Wednesday, December 21, 2011

HCCA Representation at IAPO Congress on Patient Centred Care

Opportunity to attend the IAPO 5th Global Patients Congress

 The HCCA Executive Committee has decided to support an experienced consumer representative to attend the 5th Global Patients Congress ‘Achieving Patient-Centred Healthcare: Indicators of Progress and Success’ on the 17-19 March 2012 in London.  Workshop highlights include sessions on
Is access to medicines and treatments patient-centred?’, ‘Effective advocacy and ‘The role of the World Health Organization (WHO) in defining global healthcare standards’.   
Discover more about what the workshops will offer.

The Executive Committee has agreed to pay up to $3400 on registration, accommodation, airfare and transfers.

If you are interested you will need to fill out a nomination form, available on the HCCA website, and address the selection criteria.  

The criteria are:
i)        Proven ability to report back on meetings and share with consumer networks
ii)      Represent the organisation at a high level
iii)    Has an understanding of the issues to be discussed and can contribute to further understanding of the issues
iv)    Cost effectiveness for the organisation
v)      That participation in the event will develop the candidate’s experience and skills in representing HCCA at high level meetings
vi)    Preference will be given to people who have not received financial support from HCCA to attend an event in the same calendar year

Nominations will be assessed by a panel comprising the President, Treasurer, Chair of the Consumer Representatives Steering Committee, Executive Director and another HCCA member.
Nominations close on Friday 13 January.

We will announce the successful representative by the last week of January.

Wednesday, November 16, 2011

Pharmaceutical Benefit Scheme Policy: State of Play in 2011 and Future Issues

On Wednesday 19 October I attended the presentation given by  Emeritus Professor Lloyd Sansom at the University of Canberra along with Russell McGowan, Olivia Macdonald and Denis Strangman (ACT Cancer Services Consumer Reference Group).

Professor Sansom’s presentation included a brief history from when the Pharmaceutical Benefits Scheme PBS began, covering the period 1944 to the present.  In 1946 legislation was amended to include the PBS.  In 1946 the decision was that cost was not a consideration if it adds benefits and that no-one was barred from being an eligible user.  He also drew comparisons between the Australian system and those in place in Canada and the US.

Following are a few of the numbers and statistics Professor Sansom shared with us during his detailed presentation:
PBS represents $8.4billion per annum of government spending
the current trend for the growth rate of PBS expenditure exceeds GDP. It is worth noting that the percentage of spending in Australia is 9% of GDP and in the USA it’s 18%
total cost of PBS is $365 per person per annum  (based on information sourced from DoHA, Department of Veteran’s Affairs and Medicare Australia)
special arrangements have been put in place for indigenous groups
among the top drugs in use are Atorvastatin and Rosuvastatin (both of which are statins used in the treatment of high blood pressure) and Clopidogrel.

Professor Sansom gave an outline of the Therapeutic Goods Administration’s (TGA) decision making and assessment process, how it is based on clinical control data and has a duration window of seventeen (17) weeks for a drug to be assessed and if applicable legislation changed. He also stated that the process involved in the decision making came down to the three fundamental questions of:
can a drug work?
does a drug work?, and
is it worth it?

The method for assessment is based on the ICER (Incremental Cost Effectiveness Ratio):
Cost new – Cost comparator
Outcomes new – Outcomes comparator

On the question of ‘Is the PBS affordable?’, Professor Sansom talked about the National Medicine’s Policy.

Of interest to consumers is that drug companies are now being pushed to ensure they seek  patient feedback when making some assessments. Prof Sansom gave an example of this for a  medication prescribed for patients with difficulty walking.

Professor Sansom noted that tensions exist between optimal health outcomes and cost.  Is the consumer getting value for money? He also acknowledged the absence of an accurate method of measuring the effectiveness of the PBS in the long term due to the high level of complexity that exists between the measurement tools used.

In response to the question ‘have we got our system right in this country?’. In a nutshell, Professor Sansom’s view is that considering the constraints imposed - we do.

