Ppe Paper For Cc Gs Towards Authorisation And Beyond

PPE - A synthesis of perspectives for
CCGs towards and beyond
authorisation

compiled by Jane Keep, Associate, Healthskills
February 2012

Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.uk
Registered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92

Contents:
1. Introduction
2. The Impetus - why bother with PPE?
3. Where is PPE now?
a. New context old legacies - particularly in economic terms
b. Clarity around the levels of PPE - collective and individual
c. The language and meanings - of PPE
4. It’s all about people and relationships
5. It’s not just about patients and the public
6. Other stakeholders and relationships
7. Information
8. The Move Towards Self care/self management
9. Things to consider going forward/setting conditions, building on assets
10.Ensuring PPE is effective
11.Governance
12.Ethics
13.Websites, and other resources
a. governance
b. Patient Participation Groups (PPGs)
c. staff/workforce engagement
d. self management
e. patient participation, lay health workers, other PPE initiatives
f. Personal health budgets and disability ‘right to control’
g. the High street
14.Models
15.Tools and Techniques
16.References (and further information, more websites)
Appendix 1. Diagnostic questions to ask as a CCG going forwards, towards and
beyond authorisation
Appendix 2. NHS Patient Experience Framework.


PPE - A synthesis of perspectives for CCGs towards and beyond authorisation
(Compiled by Jane Keep, Associate, Healthskills - February 2012)

1. Introduction

This paper is a synthesis based upon the vast amount of new (and old) policy papers,
guidance notes, workshop materials, approaches and systems relating to engaging,
empowering, and involving patients and the public, and engaging the workforce, most
of which have been taken from guides and papers about developing CCGs. It is not
suggesting what is here written is ‘the way’ forward, more it is presenting some
questions, challenges, ideas and options as to the way forward in supporting CCGs
towards, and beyond authorisation. At the end of this paper is a list of some of the
currently available resources and websites relating to engaging, empowering and
involving. This paper is not about broader communications (or the media), although
patient and public engagement (PPE) is part of communications. For the purpose of this
paper the shortened term ‘PPE’ has been used, but as noted in this paper, there are
many terms that could be used. The paper is not meant to be rocket science, nor a peer
reviewed journal article. Just a collection of perspectives gathered in the last few
months during the CCG work towards authorisation, as well as a number of
observations of PPE from the last few years in the NHS.

It is set out so that you can skip sections, or read through. The first part is about the
Impetus, and then where PPE is now and some of the issues. Sections 4 - 8 highlight
some specific areas related to, and part of PPE, Section 9 sets out things to consider
going forward, and section 10 reflects on what makes PPE effective. Section 11 and 12
raise governance and ethics specifically. Section 13 through to section 16 offer
websites, tools resources, models, and references. Appendix 1 suggests some
diagnostic questions to ask/use to support the CCG towards authorisation, and
Appendix 2 outlines the new Patient Experience Framework.

2. The Impetus - why bother with PPE?

If we look at the impetus of PPE in relation to outcomes, the Public Health Outcomes
Framework (2012) concentrates on two high level outcomes to be achieved across the
public health system:
• increased healthy life expectancy - not only how long people live but how well they
life at all stages of life
• reduced differences in life expectancy and health life expectancy between
communities- reducing health inequalities between people, communities and areas.
The Public Health Outcomes Framework state ‘using a measure of both life expectancy
and health life expectancy will enable the use of the most reliable information available
to understand the nature of health inequalities both within areas and between areas’.
These outcomes can only be achieved through working together with patients, the
public, carers, and all of those involved in the delivery of healthcare.

Across much of the world participation is on the rise. In many economically developed
countries, there is citizen participation on various levels - from involvement in decision
making in individual episodes of care to public participation in policy-making processes
and this is now formally mandated by policy. ‘Participation is seen as a means of both


reconnecting disengaged publics with the decision-making process in an era of
‘democratic deficit’ (Pratchett 1999), and improving the quality of those decisions by
taking account of a greater breadth of views, and creating greater understanding of the
needs and wishes of the recipients of public services. ‘ (Martin 2009)

The current NHS policy context includes: the NHS Outcomes Framework; the NHS
commissioning Framework; Information Strategy and choice consultation; Healthy
Lives, Healthy People, the NHS Constitution, Section 242 - the Statutory duty to
involve, Liberating the NHS - the White Paper and legislative framework ‘nothing about
me without me’. The NHS Act 2006 places a statutory duty on all NHS organisations to
involve patients and their representatives in decisions about services. Under the Health
Bill’s proposals, all new commissioners are expected to have an approach to
engagement in place before achieving authorisation by the NHS Commissioning Board.
The NHS Constitution (‘The NHS belongs to us all’) sets out seven key principles that
guide the NHS in all it does:
• The NHS provides a comprehensive service, available to all.
• Access to NHS services is based on clinical need, not an individual’s ability to pay.
• The NHS aspires to the highest standards of excellence and professionalism in the
provision of high-quality care that is safe, effective and focused on the patient
experience.
• NHS services must reflect the needs and preferences of patients, their families and
their carers.
• The NHS works across organisational boundaries and in partnership with other
organisations in the interest of patients, local communities and the wider population.
• The NHS is committed to providing best value for taxpayers’ money and the most
cost- effective, fair and sustainable use of finite resources.
• The NHS is accountable to the public, communities and patients that it serves.
The NHS Constitution also states that good governance is important:

