As the wife of a man diagnosed with Alzheimer’s at the age of 51 pointed out at a recent seminar, “care is care is care…” She looked after her husband for many years, battling to provide him with the best quality of life possible. What made her task particularly difficult was the lack of communication between the many professionals and organisations involved at different stages as his dementia progressed. Constantly having to retell his story and make both their wishes known was tiring; what was worse was when his individual needs – even when made clear – were ignored and he was ‘forced’ into services that were not only inappropriate but did more harm than good.
Her point is that it’s only people working in health and social care – and its many sub-sectors – who really differentiate between them. For the person on the receiving end, it’s their experience of care that matters, not how it’s labelled.
What we call things and how we describe services may be important for organisational, logistic, policy, governance and other reasons. But we need to adopt a different language to help people understand what is available, what they are being offered and what it means in real terms.
At the same event, the head of the Social Care Institute for Excellence (SCIE) quite rightly picked up on the fact that even when the focus of discussion was integration of care, delegates quickly fell back into referring to ‘patients’ and ‘service users’ rather than the all-encompassing ‘people’. As she said: “It’s not my care, my health – it’s my life.”
Think carefully about the words that have slipped into common usage across the sector, and often into the media and political arena too. Terms like ‘bed blockers’ can unconsciously objectify people, and suggesting in this case that they have deliberately chosen to occupy hospital beds for longer than they need to (or would have to if their discharge was properly managed and the right level of support available in the community).
Even when the intention is good, how it is worded can have a negative effect. Jeremy Taylor of National Voices has concerns about what is meant by ‘putting people at the centre of care’, for instance. This widely used term may come across as paternalistic, as ‘putting’ suggests something is done to the individual rather than them being in control (which is actually the aim).
Maybe it comes down to adapting that old litmus test question, ‘Would you be happy for a member of your family to use this care service?, to ‘How would you describe this care service to a member of your family?’