A recent ‘consumer jury’ verdict on end of life revealed that people value end of life and are willing to prolong life in order to end it on their own terms – mainly to reach key life milestones like seeing their children marry or provide them with grandchildren.

Professor Sansom ended up by speaking briefly about the role of the media and how a misleading announcement with the headline ‘patients denied cancer drug’ imparted  a wrong impression.  The actual reason for the drug being denied public subsidy was due to it being no more effective than one already on the market except that the new one had unnecessary laxative qualities which the committee didn’t think they should impose on consumers unnecessarily.

Kerry Burton
NAP Consumer Coordinator

Consumer Focus Group on the Emergency Department at Calvary Hospital

In September, HCCA convened a focus group of consumers on their experiences of the Emergency Department at Calvary Hospital. This was done in conjunction with the ACT Health Directorate’s Emergency Care Network Coordinator and the Project Lead of the ED Redesign Project Calvary Health Care.  The focus group was attended by five people from within the HCCA membership who had recent experiences in the Emergency Department at Calvary.

The aim of bringing these people together was to gather information from them as consumers about their Emergency Department experiences and what they deemed ‘worked well’ and ‘didn’t work well’.  The information gathered at this session has been fed back into Calvary’s Emergency Department Redesign Program and will potentially assist Calvary Health Care towards improving the care provided to patients who present at Calvary’s Emergency Department.

The Redesign Team are using the Picker Institute Dimensions of Care as their framework in which they analyse comments.  NSW Health  have developed this model also.  A useful overview of these dimensions is available on their website.  The consumer comments their comments and the issues raised have been aligned to the Patient–Centred Dimensions of Care model. It provided an interesting insight into the quality of services delivered in the ED.

What did consumers say?
Overall the feedback was positive. However there were a number of instances where the experiences highlighted areas where improvements could be made.

Positive experiences included:
- the level of priority given to a male patient who presented with a shoulder injury, was seen by a doctor then transferred directly to TCH.  This patient was advised by doctors at TCH that had Calvary not acted so swiftly there was potential for him to have lost his arm. Spectrum:  Access, Coordination
- Patients felt that when staff knew the patient, respect was increased.  Spectrum: Respect

Negative experiences included:
- a patient who was ‘appalled’ by her treatment. On arrival by ambulance at 16:00hrs with a shoulder injury, she was initially ‘very impressed’ at being transferred directly onto a bed in a treatment area but then waited until 23:00hrs to be assessed by a doctor. She felt the lack of communication and the length of the delay in being seen was unacceptable. Spectrum: Access, Communication, Comfort, Respect
- concerns about staff not hearing patients who were repeatedly asked about allergies, however at no point was anything documented. Spectrum: Access, Communication, Comfort, Respect
- shift-handovers where discussions took place in a loud voice and in front of other patients - no privacy leading to the patient suffering a deal of embarrassment. Spectrum:  Communication, Comfort, Respect.
- an elderly patient waited several hours to be admitted after arriving by ambulance in the early morning. During this time a faulty ‘alarm’ rang continuously in both the ED and the upstairs area.  Spectrum: Comfort, Access 
- a patient presented with chest pain and was taken to a bed immediately where she was surrounded by doctors and nurses who all appeared confused about what medication was being given to her and why.  None of them communicated to her who these people were or who was responsible for looking after her. She then overheard one of the people ‘whispering to another to get an ambulance’ to transfer her to TCH.  She was questioned by staff as to ‘who removed a tube?’ but felt too sick to know or respond. The patient was then told upon discharge at TCH that she should not have been transferred to TCH in the first place. Spectrum: Emotional Support, Coordination, Information, Respect.
- criticism regarding the availability of interpreters available at Calvary. Spectrum: Respect for Patient Values, preferences.
- Pain management team not aware of treatment regime for patient.  No consultation with GP regarding patient medications and needs whilst an in-patient.  Information the patient provided was disregarded leaving the patient feeling she wasn’t being listened to. Spectrum: Coordination, Information, Respect.
- a patient who was misdiagnosed twice and sent home. When they returned a third time was diagnosed with shingles.  This patient spent six weeks in a ward then six weeks in rehab. Spectrum: Access,  Comfort, Coordinate, Respect, Transition
- Patient perceptions generally are that they are scared as to how their presentation will be perceived by the staff, patients idea of an emergency is interpreted differently by hospital staff. Spectrum: Access to care,  Emotional support, Respect.

