I’m sat in Edmonton airport writing this and my mind is on overdrive, so many thoughts, ideas and reflections buzzing around my head. I had a far too short trip to Edmonton (which is my responsibility entirely) but am glad to have met with the people who kindly made time for me. I’m also very grateful to Ioana from CPSI (more on them later) who suggested a walk yesterday evening. We strolled a little along the river valley and across the new bridge and back across the high rise bridge, just a couple miles but it was so good to be outside and to have company. The colours of autumn and the cold crisp air was a very welcome backdrop to these few days too.
I flew in on Wednesday morning and caught a few buses out to St Albert to spend an afternoon with Velvet Martin. What a woman. Velvet’s daughter Samantha was deemed to be medically fragile at birth, she had Tetrasomy 18p, and she was taken into foster care after her parents were convinced/coerced into believing that Velvet would receive better care with foster carers, as government workers persuaded them that she’d have better access to better healthcare. I won’t try and tell Velvet and Samantha’s story because you can watch it here and here (and find more on the Eugenics Archive website – another resource well worth visiting). Samantha died just a couple of months after returning to her family to live in 2006, she was just 13. The fatal inquiry into her death decided that she died from natural causes, most likely untreated seizures, despite her parents raising concerns about seizures with her carers for years. The inquiry also found that Samantha had been malnourished when living with her foster carers, suffered unexplained fractures, breaks and bruises and irregularly saw a doctor and social worker.
Velvet described the process of seeking accountability as ‘fighting tooth and nail the whole time’. She managed to overturn a publication ban which prevented her (or any other bereaved relatives) from talking with the media. She also shared many similar experiences to what UK families have shared, intimidation and threatening for speaking out; missing records (three years worth of Samantha’s medical records were removed from a clinic by her foster father on the pretence of registering her with a new physician, luckily the gaps were filled by looking at billing records); roadblocks with trying to access records with the suggestion that once Samantha died her guardianship died with her, the argument was that Velvet couldn’t access her records because it would be invading Samantha’s privacy – Velvet’s workaround for that was to become her lawyer and have access that way.
In discussing the recommendations from Samantha’s fatal inquiry Velvet is quick to point out that ‘this is actually their job descriptions, so you’re telling them to do their jobs, but there are no consequences so nothing is changing’. A familiar state of affairs when you consider Prevention of Future Death reports in the UK. I’ve so much to think about from my time with Velvet, I think I’ll be ruminating on it for weeks/months to come.
My second day in Edmonton gave me a morning to try and blog and process some of what I’d heard. I don’t usually suffer from jetlag too badly but I’ve been sluggish this trip, so it was most welcome. I took a stroll over town at lunchtime to my afternoon meeting with representatives Nicole and Keri from the Edmonton Self Advocacy Federation (SAF) and Nicola from Neighbourhood Bridges. Our conversation was wide ranging discussing the law in Alberta; the contradiction of it having some of the most forward thinking practice and yet still having a long stay institution open (due to lobbying by the staff members union); we touched on family involvement with inquiries when someone dies; intersectionality and issues of poverty and wealth; the relative independence of the Children’s Advocate who reports directly to the legislature versus the proposed Disability Advocate who will report into the Ministry, with no real independence.
Other topics included the short term thinking of setting health and social policy in 3.5 year cycles; the horrific implementation of the SIS (supports intensity scale) which is now no longer used in Alberta (but can still be found in Ontario and other provinces). It sounds very similar to the PIP (Personal Independence Payment) assessment in the UK where applicants are required to demonstrate their need, to focus on their disability and what they can not do without assistance, an utterly demoralising process (see Chris Whitakers blog for more on this). Nicole and Keri talked about SAF’s approach of focusing on human rights and partnering with other organisations to work as a coalition and Nicole explained how when she was born her Mum was told to ‘put her in the institution… that is the easy solution’, I’m so glad for Nicole, and for all of us that her Mum rejected that suggestion.
Nicola offered me a lift back to where I was staying and we swung by the Neighbourhood Bridges offices on the way where I got to grab a few minutes with Amanda and Kevin, two of the staff there. This organisation sounds amazing, they are funded by Disability Services and operate a community based on human rights. Support is provided to all community members, a number of whom have mental illness, trauma and have lived in institutions or may not have received any services at all.
Amanda explained how ‘advocacy starts with a conversation… many people have had their rights taken away from them their whole lives‘, her focus was very much on real conversations and experiences and she described being involved with Neighbourhood Bridges as ‘being part of a community that actually wants real life relationships, communities and change for people‘. Kevin stressed their truly holistic approach to things and their commitment to creating space to be honest with each other. He gave the example of some people who’d previously lived in institutions being more concerned with pleasing staff than necessarily identifying what it was or is that they need for themselves, a process that can take years in some cases to work through. Kevin described their philosophy as ‘the root of the work is trying to figure out how to get out of people’s way’, what a totally sensible approach.
