Wednesday, 30 March 2011

Need to know basis

Before I took poorly, I used to be a volunteer carer for a charity that provides holidays for people with physical disabilities. As far as I could work out, the policy (certainly for new volunteers) was not to tell us what disabilities people had. I assume this was so that we would treat them as people not as disabilities, yada yada, all that stuff.

But do carers need to know what disabilities the people they're caring for have? How much do they need to know about them? Whose role is it to explain to them?

I think it varies according to the status of the carer. A personal assistant, who can be with the disabled person 24/7, ironically needs less information. They have far more time to become aware of their employer's needs, and can adapt moment by moment.

A home carer, on the other hand, cares for several clients over the course of a typical day. They need to know the basics of each client's condition, and of the complications that may occur.

Many conditions are very variable. For example, you could take 100 people with MS, my condition, and you'd have 100 different sets of symptoms with 100 different levels of severity. A carer I had in the past expressed her (unwelcome) opinion that I had "mild" MS because I could still walk a little. She was taking no account of my fatigue, pain, bladder and bowel symptoms, spasms, cognitive problems, etc etc etc... Incidentally, I finally sat her down one day and explained all these other symptoms. In detail and at length.

So, it would be of benefit for home carers to know about the possible symptoms of the conditions they're dealing with, and the variability involved. Who should tell them about each person's situation?

Ideally, of course, it should be the client themself. The client's input goes into drawing up the care plan which guides the carer in their work. It's also important, though, that carers receive training about the conditions they commonly deal with. As far as I am aware, none of my carers so far have received any training about MS, although all have cared for people with MS before me.

So...up to us then? We need to educate our carers about our conditions, not only so that they are better able to care for us, but so that they are better prepared for the future, to care for people who are maybe not as articulate as we are.

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