Where to from here?
Focus group participant feedback is being reviewed by the Calvary team along with other responses from patient interviews, surveys and patient satisfaction reports, enabling the gathering of key themes and areas of improvement.  This information will then be documented in a brief report which will form part of the larger ED Redesign Project Paper.  During this time the participants are being kept informed by receiving copies of the Calvary Emergency Department Newsletter and a copy of the Patient Perspective report once it’s completed.

Kerry Burton
National Access Program
Consumer Coordiantor

Sunday, November 13, 2011

HCCA Annual General Meeting 2011

HCCA’s AGM, held on the 10th of November, was a wonderful event.  It was good to see so many of our members attending.  I often attend medical and nursing conferences and the professions themselves on the noise they make at break times and dinners when they all get together.  I think consumers can certainly be proud of our "number of words spoken per minute" rate.  I know I was not alone is being able to catch up with so many people for a chat.

Mary Durkin spoke to us after lunch on the role of the Health Services Commission in bringing about improvements in our health system. We all learnt more about the work of the Commission and received useful insight into some of the issues relating to monitoring the performance of clinicians with te new registration arrangemetns under the Australian Health Processional Regulation Authority.

Adele Stevens gave her President's Report.  The full report is available ion the Annual Report but the speech she gave at the AGM is on the HCCA blog.

Russell McGowan spoken about the work HCCA is doing with the International Association of Patients Organisations (IAPO).

As part of the organisational business undertaken at the meeting, HCCA elected its new Executive Committee, and the Executive Committee for the next year is:
President: Adele Stevens (term ends 2012)
Vice President: Russell McGowan (term ends 2012)
Treasuerer: Bev McConnell (term ends 2012)
General Members:  Caroline Polak Scowcroft, Therese Findlay, Sharon Eacott (terms end 2013)
Marion Reilly and David Lovegrove. (terms end 2012)

I look forward to working with the new Committee in the coming year.

Darlene Cox
Executive Director

Saturday, November 12, 2011

HCCA President's Speech at the AGM

I am proud to be presenting my third report as President of the Health Care Consumers’ Association and I can report that this year of my presidency has been as just as productive as the first two.

The Annual Report includes my full report but today I want to share with you just a few highlights.

Over the past year, our work at the local level has been influenced by health reform at the federal level, including the development of the Local Area Health Network and the Medicare Local.  In addition, we have become more involved in research partnerships, such as the project examining consumer perceptions of nurse practitioners in primary health care, for which we received a grant from the Department of Health and Ageing.  I am particularly pleased with our move to increasing consumer involvement in research and we will continue to work with our University Partners over the coming years.

Integral to the important work of HCCA are the committed and hardworking consumer representatives, who tirelessly devote their time and energy to providing consumer input on a range of significant health matters.

This year, HCCA has

  • supported 43 consumer representatives,
  • managed 31 new appointments on ACT Health committees and
  • has consumer representation on about 109 health committees across the Territory, including ACT Health, Calvary Health Care ACT, community organisations and also at the national level. 
  • In addition to committee representation, we trained 30 new consumer representatives in the last financial year.

We continue to experience high numbers of requests for consumer representation from the Health Directorate.  We know our colleagues at the Mental Health Consumers  Network are experiencing a similar situation.  We welcome this acknowledgment of the value of consumers at the table.  This will continue to grow with the implementation of the national health services standards, in which partnering with consumers is a core standard.

