Dying to matter #WCMTLD

I spent today, International Day of People with Disability 2017, in Brisbane. Well that’s not strictly true, I spent some of it in Brisbane, some of it travelling to the Gold Coast and a significant chunk of it having an incredibly pleasurable lunch and walk on the beach/paddle in the shallows and chat with Sally Robinson. Since then I’ve come back and been looking at the tweets on the hashtag as the UK wakes up and starts their #IDPWD17. My favourite thread by a country mile was this one (click on the tweet to open the thread in a new window and read what follows):

It got me thinking about something Sally and I discussed, how you raise awareness of something if people are truly ignorant, and yet not allow things to stop at that point, instead giving people a rocket up them/helping suggestion of what to change to improve or change things. Sally’s PhD looked at emotional abuse and neglect of people with intellectual disabilities and she shared the devastating and long standing impact of cumulative acts of omission or neglect. On the train home while reading Sally’s book Preventing the emotional abuse and neglect of people with intellectual disability – Stopping insult and injury I was musing on the cumulative failings in LB’s care, the number of times that staff not only missed the very obvious signs something was wrong themselves, but actively obstructed Sara’s attempts to alert them to LB’s increased seizure activity.

It also got me thinking about a conversation I had with Alison Barrett, and an issue that also came up in the discussion at Donald Beasley Institute on Thursday, how can we change the pervasively defensive culture in healthcare and truly create an environment where people aren’t just free to speak up, but actively choose to. In certain states in Australia (maybe all, I need to check the legislation) registered medical professionals have a mandatory duty to proactively report any concerns of abuse or neglect that they have to the relevant authorities. That said it seems that people, I quote:

would rather get a complaint made against them through the Health and Disability Commissioner’s office, than risk the disapproval of their colleagues

This doesn’t surprise me at one level but it horrifies me at another.

Given the whole purpose of my WCMT fellowship is learning about what happens elsewhere (Australia, New Zealand and Canada) with a view to returning to the UK filled with ideas and enthusiasm to actually improve things, for now, I’m just going to just restate the problem in this post.

In case anyone is not 100% aware of why they should actively a) give a shit and b) be working to actually improve things:

In the UK the average life expectancy for women is 83, for learning disabled women its 63. The average life expectancy for men is 78, for learning disabled men its 65 (CIPOLD, 2013)

The average Australian life expectancy is 80, unless you’re intellectually disabled and then it’s 54 (Trollor, 2016)

If you’re a man living in New Zealand chances are you’ll live until you’re 78.4 (they’re very specific the Kiwis), unless you have an intellectual disability in which case you’ve an average life expectancy of 59.7. It’s an even bigger gap for women, who on average live until they’re 82.4 in New Zealand, unless they have an intellectual disability in which case it’s 59.5 (NZ Health Indicators Report, 2011)

Put another way if you have an intellectual disability you’re going to enjoy about 20 less years of life than if you don’t. We’re not even getting into quality of life or access to healthcare here, this is just how long you get to spend on this planet.

In case you’re wondering, no, this isn’t because people have an intellectual disability and before someone pipes up and says ‘but people with Downs Syndrome don’t live as long as other people’ (which has been said to me numerous times in the last couple weeks), even if you account for some differences associated with certain groups, such as heart problems or early onset dementia, people are still dying earlier than their peers.

You do not die from Down Syndrome, any more than I’m likely to die from constantly changing my hair colour. They both have as much right to be on a death certificate…. that is zip all.

Regardless of whether you live in Calderdale, Canberra or Christchurch you should not be dying early because you have a learning disability.

Yet it’s the same things, time and again, that come up when you analyse death data.

  1. People dying from (poorly monitored and managed) epilepsy
  2. People dying from (late or non-detected) cancer which would not have killed them if it had been detected earlier
  3. People dying from (often late or non-detected) respiratory diseases, pneumonia, aspiration pneumonia or flu
  4. People dying from aspiration, that’s inhaling food, saliva or gastric contents into the lower respiratory tract which in turn leads to lung inflammation and infection. Highly associated with swallowing problems (very common in some people with learning disability but very manageable with the right skills and care) and high use of sedation and psychotropic medication which is also very common in people with learning disability (who are often inappropriately drugged to make them easier for services to manage).
  5. People dying from chronic constipation and faecal impaction, often linked to those pesky psychotropic meds and poor diet and exercise or other lifestyle issues (you know when it’s easier to just let someone eat Maccy Ds every day because it’s their choice and control man, regardless of the long term damage that will cause them).

I’m not going to carry on, but I’ll leave you with that last thought.

Learning disabled people (as my self advocate friends in the UK would be begging me to use that language – they are, after all, disabled by a system that does not help them learn, not by anything inherently within them), people with an intellectual or learning disability (if you’re in the Southern hemisphere), or just people are dying, in 2017, from constipation. Yeh that’s right:


In 2017. How can this be?

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