I’m at the stage in my trip where my motivation to blog daily is waning a little. A lot of what I’m hearing is reinforcing what I’ve already been told, and I’m taking copious notes whenever I meet someone, however the heat in Brisbane (it was hot, very humid and damp – a little like living under a hot air dryer, mostly with no sun) zapped me somewhat and I decided to save my energy and not blog. Now I’m in Melbourne, more air, less humidity, and trying to capture the brilliance of my whistle-stop four days in Brisbane.

I arrived in about midday on Saturday and spent the afternoon taking in the sights. I jumped on a catamaran from where I was staying (Teneriffe) into the South Bank, a 45min trip down the river and a good view of the development and high rises mixed amongst old school building. I strolled along the banks of the river, enjoying the people watching and headed to Queensland Gallery of Modern Art. They have a Yayoi Kusama exhibition at the moment: Life is the heart of a rainbow. I didn’t really know anything of Kusama’s work before, and the exhibition gives a chronological overview of it, including interactive exhibits and brilliantly surreal installations. I spent a few hours enjoying Kusama’s exhibition and others at the gallery before heading back to my accommodation for an early sleepless night. It was only when I met Sally the next day that I found out that Kusama has actually voluntarily lived in a mental health hospital for years, and credits her mental health as the drive for much of her work. She’s brilliant.

The next brilliant woman I encountered was Sally Robinson. Sally had driven about 100k to meet me for lunch on Sunday (I can’t believe she would do such a thing but I’m very glad she did). I jumped on a very disappointing Gold Coast train from Brisbane that was neither gold, or travelling along the coast, and met Sally at the end of the line. We headed to Palm Beach for lunch followed by a walk along the beach. We discussed lots of things, especially the abuse and neglect of learning disabled people, the topic of Sally’s PhD and a long held interest of mine since the Safety Matters safeguarding change project days. Sally gave me a copy of her book which I’ve almost finished, a comprehensive overview of the cumulative impact of abuse and neglect on nine learning disabled people and their families. You can get a copy here, I’d recommend a read.

I fell on my feet on Monday and gate crashed an event organised for Metro South Health staff. I was scouring eventbrite at the weekend trying to find events for International Day of People with a Disability and came across a Disability Health Symposium being held at the Translational Research Institute. I booked a place and headed up there first thing. The programme could have been designed purely for my benefit! Two presentations in particular were very relevant. Paige Armstrong from Queenslanders with Disabilities Network gave an overview of their organisation, results of a recent survey, and highlighted a number of projects that they run. QDN members recently ranked health as their second most important priority (after NDIS – the new National Disability Insurance Scheme currently being rolled out across the country, a move to more personalised methods of funding, choice and control etc). I live tweeted Paige’s presentation but this was indicative of the challenge presented for people:

QDN members feel some of moves from institutionalised model to community and inclusion has led to breakdown in knowledge amongst health professionals

— GeorgeJulian (@GeorgeJulian) December 3, 2017

Even though people could see huge benefits from moving out of institutions, there was a sense that health needs had dropped off the agenda at that time. If you click on the tweet above or here it will take you to the thread of what was said.

Paige was followed by Mary Burgess, the Public Advocate for Queensland. She was discussing a report published in February 2016 Upholding the right to life and health: A review of the deaths in care of people with disability in Queensland written by her predecessor Jodie Griffiths-Cook. The report reviewed all information on deaths of people with a disability held by the State Coroner (111 deaths) and included those related to someone with an intellectual disability, aged 18 or older, occurring between 2009 and 2014, where the death was reported to the Coroner and there was at least a minimal level of investigation. 73 of the total 111 deaths met the criteria.