A sign of our increasing role as the peak consumer organisation in the ACT has been the increase over the last year in the number of our organisational members.  These are listed in the Annual Report.  Working together with other community, health and consumer organisations is an increasingly important part of our work at HCCA.

Consumer representation in the Capital Asset Development Program has also grown over the last year.  This is an important and exciting area of work for consumer organisations to be involved in.  I have been working on the development of a new model of patient centred care for the community health service.  It has been a challenging yet rewarding experience.  We will see the fruits of this Community Health Centre development in the coming year with the opening of the new Gungahlin Community Health Centre in 2012.

This year HCCA Consumer Representatives have attended a myriad of events, including the regular E-Health Consumer Reference, consumer reps forums  and Health Issues Group meetings.  We have convened meetings on topics such as Respecting Patient Choices, Advanced Care Directives,  Primary Health Care Strategy and Patient Centred Care.

We are working hard to ensure that consumer participation is not limited to consumer representation on committees.  We are working with ACT Health staff to convene round tables and consultative fora on health service plans, medication safety, workforce  development, dental health, e-health and the development and implementation of the national health reform agenda.

From a financial perspective, I am pleased to report that HCCA continues to operate within a sound financial base.  I will leave Russell McGowan to provide more detail when he presents the financial report on behalf of our Treasurer, Bev McConnell who is unable to join us today.

Pivotal to the effectiveness and success of our organisation are the people within it – our members, our consumer representatives, our staff and my Executive Committee colleagues. Our members put in many hours of thought and preparation for meetings as well as participating in HCCA calendar of events and activities.

Firstly, I would like to thank all our consumer representatives and those members who participate in the workshops and fora we hold. Our membership is our strength and our effectiveness in advocating for improved health services can be attributed to your involvement.  The Consumer Representatives Program is truly the cornerstone of HCCA and I am proud to note that this program goes from strength to strength as evidenced by the commitment and dedication of our representatives.

I also want to thank my fellow Executive Committee Members for their support and hard work over the past 12 months.  I would especially like to extend my very best wishes to Marion Reilly; and I’m so pleased that she is able to join us today.

Finally, my sincere thanks go to the staff of HCCA and particularly, our Executive Director, Darlene Cox.  HCCA has been particularly fortunate in obtaining talented and committed staff that play a vital role in achieving the objectives of our organisation.  My thanks to Darlene and all of our staff for the great job you have done over the last year.

I end my report with a tribute to Val Lee, who passed away in January.  Val was a dedicated and experienced consumer representative who worked tirelessly to improve the health system, throughout her long battle with cancer. Val continued to attend her full day of meetings for the Canberra Integrated Cancer Centre User Groups until just days before she passed away.

I’m pleased to have been able to share this with so many or you.  Thank you for coming today and I look forward to another productive year.

Adele Stevens

Thursday, November 3, 2011

The Great Healthcare Challenge 2011: Achieving Patient-Centred Outcomes

Karen Jameson attended this 3-day conference which was held at the Sofitel Hotel in Melbourne from 11-14 October.  The event was sponsored by the Australasian Association for Quality in Health Care (AAQHC), the AustralianCouncil on Healthcare Standards, the Australian Healthcare and HospitalsAssociation and the Royal Australasian College of Medical Administrators(RACMA).

The conference brought together an impressive group of clinicians, executives and academics in the Australian health system.  The theme “achieving patient-centred outcomes” reflected the challenges of delivering integrated healthcare in the current reform environment, including governance; information management and e-health; clinical leadership; appropriateness of care; safety and quality and the need for patient-centred outcomes. 

A range of local and international speakers presented an innovative program of plenary sessions and workshops which explored the major issues affecting healthcare quality and safety.   A comprehensive trade exhibition, showcased the most up-to-date products, technology and information on health and health care innovation and development.  There was also an impressive poster display highlighting specific issues relating to patient-centred care.

End of Life Care

Jeanne Arthur, HCCA consumer rep, attended an End of Life Care workshop in Sydney on 19 October, presented by Les Storey, FRCN, FHEA, RN, MScm.

