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New @ScotLDO research looking at (premature) mortality rates of learning disabled children and young people. Gut churning stuff. Mortality rate 12 times higher for those who are learning disabled.
12 times higher. 12
And lots of avoidable deaths from treatable conditions
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12 times higher. 12
And lots of avoidable deaths from treatable conditions
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Girls and young women's risk of death was 17 times higher than those without a learning disability.
17 times higher. 17.
In other words, for every girl without a learning disability who died, 17 learning disabled girls died.
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17 times higher. 17.
In other words, for every girl without a learning disability who died, 17 learning disabled girls died.
2/
Boys risk of death was 10 times higher than for those without a learning disability.
So, for every boy without a learning disability who died, 10 learning disabled boys died.
Children and young people with a learning disability died at earlier ages than those without.
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So, for every boy without a learning disability who died, 10 learning disabled boys died.
Children and young people with a learning disability died at earlier ages than those without.
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So what were people dying from?
[I know some people will be thinking, they looked at disabled children and young people, of course they die early.... but why? A learning disability affects how your brain works/how society understands you. It is not a health condition].
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[I know some people will be thinking, they looked at disabled children and young people, of course they die early.... but why? A learning disability affects how your brain works/how society understands you. It is not a health condition].
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Common causes of death were:
> epilepsy
> respiratory infection
> aspiration pneumonia, and
> digestive conditions.
These are treatable conditions, and therefore many of these deaths could, and should, have been prevented
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> epilepsy
> respiratory infection
> aspiration pneumonia, and
> digestive conditions.
These are treatable conditions, and therefore many of these deaths could, and should, have been prevented
5/
The rate of neurological-related deaths was 77 times higher amongst children and young people with a learning disability.
We know, have known for decades, that learning disabled ppl have a high incidence of epilepsy so why so hard to get a diagnosis or decent treatment?
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We know, have known for decades, that learning disabled ppl have a high incidence of epilepsy so why so hard to get a diagnosis or decent treatment?
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The rate of respiratory-related deaths was 55 times higher amongst children and young people with a learning disability.
Children and young people with a learning disability are dying from flu and chest infections.
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Children and young people with a learning disability are dying from flu and chest infections.
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Children and young people with a learning disability are dying from aspirating food and drink (when it enters lungs) due to difficulty swallowing and/or poor posture and seating arrangements.
Swallowing difficulties need early identification and postural support put in place
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Swallowing difficulties need early identification and postural support put in place
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The report authors identify a number of implications for policy and practice.
'Deaths from treatable conditions constitutes a failure to meet the fundamental human right to the highest attainable standard of health'
Yup. Damn right.
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'Deaths from treatable conditions constitutes a failure to meet the fundamental human right to the highest attainable standard of health'
Yup. Damn right.
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The authors highlight the problems with diagnostic overshadowing.
[Where health problems or symptoms or someone's communication about pain/discomfort are misunderstood and dismissed as being due to someone's learning disability or worse still their 'challenging behaviour']
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[Where health problems or symptoms or someone's communication about pain/discomfort are misunderstood and dismissed as being due to someone's learning disability or worse still their 'challenging behaviour']
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The authors recommend work on improved communication in healthcare settings.
[My view FWIW is that healthcare staff need to remember that communication is two way, and start with listening. I know too many bereaved parents who were not listened to, with fatal consequences]
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[My view FWIW is that healthcare staff need to remember that communication is two way, and start with listening. I know too many bereaved parents who were not listened to, with fatal consequences]
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Need to address underlying social determinants of health are also raised.
Children and young people with learning disabilities who have complex health needs, their families and carers have a right to multidisciplinary support.
Our communities need to be more inclusive
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Children and young people with learning disabilities who have complex health needs, their families and carers have a right to multidisciplinary support.
Our communities need to be more inclusive
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The authors also suggest that a focus on prevention, and the integration of health promotion policies, within social care services could further reduce premature mortality.
The report ends with some sensible steps @ScotLDO will take to raise awareness and try improve things
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The report ends with some sensible steps @ScotLDO will take to raise awareness and try improve things
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Easy Read Summary is available here https://www.sldo.ac.uk/media/1908/easy-read-mortality-final.pdf
Study Briefing is available here
https://www.sldo.ac.uk/media/1910/final-mortality-in-cyp-with-ld-briefing-10820.pdf
Full BMJ article is available here https://bmjopen.bmj.com/content/10/8/e034077
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Study Briefing is available here
https://www.sldo.ac.uk/media/1910/final-mortality-in-cyp-with-ld-briefing-10820.pdf
Full BMJ article is available here https://bmjopen.bmj.com/content/10/8/e034077
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Big thanks to Gillian Smith, Mike Fleming @deborah_kinnear @jill_p_pell @craigmelville33 @prof_sacooper and @AngMHenderson for a very needed piece of work
#DeathByIndifference #LearningDisability Of interest #JusticeforLB #LEDER #RightfulLives #TeamSEND peoples
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#DeathByIndifference #LearningDisability Of interest #JusticeforLB #LEDER #RightfulLives #TeamSEND peoples
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