So long Sydney

This will be my final blog post from Antipodean soil. I had a few days in Sydney before flying home and managed to cram in some social and some craftivism, as well as in person meetings at Sydney Children’s Hospital and the Clinical Excellence Commission and two phone meetings, one with a bereaved family member and one with a Health and Safety Expert in New Zealand.

When I was planning my fellowship I spoke with Yvonne Birks from York Uni and the School for Social Care Research in the UK. I was trying to track down Australian colleagues she’d written a paper with. She helpfully introduced me to Reema Harrison, who in turn introduced me to Laurel Mimmo. This is a good example of the magic of the WCMT Fellowship process as I’ve experienced it, people are so generous with their contacts and time and an intro from one to another to another, led to me spending much of last Thursday at Sydney Children’s Hospital with Laurel.

Laurel is a Patient Safety and Quality Manager at the hospital (and a postgraduate student at UNSW) and has done a number of relevant projects, including working on developing a communication board, that was co-designed with patients and their families.

The board is designed to enable patients and families to communicate with staff how they are feeling, in a very visual and accessible way. This is still in development stage and the current challenge is a logistical one, having the board behind the patient’s bed is not helpful if they are to update it regularly.

Laurel also described another project that is looking at quality and safety issues amongst children with a learning disability in hospital. That project, which is currently being written up, focused on ‘Factors leading to undesirable outcomes of hospitalisation for children with intellectual disability’ and it was a systematic review of all relevant literature from January 2000 to August 2016. The findings will resonate with many families of people with a learning disability, and I’m sure with many staff. It shows, what many have been saying for years, that being in hospital is especially risky for learning disabled people, and that staff need to listen to, and work with, families:

This message was one repeated by Maria Heaton who I met later with Laurel. Maria is a nurse consultant who works with the palliative care team at Sydney Children’s Hospital and she is also a mother of three children, two of whom were disabled and have since died. The photos in Laurel’s poster are of Maria’s son Tristan. I wish I could have spent longer with Maria (and Laurel) but we were snatching a catch up in the middle of a busy day.

Maria talked about the Agency for Clinical Innovation’s Intellectual Disability Health Network, I’d tried to catch up with them on this trip but failed and will try to hook up with them again in the new year. They have produced an Essentials Toolkit that any service can look at and see if they meet good standards for healthcare for people with a learning disability. There is a self-assessment tool and information and options for how to improve things if you don’t score too highly.

Laurel and Maria both discussed the challenged of accessing and experiencing healthcare with a learning disability. Laurel mentioned that if you don’t fit neatly then you just have to be lucky and hope that you find an individual who looks out for you; which means instead of creating a system that works well for everyone, we are relying on the good nature of people who go into healthcare. Something that is already over exploited and isn’t safe.

Maria raised the issue that there are no clear processes for feeding back in healthcare, unless you make a complaint. Which in turn creates a climate of fear. Maria thinks that we need a general screening system for all learning disabled patients on admission, like you would for newborns and young children. It goes without saying that to do that well you would need to engage with families and carers.

One thing that really struck me was hearing Maria describe her experience of the health system (especially as someone who works within the system). She said:

Life is tough already without the additional trauma of the interactions with medical professionals.

She described how whenever she took her son, Tristan, into the Emergency Department (for any reason) she would be asked if she would ‘like to let him go’. Tristan had in place a palliative care plan and some professionals took that to mean he would not require or deserve treatment. The underlying assumptions about someone’s quality of life, and whether they should be treated, appear to run deeply throughout most interactions with the healthcare system. I’ll leave you with a quote from Maria:

People have got better at talking the talk, we’ve got the policies, the catchphrases, but their hearts have not changed, things aren’t actually improving…. I’d say don’t let power and politics let you lose sight of patients and why you are in this in the first place.

The first of my two phone meetings while I was in Sydney was with Richard Gibson, Director and Risk Manager Business Leader at Impac in New Zealand. Impac work in occupational health and safety and advise large organisations on risk management frameworks and health and safety systems. Richard is the lad for the information management division and is responsible for cloud based tools they are developing to collect and manage risk data and information relating to incidents and injuries and provide analytics to drive process improvements and ultimately reduce illness and injury.

Richard explained the Health and Safety at Work Act in New Zealand and the equivalent in Australia. Not learning from past failures was the driver behind this relatively new legislation and potential liability for organisations and their officers (including company directors) is now extremely high. Consequently:

Organisations must ensure a quality investigation is undertaken and learnings shared across their operations.