Les Storey, who is from the UK, has extensive qualifications and experience in the development of strategies for end of life care.  His presentation included information about the National End of Life Programme in the UK.

Despite losing his hearing aids, Les engaged the twenty or so attendees at the workshop quickly and with humour. Most of the attendees at the workshop were from New South Wales. Most were engaged in working with older and dying people.

The workshop began with some searching questions – When do we start talking about end of life?  Where do we want to die? How comfortable do we feel about talking about death?  Answers to these questions included “As soon as possible”; “Give as much choice as possible”; “Not very comfortable”.

Les discussed the End of Life Care Strategy, Preferred Priorities for Care. This program teaches trainees to be honest and open and to identify possible triggers for discussion, ask questions, record the answers, share information and evaluate the process. It aims to minimise the instances of people leaving hospital with false hopes of recovery from terminal illnesses and address the problem of out of hours care for dying people.

The Preferred Priorities for Care key questions are:
In relation to your health what has been happening to you?
What are your preferences and priorities for future care?
Where would you like to be cared for in the future?
Preferred Priorities for Care focuses on people’s wishes concerning their end of life care and not only their wishes in respect of death itself. Sometimes this may be a compromise between what is desirable and what is actually possible, but it is important to have the conversation, to identify issues and resolve them insofar as it is possible, keeping in mind that the preferred priorities may change as circumstances change
Advance Care Planning is a voluntary discussion which asks participants to look to the future, taking into account the best interests of the dying person.  It can help in situations where people lose capacity and it aims to improve the quality of death by reducing inappropriate hospital admissions and unwanted clinical interventions.
Les also spoke about the Liverpool Care Plan, which is an integrated care pathway that is used at the bedside to drive up sustained quality of the dying in the last hours and days of life.

Wednesday, October 26, 2011

Adverse Events and Safety of Health Services

There has been considerable coverage of the documents released regarding adverse events at the Canberra Hospital.

There is no doubt that these incidents are a cause for concern and it is life changing for those people affected. 

As a community we need to be alert to the risks inherent in health care but not alarmed.  Overall we have a safe public health system in Canberra but it is not as safe as it could be.

There are robust clinical review processes in place in the ACT Health Directorate and  HCCA has consumer representatives involved in consideration of these errors at a number of levels, clinical review committees, clinical audit committee and the overarching safety and quality committee.

Clinical review is a process which enables us to identify and understand the underlying causes of adverse or near miss clinical events, for the purpose of improving the quality and safety of health care.  The documents that have been released relate to that process.

It is good that there are review processes in place – but what we do have concerns around the successful implementation of the findings of the reviews and how the changes are monitored.  Mistakes continue to be made such as surgery on the wrong side of the body, medication errors. This indicates that the checking procedures are still not adequate.

These committees are underpinned by a quality improvement framework.  A safe health system needs to have a strong reporting culture.  This is not aimed at naming, blaming and shaming but rather identifying and reporting adverse events and near misses so that they can be analysed and issues identified so that improvements can be made and sustained.

If we didn’t have this system of reporting to discover when things go wrong then we wouldn’t be able to make the system safer.

Quality and safety of health care is everybody’s business.  Everyone has a role to play in improving the quality and safety of our services and that includes consumers.  Consumers need to be constantly vigilant and be active participants in our own health care and that of our family.

