1. People shaping services Jeremy Taylor, CEO, National Voices At COT 38 th annual conference, Brighton 3 June 2014

3. National Voices is: “the leading coalition of health and social care charities” Health Service Journal Our mission: – Promoting person-centred health and care – Being a valued membership organisation 160 organisations as members Founded in 2008

4. A service view

5. A person’s view

6. When people & services come together...... Putting patients first Patients at the heart Patient focussed healthcare Person-centred healthcare Shared decision making Whole-person care Engagement Involvement Participation Patient and Public Voice PPI/PPE No decision about me without me

7. What matters? – the evidence Access Information Communication Involvement Family and friends Privacy, confidentiality and dignity Independence Support for self-care and independent living Personalised service, coordination and continuity Practical support Emotional support

8. What matters? – the testimony It’s so hard to get an appointment I don’t know what’s going on The receptionist wouldn’t even make eye contact What are my choices? I need to discuss it with my daughter I’m not happy about the way they spoke to my Mum I just want to get on with life I’m fed up being passed from pillar to post I know what to do if things change or go wrong Macmillan were fantastic in helping explain about my benefits Joining the walking group has made such a difference

9. What matters? – the things we talk less about pain exhaustion fear anxiety depression anger hopelessness confusion loneliness

10. Living with.....

11. Traditional practice styles…… Create dependency Discourage self-care Ignore preferences Undermine confidence Do not encourage healthy behaviours Lead to fragmented care

12. Informed, engaged patients Have the knowledge, skills and confidence to manage their own health and healthcare, And they…… Make healthy lifestyle choices Make informed and personally relevant decisions about their treatment and care Stick with treatment regimes Experience fewer adverse events Use less costly healthcare With thanks to Angela Coulter

13. Out-of- Hours Doctors GP District Nurses Social Worker Malcolm & Barbara Consultant Continence Adviser Speech & Language Adviser Dietician Community Dentist Occupational Therapist Equipment Service Physiotherapist Alternating Mattress technician Wheelchair Service Oxygen service Direct Payments Team; Rowan Org. Alzheimer’s Soc outreach worker Care team 2 live-in carers (alternating weekly) Replacement carer [Some night nursing – Health] Emergency carers & Barbara The Web of Care (Last 7 yrs) Dementia Advisory Nurse?

14. Person centred coordinated care “I can plan my care with people who work together to understand me and my carer(s), allow me control, and bring together services to achieve the outcomes important to me.” Information My goals/outcomes Communication Decision making Care planning Transitions

15. Care planning I work with my team to agree a care and support plan. I know what is in my care and support plan. I know what to do if things change or go wrong. I have as much control of planning my care and support as I want. I can decide the kind of support I need and how to receive it. I have regular reviews of my care and treatment, and of my care and support plan. I have systems in place to get help at an early stage to avoid a crisis.

16. Communication I tell my story once. I am listened to about what works for me, in my life. I am always kept informed about what the next steps will be. The professionals involved with my care talk to each other. We all work as a team. I always know who is coordinating my care. I have one first point of contact. They understand both me and my condition(s). I can go to them with questions at any time.

17. Information I have the information, and support to use it, that I need to make decisions and choices I have information, and support to use it, that helps me manage my condition(s). I can see my health and care records at any time. I can decide who to share them with. I can correct any mistakes in the information. I am told about the other services that are available to someone in my circumstances, including support organisations.

18. Decision-making I am as involved in discussions and decisions about my care, support and treatment as I want to be. My family or carer is also involved in these decisions as much as I want them to be. I have help to make informed choices if I need and want it. I know the amount of money available to me for care and support needs, and I can determine how this is used (whether it’s my own money, direct payment, or a ‘personal budget’ from the council or NHS).

20. Engaged, informed patients HCPs committed to partnership working Organisational processes Responsive commissioning Personalised care planning Coulter, Roberts, Dixon: Delivering better services for people with long-term conditions – building the House of Care, King’s Fund, October 2013

21. Engaged, informed patients HCPs committed to partnership working Organisational processes Responsive commissioning IT: clinical record of care planning Know your population Test results and agenda setting Consultation skills and attitudes Integrated, multi- disciplinary team and expertise Senior buy-in and local champions Prepared for consultation Information and structured education Emotional and psychological support Develop market to meet current and future needs Identify needs, map resources Quality assure and monitor Establish and publicise menu of care, including “more than medicine” offer Ensure time for consultations, training and IT Personalised care and support planning

22. “More than medicine” Self-management Family Friends Neighbours Peer-supporters Befrienders Advocates Community health champions Patient and lay leaders Voluntary sector organisations

23. Changing models of care From:To: Patients as recipients People as partners and managers of their health Primarily medicalIncreasingly social Professionals designing services Co-design of services Mobilising doctors, nurses and drugs Mobilising citizens and communities Treatment plans Participative care and support planning Clinical outcomes Outcomes that matter to people Hospital focusOut of hospital focus

24. “Using the public voice” There’s no such thing as “the public”! There’s no such thing as “voice”! Please don’t “use” us; work with us! Don’t just “hear our voice”; talk with us! Don’t just talk with us, involve us! Don’t just listen, do something about it! Find out what matters, do it, measure it!

25. Torbay outcomes Reduced admissions to acute care – bed day usage per 1,000 pop Highest 1281 Devon 977 Torbay 720 Minimal delayed discharges from local DGH & fewest excess bed days in South West Reablement saved 355K last year Halved admissions to long term care. Feb 2006; 1298 placements. December 2013; 676 placements Quicker response to referrals e.g. MSK services same day appointments Increased number of people “diverted" from care

26. “Using the public voice” People - in the end we are all people People engaged in their own health – understanding how to help Partners in decisions – not just listening, but sharing Self-managers - information, planning, education, support Consumers – asking, listening, analysing, reacting Citizens - hearing everyone, respecting rights Commissioners – direct payments, personal budgets, helping people take control People helping people - tapping into power of social action Leaders - embracing and working with patient leaders, experts by experience etc Communities - reaching out, finding out, involving

27. How much do you want let go?

28. References Health Foundation resources on shared decision making NHS Networks: smart guides to engagement NHS England guidance on participation National Voices guide to care and support planning National Voices narrative of coordinated care Centre for Patient Leadership School for healthcare radicals resources Many to Many: how the relational state will transform public services, Muir and Parker, IPPR, Feb 2014 Many to Many: how the relational state will transform public services, Muir and Parker, IPPR, Feb 2014 Volunteering in health and care. The King’s Fund. March 2013 Altogether Better: evidence summary, community health champions Altogether Better: evidence summary, community health champions

29. "The starting point for any system of care should be to ask what it takes to lead a good life". The Generation Strain: Collective solutions to care in an ageing society. McNeil & Hunter IPPR April 2014

30. Thanks for listening www.nationalvoices.org.uk Follow us on Twitter @NVTweeting @JeremyTaylorNV

31. For discussion: how are you helping....? People - in the end we are all people People engaged in their own health – understanding how to help Partners in decisions – not just listening, but sharing Self-managers - information, planning, education, support Consumers – asking, listening, analysing, reacting Citizens - hearing everyone, respecting rights Commissioners – direct payments, personal budgets, helping people take control People helping people - tapping into power of social action Leaders - embracing and working with patient leaders, experts by experience etc Communities - reaching out, finding out, involving

32. For discussion: What can you do personally? What can your service do? What can your organisation do?