If you want to personalise care, first personalise your language

Kate Sibthorp is a member of the National Co-Production Advisory Group. Her daughter lives at home, supported by her parents and a small team of personal assistants.

Twenty-six years ago, my daughter was diagnosed with a rare chromosome syndrome. When I told people at work that my baby was handicapped, a disabled colleague told me that I should say ‘disabled’. He explained the etymology: from cap-in-hand, inferring that disabled people are objects of charity. I got it, of course I did, and thanked him. A few weeks later, a social worker was taken aback when I described my daughter as mentally retarded. But she didn’t explain why, and all I knew at the time was that those were the words on the information sheet I’d been given by our consultant.

Sometimes people use the right language because they’ve learned it’s right, like the social worker, and that’s OK; but maybe it’s better to understand what’s behind it, like my disabled colleague. If we think about what words really mean, we can use them more wisely. This is particularly relevant for delivering care and support planning that is personalised and in Plain English. 

The word respite means a break from something difficult or unpleasant. If we see the role of carers as principally difficult or unpleasant, what does that infer about the people we care for? Being a mum for a daughter with a disability can certainly be challenging at times, but it can also be a delight and an honour. Why can’t we use respectful language that isn’t demeaning to the people we love and support? Can’t we just talk about having a break or some ‘me time’?

Another expression I find problematic… why do we talk about putting someone in a home? For me, this turns the person in question into an object to be passively placed somewhere ironically called 'home'. When the decision is taken that our elderly relatives, for example, should move to residential care, isn’t this a decision that is taken with them, or at least with others who know and care about them? Why can’t we just talk about helping someone to move?

Meanwhile, the people who run services keep commissioning beds. More objectification. When my daughter was 22, our local authority offered her 21 nights in a bed in a home for older people with dementia as respite for me and her dad. Such an attractive offer… it was hard to turn it down! Seven years on, the current local respite (ugh!) service still consists of 19 beds in residential homes. I understand that hospital administrators have to manage bed occupancy, but why does this medical language spill over into social care, into normal life?

These examples of poor language are rooted in seeing people logistically, as a collective number of problems to be solved. The language we use is a reflection of how we think, and it can help ingrain and perpetuate unhelpful attitudes towards people. While services continue to use this sort of impersonal language along with the plethora of jargon, can they ever be truly personalised? It’s not a matter of political correctness; it’s a question of being respectful.

TLAP offers a Care and Support Jargon Buster which you can embed on your website. Their ambition is to help make sense of all the commonly used words and phrases used in social care, health and housing. The A-Z of Plain English definitions brings a personal touch to the otherwise impersonal language used in the sector. I urge you to use it. 

If you liked this blog, read Daring to drop the jargon and See me, I am a person.