Category: Blog

Perth Children’s Hospital Parking

The planned new subsidy scheme for Perth Children’s Hospital is the subject of this ABC news article which reveals that there will no longer be free parking for any families, and that the new rebate scheme, which may support more families, will cost $5 per day. Those who are not eligible for the rebate will pay $21.30 per day

We asked you to complete a survey about parking, and more than a 100 of you responded. The first question we asked is “What do you think?” and received an overwhelming response that this was not OK. The full ten pages of comments are here. This is what you said, in a nutshell:

  • Parents of sick children are already under stress. They shouldn’t have to worry about parking too
  • Parking shouldn’t have been privatised in the first place
  • There should be a CAT bus which goes past the Perth Children’s Hospital

 

We also asked you what you thought could be done, and received seven pages of comments you can read here.

And we were reminded that NSW drastically cut the cost of hospital parking after a petition was started by a young patient, and so did Queensland and it was only just over a year ago that WA’s Nathan Garcia protested his mother Monique Garcia’s parking fine of $1,000 which prompted a national petition, now closed, for free hospital parking. It is a big nut to crack, hospital parking, as there are complications such as free parking being mis-used by people not attending the hospital (which obviously can be overcome by ticketing technology), and considerations of how the cost of maintaining the car park will be met (e.g. in loss of clinical services) and so on. But it is a conversation we need to keep having.

Next steps

  • We will contact those of you who said you would like to keep in touch with us about this issue.
  • The CAT bus is an idea worth pursuing and HCC will follow this up.
  • Other options such as corporate partnerships to cover the cost also need to be explored. We will keep you posted…

Life with a chronic health condition – what is the consumer experience?

For six months of 2017, HCC has worked with the WA Primary Health Alliance and Curtin University on a project to explore consumers’ experience of chronic disease and what kind of care they are seeking from the GP and community based services.

People living with chronic health conditions and a range of community-based health service providers came together at a forum on Friday 1st December 2017 to hear the outcomes of a focus group study conducted by Curtin University and Health Consumers’ Council in 2017.

The aim of the study was to better understand the current system of GP management of long term conditions, from the perspective of consumers. This information will be used as part of an overhaul of the primary care system being conducted by the WA Primary Health Alliance (WAPHA) in conjunction with GPs.

Forty six consumers were involved in the focus groups which met in Wanneroo, Midland, Armadale, Rockingham, Bunbury and Albany. They represented a range of ages, backgrounds and health conditions but agreed on many key points:

  • Consumers want a long term relationship with a GP who is a good listener and will work with them in partnership
  • Bulk billing and reduced up-front costs to care helps consumers to get the care they need
  • Chronic condition care plans are not well promoted and don’t deliver enough care – especially to people who have more than one conditions
  • There is a role for specialist “care coordinators” to support better management of different services
  • People with chronic health conditions should be treated differently within the GP system to people who only require occasional GP contact

The full report from the focus group study is available from the WAPHA website http://www.wapha.org.au/community/engagement/ or you can view the summary of both the provider and consumer consultations here.

Kate Bullow, Project Co-ordinator.

Staying Safe at Home – Patient’s Own Medicines

This is a guest blog from researcher Brock Delfonte.

Managing your medicines at home can be complicated. It is important for your health that you always take the right medicines at the right time and know why you take each one. It is also just as complicated managing your medicines when you are admitted to hospital. Keeping track of all your medicines is vital but can be difficult as there are a number of different names, types and forms that medicines can come in, including:

· tablets, capsules and liquids
· patches, creams and ointments
· drops and sprays for eyes, nose, ears and mouth
· inhalers and puffers
· injections and implants
· pessaries and suppositories.

Most medicines are usually prescribed or provided by a doctor, nurse or pharmacist. Herbal, complementary or “over-the-counter” products like vitamins, nutritional supplements, and natural remedies are also considered medicines, as is anything you may obtain at supermarkets, health food stores or over the Internet.

