Simon Chapman Director of Policy & Parliamentary Affairs 8 July 2010 NCPC POLICY PRIORITIES & PARLIAMENTARY ACTIVITIES

OVERVIEW Influencing the new government What is the new agenda? What does that mean for palliative & end of life care? How can we influence that? NCPC’s Intelligence & Quality think-tank Working with the new National End of Life Care Intelligence Network (“NEoLCIN”) Shaping services around people

COALITION GOVERNMENT New politics Without recent precedent Aim for a 5-year parliament – next election 7 May 2015 Andrew Lansley (C) – Secretary of State for Health Manifestos superseded by the coalition’s “programme for government” Liberal Conservatives

PAUL BURSTOW MP (LD) Minister of State for Care Services: –End of Life Care –Adult Social Care –Carers –Personal Health Budgets –Long Term Conditions, including cancer and diabetes –Dementia

OTHER DH MINISTERS Simon Burns (C) Minister of State for Health: Reconfiguration of Services Application of Quality Regulation NHS Workforce Connecting for Health Anne Milton MP (C) - Parliamentary Under Secretary of State (PUS) for Public Health: Nursing and Midwifery Health Visiting Professional Regulation Medical Education and Training Earl Howe (C) – PUS for Quality (Lords): NHS Constitution NHS Commissioning Reform Primary Care NICE Innovation

DEFICIT REDUCTION IS THE OVERALL PRIORITY “We will guarantee that health spending will rise in real terms in each year of the Parliament, while recognising the impact this decision will have on other departments”

5 MINISTERIAL PRIORITIES A patient-led service culture - “nothing about us without us” Focus on better health outcomes - aligning patient- reported experiences with clinical outcomes Autonomy and accountability - empowering clinicians free from target-centred and bureaucratic systems Improving public health - promoting health, well-being and individual responsibility as part of the Big Society Reform of long term care - with better integration of health and social care

STRUCTURAL CHANGES What will the DH & infrastructure look like? –Cuts in quangos (significant) and NHS administration (1/3) –Strengthen CQC role –Develop Monitor as an economic regulator –Independent Health Board –SHAs to be abolished from April 2012 GPs: “patients’ expert guides” & commissioners consortia, spending c. £80 billion (?) PCTs will: commission “residual” services best undertaken at a wider level Be responsible for local public health Have some directly-elected board members

THE PROGRAMME FOR GOVERNMENT “New per-patient funding system for all hospices and providers of palliative care” 24/7 urgent care service including GP out of hours Personalisation: –“Put patients in charge of making decisions about their care, including control of their health records” –“Give every patient the power to choose any healthcare provider that meets NHS standards within NHS prices” –Break down barriers between health and social care –Personal budgets & direct payments Commission on long-term care to report within a year

NOT FORGETTING... Public services: employee- owned co-operatives; mutuals; social enterprises Encouraging volunteering Reinvigorating civil society Dying Matters

PEOPLE’S NEEDS DON’T CHANGE JUST BECAUSE THERE’S A NEW GOVERNMENT True on 4 May; true today: –More older people –More dementia and multiple conditions –More people will die each year –Numbers of home deaths currently falling

DEMOGRAPHICS & CAPACITY MEAN MORE PEOPLE WILL DIE IN THE COMMUNITY Building capacity to enable more people to die well in the community Key to include: –Training staff in health & social care and housing –Models of care that join-up services –Using data & intelligence to inform productivity & quality –Building community resilience & capacity –All community settings & sectors: care homes; GPs etc –Planning ahead together (2030 project) And don’t forget hospitals!

NCPC PRIORITIES- OVERVIEW Vision: making end of life care everybody’s business –Equipping everyone to improve people’s end of life care whoever & wherever they are –Equipping : informing; enabling; inspiring What will success look like? Some of the deliverables:

SHAPING SERVICES & CARE: WHAT DO THE DELIVERABLES LOOK LIKE? Publication on Personalisation –Significant document at outset of a new parliament –Will identify and link the different factors that can help shape care around people 24/7 project –Survey and conference –Vital to give people the confidence to be in the community –Building on manifesto call Establish new Transformation & Personalisation group Intelligence & Quality –The Essex factor –Funding survey

EQUIPPING PEOPLE IN PRACTICE People with personal experience – new publications Intelligence: MDS & workforce –Inform service planning & development –Trending Discussion document on specialist palliative care & end of life care Practice & ethical issues Guidance on use of sedative medications Discussion document on spiritual support & conference on October 14 Advance Care Planning Continuing to develop Eolc & dementia – Power of Partnership

PERSONALISATION WHAT DOES IT MEAN? Should not be defined simply by money mechanisms: personal budgets; direct payments Non-financial choice as well Control Dignity Being seen and treated as an individual person....“you matter because you are you!” W”w.ncpc.org.uk

PERSONALISATION... Sees people as actively involved co- producers, not recipients “Fits services around people’s needs, not people to services” Focuses on outcomes, not existing services Personalising Care; a route map to delivery for care providers The Care Provider Alliance

LIFE THROUGH LANGUAGE Our roles vary – sometimes we might be called... Patients Residents Carers None of us likes being called a “user”…or a co- producer? We are always... People Citizens

SOME LEVERS TO SHAPE SERVICES AROUND PEOPLE Financial Personal budgets/direct payments Per-patient funding system Commissioning Careful contract drafting Outcome measures & quality standards Involving people with experience Practice : care plans and advance care planning 24/7 care Legislation: –Mental Capacity Act –NHS Constitution - a right to choose to die at home?

NATIONAL END OF LIFE CARE INTELLIGENCE NETWORK Key objectives include: Co-ordinate a national data to enable people to create intelligence from the data and improve quality & productivity Utilise and disseminate existing data sources more effectively for local service planning and driving improvement in standards Exploring better use of data for commissioning, service delivery, research and audit Project manager appointed: Linda Charles-Ozuzu Website live: NCPC on steering group

NCPC’s DATA & INTELLIGENCE

BAND 8 SPC NURSES

OTHER DATA SOURCES South West Public Health Observatory Variations in place of death in England Deaths from Neurodegenerative Diseases in England, 2002 to 2008 Deaths from Renal Diseases in England, 2002 to 2008 InstantAtlas local profiles

WIRRAL PLACE OF DEATH

WIGAN PLACE OF DEATH

HIGHEST INCIDENCE OF HOSPITAL DEATHS

HIGHEST INCIDENCE OF HOME DEATHS

3 CHALLENGES FOR THIS PARLIAMENT “Ensuring a good death for everyone” should be a key quality outcome for all commissioners and providers across health and social care Access to co-ordinated 24/7 end of life care services to enable people to remain in home and community settings of their choice Empowering people to talk about dying, death and bereavement and to make plans for their the end of life care and support