Mary highlighted some of the challenges of those criteria, which are all too familiar to anyone who has read my previous blog posts – it relies on a death being identified and notified to the Coroner in the first place and it also relies on the Coroner being astute enough (and interested enough) to require some level of investigation. Mary stated that

This was not a prevalence study, it is widely acknowledged that there is a high degree of under-reporting of these deaths and a lack of awareness in relation to reporting obligations

The findings from the review of the records of these 73 deaths are remarkably similar to what is found elsewhere:

• median age of death was 53, that’s approximately 25 years less of life than the general population
• 6 deaths were due to aspiration, the remaining 67 died from ‘natural causes’, however
• over half of the deaths reviewed were potentially avoidable including 62% of deaths occurring in hospital

This was what Mary highlighted, together with an almost apologetic statement that the report had over 60 recommendations, that tried to lay a blueprint for change, but that potentially overwhelmed the government who didn’t know where to start. This report is a brilliant piece of work and I couldn’t help feeling that an opportunity was missed to really impress upon healthcare professionals the difference they could make in preventing these deaths (I know I’m biased and that’s my agenda). Jodie Griffiths-Cook in signing off the foreword to the report stated:

This review is the first of its kind in Queensland. Clearly we have the information that we need to make a difference… the next steps involve translating this information into action.

I couldn’t agree more. If the government don’t know where to start, start with the first recommendation ‘Report annually on deaths in care’.

Monday afternoon I was hosted by Sharon Pendergast and Cole Naylor who work for Multicap, a high needs disability support provider. They have recently been working on developing Quality of Life measures for people using their services, based on seven domains (self-determination, physical well-being, material well-being, emotional well-being, personal development, social inclusion, interpersonal relations and rights). They talked me through the work they’ve done around these with staff at a management strategy day. We also discussed restrictive practices, dignity of risk and the role of families.

My Tuesday started with a phonecall with Dr Jane Tracy of the Centre for Developmental Disability Health at Monash Health. We spoke for about half an hour and Jane outlined a bit of their history and the approaches they have taken to improving access to healthcare for people with a learning disability including establishing a disability liaison service. The brightest ray of light that left me feeling brilliantly positive was the teaching programme that Jane uses to expose fourth year medical students to learning disability. They recruit young learning disabled people to work as tutors (about the same age as the medical students) and they have joint sessions with up to a thousand Year 4 medical students each year at Monash University and the University of Melbourne, through a framework of advanced communication skills. This quite simple initiative is really making a difference. Students get to meet with a learning disabled person, hear about their life, and discuss issues relating to accessing healthcare. Jane says the feedback from students is consistently high, they used to focus their efforts on students and continuing professional development but quite often practising doctors did not recognise that they had people with a learning disability on their case load or did not recognise that they had a learning need. This focus on medical students mean that over time hopefully there will be a whole generation of medical practitioners who have at least had some experience of learning disabled people before they come across them in practice.

After my call with Jane I headed up to meet Professor Nick Lennox of the Queensland Centre for Intellectual and Developmental Disability. Talking to Nick was fascinating and entertaining in equal measure. He provided a lot of context and background to action around improving access to healthcare for learning disabled people, corroborating a lot of what Jim and Julian had already told me (not that I had any doubt about their version of events I might add). Nick sighted the work of Mike Kerr at Cardiff and Eric Emerson at Lancaster, and of course Chris Hatton also at Lancaster, and a number of other UK colleagues. There can be no doubt that there are shared international agendas in this area, there can also be no doubt that the pace of change and improvement is glacial. We discussed why the pace of change has been so slow in this field and the challenges of influencing political agendas. Nick had a lofty ambition:

I aspire to the health service fighting over the right to treat people with a learning disability

One that I’d subscribe to also, I’m just not sure how we get there. We discussed activism and the role for research, clinical work and teaching, and the impact of deinstitutionalisation. Nick talked me through the RCT of the CHAP (Comprehensive Health Assessment Programme), a Communication Advocacy Tool and the Health Advocacy Diary. After our meeting Nick invited me along to a presentation he was giving to Health Professionals Advisory Unit staff in the city which was also interesting. Nick also definitely had the coolest office yet, with a meeting space on the balcony on the first floor of this building.

My final Brisbane meeting was a pure luxury stop, I headed across the city to meet Michael Greco and the team at Patient Opinion Australia. I am an unashamed Patient Opinion Fangirl and it was great to hear about how things are going developing Down Under. Patient Opinion allows anyone to leave feedback on the care that they receive, maybe one of the ways in which we can force improvement in healthcare access for disabled people is by actually feeding back on good and bad experiences. I sincerely hope that this is a development that will happen in Australia, and the UK, to take it back to Jodie’s report on deaths in care, we have the information we need, the next step is in translating that into action. I think Patient Opinion could have a real role to play here.