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1. A narrative for person-centred coordinated (‘integrated’) care www.nationalvoices.org.uk @NVTweeting

2. Overarching summary – service user perspective Summary My goals/outcomes Communication 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.” Emergencies Information Decision making Transitions Care planning

3. In this slide set • Why do the health and social care systems need this Narrative? • 2. How did we develop it? • 3. The Narrative – for testing with system stakeholders • 4. What happens next? • 5. Questions for feedback

4. 1. Why do we need a narrative for“integrated care” ? • The King’s Fund/Nuffield Trust said, and NHS Future Forum agreed, that • “The most fundamental prerequisite to the development of integrated care at scale is the crafting of a powerful narrative”. With 175 current definitions of ‘integration’, the lack of a common understanding is a barrier to change; • and • the patient (and service user) perspective should be the ‘organising principle’ of integrated care, to ensure it results in significantly improved outcomes and experience. • Here we illustrate what impact “coordinated care” from the service user perspective could have on real people’s lives…

5. 2. How have we developed the patient/service user Narrative? • The Statements • This narrative is based on the statements that patients and service users could make if the care they experienced was person centred and coordinated. • The statements were initially drawn from consultations with patient organisations and patient experience indicators. They featured in a National Voices paper for the Future Forum. • Those statements were tested and revised in a workshop on September 24th 2012 that brought system leaders together with patients, service users and patient organisations. • The full version you now see built in their feedback. It also incorporates similar statements, developed with service users, from the ‘Making it Real’ initiative.

6. 3. The Narrative There are five key elements to the overall Narrative… Service user perspective A. overall subject what is it we are talking about? B. headline definition what the service user would say this means C. generic ‘I’ statements the elements of good co-ordinated care from the user’s perspective Service organisation response D. headline purpose what we all need to do to achieve the headline definition -- from commissioners’ and providers’ perspective E. ‘we’ statements what ‘we’ as commissioners and providers will do to achieve the headline definition [to be developed]

7. A. Subject ‘Integrated care’ means: person-centredcoordinated care* * This is the overarching subject. Patients want coordination. Whether services are formally integrated is secondary

8. B. Definition -service user perspective 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 is the headline definition of what co-ordinated care is. It was derived from consultations with patient organisations and discussed and amended at the workshop on 24th September 2012.

9. C. Generic ‘I’ statements All my needs as a person were assessed and taken into account.My carer/family had their needs looked at and were given support to care for me.I was supported to set and achieve my own goals.Taken together, my care and support helped me live the life I want to the best of my ability.I was in control of planning my care and support.I could decide the kind of support I needed and how to receive it. My goals/outcomes

10. C. Generic ‘I’ statements I was always kept informed about what the next steps would be. The professionals involved with me talked to each other. I could see that they worked as a team. I always knew who was the main person 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. That person helped me to get other services and help, and to put everything together. Communication

11. C. Generic ‘I’ statements I had the information and support I needed in order to remain as independent as possible. I could see my health and care records at any time to check what was going on. I could decide who to share them with. I could correct any mistakes in the information. Information was given to me at the right times. The information was appropriate to my condition and circumstances. It was easy to understand and up to date. I was told about the other services that were available to someone in my circumstances, including local and national support organisations. I was not left alone to make sense of information. I could meet (or phone/email) a professional when I needed to ask more questions or discuss the options. Information

12. C. Generic ‘I’ statements I was as involved in discussions and decisions about my care and treatment as I wanted to be. My family or carer was also involved in these decisions as much as I wanted them to be. I had help to make informed choices if I needed and wanted it. Decision making

13. C. Generic ‘I’ statements I worked with my main professionals to agree a care plan. I know what is in my care plan. I know what to do if things change or go wrong. My care plan was clearly entered on my record. I had regular reviews of my care and treatment, and of my care plan. I had regular, comprehensive reviews of my medicines. When I used a new service, my care plan was known in advance and respected. When something was planned and agreed to, it happened without me having to chase around for it. Care planning

