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PPI across the UK: Divergent policies, different actors and different outcomes Professor Jonathan Tr

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Title: PPI across the UK: Divergent policies, different actors and different outcomes Professor Jonathan Tr


1
PPI across the UK Divergent policies, different
actors and different outcomes Professor
Jonathan Tritter
RCSLT Study Day and AGM , Cardiff 8 October2009
2
What are we going to talk about?
  • Defining Patient and Public Involvement
  • Conceptualising Patient and Public Involvement
  • Devolution and divergence in the UK
  • Different structures
  • Different tensions
  • Choice and Involvement in Europe
  • The challenges of markets and consumerism

3
Involvement in the NHS
  • Does User
  • Patient, Carer, Consumer, Customer or Citizen?
  • For the UK Government
  • User Involvement Patient and Public
    Involvement
  • This is a package of radical reform. It will
    enhance and encourage the involvement of citizens
    in redesigning the health service from the
    patients point of view.
  • (Department of Health, 2000 95)

4
Types of User Involvement in the NHS
  • User participation in decisions about treatment
    and care
  • User participation in service development
  • Comments on proposals for future plans
  • Prioritizaition of services
  • User evaluation of service provision
  • Complaints about services
  • User participation in teaching
  • User participation in resaerch
  • Setting the research agenda
  • Collecting and analyzing data

5
Forms of User Involvement
  • Direct User Involvement
  • Users play a role in making decisions
  • Indirect User Involvement
  • Users as a source of information which influences
    decisions
  • Vast majority of user involvement in NHS is
    Indirect
  • Relates to methods for involving users
  • Power, knowledge and resistance

6
User involvement in UK health policy
  • Long history
  • 1974
  • Establishment of Community Health Councils
  • 1992
  • Citizen Charter Initiative
  • Local Voices The views of local people in
    purchasing for Health (NHSME)
  • 1995
  • NHS Executive Priority

7
Defining involvement across the UKEngland
  • Patient and Public Involvement
  • Health and Social Care Act 2001 (Section 11)
  • Abolished Community Health Councils
  • Established PPI Forums attached to every NHS
    Trust
  • Performance managed by Commission for Patient and
    Public Involvement in Health (CPPIH)
  • National Health Service Act 2006 (Section 242)
  • Local Government Public Involvement in Health
    Act 2007
  • Abolished PPI Forums and CPPIH
  • from April 2008, Local Involvement Networks in
    150 Local Authority areas
  • Statutory guidance on duty to involve 2008

8
Local Government and Public Involvement in Health
Act (2007)
  • Local Involvement Networks (LINks)
  • promoting, and supporting, the involvement of
    people in the commissioning, provision and
    scrutiny of local care services
  • (b) enabling people to monitor and to review
    the commissioning and provision of local care
    services
  • (c) obtaining the views of people about their
    needs for, and their experiences of, local care
    services and
  • (d) making views known, and reports and
    recommendations about how local care services
    could or ought to be improved,
  • to persons responsible for commissioning,
    providing, managing or scrutinising local care
    services.
  • (Part 14 Section 221 subsection 2)

9
PPI in England How should LINks Work?
  • LINks Operational from 1 April 2008
  • Host organisations commissioned for three years
    from 1 April 2008
  • LINks assist NHS provider organisations to engage
    with the local community to improve services
  • LINks set their own agenda and focus on issues of
    concern to local people and seek to influence
    change
  • LINks should be integral in commissioning
    decisions to ensure they reflect the views of
    local people
  • National Voices

10
PPI in England How should LINks Work?
  • Established in all Local Authority who commission
    social services
  • 150 across England
  • LINks are supported by a Host organisation
  • Contracted by Local Authority
  • Commission/deliver tailored programme of learning
    and support
  • New funding from Department of Health
  • Formula based
  • Potential to pool resources with LA involvement
    activities
  • Each LINk will include individuals and
    representatives of local voluntary and community
    organisations

11
Defining involvement across the UKNorthern
Ireland
  • Personal and Public Involvement in Health and
    Social Care
  • Integrated Health and Social Care since 1974
  • Reform of health system announced in 2005
  • Public health and social care bodies went from 47
    to 18
  • Merging of nine Health and Social Care Trusts to
    four
  • Devolution in 2007
  • System and reforms frozen for 18 months

12
Defining involvement across the UKNorthern
Ireland
  • Statutory Guidance on PPI formally issued in
    September 2007 by DHSSPS
  • Requirements to consult and involve also
    specified in
  • Section 75 of the Northern Ireland Act 1998
  • Section 49A of the Disability Discrimination Act
    1995
  • Section 19 of the Health and Social Care (Reform)
    Act (Northern Ireland) 2009

13
Defining involvement across the UKNorthern
Ireland
  • Trusts individually responsible for PPI
  • Supported, developed and performance managed by
  • Patient Client Council
  • Public Health Agency
  • DHSSPS supports capacity building for staff
  • New Postgraduate module at Queens University
    Belfast
  • Still in transition and emerging

14
Defining involvement across the UKWales
  • Public and Patient Involvement
  • Devolution in 1997
  • NHS Wales guidance documents
  • Signposts 1 (2001) and Signposts 2 (2003)
  • Emphasis in PPI policies on representative local
    bodies and opportunities for collective voice
  • The new localism
  • Patient voice not patient choice
  • 12 Regional Trusts and 22 Local Health Boards
    co-terminous with local authorities
  • Designed for Life, the strategy is to empower
    the community to have its voice heard and heeded,
    rather than simply being given a choice of
    treatment location. (Welsh Assembly Government,
    200514)

