Learning Disability Awareness Week, lots of positives flying around and talk of changing attitudes but not a lot of substance IMO. So, what can you, as a professional in non specialist services learn/do? A thread.🧵
1/ you can learn about terminology, in the UK Learning DISABILITY refers to IQ linked disability which affects ALL aspects of life - but is not the same as learning DIFFICULTY (e,g ADHD, Dyslexia, Dyspraxia). You are not being less offensive by using the wrong term.
and yes, people with Learning DISBAILITIES can also have Learning DIFFICULTIES. Having a learning DIFFICULTY affects a discrete aspect of life and, whilst challenging even disabling doesn't mean you may need help with all aspects of living.
2/ you can learn about inequality - having a learning disability reduces life expectancy by between 17-20 years - you may be thinking, yes but surely that's related to comorbidities but nope, these are the figures when data has been adjusted.
think about it, our "Netflix"/world leading healthcare system means that just by not being able to understand things as well as others you will die 2 DECADES earlier!
3/ Speaking of comorbidities, people with LD do have higher rates of comorbidities, (4x higher than the general population), so you'd think we'd be seeing them all the time in healthcare. Yeah, not so much...
Lower rates of screening for breast, cervical, prostate and almost ever other type of cancer. Lower engagement with physio, dentistry and many outpatient services.
Why? well, when asked, people and families reported poor accessibility, poor knowledge of clinicians, lack of knowledge and understanding, no reasonable adjustments - things you'd think are the basics.
4/ Spend some time reading, this document is a great little tool you can familiarise yourself with "So your next patient has a learning disability" csp.org.uk/publications/s…
5/ People's lives are not worth what your own arbitrary values say they are. People have families, friends, they bring light, joy, compassion to the people around them so don't you dare say "their life is worth less because x, y, or z"
6/ Learn about Diagnostic Overshadowing - this is where clinicians put down physical symptoms to the fact the person has a learning disability and doesn't screen according to presentation
e.g, "they're banging their head against the wall, they have a learning disability, what do you expect?" overlooking the huge tooth cavity causing them severe pain and head banging being the only thing the person can do to try and alleviate it.
in more serious cases it can lead to people dying. "of course, Jonathan is going to be a bit flamboyant in his pain presentation of his hernia, he has Downs Syndrome". Jonathan then died from a strangulated hernia
who dies from a hernia? My brother did and this #LDweek22 I dedicate my efforts to try and change perceptions of mainstream healthcare practitioners so that this doesn't happen to you.
If anyone with any platform has got this far, thank you. please give this thread a retweet so we can break out of our LD echo chamber and reach some people for whom LD isn't everyday practice - they are our target audience and let's affect some bloody real change shall we?
so today is national #AngelmanSyndrome day. Here is a 🧵 to help you know more.
A condition affecting between 1 in 12,000-20,000 people
1/
Angelman Syndrome is a genetic condition affecting the nervous system causing Learning and Physical disabilities.
2/
It is caused by absence or faulty copy of gene E3 ubiquitin protein ligase (UBE3A). In some instances, duplicate copies from the father and none from the mother can also result in the condition
3/
Estimated national death toll of people with learning disabilities nearly 1,000! 3.6 times the rate per 100,000 than the general population.
During peak 1, number of deaths of people with learning disabilities were 3x the average over same period in the 2 previous year. (general population 2x).
@CNEamonn@rachaelmoses can I again reinforce the need for employing a staff member with specialist Learning Disability Knowledge? If you are creating a facility the size and scope you are, then there should be a requirement to have at LEAST LD liason nurses. These roles have
proven invaluable in saving lives in mainstream hospitals where bed numbers vary between 400-1,000 and in creating a facility without this key piece of experience we are opening the doors to neglect of human rights of those who are most vulnerable. LD nurses have experience
in the Mental Capacity Act and reasonable adjustments which remain legal responsibility of healthcare providers, even in times such as these. The changes suggested can and do save lives. They can also be key links and advise about areas including discharge planning and future
I talk a lot about getting creative with exercise and some of the time it takes the form of adapting use of equipment or supporting understanding of it's use.
Then there are days when it's about making stuff up on the spot to build engagement.
Yesterday was one such day... 1/
Young lady with Moderate LD is in the gym, she has poor balance, lower limb weakness and low bone density.
She is a really fun character to work with but is easily distractable and she rarely engages with things for more than a few seconds. 2/
she responds really well to banter around who is cheekier, her or me and I comment on her rather smashing pink, sparkly, FLASHING trainers that she got for Christmas.
I add that I'm amazed she managed to get presents despite being on the naughty list 3/