Bringing in your medicines to hospital is one way you can help hospital staff get your medicines right. Bringing all of your medicines, including anything you keep in places like the fridge or by the bedside, lets hospital staff know what you’re taking and makes sure that you will be able to continue taking them if needed. There are a number of other benefits from bringing in your own medicines to hospital:

· Hospital staff can use some of the information found on the medicine labels to help them, including the details of any doctors or nurses who prescribed medicines for you and the pharmacies they came from
· Having the medicines with you can help you remember exactly how you take them, and help you remember any other medicines you may take
· Having your medicines with you can allow hospital staff to better help you should any of your usual medicines change in any way or are stopped during your hospital stay.

Remember to store your medicines correctly at home, and have them easy to access should you or your family or carers need to collect them to bring in to hospital. Bringing in all your medicines to hospital each time and wherever possible helps hospital staff provide you with the best quality care they can.

Brock Delfante MSHP
BCom BSc MPharm PhD (c)

The Surprising Truth About Youth Mental Health that Everyone Should Know – Guest Blogger: Jacinta Balestra

In his recent presentation at Black Swan Health’s symposium, Executive Director of Orygen (the National Centre of Excellence in Youth Mental Health) and 2010 Australian of the Year, Professor Patrick McGorry highlighted the shocking impact that mental illness has on the economy and the need for youth early intervention services to reduce its economic and social burden.

According to Professor McGorry, mental illness accounts for 16% of Australia’s total economic health burden, ahead of cancer and cardiovascular disease. Despite its dominancy, just 5% of Australia’s federal health budget is allocated to mental health initiatives.

For Australians aged 12-30, mental health issues are more significant than all other health issues combined, so it is young people that suffer the most from the lack of funding – often at a pivotal developmental stage in their lives.

As Professor McGorry outlined in his Perth address, there is a higher economic impact caused by debilitating mental illnesses in young people, as it disrupts their level of education and long-term future employment prospects. Early intervention is consistently more effective for mental health recovery, and with early adulthood being the peak onset for mental illness, youth early intervention mental health services are essential to Australia’s social and economic wellbeing. This is why Black Swan Health and Professor Patrick McGorry are passionate advocates in this area.

Professor McGorry led the way in the development of headspace – a free, youth-friendly mental health service for 12-25-year-olds across Australia; as well as the headspace Youth Early Psychosis Program (hYEPP) – the only comprehensive, free and accessible service for treating early psychosis in young people in the Perth north metropolitan region.

Black Swan Health’s headspace centre in Joondalup is the primary hub for the hYEPP program. It is also delivered from headspaceOsborne Park and Midland. The early intervention model minimises the impact and prevalence of psychotic symptoms on the young person’s daily life, enabling them to maintain or return to their regular activities with as little disruption as possible.

Terina Grace, CEO, Black Swan Health, stated that “The best healthcare outcomes occur when young people experiencing psychosis are provided access to specialised, intensive services as early as possible. Black Swan Health is grateful to have the opportunity to deliver its highly effective early psychosis program to young people in need. The program is based on Australia’s leading research in this field by Professor McGorry and Orygen and has been replicated and recognised internationally.”

Black Swan Health’s Clinical Lead, Dr Gordon Shymko stated “the program’s design involves an assessment team which responsively reaches out to young people in the community; the clinical continuing care team that provides a comprehensive management and treatment program; and the functional recovery team that assists young people to remain employed, in school, at home, to retain relations and lead their normal lives day to day, whilst still receiving world class care and treatment they need.”

If you know a young person who’s having a tough time, let them know about headspace today. Young people can access the services directly through headspace. Alternatively, a referral from a general practitioner or other mental health service-provider is all you need to access hYEPP.

How do you know about your rights in health care when you have come from a country where human rights may not be recognised?

