The cost of being disabled
I read a shocking article in the National today.
[Just as a wee aside, the National in my opinion goes from strength to strength. There have been some excellent items recently and they have some fine writers. Last week's article by George Kerevan on how working class people right across Europe effectively stopped WW1 is outstanding].
Today's article is about disabled people, people who are learning-disabled in particular. The article says it straight up:
The 'learning disabled' have much shorter lives than the rest of us: men live 13 years less than men without a disability. But the real shocker for me is that women with a learning disability live 20 years less than the general population.
I would like you to read this paragraph again, if you have the time.
20 years. That's right. It says that women with a learning disability live 20 years less than the rest of us.
Since women tend to go to the doctor more than men, I would expect their medical problems to be picked up sooner. Apparently not if they are learning disabled.
Why would people with learning disabilities not have their medical problems examined closely? Could it be that they are not articulate enough to command attention from the medical professionals they encounter? Do the rest of us - including their carers - not take their health problems seriously? Do we fail to spend time talking to them about what's happening to them? Are they - frankly - not as important as the rest of us?
It certainly seems there are problems with the follow-up to health consultations if you are learning disabled (although I suspect this probably applies to a lot of the rest of the population too): things are not explained well (though better than they used to be). Patients are not told in detail what their prognosis is and what their future treatment is to be.
I'm spending more time with medical professionals as I get older. I can see how busy they are. But I am starting to think maybe we should have a new rule about medical consultations involving what are usually called 'vulnerable' patients - that is, people with a learning disability, old people (like me), children, and people who already have a life-threatening diagnosis and whose health may already be impaired.
In any consultation the patient should have a patient advocate with them. The patient advocate should preferably be someone who knows them - or at least knows their medical condition. The patient advocate should take notes so that they can discuss the consultation with the patient later. The patient advocate should also be allowed to ask questions so that the condition, prognosis and treatment are quite clear.
And I'm sorry, but I keep coming back to this: "women with a learning disability live 20 years less than the rest of us."
That just can't be allowed.
[Just as a wee aside, the National in my opinion goes from strength to strength. There have been some excellent items recently and they have some fine writers. Last week's article by George Kerevan on how working class people right across Europe effectively stopped WW1 is outstanding].
Today's article is about disabled people, people who are learning-disabled in particular. The article says it straight up:
The 'learning disabled' have much shorter lives than the rest of us: men live 13 years less than men without a disability. But the real shocker for me is that women with a learning disability live 20 years less than the general population.
I would like you to read this paragraph again, if you have the time.
20 years. That's right. It says that women with a learning disability live 20 years less than the rest of us.
Since women tend to go to the doctor more than men, I would expect their medical problems to be picked up sooner. Apparently not if they are learning disabled.
Why would people with learning disabilities not have their medical problems examined closely? Could it be that they are not articulate enough to command attention from the medical professionals they encounter? Do the rest of us - including their carers - not take their health problems seriously? Do we fail to spend time talking to them about what's happening to them? Are they - frankly - not as important as the rest of us?
It certainly seems there are problems with the follow-up to health consultations if you are learning disabled (although I suspect this probably applies to a lot of the rest of the population too): things are not explained well (though better than they used to be). Patients are not told in detail what their prognosis is and what their future treatment is to be.
I'm spending more time with medical professionals as I get older. I can see how busy they are. But I am starting to think maybe we should have a new rule about medical consultations involving what are usually called 'vulnerable' patients - that is, people with a learning disability, old people (like me), children, and people who already have a life-threatening diagnosis and whose health may already be impaired.
In any consultation the patient should have a patient advocate with them. The patient advocate should preferably be someone who knows them - or at least knows their medical condition. The patient advocate should take notes so that they can discuss the consultation with the patient later. The patient advocate should also be allowed to ask questions so that the condition, prognosis and treatment are quite clear.
And I'm sorry, but I keep coming back to this: "women with a learning disability live 20 years less than the rest of us."
That just can't be allowed.
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