The 10 tips for safer health care is a useful guide.  
There is an American fact sheet that also is useful to Help Prevent Medical Errors 

By being active and informed consumers we can reduce the risk of harm in the health system

Darlene Cox
Executive Director

Saturday, September 24, 2011

Elective Surgery Report Card released

ACT Chief Minister Katy Gallagher has released a new ACT Surgery Report Card as part of her ongoing commitment to open government and increased transparency. The report card is attached for your information and reference.
The ACT Government has made significant progress on elective surgery, with more people than ever having operations, reduced waiting times and fewer people on the waiting list. The volume of surgery has increased and there has been a reduction in the number of people waiting for surgery longer than clinically recommended time period. There was a 16% increase above last financial year's performance which means 11,336 people from the ACT and NSW had their operations in 2010-11. They also outsourced about 150 surgeries to the private sector in an attempt to improve access for consumers.
The Government deserves to be commended for this work. 
The health care is a complex system and it is not as simple as completing more surgery.  Surgery is one part of the health system and capacity for surgery is dependent on operating theatre access, surgeons, nurses, anaesthetists. Surgery is also dependent on having wards for recovery and rehabilitation programs.  For example, someone having primary joint replacement (ie, knee or hip) requires a place in rehabilitation program to recover and regain full movement.  If there are not places available in the rehab programs then surgery cannot be done.  From the consumer perspective we want to have a coordinated approach to surgical admissions so that we have the best opportunity to have treatment and recover.
Kerry Burton is working with HCCA on the National Access Program.  Kerry is interested in collecting consumer stories on elective surgery.  Kerry can be contacted at the HCCA office Monday to Thursday.

Friday, September 23, 2011

Patient Journey Boards Improving Patient Flows

I visited Calvary Public Hospital on Tuesday to learn more about their Patient Journey Board and the Patient Flow Unit.  This is to have a more coordinated approach to the way in which patients move through the hospital.  It is a large magnetic whiteboard that is near the nurses’ station.  It contains de-identified information about the patients and it means that the commonly asked questions are answered at a glance: When is the patient going home? Has the patient been referred to Allied Health? What is the status of the referral? It means that not only the treating team can see this information but so can the patient and their family. 

The manual whiteboard is a common method for tracking patients and their care planning is a manual whiteboard within the clinical space.  This approach has been used for some time on other hospitals and Calvary have adapted it to their facility.  Flinders Medical Centre in Adelaide is using this approach also.  A poster of their work is available online.

Sir Charlies Gardiner Hospital in WA has also undertaken this work.  A slideshow of their approach is available online and will give you an idea of what they have done to improve patient flow through the hospital.

The Department of Health and Human Services in Tasmania, as part of their broader eHealth strategy, was interested in identifying ways to improve the quality of patient care while also increasing organisational efficiency in their hospitals.  One way they did this was by replacing the manual magnetic whiteboard which tracked patients’ admission and care during their stay in hospital with an electronic clinical portal.  There is a short video online that provides an overview of this.

The Access Improvement Service unit within Queensland Health, in conjunction with the University of Southern Queensland (USQ), is conducting an evaluation project to measure the benefits of the electronic patient journey board (EPJB) across a range of clinical settings. The study will be conducted across 12 hospitals and their 32 medical, surgical, and maternity wards. The key areas for evaluation centre on how the EPJB can:

•           make the in-hospital patient journey visible to the whole multidisciplinary team

•           improve communication between multidisciplinary team members

•           facilitate making investigation and care plans more visible, to streamline the patient journey

•           improve the coordination of discharge planning.

More information is available in the newsletter (pp. 5-6) 

Patient flow is an issue of great importance to consumers and we will continue to look at ways this is improving in the ACT health system.

Darlene Cox
Executive Director

Monday, September 19, 2011

Food and Culture: The Impact on Health and Ageing

On 8 September  HCCA staff attended the workshop Food and Culture: The Impact on Health and Ageing at the Theo Notaras Multicultural Centre. This event was hosted by the Canberra Multicultural Community Forum.  The purpose of this workshop was to explore the issues and challenges in providing a range of food from different cultures in hospitals, nursing homes and aged care services.