My third and final day in Edmonton had three meetings, the first was with the Canadian Patient Safety Institute (CPSI). Ioana, Janet and Sandi made time for me, explaining their work, their approach to the involvement of patients and bereaved families in patient safety work, and introducing me to their colleagues. We talked about the fact that they have no power to demand people to do what’s right, and not for the first time this trip I heard of the need for moral suasion to convince people to do what’s right. CPSI work in close partnership with others, they produce guidelines and tools and work with Accreditation Canada to incorporate good practice relating to disclosure and root cause analysis into professional standards. The thorny issue of accountability was also discussed, and the super power of honesty, patients and families demanding change, and leaders who publicly apologise and admit mistakes. We also discussed lobbying, campaigning for change, never events, alignment with federal priorities and what had seemed to work and backfire in Canada. Sandi asked me at lunch what I thought of Jeremy Hunt, which put me off my amazing salad but gave me a different perspective on the benefits that he may have brought for patient safety globally (now if only that applied equally to all patients).
A crisp walk across town led me to my second meeting of the day. In preparing for my Canadian trip I came across the fatal inquiry relating to Betty Anne Gagnon, one of a small number explicitly related to an individual with intellectual disabilities. I approached Jennifer Fuchinsky, who was listed in the report as the Fatal Inquiry Coordinator and she very helpfully not only agreed to meet with me, but also pulled together some other people. So my second meeting yesterday was with Jennifer, her Director and Chair of the Fatal Inquiry Practice Group, Jennifer Stengel and two people from the Ministry of Community and Social Services, Roxanne Gerbrandt, Executive Director of the Disability Supports Branch and Arlene Ehl who is a manager with the Office of the Advocate for Persons with Disabilities (the legislation has not been approved yet so there is no advocate in post).
We discussed the purpose and process of Fatal Inquiries. The deaths of people with an intellectual disability are not routinely investigated as a fatal inquiry and there is no mandatory requirement in the legislation for there to be. A bereaved family can make a request to the Fatal Inquiry Board to look into someone’s death and they may choose to review it, but its only likely to happen if families push for it, or if there is some suggestion of negligence. Fatality inquiries are held in front of a judge, there is no jury, and inquiry counsel will work with the judge to define the scope (incorporating family concerns where possible). Families are entitled to hire counsel but there is no financial support available to help them do so. Inquiry counsel can put questions to witnesses on behalf of families but they must be neutral and can not actively support the family. This all feels very familiar. The group were at pains to point out the process is inquisitorial, not adversarial, and that the inquiry can not find fault, it’s merely information gathering, which of course is what the Ministry of Justice would argue about inquests in the UK but it’s not been my experience from witnessing them (in the UK).
We also discussed new reporting processes to keep track of the recommendations made in fatal inquiries; again there is no requirement for parties to respond, although the Fatal Inquiry team will make public their letter requesting them to respond, their response, or the fact they have not responded if they choose not to. The representatives from the ministry shared that despite their being no mandatory requirement to respond, in 30 years experiences recommendations are always taken seriously and seen as an opportunity for continuous improvement. One clear gap is that it is in no-ones mandate to bring learning and recommendations together from Fatality Inquiries, although inquiry counsel will often bring previous reports together and share with the judge if appropriate. There was some discussion about whether this might be something for the Disability Advocate to consider as they will work across age, across disability and across ministry.
My final meeting of my whistle stop tour was a phone meeting with Deborah Prowse, QC. Deb is the former Health Advocate for Alberta, a lawyer, human rights consultant and a WHO Patient Safety Champion. Deb also has insider experience of patient safety and failings in the health system, after failings in her mother’s care. Deb was a breath of fresh air, having been sold such positives in the last meeting, I was beginning to wonder whether I was just too cynical. Deb confirmed that I wasn’t. She spoke of the fights that families face, she talked of bias against disabled people with some medics going as far as to suggest an early death ‘is for the best’. She described an ‘absence of interest in looking into anything‘. She described a siloed complaints system where families have to make multiple complaints to each body separately if they wish to have an investigation into a failure in care (which rings true to Sara’s experience in getting answers about what happened to Connor).
Deb said that Alberta Health Services talk about involving families in investigation teams, but she has yet to see it in practice and she felt it wasn’t happening in general. We talked about her experiences of the fatal inquiry process and she felt it was problematic that families are often left without their own counsel, citing that inquiry counsel are rarely trained in system theory or patient safety, and are not resourced to spend time with a family to really get to know what happened. So much of what Deb shared resonated, not least of all the scarcity of interaction invited by the system with bereaved families, putting the onus on them to do the leg work, and framing them as ‘difficult families’. Deb shared her own families experience and how her own mother’s death was a tipping point for patient safety in Alberta, but she still felt there was a long way to go. The thought that Deb left me with, which is a rather frightening one was related to power imbalances, we were discussing the role of mediation (something that Deb is hoping to develop further) and she described how ‘If something becomes conflicted they [staff] call protective services… family members don’t have the same ability to call the Police in on their side, so they escalate and are considered difficult for doing so, and ultimately nothing gets resolved’. I’ll be watching what happens next in this space in Alberta, because it’s a common problem faced the world over.
For now though my plane is boarding, so it’s back over to Toronto for me. Thank you Edmonton, you’ve been amazing.