Speaking the language of supported self care

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.

Jane Cummings

Professor Jane Cummings is the Chief Nursing Officer for England and Executive Director at NHS England.

Jane specialised in emergency care and has held a wide variety of roles across the NHS including Director of Commissioning, Director of Nursing and Deputy Chief Executive.

In February 2004, she became the national lead for emergency care agreeing and implementing the 98% operational standard. She has also worked as the nursing advisor for emergency care. In January 2005, she was appointed as the National Implementation Director for ‘Choice’ and ‘Choose and Book’.

Jane moved to NHS North West in November 2007 where she held executive responsibility for the professional leadership of nursing, quality, performance as well as QIPP, commissioning and for a time Deputy Chief Executive Officer. In October 2011, she was appointed to the role of Chief Nurse for the North of England SHA Cluster.

She was appointed as Chief Nursing Officer for England in March 2012 and started full time in June 2012. Jane is the professional lead for all nurses and midwives in England (with the exception of public health) and published the ‘6Cs’ and ‘Compassion in Practice’ in December 2012, followed by publishing the ‘Leading Change, Adding Value’ framework in May 2016.

Jane has executive oversight of maternity, patient experience, learning disability and, in January 2016, became executive lead for Patient and Public Participation.

She was awarded Doctorates by Edge Hill University and by Bucks New University, and she is a visiting professor at Kingston University and St George’s University, London.

She is also Director and trustee for Macmillan Cancer Support and a clinical Ambassador for the Over the Wall Children’s Charity where she volunteers as a nurse providing care for children affected by serious illnesses.

Follow Jane on Twitter: @JaneMCummings.

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  1. Lynne Craven says:

    Whatever happened to self-management? I do not care for the MS I live with, I manage its effects daily. So the term I prefer is supported self-management. I do self-care but generally I can do it unsupported. You are right, language is a minefield. I wish I’d been at the workshop!

  2. Patrick Burke says:

    You mention people with an LTC have a feeling of isolation. I agree with you. People need to socialise and talk to others. This is where day care centres were so important.

    I have SPMS, can meet people through social media but that is no replacement for face-to-face social interaction.

    If people could socialise then I’m sure their well being would improve and this would lead to a better quality of life.

    There is a ersidential home for elderly people opposite my house. People buy a room or two rooms and live there but there is not cental meeting room whee they can talk to each other.

    We are social animals and need to talk and exchange ideas and thoughts. This should be a priority

  3. Joe says:

    As a specialist nurse with a long term heart condition I find that in general there is very little support. An example of this is I have been ill since Xmas with this viral illness doing the rounds over weekend it became significantly worse. I have self managed and not once contacted GP however felt I had to the other day as an advanced practitioner and having availibility to my nurses kit my observations were significantly abnormal verging on signs of sepsis. As such I contacted GP esp given health PMH. The GP reluctantly Px antibiotics over phone and dismissed me for wasting time.
    I feel lucky that my knowledge as an ANP enabled me to monitor and be aware of what to look out for. My concern is that many people do not have these skills and to be dismissed so quickly and possibly miss a daignosis can be really dangerous. Not once has my chest been listened to despite having horrendous cough coupled with high temperatures etc the antibiotics now helping. Long way off supported care !

  4. Kassander says:

    “Jane was awarded a Doctorate by Edge Hill University …”
    Edge Hill University
    Jane Cummings:
    Chief Nursing Officer receives **honorary doctorate**
    DECEMBER 10, 2012
    Inspiring nurses and midwives to deliver the highest quality care has earned the country’s top nurse Jane Cummings an **honorary** award from Edge Hill University.
    There is an ever so slight difference between a PhD and an Honorary Doctorate, is there not?

  5. mrs margaret chappell says:

    Who is this woman with so many fingers in so many pies she can ardly have the time to deal with people hav ing long term conditions? As an NHS lay volunteer I have heard the same old rhetoric and nothing changes. What on earth is “lived experience” (her phrase)? One can hardly experience anything when one is dead can one hmm? What a pity we cannot take “activation measures” against those highly paid health professionals whose endless public consultations, conferences, seminars waste so much money and never bear fruit.They will not listen to the public nor volunteers. Many people, in cuding myself, have to manage and “soldier on”, particularly overthe Christmas period when therr was no point in bothering A&E and the pain was m ind numbing. We elderly who take responsibility for ourselves deserve better. I can guess that most of us avoid hospitals and GPs as much as we can. We are the ones who slip through the net, not the ones who receive daily care.

  6. Rob F says:

    This is good – appreciate all the hard work involved in pulling this all together.

    Couple of thoughts … are we feeding in (enough) Behavioural Intervention / Nudge Unit learning into these resources and (related challenge) are we making the resources as visible, accessible and likeable enough particularly for GPs and practice nurses?

  7. A 73 year old Governor says:

    As a highly engaged NHS FT Governor I take proactive measures to allow me to care for myself and my co-morbidities. I was however at the realistic level of lack of care over the Christmas and New Year with no available local healthcare and a fear that A&E would not be in a position to help because of capacity issues. Sometimes capable people can be extremely isolated and at this stage it becomes very frightening. Even capable folks who manage well under difficult circumstances need more care at times and the NHS is failing us.

    • Kassander says:

      All NHS FT Governors are elected to ‘their’ CoG positions.
      They are representative of ALL the electors in their Constituency.
      That’s a large number of committed P&P who have high expectations of you and your fellow CoGs. They no doubt tell you of their concerns at your regular feedback meetings with them?
      Working with other CoGs, one can but assume that you are placing proposals before your CoG to rectify the situation you describe and to transmit those concerns to:
      ~ your Board of Directors
      ~ NHSE Board
      ~ Mr Hunt, SoS

      “the NHS is failing us”
      ~WE are Our=NHS
      ~You are one of OUR representatives
      ~You have your hands on levers of power
      ~YOU must help us get back control of Our=NHS
      ~You and your fellow COGs must show leadership or Our=NHS WILL fail us.
      ~If it fails, it will be in part due to you and all other CoGs’ inaction.

  8. Kassander says:

    ~ ​​people with lived experience;
    ​~ Sustainable Improvement Team;
    ​~ Towards the other end of the spectrum;
    ​~ sub-optimal medication;
    ​~ ​a nation of supported self-managers;
    ​~ ​37​ ​AREAS across England WHO will receive person-centred support to manage THEIR OWN care​​
    (Good afternoon, Mr & Mrs Area …);
    ​~​​ ​arm’s length bodies​;