Unique perspective – Experienced Brisbane based consumer representative and advocate in the area of maternity, blessed two healthy children, no chronic disease in family, routine interactions with the health care system. Suddenly navigating through the acute healthcare system, very quickly advocating, seeking patient & family centred care. Two years on, learnings and reflections from our daughter’s journey. place patient-centred care within a context of national and state reform including the new Standards. Provide links to resources which support service providers to provide patient-centred care and empower parents to advocate for patient-centred care for their children.
Some of my back story – In 2003 we were planning to conceive our first child. I knew I wanted care with a known midwife in a home-like environment in a nearby hospital. Frustrated that this was either non-existent or access limited, I became involved with consumer groups Friends of the Birth Centre and Maternity Coalition. I was very lucky to be able to have our first daughter Lily in 2004 with care from birth centre midwives and a private obstetrician.
Second time round we chose homebirth with the care of a midwife in private practice.
Driven by my passion that how women and babies are looked after before, during and after birth MATTERS, over the last nine yearsI’ve sat on many hospital-based, government, national and professional committees, helping to make services and policies more family-friendly and evidence based, and increasing women’s access to differentoptions including care with a known midwife. I’ve presented at conferences, met with politicians, organised media events, developed relationships with hospital managers and health care workers, advocated for individual women for care that meets their needs and much more. I’m currently a committee member of Qld’s peak consumer body Health Consumers Queensland and have been a Maternity Coalition consumer representative at the Mater Mothers Hospitals since 2005.However two years ago my family’s world was turned upside down.Husband and five year old daughter went on a camping trip in Northern NSW to celebrate him getting a new job. Received call no parent wants. Had lost control of his 4WD on a dirt track and it hit two trees head on. Couldn’t breathe and wanted me. This is our family’s story, I’ll reflect on key things that stood out for us as exemplar consumer-centred care during our journey.
-My mother and I arrived at Lismore Hospital having driven from Brisbane. My husband (pictured here with our daughter Lily and my Mum) was miraculously uninjured however Lily had a severely ruptured liver and internal bleeding. The call was made to airlift her to a tertiary childrens hospital and that she would need an NG tube and a urinary catheter for the journey. I knew these procedures could be very traumatic and the whole journey ahead set her up with a fear of hospitals for life. Or opportunity for her to learn how to navigate health care system to ensure her needs were met. - Birthtalk is a Brisbane-based support organisation who help women heal from disappointing or traumatic births and prepare for empowered, informed births. They talk about that it doesn’t necessarily matter what unfolds during a birth, it’s how the woman feels during the experience and how she is treated by staff and her support people that’s matters – does she feel safe, respected, listened to, like she is being given information to make decisions, like she is at the centre of care? If a woman doesn’t feel this, even if she has had from the outside what might have been an uncomplicated vaginal birth, then there is the danger that she will be traumatised by her experience, and even go on to develop post traumatic stress disorder. Conversely…. So with this in my mind, I asked the nurse to explain to Lily why the ng tube & catheter were being recommended and what the procedures would entail. We said that Lily could be the one to say when it started.
seamless process, nurse was amazed at how calm she was.
Lily was airlifted to the Mater Childrens’ Hospital in South Brisbane and spent her first 5 days in PICU for pain relief and monitoring. The recommendation was to treat with conservative management, and having been given the reasons and evidence behind this, we agreed. This is my mother standing by the bed, who ironically until a few years prior, had been a social worker for 7 years in this very unit.
Transferred onto the surgical ward, Lily was reluctant to sit up and stand, and unable to keep food down. It was recommended that we strongly encourage her to move, in order to help absorb the fluid that was gathering in her belly. I regret forcing her, as you will discover she had very good reasons for not wanting to move though no one knew why.
This is Lily’s then 2 year old sister Mia, who brought many much needed light-hearted moments to our journey, in this photo doing a floor show for us all!It would be no surprise to any of you, but I think it was to us, that it quickly became apparent that it was necessary to always have either myself, my husband or my Mum with Lily all the time. Of course we wanted to and there simply wasn’t the staff ratio to be otherwise. I was grateful my family had the capacity to do so (I saw some families for whom circumstances meant this wasn’t possible) – we lived locally and we were blessed with support from our family and friends for meals as well as playdates for Mia. I was also grateful that, as I was still breastfeeding Mia, she and I were both allowed to sleep on the day bed each night.
This was Lily almost two weeks since the accident, her first time out of bed in a wheelchair, with her Christmas tree of pumps. Still unable to eat, she had had to go on TPN.She was still in a lot of pain, under the care of the pain management team who were very attentive and eased my concerns about her being on the opiate medications for such a prolonged period.
Notice her belly here above again just under 2 weeks after the accident, her first time up and walking (again, to try to move the fluid). Her belly was so swollen she looked pregnant. She had had numerous different types of scans (u/s, CT, MRI). None explained where the large amount of fluid was coming from.
