Person centred care in residential and community settings - building quality and co-production Dame Philippa Russell, Vice-President, Carers UK E-mail: philipparussell118@gmail.com

From institutions to a family and community life – My story: a personal perspective on 50 years of change and challenges in the care market – and some reflections on quality and personalised care within a very diverse care system.] Simon’s story – Community inclusion and choice and control Simon – now 53 Living in his own home With a Personal Budget Range of activities Well supported staff Co-production with his family and friends

A reminder – Simon’s grandmother and different care options (with choice and control) ‘Personalised care – with choice and control for those needing care and support – means a diverse care market. Rebranding residential care as part of a spectrum of housing options with care is a pre- requisite for delivering the 2lst century care system we all want to see.’ [Professor Paul Burstow (2014), Commission on Residential Care]

Understanding the Care Market – who cares? 6.4 million family carers (500,000 dementia carers) 1.34 million jobs in the adult social care sector 145,000 jobs for Personal Assistants 91,000 care staff in the NHS Impact of budget cuts on local authorities – LA spending 5.3% less on social care 2016-17 compared to 2010-11. Major issues around recruitment, retention and personal development.

Understanding the complexity of 2lst century caring relationships. Stephen and Margaret – living with inter-generational care. Understanding family life and ‘conflicts of care’ within many modern families. ‘We are multiple users of care and support services. We want someone who will walk up the garden path and talk to us, know us, see our lives. The whole family is affected by disability, long term conditions.’

Physical, social and technological connectivity – challenges and opportunities for 2lst century care Technological connectivity and digital inclusion: New solutions to isolation; shared information, health and well-being and safeguarding BUT still major access issues. Physical connectivity: Taking a broad perspective of health and well-being including training, the built environment and transport. Social connectivity: For carers and patients and communities, a major issue – need for creative use of third sector, volunteers etc.

Integrating health and social care - ‘Big decisions and ‘blame games’ about transitions from hospital to care home, or family home to residential care. From hospital to home: Whose responsibility? – NAO estimates that 3l% of hospital discharges of older people are delayed. ‘Ready, steady, go? Tracking citizen, carer and patient experience’: starting discharge planning on admission; discharge to assess; rethinking older people as change agents as well as carers/patients!

Managing complexity in community settings - A challenge for the care market Even people with long term conditions who tend to be heavy users of the health service are likely to spend less than 1% of their time in contact with health professionals. The NHS will increasingly need to dissolve traditional boundaries. In effect the NHS will need to manage systems, networks of care, not just organisations and recognise the wider range of carers and care and support services as key partners in recovery.’ [Simon Stevens, Five Year Forward View]

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

Skills for care (and support for the care workforce] – the biggest challenge? ‘Social care cannot continue as a Cinderella service – without a valued and rewarded work force. Adult social care cannot fulfil its central role of supporting elderly and vulnerable people.’ [Amyas Morse (2018), launching National Audit Office report on social care workforce] ‘ Personalised care is more than providing a service. It should be a creative way of enhancing quality of life.’ [CQC, State of Care, 2016-2017]

Integrated Personal Commissioning - Carers and Patients new partners in transforming care The objectives: People with complex needs and their carers have a better quality of life. Support designed with and around individual needs and circumstances. Personal Budgets: supporting ordinary lives, flexible and crisis averse. What makes the difference: Recognises the need to plan, commission and blend integrated support to meet individual and family needs. Encourages self management and resilience. Changes relationships between professionals and users/carers. Explicitly utilises community resources eg third sector.

‘Compassionate leadership and compassionate care’ - a final reflection on what REALLY matters to people, patients and their carers (of all ages and all backgrounds)!