Picture source: http://www.nytimes.com/2009/08/29/world/asia/29myanmar.html

On Tuesday the 11th April twenty-three people who have come to Australia from Burma/Myanmar learnt about their rights and responsibilities in health care. The session was held at the Herb Graham Centre in Mirrabooka and was supported by two interpreters. Some of the people attending speak Karen and others speak Burmese; have you ever worked with interpreters? Here are a few tips for when you do:
 Speak clearly and avoid using colloquialisms or slang
 Speak in sentences, not paragraphs, the interpreters can only retain so much
 Allow more time, whatever you are doing will require additional time for the interpreting to take place
 Speak to your audience/client, not the interpreter, they are the conduit, not the focus
 If you are imparting information, ask your client/patient to feedback the information you have provided to check they have understood
The HCC provides information sessions to people who may not speak English as part of our mandate to “raise awareness of and advocate for health consumers’ rights in Western Australia”. Sadly, some who arrive here have come from countries where their human rights have been abused. Expecting people to understand they have rights in health care requires them to have both knowledge and confidence and to be proactive when engaging with health professionals. In many instances this is a ‘bridge too far’. Providing people with basic information however is a good starting point and this is what HCC is doing. HCC is also working on an online health rights quiz which will be launched in the future.
I was joined by Diana McTiernan from the Equal Opportunity Commission (EOC) who delivered information on that topic. The two areas complement and support each other and I hope to continue partnering with the EOC. The participants were very engaged in both sessions, some related experiences which concerned them in the areas of employment and healthcare. Evaluations from the session show that people gained knowledge and confidence and that they found the information useful and will share with friends and family. Rather than written evaluations I use ‘faces’ and a small amount of writing that is easy to interpret, people can tick the appropriate ‘face’ e.g.
“After this information session I am more confident about attending medical appointments”

 

I would like to thank Say Paw from the Metropolitan Migrant Resource Centre at Mirrabooka for inviting me to present and look forward to future sessions and opportunities to work together.

Louise Ford – Manager – Culture and Diversity Program

Complementary Therapies in Cancer Care

“Studies show 77% of cancer patients who incorporate complementary approaches believe it improves their quality of life. 73% state it makes them feel hopeful. 71% say it helps to boost their immune system” (Mao et. al. 2011). In Western Australia Solaris Cancer Care leads the way in providing complementary therapies in cancer care.

Solaris Cancer Care

In July the Cancer Council WA held the ‘Integrative Oncology Symposium: Pathways to Wellness and Survivorship’. The symposium explored new ways to improve symptom control, alleviate patient distress and reduce suffering. The speakers were health professionals and academics who provided their insights into alternative therapies, lessons learnt in the treatment of cancer and patient experience, this included Clinical Professor David Joske founder of Solaris Cancer Care (2001).

“Although excellent resources have long been available to treat cancer medically, it became clear to me that the emotional and supportive care needs of cancer patients and their families were often overlooked.

So Solaris Cancer Care was born – a drop in centre in Sir Charles where cancer patients could receive free support and advice and supervised complementary integrated therapies that would support their mainstream treatment.

It was a radical idea at the time, and still is in some respect. But the idea has continued to grow and over the last 15 years we have opened three additional clinics in Albany, Bunbury and St John of God,” he says (Solaris Cancer Care 2016).

Since its inception Solaris has provided cancer patients with support services and access to complementary integrative therapies. It all started with a comment from a patient, Roy in 1998. Roy said that when he mentioned to one of his treating physicians that he was seeking complementary therapy, they had shut him down. Clinical Prof. Joske said he realised he “needed to get on board with complementary therapy.” By not accepting complementary therapy it had created a barrier between him and his patients so “we weren’t quite rowing in the same direction.”

Solaris Cancer Care Now

Now 100 people per week drop into Solaris, with no medical misadventure. Patients who access the services have a reduction in symptom distress and improved quality of life. Clinical Prof. Joske said during his time treating cancer patients the most valuable lessons he has learnt are from his patients:

  • The power of words and permission to die – What we say to people (and when) matters!
  • A role for complementary medicine – Accept how people cope with cancer.
  • The promise of new biology – cancer is a chronic illness
  • Survivorship

Clinical Prof. Joske closed his presentation with, as Hippocrates said, “Cure sometimes, treat often, comfort always”. For more information about the complementary therapies offered at Solaris Cancer Care go to: solaris care

Lucy Palermo | Marketing & Communications Coordinator | Health Consumers’ Council (WA)

References:

Mao, J, Palmer, C, Healy, K, Desai, K & Amsterdam, J 2011, ‘Complementary and alternative medicine use among cancer survivors: a population-based study’, Journal of Cancer Survivorship: Research and practice, vol. 5, no. 1, pp. 8-17.