As I mentioned, I had had continuity of care with a known midwife for both my pregnancies, and then the one-to-one care in PICU. I did find it a bit of a shock being on the surgical ward and having so many different carers (all needed of course) from all the different disciplines. Although everything was in her chart, sometimes they would ask me what had been happening and I have to try to remember. AT this point particularly there were lots of procedures and medications that needed to happen at certain times. Her pain was very bad at this point so I really wanted to make sure she had as good pain relief coverage as possible. Also an antibiotic dose was missed. So I decided to take in a whiteboard to track her day, write down who she had seen, etc. It helped me keep across what needed to happen and I’ve since heard of these being used as parent communication boards in the NICU at the Mater, where parents can write down when they are coming back, when they would like to bath the baby, etc. But you can also see how busy and “interrupted” the days were, and sometimes hard for her to rest (close the door).
Decision was made for keyhole surgery at 2 weeks post accident – laparoscopic washout drained 3.5L of fluid.Did feel better, even ate for a day or two, but the fluid started to reaccumulate. Didn’t know why. Frustrating, devastating, terrifying, rollercoaster. Why not yelling at us – because open communication. The consultant & the registrars were honest about lack of evidence for what was going on, honest about risks of surgery and balancing with waiting.Major surgery was scheduled at 3 weeks post accident. Adult liver surgeon brought over to work alongside the paediatric surgeon. After removing gall bladder, they discovered her bile duct was completely severed, leaking bile into abdominal cavity. Explained severe pain and inability to eat. It hadn’t showed up on any of the scans, and I believe a review afterwards of the scans showed this to still be true.Did a roux en y bypass, to connect the bile duct directly into her bowel. Epidural. Someone said this must be hard for you – knowing that I . Right care, right time, right place. Ultrasound guided drainage of another two abdominal collections a week after the major surgery. More of the rollercoaster.
During her stay, the vast majority of Mater staff supported the consumer-centred informed decision making we had started at Lismore Hospital and continued to advocate for. Eg. daily blood collections. Unfortunately there were a few instances when this didn’t happen, sometimes when another family member was with her – once they described her experiencing a traumatic cannula insertion, with the vein being missed several times and Lily becoming hysterical. Another time a nurse said that changing the dressing on her PICC line wouldn’t hurt and it did very much. She was used to being told realistic facts about procedures. She did develop an infection from the major surgery which further prolonged her stay. Overnight one night the very caustic antibiotics she required gave her an extravasation burn on her ankle, despite her saying through the night that the cannula site hurt. I believe these instances of not being listened to, as well as the sheer number of daily blood tests, drain removals, dressing changes and cannula insertions contributed to Lily still developing heightened anxiety around procedures. We made a request for the OT department and the Child and Youth Mental Health service to work with Lily and the nursing staff. The fabulous OT on the screen helped a nurse demonstrate a procedure on the doll and then Lily would do it to the doll.
The OT helped Lily negotiate for different kinds of pain relief for cannula changes and drain removals.
They did some great work together. Lily was inspired by a book written by 10 year old Jordan Fothergill called “Be Brave” about how to be courageous when having blood tests. The OT helped Lily start to write her own book called “Research on how to make things stop hurting in hospital”.
If things are going to hurt and happen to you, it sometimes helps to ask questions. One day when I got a needle I was feeling scared. Then it helped to ask the doctors what they could do to stop it hurting.
After almost seven weeks as an in-patient (including several days on day passes towards the end), having had such a complex journey, Lily was finally able to come home. The vast majority of staff, in particular the paediatric surgeon, the registrars pictured above and many wonderful nurses, can be proud that they truly provided consumer- and family- centred care.
Lily today – a happy 8 year old, I hope with the lifelong skills to advocate for herself to get what we all deserve - consumer centred care.
HCQ proposes consumer-centred care is: accessible, safe and responsive to individual consumer needs, preferences, values and beliefs. It ensures the consumer (including children) are well-informed and fully involved throughout the process and that their personal choices and circumstances guide the continuity of clinical options and transition arrangements, with coordinated physical care and emotional support respectfully delivered. It should be inclusive of the child’s support network of carers and family members. It involves mutually respectful partnerships with clear communication and meaningful conversations between children and their support networks, and health professionals and providers across public and private healthcare settings.My family feel like we received all of this.
- Strong parental advocacy – toolkit. - Open, regular, respectful, transparent communication. - Respect for & facilitation of informed decision making by answering questions, explaining options and sharing decision making.- Individualised care - true caring and support from across the disciplines including social work, child & youth mental health, OT department, pain management team, pastoral care, Starlight Room. As a parent I haven’t experienced emergency care for either of my children in a non-Mater hospital, but I have often said that I think that the Mater culture, Catholic institution & Mercy Mission influenced the wholistic, compassionate care we received. But what if enablers not there? Well connected, informed, high level of health literacy, advocacy skills. Sobering to remember that even with these things in place, it this doesn’t always happen. And when it comes to parents declining care on their children’s behalf, things get murkier and rights can disappear, even to the point of involving the authorities. I was highly distressed to read several disturbing examples of this in Mark Whittaker’s recent article “Bitter pills” published in the SMH on 13 October.