15
Defining involvement across the UKWales
  • Retention and strengthening of Community Health
    Councils
  • Independent voice of the public and patients
  • Must be consulted about changes to health
    services in locality
  • Lead PPI locally
  • Provide advice, support and an advocacy service
    for complaints
  • Public Services and Performance Department (PSPD)
    to co-ordinate engagement policies across public
    sectors and inspection bodies concerned with
    health, social services and education
  • Tensions between promotion of localisation and
    recent shifts that increase central power
  • Abolition of charges prescriptions (2007),
    hospital parking (2008)

16
Defining involvement across the UKScotland
  • Patient Focus and Public Involvement
  • Devolution in 1997
  • 2003, established 15 NHS (now reduced to 14)
  • Reduced the purchaser-provider split
  • NHS Reform (Scotland) Act 2004
  • Abolished trusts, absorbing them into the health
    boards
  • Public involvement and equal opportunities duties
    placed on NHS Boards
  • NHS Boards to establish Community Health
    Partnerships
  • Community Health Partnership to use Public
    Partnership Forum for effective and formal
    dialogue with its local community 

17
Defining involvement across the UKScotland
  • Scottish Health Council established in April 2005
  • To support and monitor how NHS Boards carry out
    their patient focus and public involvement
    responsibilities
  • Assess and report on NHS Boards consultations
    with local communities
  • Independent from NHS Boards
  • Better Health, Better Care 2007 strategy document
  • Framed by mutuality - people and NHS staff as
    partners/co-owners of the NHS
  • Promotes a partnership model between health
    boards and community health partnerships and
    local authorities
  • Ending charges hospital parking 2008,
    prescriptions 2011
  • No new Public Finance Initiatives

18
Patient Choice
  • What is patient choice?
  • What do patients choose?
  • Their GP?
  • Their hospital?
  • The distance they need to travel
  • The parking arrangements
  • Their treatment?
  • Their lifestyle?

19
I hope were chosen
20
Choice and Involvement in EuropeAn EU Health
Services Directive?
  • EU operates on the basis of Competences in the
    Treaties
  • Four freedoms
  • Free movement of goods
  • Free movement of capital
  • Free movement of persons
  • Patients and health professionals
  • Free movement of services
  • Freedom of establishment
  • Patient Lobbying Groups
  • International Association of Patient
    Organisations
  • Consumer Powerhouse

21
An EU Health Services Directive?
  • European Court of Justice cases
  • Watts case (Case C-372/04) 16 May 2006
  • NHS patient from Bedfordshire had a hip operation
    in France
  • PCT refused to pay 3900 cost
  • The Court made clear that the requirement in
    Article 152 of the Treaty to fully respect the
    responsibilities of the Member States for the
    organisation and delivery of health services and
    medical care does not exclude the possibility
    that the Member States may be required under
    other Treaty provisions (e.g. Article 49 EC) to
    make adjustments to their national systems of
    social security.
  • Decker and Kohll (1998), Smits and Peerbooms, and
    Vanbraekel in 2001 and Müller-Fauré/van Riet, and
    Inizan in 2003

22
An EU Health Services Directive?
  • The Directive of the European Parliament for
    the Application of Cross-Border Healthcare
    Patients Rights
  • The legislation is supposed to set clear rules on
    who is responsible for covering the costs and
    securing the quality of medical treatment in
    other member states (EU Observer)
  • Patient rights
  • Framed primarily in terms of patient mobility in
    relation to access to health services
  • Promoting individual health service shopping
  • Focus on non-hospital care in draft Directive

23
An EU Health Services Directive?
  • Using a rhetoric of rights
  • But actually about access
  • Freedom for providers to establish services
  • creating market access for health providers
  • Little scope for choice
  • Limited by circumstance or pre-authorisation
  • Provision of Information whose responsibility?
  • Sweden knowledge of Estonian dentistry
  • Differential take up reinforcing health
    inequalities

24
An EU Health Services Directive?
  • Unpredictable resource requirements
  • Influx of foreign patients
  • New member states
  • Different expectation/experience
  • Services and/or medication
  • Follow-up and Complications
  • Not just an issue of liability insurance
  • NHS budgets held at local level (Primary Care
    Trust in England)
  • Predicting local health needs
  • Rationing through waiting lists no longer
    possible
  • Cross-border health care is estimated at around
    1 of overall public expenditure on health care
  • (Consultation regarding Community action on
    health services (SEC 2006 1195/4) citing Europe
    for Patients Project, www.europe4patients.org)

25
Reflections
  • The rhetoric of patient choice in health policy
    is not evident in service delivery
  • Rather it obscures growing commodification and
    opportunities for trade in health care
  • This is particularly apparent in the direction of
    EU activities
  • Pressure for choice is led by civil service and
    some politicians but not from patients
  • Patient and public involvement is distinct from
    individual patient rights
  • Empowering communities to prioritise and shape
    health services may limit individual access to
    services
  • Shifting the responsibility for rationing
    decision

26
Reflections
  • Without concern for both the viability and
    quality of participation, it is better to forgo
    the effort
  • (Fischer, 2006)
  • The coupling of partnership and
    participation brings to mind a double helping
    of motherhood and apple pie, or a bonus score in
    buzz-word bingo.
  • (Lowndes and Sullivan 2004 53)
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