Solaris Cancer Care 2017, About Us page, 2016, Solaris Cancer Care. Available from: https://solariscare.org.au/about-us/dr-david-joske/. [28 August 2017]

Cancer Patient Empowerment

It can be difficult to process the diagnosis of cancer. You are losing control of your body and although you do have choices during the treatment process they are limited. You can’t do the things you used to and you have to accept a new kind of ‘normal’. During this process, it can be difficult to feel empowered as a patient and as a person.

The Path to Patient Empowerment

The path to empowerment includes ‘Surrendering, but only certain elements of your life. It’s not a black and white situation’ says Associate Professor Caroline Bulsara, Notre Dame University. In 2012 Associate Professor Bulsara developed the ‘Patient Empowerment Scale’, for a study to measuring cancer patient empowerment. Using the questionnaire (comprised of 15 scaled questions) she surveyed 210 cancer patients. Through Associate Professor Bulsara’s research into quantifying empowerment she identified these keys to regaining control:

  • Acknowledging what I can and cannot control.
  • Familiarising oneself with the treatment regimen and side effects of treatment.
  • Establish boundaries with family and friends.
  • Learning to recognise what resources and information are and are not relevant.
  • Accepting and adapting to changed lifestyle. (2017, Associate Professor Caroline Bulsara, Notre Dame University)

How Providers Can Support Patient Empowerment

Associate Professor Bulsara identified that patients felt more empowered when all communication was shared with them and well documented. They felt more in control of their condition and had reduced feelings of anxiety. Patients spoke of a sense of empowerment due to their ownership of a paper journal, they called the Patient Held Record (PHR).

However, according to Associate Professor Bulsara more work needs to be done to explore the stages of empowerment during and after active treatment.

You can read more about her research via this link: http://www.ccsenet.org/journal/index.php/cco/article/view/23078

Health Consumers’ Council and Patient Empowerment

It is important to remember that it is your body they are treating. You reap the benefits but also the side effects of that treatment and you may have to live with those side effects for years to come.

Doctors must have your informed consent before you start on any new treatment regime. According to Cordasco, ‘In health care, informed consent refers to the process whereby the patient and the health care practitioner engage in a dialogue about a proposed medical treatment’s nature, consequences, harms, benefits, risks, and alternatives. Informed consent is a fundamental principle of health care’ (Cordasco 2013). This means you have the right to say no and seek a second opinion.

If you are finding it difficult to speak up Health Consumers’ Council can help. We can help you to understand and support your healthcare rights. We can help you find and access health services and assist you in providing feedback about your health experience. This free service is available to anyone in WA. For more information regarding our services and tools to support you click here.

Lucy Palermo | Marketing & Communications Coordinator| Health Consumers’ Council WA

References:

Bulsara, C & Styles, I 2013, ‘Development of a Cancer Related Patient Empowerment Scale Using the Polytomous Rasch Measurement Model’, Cancer and Clinical Oncology, vol. 2, no. 1, pp. 87-102. Available from: Cancer and Clinical Oncology. [13 July 2017]

Cordasco, K 2013, ‘Obtaining Informed Consent from Patients: Brief Update Review’, Making Health Care Safer II: An Updated Critical Analysis of the Evidence for Patient Safety Practices, no. 211. Available from: National Center for Biotechnology Information. [14 July 2017]

My Grandson the gift: A new world of unconditional love & care

My Grandson the gift

Gifts from God come in all kinds of wrappings and I treasure the gift of my Grandson. I am a Grandparent with fulltime care of my fifteen year old grandson James who has multiple disabilities, including Downs, Autism, Epilepsy, Hashimotos and sensory disabilities.  He has had a recent diagnosis of Juvenile Arthritis. All issues apart from Downs have been diagnosed since he has been in my care.

I love my boy, for many reasons.  He has made me a much better person. He has taught me to be kinder and more understanding and above all I have learned patience. He has shown me a new world full of unconditional love and unending joy.

I wish you could see my laughing boy. But it hasn’t always been that way.

How he came into my care

This child was a victim of relentless parental neglect until he was removed to my care in 2007. There was no ‘early intervention’, minimal medical contact and very occasional schooling.