Know benefits.If need further evidence – this from QH’s Centre for Healthcare Improvement’s recent report “Patient safety: from learning to action 2012”:Research increasingly suggests that, not only is patient-centred care the right thing to do, it is associated with better health outcomes. Health services with high patient centricity are associated with reduced mortality and infection rates, reduced cost of care, decreased length of stay, and fewer readmissions, adverse incidents and complaints leading to litigation. The case for patient-centred care is compelling.
Consumer-centred care sits in a context supported at every level from consumers, service providers, professional associations and governments. It is embedded inthe national and state reform agendas.It is supported by the Australian Charter of Healthcare Rights.
Deb Picone from theComission spoke this morning about the implications of the new National Healthcare Standards for children’s healthcare. As you would be aware from 1 January next year all health services undergoing accreditation will be measured against the new National Standards.
Standard 2 requires effective and meaningful engagement of patients (& parents & carers) in the review, design and implementation of services.Lifts bar even higher – particularly it’s requirements to have consumers actively involved in decision making about safety and quality and increasing the supports which the Standard says should be provided to consumers and carers partnering with the organisation. Can use it as a lever to increase engagement. So what resources can support health services to meet Standard 2?
The Commission have recently published final versions of their Safety and Quality Improvement Guides to support service providersto meet each of the 10 Standards, including Standard 2. will be sent to all health service organisations in the coming weeks.
I also recommend you looking at these publications by Health Consumers Qld:- Consumer and Community Engagement Framework. (The Framework is being adapted by other States including SA).Developing a consumer and community engagement strategy: a toolkit for Hospital and Health Services (HCQ has developed this as a how to companion guide to inform public and private health services' application of HCQ's Consumer and Community Engagement Framework in the development of engagement strategies and approaches. You will be able to access the toolkit on the HCQ site in the near future- Consumer Representatives Program Agency Handbook Health Advocacy Toolkit (mentioned ealier) to support patient advocacy and informed decision making
I hope that by:- sharing my family’s story of exemplar patient-centred care;- providing you with supports for services to do this, at a service delivery level and across a service; and-Giving you links to some resources….…that you are stimulated to think about your role in ensuring that consumer-centred care is in place at all levels, from service delivery through to policy and planning and quality improvement.
Melissa Fox - Informed Decision Making & Patient Centred Care for Children From a Parent's Perspective
INFORMED DECISIONMAKING& PATIENT-CENTREDCARE FOR CHILDRENFROM A PARENT’S PERSPECTIVE Melissa Fox, Health Consumers Queensland & Maternity Coalition
HCQ’s definition of consumer-centred care accessible, safe and responsive informed, active decision making coordinated care inclusive of the patient’s support network mutually respectful partnerships
What were the enablers? Parental advocacy Openness Informed decision making Individualised care Mater culture Health Consumers Queensland Health Advocacy Toolkit www.health.qld.gov.au/hcq/publications/hcq_toolkit_may11. pdf
Why patient- centred care?Research increasingly suggests that, not only ispatient-centred care the right thing to do, it isassociated with better health outcomes. Healthservices with high patient centricity areassociated with reduced mortality and infectionrates, reduced cost of care, decreased length ofstay, and fewer readmissions, adverse incidentsand complaints leading to litigation. The case forpatient-centred care is compelling.QH Centre for Healthcare Improvement’s report “Patient safety: from learningto action 2012. Fifth Queensland Health report on clinical incidents andsentinel events in the Queensland public health system 2009–10 and 2010–
The Australian Charter ofHealthcare Rights http://www.safetyandquality.gov.au acsqhc_program/australian- charter-of-healthcare-rights/
Australian Commission on Safety & Quality in Healthcare (ACSQHC)National Safety and Quality Health ServiceStandards http://www.safetyandquality.gov.au
Standard 2:Partnering with Consumers Consumer partnership in service planning Consumer partnership in designing care Consumer partnership in service measurement and evaluation
Safety and Quality Improvement Guides http://www.safetyandquality.gov.au/our-work/accreditation/nsqhss/safety-and-quality- improvement-guides-and-accreditation- workbooks/
Health Consumers QueenslandpublicationsConsumer and Community Engagement Frameworkwww.health.qld.gov.au/hcq/publications/consumer-engagement.pdfDeveloping a consumer and community engagementstrategy: a toolkit for Hospital and Health Serviceshttp://www.health.qld.gov.au/hcq/Consumer Representatives Program Agency Handbookwww.health.qld.gov.au/hcq/network_reps/agen_handbook.pdfHealth Consumers Queensland Health Advocacy Toolkitwww.health.qld.gov.au/hcq/publications/hcq_toolkit_may11.pdf