received. When a person is anxious they do not always here very well and it is easy to misinterpret.

Darlene Cox
Executive Director

Tuesday, June 6, 2017

ACT Budget 2017 - HCCA Initial Response

During the election campaign in 2016 Health featured strongly. The ACT Labor released a range of election commitments as part of their Ten Year Health Plan. This included significant infrastructure investment with the design and construction of the SPIRE centre, a new, expanded emergency department, an extension of the women and children’s hospital, more walk in centres and funding for a new building for Winnunga Nimmityjah Aboriginal Health Service. This budget starts to bring this vision into reality.

People will notice that there are delays in the state of many of the commitments, such as SPIRE, and these will not see services delivered before 2020. This is for a number of reasons.

ACT Health has started a process of planning for health services for the next ten years. This process is called theTerritory Wide Health Services Plan. This will include the development of models of care (the way care is delivered) as well as looking at planning for the workforce we will need to deliver the care. Technology – through the Digital Health Strategy – will also be considered. And all of these feed into the design of the new buildings. To bring the infrastructure projects forward without doing this planning is putting the cart before the horse. That is not to say the system is working well currently.

We know that there are significant pressure on our public hospital system. Canberra Hospital is one of the busiest Emergency Departments in the country. Calvary continues to experience increase in the number of people presenting there. And the Outpatients Departments are busier than ever.

There is a vast amount of work underway to address thedata issues that ACT Health has been experiencing with the territory wide data Review announced by the Minister in March 2017. This is not due to conclude until early 2018. It is extremely difficult to effectively plan for the future if you do not have confidence in the data you have. And the other major activity is the completion of theUniversity of Canberra Public Hospital, the rehabilitation centre that will provide sub-acute inpatient care for older people, people who have had neurological events like strokes, and longer term mental health rehabilitation. These people will stay at the centre for their treatment and care. It will also provide a range of day programs – where consumers will attend each day but stay at home. This has to be a major focus for the Government. The opening of this centre will free up much needed clinical spaces at Canberra Hospital and Calvary that can then be used for other services.

As mentioned above, there are a number of elements that need further explanation including consideration of workforce issues and the eHealth agenda.

Workforce is a critical element of a safe and efficient health system. There are a range of initiatives that demonstrate investment in the ACT workforce, such as the University of Canberra Clinical School and the additional nursing positions. The existing ACT Workforce Plan is for 2013-2018 and there is a need to have in place strategies to address the attraction, education, recruitment and retention beyond that date, to reflect the timing of the budget initiatives. We need staff for the new services.

The eHealthy Futures that was announced in the 2010-11 budget has experienced delays. This was first announced in 2009 when the ACT Government allocated $90.2 million over four years for eHealth initiatives. It was it described as an "unprecedented level of investment" by the then Minister for Health, Katy Gallagher MLA. The intention of this commitment was to ensure our health system was better positioned to meet the needs of the ACT community at the time and into the next decade. The Budget this year says it will be complete by June 2018. There needs to be some fresh thinking on how technology can improve the quality, safety and efficiency of services .We know it is difficult but it is worth the investment to help people have better experiences and outcomes of care and improve the connection between our very fragmented health system.

A couple of highlight include:
Mobile dental clinics: The community's most vulnerable people suffer the poorest dental health. So two new mobile dental clinics should help. The larger of the two will visit schools in more disadvantaged areas. A smaller one will visit disadvantaged adults in shelters and halfway houses. Turning room and power supplies are among the challenges still to be sorted. The government will spend $2,173,000 over the next four years.

Nurse navigator positions: We are very interested in the announcement of twelve nurse navigator positions. Queensland Health introduced the role in 2015. The nurse navigator roles are clinical roles held by experienced nurses with expert clinical knowledge and in-depth understanding of the health system. Their focus is to support patients with complex health care needs to identity their needs and facilitate access to services. They support and coordinate patients across their entire journey rather than focusing on just a specific disease or condition.

HCCA has been funded in 2017-8 ($100,000) to undertake work to develop a model of patient care navigators. It will be important for us to with ACT Health in this. We are particularly interested to develop the navigator role to help educate patients about self-management of their health needs which supports people to feel empowered to make decisions on their own health care.

While the government has invested in health care services, accounting for a third of the budget, ACTCOSShas called for greater ambition to deliver on the community’s expectation for a practical plan to drive back gathering inequality. Susan Helyar said “we are disappointed that, while the Budget checks off a number of election promises, we are still not meeting the community’s expectations about action for those who face sustained long term cost of living pressures especially those who can’t find affordable and accessible housing.” Their Media Release is available online. ACTCOSS commissioned research into cost of living pressures over the past three years which revealed a persistent and widening gap between income and living costs for individuals and households living on low incomes in the ACT. 

The Budget was well received by the ACT P&C Council. Their media release is available online. The Youth Coalition welcomes elements of the budget but remains concerned that the Government does not have a plan to address education inequity and recognition of the skills, knowledge and expertise of community services in supporting students who are at risk of disengaging from school.
An update on SHOUT. Our members will be interested to learn of the ACT Government commitment to SHOUT. SHOUT supports many community groups and the government wants that to continue. The government also wants to see SHOUT with a sustainable operating model.  The government's solution is
• to await the review's findings and 
• to give $70,000 to ensure SHOUT keeps ticking over.
Pending the review's findings, SHOUT may receive recurrent funding in the 2018-19 budget. 

The Government’s glossy overview of the health budget is available here:  The Budget Papers for Heath Directorate are available here

The Government is to be commended for their commitment to funding the health service to meet the needs of the community. Thirty one percent of the budget has been allocated for health services. This is $1.6 billion. The challenge for the Government is ensuring that the election commitments complement the health services planning that is currently underway within ACT Health.

We will continue to analyse the budget and share our thoughts with members via our newsletter.

Darlene Cox
Executive Director