The Minister for Multicultural Affairs, Ms Joy Burch MLA, opened the session and welcomed the diversity of cultures and food in the ACT. Following her presentation, a variety of speakers from different fields gave their insight about food and its significance in people’s cultures and the impact on their health.  The keynote speaker was Jane Kellet, a Lecturer in Nutrition and Dietetics at University of Canberra. She talked about current research on malnutrition in elderly people in hospitals and residential care.  Garry Wright, the Food Services Manager and Kim Crawley, The Nutrition Manager from The Canberra Hospital talked about the changes they are making in their everyday menu planning to cater the diversity of patients admitted every day. Penny Jackson, the Manager for Nutrition Services from Red Cross also gave a good insight about Meals on Wheels services and the changes they are going through.  Terry Swarner, a consumer rperesetnative with HCCA, explained Food as a Clinical Issue, the history of clinical food, the standards of nutrition and to close the session he left us with a good prescription providing a healthy hint to have an apple everyday to keep the doctor away; Terry provided an apple to all attendees. Different individuals from Canberra multicultural communities spoke about what food means in their culture and their personal experiences in hospital, Meals on Wheels and aged care homes, suggesting what changes can be made.

The forum closed with an interesting panel discussion where questions were answered. All agreed that communication was an important factor to get the message across to the right people for changes to happen.

Yelin Hung
HCCA Office Manager

Friday, September 2, 2011

President's speech reflecting on consumer representation in the last year.

On 1 September 2011 the ACT Minister for Health hosted a reception at the Legislative Assembly to thank consumer representatives for their contribution to the development of health services.  Adele Stevens,  HCCA President, gave the following speech at the event.

2011 marks my third year as a President of the Health Care Consumers’ Association (HCCA)  of the ACT, and I am proud to say that the third year of my tenure has been just as productive as the first two.  Integral to the important work of HCCA are the committed and hardworking consumer representatives, who tirelessly devote their time and energy to providing consumer input on a range of significant health matters.  It is great to see that their contribution is being honoured today.

This year, HCCA has supported 34 consumer representatives on 67 health committees across the Territory and all divisions of ACT Health.  In addition to this representation on committees, we have trained 22 new consumer representatives in March and May/June and are expecting a further 15 participants for our September training.  As we have 34 consumer reps on 67 committees, this means that on average each rep is on about 2 – 3 committees.  My experience as a rep demonstrates this. 

I am a consumer rep on 3 committees - I have been one of the consumer representatives on the Clinical Audit Committee for a number of years now.  This is a very important committee as it examines when things go wrong in the ACT Health service and looks at ways to prevent these mistakes happening again. 

Secondly, following this, I joined the Respecting Patient Choices committee as their only consumer rep.  This is an area of health care which I am passionate about.  I am one of the growing number of older people who are worried about being kept alive with no quality of life by a health system which has gone mad with technology to prolong life.  The Respecting Patient Choices program provides a way for us to register our end of life wishes and for these instructions to be available to health care professional should I arrive at hospital and am not able to make my wishes known.  I am pleased to say that that ACT Health has doubled the funding to this program in the last year.  The cost of the program is minuscule compared to the money we waste in intensive care keeping old people alive who have made clear that they do not want to keep living without a good prospect of a decent quality of life.

Third, in the last year, I have joined a committee, under the Capital Asset Development Program, overseeing the redevelopment of the Community Health Centres in the ACT.  This is an exciting project with a new model of patient centred care for the community service.  This means integrating all the different patient records into a single patient record, which means merging our e-health records that are in separate services – eg dental, mental health, continuing care in community – into one record per patient - a challenging task to achieve by the time the new centres are due to open next year.

Health Care Consumers is an organisation which is committed to supporting the improvement of our health record with e-health technology, and the joint work of both of us, HCCA and ACT Health on the e-health consumer reference group is an good example of an innovative way both HCCA and ACT Health are working together to advance electronic health care services to improve health care.

But let us move on from the consumers representation program, to some of the other work we do. In addition to their role as consumer representatives on specific committees, members regularly attend events organised by HCCA which aim to deliver consumer input on a variety of health issues.  This year HCCA Consumer Representatives have attended a myriad of events, including the regular e-Health Consumer Reference and Health Issues Groups and Capital Asset Development Program Representatives meetings.

