Month: June 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