The Queensland The Queensland Health System Health System

From A Consumer From A Consumer From A Consumer From A Consumer PerspectivePerspectivePresented by: Jodie GuerreroHealth Consumer Advocatewww.jodiesjourney.com

YOUR ILLNESS OR DISABILITY JOURNEY IS YOUR ILLNESS OR DISABILITY JOURNEY IS VALUABLE & SHOULD BE HEARDVALUABLE & SHOULD BE HEARD

What is Jodie’s Journey & Who is Jodie?What is Jodie’s Journey & Who is Jodie?

JODIESJOURNEY.COM is one women’s blog journey through blood cancer.

ANDAND

CONSUMERCONSULTATION.COMis a valuable & handy patient connection portal.

All About JodieAll About Jodie• I am a mother of 2 children (Julia/10 & Anna/8).• Wife of 15 years to Greg.• Our eldest daughter (Julia) has multiple

disabilities (Moderate-Severe ASD & an Intellectual Disability) – special school.

• Member of the Family Advisory Council, • Member of the Family Advisory Council, Queensland Children’s Hospital, opening 2014.

• Prior to my health consumer experiences, I completed qualifications in Dental Nursing and also worked in radio, retail, airlines & worked with Boeing Aerospace in Brisbane.

JODIES JOURNEY HEALTH CASEJODIES JOURNEY HEALTH CASEIS FOUND ON THIS PAGE:IS FOUND ON THIS PAGE:

http://www.jodiesjourney.com/jodies_triumph/jodies_case

• SEPTEMBER/2006 - whilst working Full-time in Aerospace –delayed & very serious diagnosis of avid, stage 4, B Cell Non-Hodgkin’s Lymphoma.

• Diagnosis all-up took 11 months, 7 doctors & 21 med. visits.• Diagnosis all-up took 11 months, 7 doctors & 21 med. visits.• I was becoming so sick – I was pleading -‘Cries for help’.• I had avid disease through body, eating into bones, muscles.• 8 months of chemotherapy, to save my life.• Emergency radiotherapy - R leg function/damage spinal.• B Cell Lymphoma is currently incurable, 10 years or cure.

JODIES JODIES JOURNEY HEALTH CASEJOURNEY HEALTH CASEIS FOUND ON THIS PAGE:IS FOUND ON THIS PAGE:

http://www.jodiesjourney.com/jodies_triumph/jodies_case

• After 1st remission & returning to work - I sought answers, through the HQCC & an investigation process.

• HQCC dismissed concerns, I requested an internal review.• AUGUST/2008 – My symptoms returned & I relapsed again.• AUGUST/2008 – My symptoms returned & I relapsed again.• In my 2nd relapse, I continued to press for investigation.• AUGUST/2009 – My former GP was finally disciplined.• This was a unamimous decision by the Medical Board.• JANUARY/2010 – Symptoms returned – Leg disability.

HoweverHowever, I have been able to speak , I have been able to speak up & advocate, up & advocate, via via webbing, blogging & webbing, blogging & social mediasocial media. Raising . Raising awareness about awareness about

health and social issues, as I live through them.health and social issues, as I live through them.

What is a Health Consumer Advocate (HCA)?What is a Health Consumer Advocate (HCA)?

v A person with passion, speaking up about health issues.

v Many HCA’s are either former or current patients.

v Also some are family of patients or community people.

v Health reform and more representation are often called for.

v Health workers & clinical staff also often become HCA’s.

There are hundreds of consumer representative groups in QLD. They represent almost all health issues, excluding rare diseases.

HCA’s are increasing using social media as a springboard.

Why Do We Need HCA’s?Why Do We Need HCA’s?

QUEENSLAND has the QUEENSLAND has the highest rate of preventative highest rate of preventative

diseases in our nation.diseases in our nation.

The level of overall preventable mortality is twice as high in

men as it is in women.men as it is in women.

QLD Strategy for Chronic Disease –2005 to 2015 outlines targeted efforts to reduce behavioural risk factors such as

tobacco smoking,physical inactivity, poor nutrition and

excessive alcohol consumption.http://www.health.qld.gov.au/publications/corporate/chronic_disease/chronstr

at2005.pdf

MEDIA ATTENTION ON THE FOLLOWING MEDIA ATTENTION ON THE FOLLOWING FAILURES OF QUEENSLAND HEALTHFAILURES OF QUEENSLAND HEALTH

ØØ Hospitals ER Crisis, Long WaitsHospitals ER Crisis, Long WaitsØØ Ambulance RampingAmbulance Ramping

ØØ Not Enough InNot Enough In--Patient BedsPatient BedsØØ Clinical & Ward Staff OverworkedClinical & Ward Staff Overworked

ØØ Poor TrainingPoor TrainingØØ Poor TrainingPoor TrainingØØ New Pay System MessNew Pay System Mess

HEALTH CONSUMERS HEALTH CONSUMERS QUEENSLAND (HCQ)QUEENSLAND (HCQ)http://www.health.qld.gov.au/hcq/

• HCQ comprises a Ministerial Consumer Advisory Committee and Secretariat supported by QLD Health.

• It has been established to contribute to the continued development and reform of health systems and services in QLD, by providing the Minister for Health with information QLD, by providing the Minister for Health with information and advice from a consumer (patient) perspective and by supporting consumer engagement and advocacy.

• HCQ aims to strengthen the consumer perspective in health services policy, systems and service reform and improvement. In acting as your voice in health, HCQ supports consumer, community and patient involvement in all aspects and stages of their individual and collective health care journey.