My wee man has a severe intellectual disability; I have had to accept that he has an IQ of 40 and an intellectual age of 6 years. He will never hold a salaried position; nor will he ever drive a car. BUT; he will never have a tax problem nor will he have a mortgage so, who has the disability?

He has progressed from an 8 year old nonverbal lump who weighed 15kgs, who sat and rocked on the floor – into an active exuberant boy who loves to run and play. This boy has undergone a number of medical procedures and we have had some great results but it hasn’t finished. From thinking that it was normal to wear nappies, it has taken a huge effort but he is now toilet trained! He is very proud of his major achievement.

His speech is progressing and he can (for the most part) make himself understood but I realize that he will never be fully articulate and will always need help.

At mealtimes, he always sits at the table and uses cutlery when eating. He has developed his own taste in food but ice-cream is always there! He has his chores that he zealously guards. He has learned some manners, please – thank you, and asking politely but we are still working on it.

James helping the Farrier

My boy was absolutely terrified of water but after many hours at our local pool slowly, slowly I got him into the water, now swimming is his most favourite pastime. So much so Grandma had to visit Gumtree for a pool. He has become a very sociable boy who loves having his friends visit, especially for a pool party and Grandma’s BBQ.

He attends a special education school every day and loves it. He has developed a special relationship with his teaching staff. He just loves them and his school. Their dedication and love cannot be underestimated. School staffs have been the major strength in his improvement.

Now my little man has grown, he is at High School. What a joy to see him grow, healthy and happy. So many people said it was doubtful but we did it. We survived together!

I don’t feel that I have done anything special for my wee man but love him and I tell him that every hour of every day. He thrives on hugs and kisses and so do I, we love each other and I think that is the key.

Without wanting to sound melodramatic, He is the reason I get up in the morning and I thank God for entrusting him to my care.


Shirley is one of our members. She wanted to share her story to highlight how children with a disability can thrive when provided with support and love.

In September 2016 Shirley was diagnosed with stage 4 Cancer. She is currently receiving Chemotherapy treatment. During this time the Active Foundation have been an incredible support providing respite care for James picking him up from school and dropping him home later in the week. Allowing Shirley to time to recover from her Chemo treatment.

Pictured: James on Lake Taupo

PMH Staff Morale at Crisis Point – Consumer Perspective

As promised by our state’s new Heath Minister, The Honourable Roger Cook, the report into staff morale at WA’s Child and Adolescent  Health Service can be found publicly on this link on WA Health’s website. Confusingly, it is noted as confidential- a sign of how recent this edict of transparency by the Health Minister is.

As Executive Director of the Health Consumers’ Council, Saturday 10th June was my first opportunity to see the report, despite contacting WA Health back in March 2017 to offer assistance to ensure the consumer voice was part of the review they were to undertake.

Having now read through the report, these are some considerations:

Staff Morale is clearly a patient safety issue

The report begins with highlighting the link between staff morale and patient safety, including the sentence on page three in bold typeface:

‘organisations with a highly-engaged workforce perform better on safety, quality and patient experience measures’

And then, patients are barely mentioned again, until page 12 in the section of the report entitled “Impact on Quality of Care.” Here the Consumer Advisory Councils finally get a mention and make positive comments about increased engagement under the executive management that is the target of the report. They also note concerns regarding adverse media about staff morale diminishing patient confidence in attending to seek help.

While the report states there has been no evidence found of patient safety issues, there is a perception among staff of under-reporting of clinical incidents:

‘Also of concern were comments by some staff that the current culture was not conducive to the reporting of clinical incidents and that they believed under reporting was prevalent, inferring that any risk to patient safety was not being adequately captured.’

It then highlights that there has been an increase in the number of incidents reported, which could also infer that if there is under-reporting, then indeed there may have been impacts on patient safety.

Patient Opinion

While acknowledging the very dedicated and effective members of the Councils, I would note that as a former Community Advisory Council member, I was often plagued with doubts that I understood the current issues facing patients and families on the wards that very day. Members of Consumer or Community Advisory Councils work hard to understand the complexities of the health system to provide useful input.  Being able to code-switch between the worlds of lived experience and the health system is essential to being effective.

