As part of Aotearoa Patient Safety Day, we caught up with Sheila Beckers, an independent consumer representative who works with Te Whatu Ora Capital, Coast and Hutt Valley to help elevate the patient voice in the healthcare system. Sheila is a voice for people who “fall through the cracks” and is effecting change through positive support; equity and access for those who don’t have a voice in the healthcare system are big priorities for her.
Sheila chatted to us about what led her to pursuing a role as a consumer representative, as well as her biggest inspiration, her mum, Joan. Joan is also the kind of person Sheila advocates for; vulnerable people who are being left behind as the way of world shifts, particularly in favour of technology. Sheila says she always thinks of her mum when doing her mahi.
Read on to learn more about Sheila’s journey.
Tell us about your role as an independent consumer representative.
To me, patients and their whānau, should be at the heart of healthcare, with the needs and wellbeing of staff encompassing those patients and their whānau.
As a consumer representative I provide advice, support, and feedback to Te Whatu Ora Capital, Coast and Hutt Valley staff on a range of projects or work streams when invited to do so by the Consumer Engagement Manager and team. I look at mahi I am given through a ‘consumer’ or ‘user’ lens.
The purpose of healthcare services in any community is to meet the needs of that community, so I see my role as bringing that community, or user voice, to the centre of the mahi I am involved in. I’m outside the organisation looking in with a world view of how it feels to be vulnerable on the bed, in the waiting room, waiting for results and communications, unable to access the support I need, or worrying about my own, or someone else’s, diagnosis and care.
Tertiary level healthcare provision at Wellington Hospital has to serve the diverse communities of unwell people from many rohe (regions), not just our own district, so I think about that perspective as well. I’d like to think I bring some humanity into the often very clinical kōrero (conversation).
Why did you chose to take on this role/what lead you to this role?
I survived a medullary infarct – stroke in my medulla – aged 43, in 2008 that could have killed me. My stroke was not recognised as I was ‘too young and didn’t have any risk factors’ according to the Emergency Department doctor who diagnosed me with either food poisoning or a middle ear infection.
My world came to a complete stop and I was fighting to stay alive. Yet the symptoms I described were ignored because they weren’t visible. My arrival in that ED was the start of two very difficult weeks in hospital, with numerous gaps in care along the way. I learned first-hand what it feels like to be helpless and vulnerable, and unable to get even the basics of care and dignity patients should be able to expect when profoundly unwell.
When I had recovered enough to think and write, I submitted complaints to the hospital, which led to hui with the ED and nursing staff about my experience.
When consumer engagement started becoming a priority within healthcare organisations back in 2015, seven years after my stroke, the Quality staff at that DHB remembered me and invited me to join a Consumer Roopu being established. That’s how I came to be a consumer adviser! When I moved to Waikanae a few years ago I was approached about continuing my mahi at what is now known as Te Whatu Ora Capital, Coast and Hutt Valley.
What do you love most about being a consumer representative?
Feeling like I am making a difference by providing the patient voice in any of the kōrero or kaupapa I contribute to. I particularly enjoy being involved in adverse event review mahi, keeping the patient and whānau needs and perspective at the centre of the review process.
What's your biggest work achievement whilst being in this role?
Speaking up on behalf of patients who have experienced harm while in hospital, and their whānau. When I first started being involved in adverse event reviews back in 2015-16, some hospital staff were reluctant to have an outside – random – person on review teams. But I believe I have been able to build trusting relationships with staff and we all work together to complete patient-centred reviews. Sometimes there is no fix, but I am heartened by the effort that the Capital and Coast Quality team and clinicians involved in adverse event reviews put into understanding how it feels as a patient or their whānau, when an adverse event occurs. And I am grateful for the sincerity of acknowledgements and apologies in event reports, for the harm done.
What does patient safety mean to you as a consumer representative?
To me patient safety is about:
- the physical, emotional, and spiritual safety of patients and staff;
- equity – some patients may require more input to achieve the same health outcomes as other patients;
- meeting Te Tiriti obligations;
- staff treating all patients with dignity and respect, acknowledging and accepting differences in cognitive and physical ability, socio-economic status, ethnicity, gender, sexual orientation etcetera without judgement;
- patients and whānau being listened to, informed, included in discussion and care planning;
- having the right to receive the appropriate testing, diagnosis, treatment, and care, in a timely fashion;
- having the systems, processes, trained staff, and equipment, to deliver the care needed;
- thoroughly investigating adverse events as per the Health Quality and Safety Commission’s Severity Assessment Code guidelines, then acknowledging when harm has occurred, and taking steps to apologise, and try to change things so it doesn’t happen to someone else;
- ongoing staff orientation and training programmes that use real events and examples to humanise what care should look like.
What's the best piece of advice you’ve ever been given - professional or personal?
My nana used to say “Always look on the bright side Sheelie”, and “Take one day at a time!” As a child these simple statements were mocked but make much more sense to me as an adult. She was right!
As a consumer adviser, I learned something from my Capital, Coast Consumer Engagement Manager Laura Ellis: “Throwing grenades isn’t helpful.”
To make a difference, and effect change, consumer advisers need to work alongside staff, building relationships and trust. The patient voice matters, but making it heard requires a collective effort.
Who is your biggest inspiration/or has had the biggest impact on your life?
My mum, Joan Robinson. 84 years old now and shrinking, living with cataracts that never quite reach the endlessly shifting threshold for treatment, hearing loss, arthritis, and a body that aches every day. Yet she never gives up.
Joan was widowed suddenly at 50, and had to take over running the family farm, and building a life for herself and our family, without my dad, in an instant. She has spent her life putting others first, no matter how tough things have been for her.
She is fiercely independent, still makes all her meals and baking from scratch, eats what she grows, barely generates any rubbish, spends her days doing labour-intensive volunteer mahi maintaining community and private gardens (up to ten each week), and also maintains her own home and gardens. She knits singlets and slippers for babies, and still sews.
Joan makes the world a better place with her kindness, energy, generosity, and heart. She has taught me to be brave, strong and resilient. I am lucky to be her daughter.