A person centered approaches and services user involvement in health and social care

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WK5-challengesandbarrierstoinvolvement.ppt
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CHALLENGES & BARRIERS
SERVICE USER INVOLVEMENT

WEEK 5

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TODAY’S SESSION

  • Overview of the UK healthcare system and where care is provided the most and how it is coordinated

  • Barriers/ challenges to service user involvement

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The UK healthcare system
Providers and commissioners

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Partnership

Licensing

Department of Health

NHS Commissioning Board

GP Commissioning Consortia

Providers

Monitor

CQC

Patients & Public

Local

Authorities

Local

HealthWatch

contracts

Accountability

Funding

The NHS being a national organisation, governed by political and economic agendas already has the ability to control and condition health services.

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The UK healthcare system
The role of Clinical Commissioning Groups

Clinical Commissioning Groups (CCGs) are one of the commissioners of healthcare in the country

CCGs are made up of groups of GP practices (they are ‘clinically led’)

CCGs commission healthcare in Leeds.

They plan and pay for hospital, community and GP healthcare in the city

There are three CCGs in Leeds

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The role of primary care
Who does what in healthcare?

Primary care is responsible for 90% of patient contact

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Service user involvement
What is the role of a service user?

Patients, carers and the public

Commissioners and providers

The evidence base within the literature suggests various barriers central to SUP, even though there is also a lot of evidence to suggest that service users are championed nationally

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CAN YOU THINK OF SOME REASONS WHY THERE ARE BARRIERS TO SUI & DELIVERING PERSON CENTERED CARE?

DISCUSS...

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ACTIVITY

  • SCENARIOS – Different levels of involvement

  • Identify where scenario fits on ladder, discuss the reasons for this decision and how this could be improved so that the scenario may sit higher up the ladder

This ladder helps to clearly put into perspective what ‘participation’ or ‘involvement’ means especially for people who are initiating a participatory activity.

A feasible question to ask: is it possible to move up this ladder? For example, are organisations willing to go beyond just ‘consultation’ to enabling the community to act by developing ‘partnerships’ which a step higher.

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WHAT IS THE ROLE OF A SERVICE USER?

  • There is still the perceived notion that health organisations hold the power, which may get in the way of truly engaging with service users.
  • The ongoing criticism of barriers to real involvement also often times focus on negative issues that subsequently deter people from getting involved.
  • This cannot be ignored, because interactions and relationships with service users form the foundation for meaningful outcomes in participatory activities and for SUI to foster

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BARRIERS / CHALLENGES

  • Tokenism characterises the main barrier to participatory initiatives.
  • Some of the identified factors that contribute to perceived tokenistic views and that influence the direction and outcomes of SUI are
  • power/professional status,
  • varying perspectives on knowledge and
  • rhetoric to actions
  • These factors could either prevent people from taking part in involvement activities.

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BARRIERS / CHALLENGES

CHOICE & CONTROL

  • Choices made by healthcare professionals can constrain those of service users, which in turn becomes an exercise of control.
  • The NHS being a national organisation, governed by political and economic agendas already has the ability to control and condition health
  • Therefore, service users’ ability to exercise their own choice could become constrained at individual and group level.

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BARRIERS / CHALLENGES

POWER & PROFESSIONAL STATUS

  • Laverack’s (2005) argument on how power is exercised...

  • Firstly, the sharing of control (power) with others and

  • Secondly the use of control (power) to exert influence over others.

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BARRIERS / CHALLENGES

POWER& PROFESSIONAL STATUS

  • Three different variations for health practitioners to consider on exercise of power according to Laverack (2005, p. 11-14) are:

1. power-from-within: (described as an experience of ‘self’ also known as individual, personal or psychological empowerment, means of gaining control over one’s life. Individuals having some inner sense of self-discipline, self-knowledge and self-esteem)

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BARRIERS / CHALLENGES

POWER& PROFESSIONAL STATUS

  • Power according to Laverack (2005, p. 11-14) are:

2. power-over: (the social relationships in which one party (e.g. service users) does exactly what another party (e.g. professional) wishes them to do, and may not be in their best interests)

3. power-with: (the social relationship in which power-over is used deliberately, but carefully to increase other people’s power-from-within, rather than dominate or exploit them)

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BARRIERS / CHALLENGES

POWER& PROFESSIONAL STATUS

  • These variations indicate that the exercise of power in the participatory process itself shapes the constitution of its interest.

  • The professional-patient relationship is the active interactions/relationship between health professionals and service users

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BARRIERS / CHALLENGES

POWER REBALANCE

  • This drive for rebalancing power-relationships between health providers and service users is currently being advocated as patient empowerment.
  • Laverack (2005) stated

“patient empowerment enables people to take control of their health, well-being and disease management and to participate in decisions affecting their care”

(Laverack, 2005, p. 39).

High quality care now require healthcare professionals to have responsibility to address patient centred care, taking into account the benefit of their professional decisions to individual people and also implication for other patients and wider systems

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BARRIERS / CHALLENGES

Professional responsibility to address

  • High quality care require healthcare professionals to have responsibility to address patient centred care, taking into account the benefit of their professional decisions to individual people and also implication for other patients and wider systems

  • This requires particular attention to all interactions that take place within a patient-professional relationship

  • Evaluating the capacity for shared decision making that is being extended to service users in ensuring there is a balance within power relationships

This will enable service users to attribute value to their own contributions and ensure a perceived sense of equal partnership with healthcare professionals

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BARRIERS / CHALLENGES

KNOWLEDGE

  • Another factor worth consideration in relation to power balance and professionals’ status is knowledge.