The growth in acceptance of the place of consumers at the table continues and this year we continue to experience high numbers of requests for consumer representation.  We know our colleagues at the Mental Health Consumers’ Network share our experience. 

We are receiving an increasing number of phone calls from the public seeking guidance and support on how to navigate the system.  We are working hard to ensure that consumer participation is not limited to consumer representation on committees.  We are committed to working with ACT Health staff to convene round tables and consultative fora on health service plans, medication safety, workforce development, e-health and the development and implementation of the national health reform agenda.

The e-health consumer reference group has developed over this year. We are the only jurisdiction in Australia to have a dedicated reference group of this type. We would like to acknowledge the support of the ACT Health Directorate for their continuing involvement in this committee. I would also like to thank Russell McGowan for his energy and vision in chairing this group.

The Consumer Representatives Program is truly the cornerstone of HCCA. I am proud to note that this program goes from strength to strength as evidenced by the commitment and dedication of our representatives.

Adele Stevens

Tuesday, August 23, 2011

Dying with Dignity

Last week I attended a presentation about end-of-life rights, delivered by Neil Francis, President and CEO of Dying with Dignity Victoria.  The session was held the Weston Club and was organised by Dying with Dignity in the ACT.
In the last two decades, surveys have consistently shown that the majority of Australians believe that terminally ill individuals should have a right to seek and obtain assistance to end their life with dignity.  Today that majority is around 85%.
Neil began by explaining the aims of the organisation.  These are: 
  • to promote legislation that gives freedom of choice to individuals and acknowledges the human right of terminally and incurably ill people with profound suffering to die with dignity; 
  • to carry out a continuing public education policy to achieve such legislation; and 
  • to educate the public in the need for Living Wills and Advance Directives and to provide counselling and other assistance to people about their end of life rights.
In short, their aim is to change the law so that medically assisted dying is permitted at the request of competent, incurably ill people who wish to avoid pointless suffering and degeneration, and to control their own dying.
Much of Neil’s presentation was based on the experiences of countries and states where voluntary euthanasia has been decriminalised for some years, including Oregon, Washington, The Netherlands, Belgium and Switzerland.  The legislation varies between these countries.  In Switzerland, passive assisted suicide has been legal since 1942, and it has the most open rules, which allow someone to give another person the means to kill themselves, provided the helper does not personally benefit from the death.  The overwhelming view from all these countries is that voluntary euthanasia works well for its citizens;  giving people the right to choose, and to talk openly about the option of voluntary euthanasia promoted peace, serenity and reassurance.
The Dying with Dignity website provides further information about voluntary euthanasia, including links to other Australian and international websites about the topic. 
Karen Jameson
HCCA Policy Officer

Thursday, August 18, 2011

Independent Evaluation of the Nurse-led ACT Health Walk-in Centre

HCCA welcomes the release of the independent evaluation of the Walk In Centre by the ACT Government today.  The evalution was completed by the compiled by representatives of the Australian Primary Health Care Research Institute and The Australian National University

HCCA has consistently supported the concept of Walk-in Centres which involve the development of a community based primary care level that is complements the options already provided by general practice and the hospital emergency departments.  We believe the walk-in centre provides an additional community health care service that will improve health outcomes for the ACT community.

The report contains valuable consumer feedback and analysis of interviews with key stakeholders.  On the whole, feedback is positive, with over 80% of patients surveyed saying they would use the Walk-in Centre again and would recommend it to family and friends. Consumers are pleased to have a service that is community-based and safe.

ACT Govt is today engaging in a 6-week public consultation period on the report and we will be discussing the report with our members and encouraging their feedback, which we will incorporate in HCCA’s response.

Success of this centre supports proposals to create other walk-in centres in the City, Tuggeranong and Gunghalin.  This is an exciting opportunity to provide a range of options for consumers who require care for minor illnesses and injuries.

We look forward to further discussions with ACT Government in the development of these centres.

Darlene Cox
Executive Director