‘To date, done nothing with this information’

Day 14 of my #WCMTLD trip and only Day 2 in New Zealand but it really feels like time is flying by. Today was a bit of a blur of meetings, walking to meetings and discussing how the deaths of intellectually disabled people are investigated in New Zealand. First up I met with Claire and Martyn at IHC, by far the biggest provider of services to learning disabled people in the country. Martyn, an expat from Barnsley reckoned they were about five times bigger than the next largest provider, so these are key players. Martyn is responsible for death reviews in their organisation and Claire works in their advocacy arm. Claire described how health, and access to health, is a huge issue for learning disabled people in New Zealand, and the quality of treatment they receive once in the healthcare system is variable too. Martyn was able to talk me through the IHC process for reviewing deaths when someone dies in their care.

Martyn will review the critical event report, the support plan and ask the question about what could have been improved. He is seeking to identify improvements that IHC can implement in their service. The process he describes is a little fuzzy around the edges, he makes a ‘best guess scenario re cause of death because it’s not always recorded’. This led us to a discussion about coroners inquests, death certificates and how it’s possible to know whether something truly requires further investigation if the review relies solely on staff statements and the paper based records that they have completed.

IHC provide services to about 4.5k people at any one time, and Martyn felt that their rate of preventable deaths was very low. When I pushed him on this and asked for numbers he thought there had been around 50 deaths in the last twelve months, but only 2 of those had been referred to the Coroner. We had an interesting discussion and I mentioned my concerns from yesterday about how confident could we be, with the current system in New Zealand (or the UK for that matter) that the right deaths were  being investigated. I’m no more confident at the end of today than yesterday.

This confidence was not exactly boosted following my meeting with the Ministry of Health. It was great to hear about some of their plans for Enabling Good Lives and transforming care, and I found them very candid and interested in looking at this further. Currently the situation is that providers have a mandatory requirement to report deaths in residential services to the Ministry of Health, that is used for quality checking and monitoring, but in terms of assessing deaths at a strategic level, ‘we have, to date, done nothing with this information’. The suggestion was made that this conversation had made them think that they need to do something with that information and data. I just hope that thought is followed through on.

New worksafe legislation was mentioned by IHC and the MOH. As were challenges with low levels of learning disabled people accessing cancer screening programmes and the anxiety and fear of death (their own death) that many older carer’s express because they’re worried that no-one will be able to advocate for their adult children as well as they do.

Challenges with data systems not talking to each other and MOH data not being directly connected to people’s National Health Index number (used for your unique personal health record) were also discussed. Two things of interest were mentioned in relation to working with families – the Developmental Evaluation Programme uses teams of evaluators that include disabled people and family members, to assess the quality of services provided in residential care. The other aspect which I’m hoping to look at further was the role of whānau, the Maori cultural term that encompasses family. It was felt that Maori providers would have had to consider the role of family far more integrally to provision than other providers. I’m hoping to get an introduction to a couple of people to discuss that with.

My other two meetings of the day were luxury ones really, by which they were both related to my work but not centrally. This afternoon I met Dr Lizzy Stanley, a criminologist at the Victoria, University of Wellington. Liz has written a brilliant, yet truly harrowing account, of abuse and neglect of children in the care of the state: The Road to Hell: State Violence Against Children in Post-War New Zealand. Her background is a focus on truth and reconciliation and we met for coffee and discussed the current response to her work, and the ongoing hopes for a Royal Commission into abuse and neglect. We also covered the damage done to people who are continually asked to re-tell their stories and narratives of abuse, neglect and trauma. We also touched on the number of people with a disability in the criminal justice system in New Zealand, and the absence of disability from everyday life.

My bonus meeting for the day was the opportunity to catch up with the brilliant Alison Barrett, who was in town for a conference and yet managed to squeeze in time to meet me for a coffee and walked me to my meeting at the MOH. I’ve known Alison from twitter for a couple of years now and several of her blog posts have on occasion caught my breath and left my eyes leaking in public places. Alison’s daughter, Olivia, died a couple of years ago and some of her experiences since are very familiar to what we’ve seen and shone a light on through #JusticeforLB. I’m still struggling to process some of what Alison told me as we strolled along the waterfront in Wellington, making our way to the MOH. The contrast between the warmth and optimism of the late spring sunshine and Alison’s words describing the murky stinking misery that families have flung at them when a loved one dies was immense. It is so, so wrong. I’m just left grateful for the opportunity to be here exploring these issues, and so chuffed that I met Alison. I feel sure it wont be the only time we meet.

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