  • Hodgson and Canvin (2005: p 39) argues that
  • “involvement cannot proceed unless different kinds of knowledge come to be considered knowledge”.

  • Beresford (2005) also explored if service users’ knowledge can ever have equal status and if it could be classed as evidence?

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BARRIERS / CHALLENGES

KNOWLEDGE

  • This question clearly raises issues with voice, power and control

  • It also shows that there is still a tendency for service providers / healthcare professionals to stand from a position of having superior knowledge in comparison to users who may rely on their own and/or others experiences

Bringing different knowledge together rather than categorising and raising tensions of power can result in ‘authentic’ participatory process and strengthen the evidence base practice in participatory processes.

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BARRIERS / CHALLENGES

RHETORIC TO ACTION - Meaningful outcomes

  • Often, the process to achieve meaningful outcomes is not always easily attainable.

  • Challenge - health service re-design, development or improvement is mainly professionally led and new plans tend to have been discussed by health professionals and commissioners before service users are brought in to engage with the agenda.

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BARRIERS / CHALLENGES

RHETORIC TO ACTION - Meaningful outcomes

  • Delays in communication of informative materials to engage service users in discussions = service users not being able to make an informed contribution in the process
  • This impacts on authenticity and meaningfulness of users’ involvement
  • Therefore service users’ expectations do not often align with their experience of being involved.

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BARRIERS / CHALLENGES

ENCOURAGED DEPENDENCE

  • A culture is required that does not encourage dependence.

  • In clinical settings the barriers to joint or partnership working can prevent the giving and sharing of information.

  • It involves moving away from the more traditional prescriptive approaches, towards joint working between clinician and service user.

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CHALLENGE –ISSUES ON SERVICE USER REPRESENTATION

  • Although participatory initiatives are seen as a democratic effort...

  • The numbers of service users actually involved is not representative of the national call for “all” users to be involved in health services (Warren, 2008).

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CHALLENGE –ISSUES ON SERVICE USER REPRESENTATION

  • According to Fredriksson and Tritter (2017) SUI initiatives do not mean that most citizens are engaged in participatory activities.

  • They further stated that “it is more accurate to say that a few citizens actively serve as representatives of a potential constituency …” (Fredriksson and Triter, 2017: p. 103),

  • Thus, not all service users participate in the various processes or procedures of being an involved user.

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CHALLENGE –ISSUES ON SERVICE USER REPRESENTATION

  • Emphasis on the need for representativeness of individuals and groups.

  • One of the fundamental dilemmas of representation of service users in participation is that only a few individuals have the power (mostly as a result of being members of local forums/groups), or confidence to be involved in decisions around their health systems.
  • LINKS IN WITH EMPOWERMENT AGENDA FOR SERVICE USERS – NEXT WEEK’S SESSION

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CHALLENGE –ISSUES ON SERVICE USER REPRESENTATION

  • REPRESENTATIVENESS – SERVICE USERS
  • This creates a challenge for having unrepresentative group or forums that may not express the views, attitudes and experiences of the wider people being represented (Hogg, 2007)

  • Another issue: who a lay member is representing - if representing users of specific services or simply themselves.

Thus, if representing other users, it raises the question of how accountable they are to those they represent

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CHALLENGE –ISSUES ON SERVICE USER REPRESENTATION

REPRESENTATIVENESS – SERVICE USERS

  • One of the reasons for abolishing PPI forums was that they were not representative of their communities and the existing system was too bureaucratic and subject to 'tick the PPI box' (DoH, 2007a, p. 28).
  • Challenge – How to bring together individual experiences in a way that it becomes an evaluation of a group of individuals or a forum that represents the collective views of groups

in such a way that it influences the decision making process around healthcare provision.

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A conceptual framework for SUI

Individual

My say in decisions about care and treatment

Collective

Our say in planning, design and delivery of services

Information

Feedback

Influence

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A conceptual framework for SUI

Information Feedback Influence
Individual My say in decisions about care and treatment Information to patients about treatments (comms) e.g. PALS, complaints e.g. Expert patient; advocacy
Collective Our say in planning, design and delivery of services Information to citizens about services (comms) e.g. patient experience data (surveys, focus groups); consultation; Trends in PALS, complaints data; LINks Representation and involvement in decision making

OUTCOMES

OUTCOMES

OUTCOMES

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ACHIEVING SERVICE USER INVOLVEMENT

Choice

  • is central to user involvement and fundamental to development of good health and care services.

  • Although choice and involvement should be the norm, we still do not know what partnership working in practice can achieve in terms of outcomes and benefits.

  • Lot more scope for service user involvement and person centered approaches in care to develop

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ACHIEVING SERVICE USER INVOLVEMENT

Partnership

  • Partnerships and involvement can be considered as a continuum,

from service users who are not engaging

to

those who are fully engaged.

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DYNAMICS OF PARTICIPATION

  • Who is participating, why they are participating and how they are participating?

  • Who’s processes for which purposes and on what terms have the participation activity taken place?

  • These questions can ultimately break down the barriers and challenges to SUI / PCA

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Primary

care

 first point of contact with

NHS

 90 per cent of patient

interaction

GP practices

Pharmacies

NHS walk-in centres

Dentists

opticians

Some urgent care

Community

care

 Community based healthcare

 Non-emergency

 referred by primary care

Occupational therapy

Community gynaecology

services

Podiatry services

Wound prevention and

management service

Secondary

care

 Provided by hospitals

 Elective care –pre-arranged, non-

emergency care, referred by primary care

 Non-elective care – emergency or very

urgent care

Emergency care

Some urgent care

Ambulance trusts

Care trusts

Mental health trusts

NHS trusts (hospitals)