14. C. Generic ‘I’ statements When I moved between services or settings, there was a plan in place for what happened next. The plan was delivered without unnecessary delays. I knew in advance where I was going, what I would be provided with, and who would be my main point of professional contact. I was given information about any medicines I was taking with me – their purpose, how to take them, potential side effects Information about me, including my views and preferences and any agreed care plan, was passed on in advance. I was still allowed to see and work with, as appropriate, preferred professionals who I already knew and knew me. When I went to a new service, they knew who I was, and about my own views, preferences and circumstances. If I moved across geographical boundaries I did not lose entitlements to care. Transitions

15. C. Generic ‘I’ statements I could plan ahead and stay in control in emergencies. I had systems in place so that I could get help at an early stage to avoid a crisis. Emergencies

16. C(i). Specific ‘I’ statements • Specific sets of ‘I’ statements will need to be developed for sub-groups of service users, for whom the generic set does not cover all of the most important aspects of co-ordinated care. • Sub-sets could include those defined by CONDITION such as: • children with complex needs, e.g. disabilities • people with continuing mental illness, e.g. schizophrenia • people with dementia and their carers • Sub-sets could also include people in defined SERVICE SETTINGS such as: • people in residential or nursing home care • people in end of life care • people liable to be excluded from services The needs of sub-groups of service users

17. D. Purpose – service organisation perspective Co-ordinated care means... partnering with the person to plan, pick and pull together care, support and treatment. * * This statement hangs beneath the headline definition, providing an overarching organisational perspective. This is for commissioners and service providers to use, in order to drive the way they organise services to achieve the user definition.

18. 4. What happens next to complete the Narrative? Over to you... • The Narrative will be completed when: • stakeholders have given us their feedback on the questions we have posed • local health and social care system leaders adopt the Narrative as the mark of ‘what good looks like’ , and... • ... complete their own ‘we’ statements – what they will do to make a reality of the service users’ definition. • We invite you to make these statements... for example:

19. E. organisational ‘we’ statement Name of organisation • We adopt the definition of person centred coordinated care. • We will work to achieve person centred coordinated care by:

20. 5. organisational ‘we’ statement • The NHS Commissioning Board is the first to declare its intent to use this Narrative. • The NHS Commissioning Board will adopt the completed narrative as their statement of what integrated care means for patients and service users. • The Local Government Association , Monitor, and the Department of Health also support the development of the Narrative. • We would like to see all local system leaders (eg Health and Wellbeing Boards, commissioners and service providers) and key stakeholders adopt this narrative and make their own statements of intent to support it. NHS Commissioning Board

21. 1. Leaving aside the specific content, do you agree that a common narrative will help to create a shared purpose and outcomes for ‘integration’ in health and social care? 2. Looking at the current draft Narrative, would this be directly helpful to orientate your own programmes of work, for example by drawing on it for your goals, aims and outcomes/benchmarks? 3. What is your reaction to the overall subject: ‘Integration means... Person centred coordinated care’? 4. What comments would you like to make on the headline definition of what this means from the service user perspective? In particular, have we left anything out that you consider vital to such a statement? 5. Your feedback (i)

22. 5. Looking at the generic service user statements, have we got the right set of categories? 6. We suggest that some sub-groups of people who need co-ordinated care will have important, specific system demands that cannot sit within the generic statements. For example, children with disabilities need their care to work seamlessly with their education and developmental needs. How do you think we can produce further statements relevant to these groups? Should it be done at local level or regionally/nationally? 7. Finally, a challenge:could you suggest a ‘we’ statement that could represent the particular contribution of your type of organisation (CCG/HWB/LA/service provider) to achieving the central statement? To respond online see www.engage.commissioningboard.nhs.uk/consultation/narrative-pccc Thank you for your time, attention and feedback. Your feedback (ii)

23. A narrative for person-centred coordinated care www.nationalvoices.org.uk @NVTweeting