Tag: advocacy

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

Patient Experience Wrap-Up Day One

On Thursday 28th and Friday 29th April the Health Consumers’ Council hosted our inaugural Patient Experience Week (PXW) with a series of events at The Boulevard Centre in Floreat. We are excited to be finalising our new HCC Podcast of those events we were able to record, and in the meantime, here are some event highlights for you from day one of PXW.

The Welcome and Introduction

Olman Walley gave a Welcome to Country on both days, providing his own unique and gracious welcome in language and with music. His didgeridoo playing was evocative and on the second day, and veered off into rap. Sense of humour that one!

Pip Brennan presented on behalf of the HCC and thanked the sponsors Illuminance and Empower ICT who provided essential support for the event. Pip then spoke about how HCC supported consumers individually through advocacy and supported health reform through consumer representative training and sector support. The importance of supporting the health sector in working with Aboriginal as well as Culturally and Linguistically Diverse communities was highlighted. Pip also referenced the December 2015 Clinical Senate Debate on the Patient Experience. She particularly highlighted the four Recommendations from that debate which were endorsed and therefore WA Health has a mandate to ensure they are implemented. The Recommendations are:

Pip Podium 4

  1. WA Health should introduce a system-wide, consistently branded ‘Patient First’ program that drives the patient experience agenda and under which all key patient experience improvement programs are measured, with results publically available.
  2. In consultation with consumer and carer peak bodies:
    •A statewide definition of a great patient experience is developed that incorporates a value-based, patient-centered approach. WA Health, as system manager, is to ensure this is adopted by the whole of Health.
    •Patient experience tools are developed or selected for use that reflect the indicators that matter to patients.
  3. The Senate recommends that a consumer is appointed as a member of State Health Executive Forum (or its equivalent post legislative amendments to create Health Service boards).
  4. The Senate recommends Chief Executive Officers visibly and actively lead consumer partnership programs and have related Key Performance Indicators (KPIs) in their performance agreement with their boards.

To see the full presentation, click here.

The Director General

The Director General of WA Health formally opened the launch and stated WA Health’s commitment to patient care, patient safety and providing the best patient experience. He highlighted that it is essential to have an organisational culture where staff feel valued and respected, and patients are treated with dignity and respect. In order to achieve that, consumers must be involved in strategic processes that guide the planning, design and evaluation of health services. He referenced the December 2015 Clinical Senate Debate on Patient Experience  and highlighted WA Health’s commitment to developing a Compassionate Care initiative. Compassionate Care is about the way in which people relate to each other. This means the way staff treat each other as well as they way they treat patients. His powerpoint can be accessed by clicking here.

DG PodiumThe Director General closed with these statements:

  • The patient journey is unique to each person. Every interaction with patients and their families impacts on their experience.
  • We must transparently measure the patient experience.
  • Lessons learnt – through both positive and negative feedback – can be used to improve health services.
  • A system-wide definition of a great patient experience should be developed.
  • Consumers must be involved in the planning, design and evaluation of health services.
  • It is essential to have an organisational culture where staff feel valued and respected, and patients are treated with dignity and respect.
  • This starts with our behaviour and our values.

Dr Karen Luxford

 

We were then joined on Skype by Dr Karen Luxford, Director of the NSW’s Clinical Excellence Commission. The gremlins were with us at this point, so the Skype presentation didn’t record. After Patient Experience Week was over, Karen kindly agreed to be interviewed about the Clinical Excellence Commission, their Patient Experience Week events and why the patient experience movement is important. You can listen to that audio by clicking the link below:

The final presentation of the launch was by the irrepressible Jason Wolf, CEO of The Beryl Institute. The Beryl Institute is an international community of health professionals, consumer, carer and community members dedicated to improving patient experience in health care. His presentation was highly motivating, and can be watched by clicking the arrow below. Alternatively you can view his slide presentation here.

The Actors – Two Sides to the Patient Experience

Straight after the launch, Agents Improvocateurs took to the stage to enact a patient journey scenario, inspired by stories HCC hears from consumers who seek our advocacy assistance. In the scenario, a patient had been stung by a bee near her breast and attended the Emergency Department and was then put on a children’s ward where she endured hours of hunger, (children’s portion dinners) pain (failed insertion of a cannula to administer antiobiotics, then a reaction to those antibiotics) and being ignored. She was also confused and frightened by talk of a possible mastectomy in a discussion between two health professionals in a conversation in her hearing which excluded her. The audience offered suggestions for how things could be done differently and the scenario was played through again. It also explored the situation from the provider perspective – each interaction always has at least two people and in this one we explored the fears and humiliation of the nurse who had failed to insert the cannula. Alma Digweed from Bentley Community Advisory Council agreed to join the actors on the stage and was the star of the show.

Lunchbox Session – Organisational Approaches to Patient Experience

This diverse session included a presentation from Anita Deakin and Carmel Crock, in relation to the Emergency Medicines Events Register (EMER). This interesting and innovative tool is a change management mechanism in that in encourages both clinicians and consumers to report near misses and develop a culture which supports a learning approach to near misses to support a safer patient culture. The Powerpoint presentation is available here, and you can find out more about EMER here.

Next up was James Sherriff, General Manager of St John’s Ambulance and former paramedic. James’ presentation focused on the internal change that St Johns have actively sought within the organisation to ensure front line staff always have the patient at the centre of the care. You can view his Powerpoint here.

The session closed with HCC’s Dr Martin Whitely and Murdoch researcher Dr Norman Stomski describing a key research project they have been collaborating on. HCC provides individual advocacy for mental health consumers who are voluntary. HCC sought to better understand what the advocacy intervention meant for consumers whose patient journey was far from smooth. 60 de-identified individual advocacy cases were written up for research analysis. Martin and Norman’s joint presentation can be viewed here.

Workshop Session – Partnering for Patient Experience

The day concluded with a workshop facilitated by HCC’s Steph Newell. Presenting was Professor Anne Williams on her years of research and development of Patient Experience Tools – known as PEECE and PEECH. Helen Fernando from South Australia presented on the unique and effective Messenger Model that she has developed, and  a version of the concept runs at Flinders Medical Centre. The Messenger Model involves the consumer representative providing a conduit for information about health care needs and experiences to reach front-line staff during the episode of care. The feedback about what has gone well or otherwise alerts staff to issues that may be addressed whilst the patient and family are still in the care of the health professional team so that the patient experience can be transformed. Steph Newell explained the key factors of partnership – trust and common purpose. During the workshop session, audience members were encourage to view sections of this video on patient experience and consider the scenarios within the context of the tools discussed – PEECE, PEECH and the Messenger Model.

The Theme, The Crowd

We aligned with the international theme for 2016 Patient Experience – “Connecting for Patient Experience – We are ALL the Patient Experience”