Now is the time to have your say on the draft version of a “narrative” on integrated care, writes Jules Acton

A health professionals hand steadying and elderly womans hand

“The most fundamental prerequisite to the development of integrated care at scale is the crafting of a powerful narrative” − the King’s Fund and Nuffield Trust

We all agree that integrated care is the way forward. However, we need to make sure we have the same vision of it – the same aims. As pointed out above by The King’s Fund, the Nuffield Trust and also by the NHS Future Forum, we need a “narrative” we can share.

In discussions about integrated care, it has emerged that people have divergent views on  what it actually is. One research study was able to list at least 175 definitions of integration.

The King’s Fund, the Nuffield Trust and the NHS Future Forum have all agreed that the patient (and service user) perspective should be the “organising principle” of integrated care, to ensure it results in significantly improved outcomes and experience.

With this in mind, the NHS Commissioning Board  recently approached National Voices and asked us to produce a narrative around integrated care. We have worked on this with patients, other service users, carers and families and alongside the board, the Local Government Association, the Department of Health, Monitor and ADASS.

We have a draft version now and we would welcome the views of all those involved in health and social care to help us refine it and find a version we can share. So far we have agreed a definition and set out the context around it. The definition is as follows.

Person-centred co-ordinated care:

“My care is planned with people who work together to understand me and my carer(s), put me in control, co-ordinate and deliver services to achieve my best outcomes.”

This marks a shift in language from ‘integration’ or ‘integrated care’ to ‘coordinated care’. This is significant: the term ‘coordinated care’ means much more to service users; it helps to describe what they actually want and we think it could also help professionals to keep a picture of the end goal in mind.

Also, when professionals start using ‘integration’ type terms, there is a tendency for the discussion to focus on the joining up of systems or services and to take our eyes off the end goal: the care the service user needs. Joining systems can be a way to achieve the goal in some places, but it may not work in others. It certainly isn’t the goal in itself.

To give the narrative some context, the most helpful approach would be to work with patients and their organisations to come up with a series of ‘I statements’. These describe what coordinated care will look like in the eyes of the service user. We hope they will help planners picture the benefits of getting coordinated care right;  keep in view the end user along with the outcomes they need. They could be useful in setting performance indicators, too.

Examples of “I statements” include:

  • “I was supported to set and achieve my own goals.”
  • “I always knew who the main person was in charge of my care.”
  • “I had one first point of contact. They understood both me and my condition(s). I could go to them with questions at any time. ”
  • “I had the information and support I needed in order to remain as independent as possible.”
  •  “I was as involved in discussions and decisions about my care and treatment as I wanted to be.”

We envisage that specific sets of ‘I statements’ will also be developed for groups of service users for whom the general set does not cover all of the most important aspects of co-ordinated care. Sub-sets could include children with complex needs, for example disabilities; people with continuing mental illness, such as schizophrenia; people with dementia and their carers. Other subsets could also include people in defined service settings such as those in residential or nursing home care; people in end of life care or people liable to be excluded from services.

The commissioning board plans to adopt the completed narrative, but before that we need to establish whether it works for commissioners and providers. It  will only be completed when stakeholders have given their feedback, when local health and social care system leaders adopt it as the mark of ‘what good looks like’, and when they also set out what they will do to make a reality of the service users’ definition

Please take a look at the draft narrative. Share it with colleagues and partners and, above all, give your feedback so we can make sure the final version works for you. Please click here to respond by 28 February. Thank you in advance for your response.

Jules Acton is director of engagement and membership for National Voices, the health and social care charity coalition