Welcome to “A Stronger Voice” National Events October 2014

Cabinet Secretary for Health & Wellbeing, June 2014 Alex Neil, MSP ‘A Stronger Voice’ Ensuring the views and experience of service users and the public define health and social care “We must do more to listen to, and promote, the voices of those we care for. We need the voices of patients, those receiving care and their families to be heard in a much clearer and stronger way.” Cabinet Secretary for Health & Wellbeing, June 2014 The development of a “Stronger Voice” came from a statement by the Cabinet Secretary for Health and Wellbeing in June 2014.

SG response to Christie commission Health Boards (membership & election) (Scotland) Act & Pilots 2004 2005 2007 2009 2010 2011 2013 2014 Public Bodies (Joint Working) (Scotland) Act Social Care (Self Directed Support) Act CEL(04)2010 Informing, Engaging and Consulting A short history of initiatives within NHS Scotland aimed at strengthening the voice of patients, service users and members of the public: 2004 – NHS Reform Act 2005 – Establishment of the Scottish Health Council 2007 - Better Health, Better Care Action Plan, the SNP’s first major health strategy and the one which introduced the concept of mutuality and a number of key actions, like the introduction of a Participation Standard. 2009 – Health Boards (membership & election) (Scotland) Act & Pilots - in seeking Cabinet agreement to end the pilot elections to Health Boards this time last year, the Cab Sec offered the assurance that he would instead develop a range of proposals to further strengthen participation in the NHS, including strengthening the voice of patients and the public. 2010 - Participation Standard for NHS in Scotland The Health Care Quality Strategy CEL(04)2010 Guidance on Informing, Engaging & Consulting People one of Scottish Government’s most significant CELs and has particular resonance to patient and public voice and the way Boards carry out their participation duties. It emphasised the importance of the requirement on Boards to routinely involve people in designing, developing and delivering services. 2011 – The Patient Rights (Scotland) Act 2011 Scottish Government response to the Christie Commission 2013 – Social Care (Self Directed Support) Act 2012 Roll out of Patient Opinion 2014 – Recommendations from the Scottish Health Council’s Listening and Learning Report Community Empowerment & Renewal (CER) Bill, which has a “participation request”

Why? Transparency and openness To continue to be informed and challenged by people who access and use services Listening with purpose and action Why are we doing this work?

‘The danger of a single story’ Our lives, our cultures, are composed of many overlapping stories. Novelist Chimamanda Adichie tells the story of how she found her authentic cultural voice — and warns that if we hear only a single story about another person or country, we risk a critical misunderstanding. https://www.ted.com/talks/chimamanda_adichie_the_danger_of_a_single_story

How? Scanning the evidence Local engagement/ discussions Structured interviews National engagement events Digital engagement Some of the engagement work which has been carried out by the Scottish Health Council so far, in order to get feedback from patients, service users, members of the public and staff Scanning the evidence – also building on earlier pieces of work Local Engagement/Discussions – across Scotland from Dumfries to Lerwick totalling 140 (spanning wide range of groups) Structured interviews - with ‘subject leaders’ e.g. Policy makers, NHS Citizen, The IHI, and so on. National Engagement Events – 4 in Glasgow, Edinburgh and Dundee (including a second one in Glasgow aimed at staff) and a virtual event Digital engagement – including an online survey and extensive use of Twitter An equality impact assessment will be carried out at the end of October to ensure no groups have been missed out from the process (e.g. State Hospital, Prison population, people with learning disabilities)

Techniques & Approaches The landscape… Existing Structures Public Partnership Forums Patient Participation Groups Scottish Health Council Local Councillors Patient Advice & Support Service (PASS) Techniques & Approaches Managed Clinical Networks Citizen’s Panels Patient Councils Hospital Forums Public Meetings Empowered Patients Decision support tools Patient-held records Clinicians encouraging patients to ask more questions Greater access to structured education on self-management Social Media Patient Opinion Care Opinion Twitter Third Sector The ALLIANCE Coalition of Carers in Scotland Voluntary Organisations Local Support Groups These are just a few examples of the ways people can have their say at the moment within health and social care in Scotland. It is by no means an exhaustive list, but this shows how many structures are currently around. We don’t want to lose what we already have that works.

The evidence… Scotland England Wales Netherlands Northern Ireland Registered Tenants Organisations National Parent Forum of Scotland England Healthwatch England Local Healthwatch Citizens Assembly (NHS England) Wales Participation Cymru Community Health Councils One Voice Wales National Social Services Citizen Panel These are some national and international ways we’ve come across through our scoping exercise to support this work. Good practice from other sectors in Scotland and from the health and care sector in some other countries. Netherlands Federation of Patients and Consumer Organisations Northern Ireland Patient Client Council

Recent engagement on similar themes National User Engagement Structure (2010) Public Consultation on health and social care integration (2012) Future possibilities for public involvement in adult health and social care in Scotland (2012/13) Engagement on informing Scottish Health Council response to the Public Bodies (Joint working) Scotland Act 2013 Over the past four years the Scottish Health Council has worked with over 600 patients, carers, members of the public, Scottish Government and other stakeholders such as COSLA and national and local 3rd sector organisations to gather views relevant to the development of a stronger voice for service users at every level.   National User Engagement Structure (2010) This review reported to the the Mutuality, Equality and Human Rights Board and involved over 70 stakeholders from national patients groups, the Public Partnership Forum Chair Network, equality groups as well as umbrella, national Community and Voluntary organisations, NHS Boards and Scottish Government Health Directorates. Public consultation on Health and Social Care Act (2012) The Scottish Health Council held four events to support the Scottish Government to discuss the proposals to integrate adult health and social care. A total of 220 people attended which included members of the public, third sector, NHS and Social Care staff. Future Possibilities for Public Involvement in Adult Health and Social Care in Scotland (2012/13) Engagement to inform the research came from approx 140 members of public and practitioners in health and social care. Engagement on informing Scottish Health Council response to the Adult Health and Social Care Act (2013) Between June and September 2013, the Scottish Health Council ran four events to discuss the ideas raised by the above research and think piece. These events brought together over 200 members of the public, health and social care practitioners, and other interested individuals (for example from the voluntary and community sector).

Local Discussions… agreement that it is vitally important for service users and the public to be listened to, and genuine enthusiasm for this to happen services need to make people feel valued and demonstrate the difference that has been made as a result of listening need to change attitudes – empower staff and remove the fear factor for both staff and patients/public the individual service user voice becomes stronger when it is backed/part of a collective voice ideas about need for support/representation from a recognised place or organisation in a systematic way Some of the feedback which has emerged from local discussion groups…

Some comments so far… ‘The only person who sees the whole journey is the patient’ “In order for a strong public voice to be listened to, history shows there needs to be lot of people involved ... with many saying the same thing, it is more likely to influence change.” ‘A collective / stronger voice can ‘talk’ at national level ‘People who have ‘found a voice’ could provide peer support/mentoring to others’ ‘Feedback – “you said, we did” or even “you said, we tried and here’s why it didn’t happen” Some of the feedback which has emerged from local discussion groups…

Next steps… Information and feedback from engagement considered by reference group Proposals in December 2014

Thank You. Watch our progress at: scottishhealthcouncil Thank You ! Watch our progress at: scottishhealthcouncil.org/strongervoice.aspx Keep in touch at: @StrongerVoice