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.