PUBLIC HEALTH SYSTEM, FROM 2007 TO NOWPUBLIC HEALTH SYSTEM, FROM 2007 TO NOW

• 24th November, 2007 - nation-wide health reform package.• Information was gathered from the public via Community Cabinet.

• Our health system required a major overhaul.• Particularly in regards to the lack of systemic consumer engagement .• Several ‘Health Community Councils’ As part of the health reforms.

• Legislation has been introduced into Parliament, transforming existing Health Service Districts into independent statutory bodies called ‘Local Health and

Hospitals Networks’ from 1 July 2012.

• Each network: required to develop strategies for consumer engagement.• ‘Queensland Children’s Hospital’ – due to finish in late 2014.

• The project will combine all Peadiatric services at South Brisbane and has supporters, plus opposers both in the print/broadcast media, social media.

A push by QLD HEALTH, to know our rightsA push by QLD HEALTH, to know our rights

• Many of us, as health consumers have little understanding of what our rights are, as a consumer. This is particularly so for senior Australians.

• Many Australians feel uncomfortable complaining about their standard of healthcare, either from their GP or from their local public or private hospital.

• Often as health consumers - we feel unable to voice our concerns in a GP office, because we don’t wish to ‘rock the boat’ – which is a cultural characteristic of many Australians.

•• ButBut, with the advent of social media, including video sites, like You tube – as •• ButBut, with the advent of social media, including video sites, like You tube – as health consumers we are connecting more, discussing more and thinking more about what we want in terms of our own health care.

• In Queensland, we have one important health document available to all consumers in terms of their health and the quality of service they are recieving.

The Australian charter of healthcare rights.In Posters, flyers and documents

And inwww.health.gov.au (keyword – safety).

What happens when things go wrong?What happens when things go wrong?‘Dr Death’ – Patel Case (2005-2010) and a new era in Queensland health.

• The highly publicised case of gross medical negligence by surgeon Dr. Jayant Patel from 2005 to 2010 changed the entire face of QLD Health.

• Massive internal changes were made within QLD health (as a result of this case) and many new policies were implemented in regards to making a difference in the

reporting, documenting & lodging of health service related complaints. • The entire senario certainly made the nation sit up and take a look at their own health reporting systems. A culture of transparent accountability was implemented

and a new concentration of the Quality & Improvement of our health services in and a new concentration of the Quality & Improvement of our health services in Queensland commenced.

Health Health Quality & Complaints Quality & Complaints CommissionCommission (HQCC)(HQCC)www.hqcc.qld.gov.au

This commission was set up as an independent health watchdog for Queensland health in 2005 and is the first port of call for all consumers who wish to report a concern or incident relating to poor health care in Queensland. One of the most important functions is to also ensure that all stringent standards are upheld by

individual & clinical medical staff. As part of an investigative process by the HQCC, some serious cases are referred to the Queensland medical Board for further

investigation into the licensing of individual practioners.

AUSTRALIAN CHARTER OF HEALTHCARE RIGHTS

ü ACCESS – You have the right to health care.

ü SAFETY – You have a right to safe and high quality health care.

ü RESPECT – You have a right to respect, dignity & consideration.

ü COMMUNICATION – You have a right to be informed about services. Treatment, options & costs in a clear & open way.PARTICIPATION – You have a right & open way.

ü PARTICIPATION – You have a right to be included in decisions and choices about your care.

ü PRIVACY – You have the right to privacy and confidentiality of your personal information.

ü COMMENT – You have a right to comment on your care and to have your concerns addressed.

Every five years the Australian Bureau of Statistics carries out an extensive survey (ABS Survey of Disability,

Ageing and Carers) that gives detailed statistics on the prevalence of disabilities in the Australian

community. The last (1998) Survey found that, of the total population aged

between 5 and 64 years, 19 per cent (some 3.6 million people) had some form of disability. The Survey also form of disability. The Survey also

found that an additional 3.1 million people had some sort of impairment but it was not bad enough to restrict them in their daily activities. Of the total of those who had some form of disability (i.e. the 3.6 million group)

approximately 3.2 million people experienced some sort of restriction

with respect to daily activities, employment or schooling.

The NDIS will be a new support system for people with a disability, their families and carers. It will

transform the way services are funded and delivered, ensuring people are better supported and

enabling them to have greater choice and control.

KEY ADVOCACY ISSUES KEY ADVOCACY ISSUES REQUIRING ATTENTIONREQUIRING ATTENTION

• Greater GP Awareness: blood disease signs & symptoms of Lymphoma/Leukaemia.

• Safer & faster diagnosis of blood cancers. • More support & research into the needs of • More support & research into the needs of

younger health consumers/young cancer. • Stats: Only 1% survival improval in 30 yrs.• More medical & social assistance for families & women with illness/disability.

In Conclusion – Advocates like me – either as an independent or within advocacy groups are changing the system and Queensland Health wants to listen more than ever. Couple this with the public’s new common access to social media & the internet with our current state health

reforms – we are sitting on an enormous opportunity to go forward and get key issues off the ground and fixed in this

state.In addition, with the current problems in political climate –

state.In addition, with the current problems in political climate –the ALP team in government is ripe to be taken over by the

opposition. The opposition wants power yesterday and they’re ears are ready. They are writing and preparing for their next election package and looking for issues that are

being currently ignored.

THIS IS OUR TIME TO MOVE AND TO ADVOCATE!!THIS IS OUR TIME TO MOVE AND TO ADVOCATE!!

Jodie’s short form story in

‘Inspiring Stories of Hope’

Ark House PressAvailable here today

for $14.95 for $14.95