But also vital is the experience of patients and families on the wards who are not fluent in health-speak. Health Consumers’ Council urges any patients or families who would like to tell their recent stories about any Child and Adolescent Health Service, positive or negative, to access the Patient Opinion website to do so. This moderated platform provides the opportunity for patients and families to provide anonymous feedback to promote an ongoing, transparent, quality conversation about our health services. It may ensure patient feedback is received that would have otherwise be lost from the conversation as health service complaints processes that can be hard to access. Also, their outcomes are hidden from public view.

Have we got the right target?

The Governance paragraph on page 10 has one sentence that gives pause:

‘Many staff related the changes in leadership style and tone to the current CE (Chief Executive) and his new executive structure; however others report that there has been a history of poor communication and transparency in style that has been in place for many years and is not attributable to this.’

While Professor Frank Daly has already fallen on his sword so to speak, there is a doubt in my mind that this is the actual basis or crux of the matter. We all need to keep a watching brief on this.

What happens to the patient outcomes?

The report has noted that:

‘The reviewers believe that this risk [to patient safety] will become realised, if the recommendations are not actioned.’

Implementing recommendations can sometimes be as elusive as sticking to a new diet. The goodwill may certainly be there, but without some kind of transparent tracking of progress, there is always the risk the report will remain rhetoric rather than reality. While Recommendation 1 has already been actioned, there are another 15 that need attention.

It is notable too that there is not specific recommendation addressing how the Child and Adolescent Health Service will partner with consumers to address this staff engagement/ patient safety issue. Despite our national hospital and health service accreditation benchmark of consumer engagement, Standard Two -Partnering with Consumers, consumers are often asked to the table last, and somewhat reluctantly. It is notable that the Child and Adolescent Health Service Board does not have a member who might reasonably be acknowledged by those in WA who know each other (i.e. all of us) to have strong, independent consumer advocacy credentials.

It can be said that expertise lies at both ends of the stethoscope, and in the case of the Child and Adolescent Health Service, it could be argued that neither end has had the power or voice of the health administrator. The Health Consumers’ Council sees the opportunity for effective partnerships between consumers and front line clinicians to drive ongoing in health reform and safety and quality initiatives. Consumers continue to be a massive, untapped resource in health system reform.

Pip Brennan |  Executive Director | Health Consumers’ Council | 0406 290 923

Celebrating people who make a difference…

Have you ever encountered a person who absolutely stands out in the way they approach the work they do? There is a noticeable difference in attitude and energy between those who are truly engaged in their role and those who are not… and how difficult must it be to face up every day to something you are not enjoying and you don’t believe in?

This year I have been working with someone who I have never met face to face. We communicate via email and phone and have glimpsed each other once via video conferencing. Why haven’t we met? Because this wonderful person lives in Katanning. Her name is Karen and she has been incredible in her enthusiasm and energy around engaging with people from diverse cultural backgrounds.

Briefly, Katanning is home to people from many different countries, some quite newly arrived while others have become long term residents. It is known as a town that supports cultural diversity and which has been highly successful in doing so. Karen works for the Department of Health in two roles, as a Health Promotion Officer – Culturally and Linguistically Diverse (CaLD) and as a Project Officer, Sexual Health and Blood Borne Virus.

In her role/s Karen has encouraged and supported people from CaLD backgrounds to engage with the health sector with the result that there is now a Multicultural DHAC (District Health Advisory Council) in the Great Southern Region. I suspect this may be the first of its kind in WA and is a fantastic achievement that needs to be celebrated and acknowledged.

Beyond that I would like to say, ‘thank you’ to Karen for the level of interest she has shown in and her support for the work that I do and to acknowledge those things. Also for her willingness to be involved in HCC’s Refugee and Asylum Seeker Health Research Alliance (RAHERA) and her participation in other activities this Program undertakes.

You are really appreciated Karen, thank you. We really value your support.

Footnote: On May 11, I travelled to Katanning and ran information sessions and workshops, also the following day. There I met Karen and she is as dynamic as I suspected!

Click here to read about the work Health Consumers’ Council did with Katanning Senior High School.

Louise Ford | Consumer and Community Engagement Manager

Image Source: https://smallbiztrends.com/2016/11/ways-to-thank-customers.html