Impac do a lot of investigation work and train people on good investigation processes from an organisational learning perspective. They have also been expert witnesses and independent investigators for high profile events. Richard discusses the value of an independent person being involved in investigations, especially where conflicts of interest exist. He pointed out that managers and organisations don’t like highlighting their own failures and the threat of liability drives an agenda of not highlighting errors. Richard believed that the worksafe legislation could be a real driver for families, in forcing/encouraging providers to improve their practices, and also in getting answers if the worst happens and a relative dies. Families, not surprisingly, have low confidence in the system investigating the system.

Richard, refreshingly, did not agree with the notion of a no-blame culture. He advocated for a just culture. He believed that we need to develop a reporting culture, for that we need to develop a just culture, and for that we need to develop an informed culture. He was not advocating for a blame culture, especially in instances of lapses or basic human error, but that is not the same as what is required when an organisation or staff within it show flagrant disregard of safe working practices.

My second phone meeting was with a bereaved family member. I’d like to write up our conversation in more detail than this post will allow so I’ll do that when I return home. I will say that it was a heart breaking conversation in many ways. A much loved child whose life was ended prematurely in no small way due to the attitudes and assumptions of healthcare staff. A conversation that echoed that of my conversation with Alison in New Zealand and many other families in the UK I’ve spoken with.

My final meeting took place this morning with Bernadette Eather and her patient safety team at the Clinical Excellence Commission of NSW.

Bernie, Kay, Alison, Mary, Bernadette and Debbie outlined the work of the CEC in improving patient safety across the State, highlighting a number of projects and approaches they have developed. They were very upfront that to date learning disability, and disability more generally, has not featured highly in their work. That said they were all in agreement that when things have gone wrong for patients with a learning disability that was often due to human factors such as anchoring and diagnostic overshadowing (the tendency to allow your personal bias to influence how you treat someone with a learning disability, frequently everything is put down to someone’s learning disability even when it is nothing to do with that e.g. someone is in pain, but it’s ignored because clinicians believe that it is just the way someone behaves).

The CEC team were aware that they needed to do more work in this area, and were committed to working with families within that. They also talked about the need to focus more on communication and handover, on organisational culture, and on support and supervision for junior doctors – especially in relation to delegation and escalation. The CEC have developed a number of policies, programmes and toolkits such as Between the Flags and the REACH programme – developed with the Day family after their son Kyran died, due to failure of staff to listen to them and escalate his treatment. The REACH programme allows families to activate a rapid response team themselves if they feel staff are not listening to them, and their relative is deteriorating. It’s early days but the CEC felt that it was starting to work well in Acute hospitals but less well in Emergency Departments, which is of course where its likely to be most needed.

The team shared the concerns of some healthcare staff that people would ‘misuse’ the REACH programme, and shared how these had been entirely misconceived (as is so often the case). I can not imagine how desperate a family must feel, or how much care must have broken down, to feel the need to make the call. It goes without saying that families do not abuse the system, and early signs are that it may well help.

We also talked about Open Disclosure and the need for culture to change within the healthcare system. Open Disclosure has been in place in Australia for about eight years now and the team felt that it was working well, and suggested that maybe in time the Duty of Candour would have a similar impact, even if it has not yet.

The role of families in mortality and morbidity reviews, and investigations when things go wrong was also covered. An amendment to law is currently being discussed to change the investigation process to include an initial risk assessment in the first 24-72 hours, then findings after about 30 days, with recommendations being made within 70 days. This will be discussed in the Upper House of the NSW Parliament in February 2018. The current system means families could hear from the health board or the CEC at an Open Disclosure meeting immediately after their relative dies, then hear nothing for 70 days. Bernadette felt strongly that this was far too long a period for bereaved relatives and for healthcare staff.

Finally, we also discussed the interplay between the Ombudsman’s office work on reportable deaths and that the Ombudsman and the Coroner can both make recommendations for NSW Health to make improvements and that these would come through to the CEC. It felt like a good meeting to end my Phase 1 trip with.

Now I get to travel home and deliberate on what I’ve heard and identify ideas and inspirations, things that I need to find out more about or explore further. I’ll also have to readjust to life without much sunshine, banana bread or avocado. I want to finish this post by acknowledging the kindness and generosity of each and every person I’ve met or spoken to in Australia and New Zealand, and by thanking Winston Churchill Memorial Trust for considering this an important area and agreeing to fund my travels. This trip has been more than I could ever have imagined, a total privilege to spend 5.5wks exploring an issue that is amongst the most important I can imagine. Thank you to everyone who has helped make it happen.

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