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Chief Nursing Officer (CNO) for England, Professor Jane Cummings explains why it is so important to get the language right when it comes to supported self care.
“Language can educate and inform or confuse and mislead. Language can inspire or alienate, cherish or insult.” – Harry Cayton, Journal of the Royal Society of Medicine, October 2006.
The language we use in health and care can have a profound impact on people – both those who give care, and those who receive it. As Harry Cayton highlights in the quote above, language goes far beyond just the words we use – the meaning of the words and the way they are interpreted can have a significant effect on the way people feel and behave.
We recently established NHS England’s Supported Self Care Programme, and have quickly worked to get to grips with this issue of language. As part of this programme we’ve been working closely with people with lived experience, who told us that some of the terms that are so often used to talk about self care are laden with problems.
We decided to look into this further. At some recent workshops we ran with our Sustainable Improvement Team, attended by both professionals and people with lived experience, we carried out an icebreaker called ‘The Language Challenge’. We asked people to identify terms used about self care that were misleading or inaccurate, and to offer more appropriate suggestions.
The term ‘self care’ came up. What is it? In one sense, it’s simply about looking after yourself – taking regular exercise, eating healthily and brushing your teeth, for example. Towards the other end of the spectrum, however, for many people it’s about having to manage multiple long term conditions (LTCs), sometimes with conflicting treatments and sub-optimal medication, and often suffering from social isolation.
People need support to care for themselves when they become ill, and in the case of people living with LTCs, this can be an ongoing struggle. The NHS spends 70% of its budget supporting people living with LTCs – a staggering statistic – and yet many people don’t feel that they have the knowledge, skills and confidence to manage their own health and wellbeing successfully.
The key word here is ‘support’. People with lived experience have told us that simply saying ‘self care’ creates a real sense of isolation – that they are being left on their own to look after themselves. Besides, they are already self caring!
This is why we have titled our programme ‘Supported Self Care’. Through this programme, we will be aiming to create a nation of supported self-managers, enabling people to be much more confident in managing their health and wellbeing.
A key way in which we’ll be working to increase the support available to people is through the Patient Activation Measure (PAM). We’re currently working with over 50 areas across England who will receive person-centred support to manage their own care that we announced earlier this year. Over time, PAM could help us to support over 1.5 million people with LTCs to live more independently.
‘Patient activation’, however, is another phrase that people identified as being problematic in our ‘Language Challenge’. Some people felt that the term implies that they are passive recipients of care who need to be ‘activated’. This is a very valid concern, but I can assure people that this is absolutely not the case with the initiative. Taking people’s feedback on board, we’re committing to using the terms ‘knowledge, skills and confidence’ rather than ‘patient activation’, aside from when using the official title of the PAM tool.
Over the next three years, we’ll work with other arm’s length bodies to provide support for local health and care systems to come together with the communities they serve and the voluntary sector. We’ll do this building on some principles developed by the Realising the Value programme and you can read about some practical resources for the implementation of supported self care that we’ve recently launched with our Realising the Value partners.
These are exciting times, with so much potential to improve people’s lives. As we get on with giving people the support they truly need to live more independently, let’s make sure we all speak the language of supported self care.