Today was a day of downtime, the meetings I’d hoped to pull off didn’t happen so I had some much needed nothingness before a flight to New Zealand. Last night I caught the tram down to St Kilda to see the fairy penguins, the most gorgeous sight. I didn’t even think I particularly liked penguins, turns out they’re adorable.
I’m now in New Zealand for ten days, three in Wellington and the remainder in Dunedin where I’ll be attending the Disability Matters Conference, as well as meeting with people.
While I’m in Dunedin I’ll also be remotely guest hosting a We Learning Disabilities Nurses #WeLDNs chat. One of the objectives I set myself on my Winston Churchill Memorial Trust Fellowship (find out more about WCMT here) was to relay learning in real time via social media to provoke reactions and stimulate discussions in Australia, New Zealand and back in the UK. This chat is hopefully a good opportunity to contribute towards that.
When we were running the #107daysofaction campaign towards the start of the #JusticeforLB campaign, WeLDNs, held three online chats discussing what had happened to LB and considering how as learning disability nurses they could work together to reduce premature deaths. Sally from WeLDNs got in touch recently having seen me grumbling about the need to actually make changes, not just talk about learning lessons:
‘The work carried out by CQC, and this report, would not have been possible without the substantial contribution of bereaved families and relatives, who generously contributed their time and thoughts, in the hope that their experiences would be used to improve things for others.
We must learn from these families. Their trust, honesty and candour are an example to us all. We owe it to them, their loved ones, and to ourselves to stop talking about learning lessons, to move beyond writing action plans, and to actually make change happen’ (My foreword to CQC Deaths Review)
Since those first #WeLDNs chats we have new knowledge and evidence relating to poor healthcare and premature mortality of people with a learning/intellectual disability. We also have for the first time evidence about how families experience investigations when their loved ones die. Sadly none of it paints a particularly promising picture:
1) There is an acceptance and expectation that people with a learning disability will die:
‘We found that the level of acceptance and sense of inevitability when people with a learning disability or mental illness die early is too common. This may often be due to unidentified or unsupported health needs that, in many cases, will offer even greater opportunity for learning. There can be no tolerance of their deaths being treated with any less importance than other patients’ CQC Deaths Review
2) There is an ambivalence to conducting investigations when people with a learning disability die:
‘Less than 1% of deaths in Learning Disability services were investigated as a CIR [Critical Incident Report] or SIRI [Serious Incident Requiring Investigation] and 0.3% of all deaths of Older People in Mental Health services were investigated as a SIRI’. Mazars Independent review of deaths of people with a Learning Disability or Mental Health problem in contact with Southern Health NHS Foundation Trust April 2011 to March 2015
3) We are failing to reduce the overall numbers of people with a learning disability stuck in Assessment and Treatment Units:
‘Whatever is happening, it is clear that there are many more than 2,500 people with learning disabilities or autistic people using inpatient services of various kinds, particularly if you look at more than snapshots. It’s also obvious that the numbers in Assuring Transformation do not show large falls in the number of people in inpatient services, and that Assuring Transformation information isn’t taking into account what’s happening to people in general mental health inpatient services. It feels to me like this isn’t even the end of the beginning’ Through the keyhole – (still) trying to understand Transforming Care from the statistics – Prof Chris Hatton
Chris’ blog post links to the original stats if you want them, but I’ll be honest I’ve long ago given up looking at anything but the headline and relying on Chris and his deciphering instead.
4) We know no one is an expert at involving families in investigations after someone has died, this is an area in desperate need of improvement:
‘Across our review, we were unable to identify any trust that could demonstrate good practice across all aspects of identifying, reviewing and investigating deaths and ensuring that learning is implemented’ CQC Deaths Review
Is it any better down under I hear you ask? Well recent Australian research by Prof Julian Trollor and his team have shown a similar state of affairs when it comes to premature mortality of people with an intellectual disability:
‘Adults with ID experience premature mortality and over-representation of potentially avoidable deaths. A national system of reporting of deaths in adults with ID is required. Inclusion in health policy and services development and in health promotion programmes is urgently required to address premature deaths and health inequalities for adults with ID’ BMJ Open Access Article
I think its fair to say that we have enough knowledge and a clear enough picture of the current state of affairs. A number of themes have emerged in the discussions during my trip to Australia so far: Why change is taking such a long time when it comes to improving healthcare for intellectually disabled people? The actual purpose of any investigations that happen – police, coronial, ombudsman, care provider and alongside that the role of mandatory reporting and investigating. The need to really understand good, when it can be found, and unpack it to identify what factors are at play.
So what are we going to do about it?
This live chat with learning disability nurses across the UK, and healthcare professionals and other interested people in Australia and New Zealand (and anywhere else also welcome) is designed to collect feedback on what is working well, alongside any ideas or thoughts about how we can work together to improve things further.
You can read the WeLDNs blog post that details the chat and there’s also a handy guide on what a web chat is if you’ve not participated in one before. We’ll be looking for examples of reasonable adjustments that are working well; to hear about how learning disability nurses and healthcare professionals are working with learning disabled people and their families to improve access to healthcare; we’re also interested in your thoughts and ideas of what supports you need to improve things further. We’d also love to hear of examples of improvements to patient safety or access to healthcare that have been made as a result of the learning from investigations into the deaths of learning disabled people.
The chat will take place next week at 8:30pm on Tuesday 28th November if you’re in the UK; which will be 07:30 on Wednesday 29th November in Australia Eastern Daylight Time, or 09:30 in New Zealand. I hope to see many of you there.