• to patients because they depend on the quality of the judgements that CCGs make;
• to the public as it will give them confidence that the best decisions are taken for the
right reasons, that the quality of healthcare services is protected and that public
money is being spent wisely; and
• to clinicians because it supports them to make the best possible decisions, reduces
the likelihood of things going wrong and protects them in the event that things do go
wrong.
and, that good governance means focusing on the organisation’s purpose and on
outcomes for citizens and service users:

• Being clear about purpose and intended outcomes for citizens and service users
• Making sure that patients receive a high quality service
• Making sure that taxpayers receive value for money
The constitutions that CCGs develop are asked to:

• Identify how the CCG will involve patients and the public in their commissioning
decisions;
• Identify how the CCG will ensure the full range of health and care professionals as
well as patients and their representatives are involved in the design of services;
• Identify how the CCG, working with the Local Authority, will promote partnership
working and play a full part as a member of the Health and Wellbeing Boards;


• Shape the culture, behaviours and relationships in their area, and put in place
proposed structures and systems to safeguard transparency and good governance;

Why is transparency important for public accountability? CCGs not only need good
governance to ensure that they are making decisions in the right way to secure the best
possible services for the local community, they must also ensure everything is done in
an open and transparent way in order to demonstrate to all those to whom they
account, and in particular the public, that this is the case.

The NHS Future Forum emphasised these points in its report on patient involvement
and public accountability:

“In a democratic country, with taxpayer funded public services, public accountability is
vital to secure quality, integrity, value for money and public conﬁdence. There has to be
good governance at every level of the system, in every organisation dealing with
taxpayers’ money, and amongst those individuals accountable within those
organisations.”

As statutory NHS bodies, CCGs will be required to promote transparency at all times
by:

• ensuring early engagement on proposed commissioning plans with patients and the
public, Health and Wellbeing Boards, current and potential providers and clinical
networks;
• setting out clearly in the CCG’s constitution the way in which decisions will be made;
• holding governing body meetings in public (except where this would not be in the
public interest), holding a public meeting to present the annual report and considering
whether they wish to hold any other meetings in public;

It is increasingly mentioned in policy papers, and articles that creating a responsible
and accountable CCG with good governance will lead to good management, good
performance, good stewardship of public money, good public engagement and our
ultimate goal - good outcomes for patients (NHS Commissioning Board papers 2012).
‘Too often people who use public services are viewed as individuals with a set of
problems that need to be solved. This perspective means that public services have
often found it impossible to build and sustain the social networks of people who use
these services.’ In Morris & Gilchrist’s (2011) early recommendations ‘commissioners of
public services for example GP consortia/local authorities in charge of public health
spending should specify social network related outcomes as well as more service
speciﬁc outcomes. Morris & Gilchrist also cite that ‘commissioners should ensure that
public services do not damage the networks of service users or reinforce isolation or
loneliness. Instead public services should help to sustain and grow these networks’.
And, ‘commissioners of public services should protect and utilise the positive assets
that currently exist... not just buildings, but also assets of associations’. ‘Clinical
commissioning groups will need to look beyond their practice lists in order to engage
whole populations’ (NHS Confederation 2011)’

The RCGP (2011) cites the business case for PPI - ‘users of the service and their carers
are most likely to identify safety failings in services and systems.’ (RCGP 2011:3)
and that:


• ‘CCGs will on occasions find themselves faced with difficult decisions around
decommissioning specific services. By adopting an approach that involves patients
and the public from the outset, is more likely to lead to an acceptable outcome, with
the reasons for the decision both recognise and understood’ RCGP 2011:3)
and,
• ‘patient involvement is crucial in fully understanding the best way to redesign
pathways of care which meet the needs of patients... involving users in redesigning
services will help to ensure a more effective outcome... ...seeing these experiences in
the patients shoes’(RCGP 2011:3)

Furthermore:
• ‘First, patients must be at the heart of everything that we do, not just as beneficiaries
of care, but as participants in its design. We must see the NHS through their eyes -
their experience, their outcomes - and make delivering what they want a shared
experience and responsibility’ Andrew Lansley (NHS Institute for Innovation &
Improvement 2011)
• ‘the public voice can help secure improved outcomes’ (NHS Institute for Innovation
and Improvement 2011)
• ‘CCGs will have to account to the patients and population they serve as well as being
accountable to the NHS Commissioning Board. This will require a comprehensive and
effective patient and public engagement strategy with systems and processes to
assure the governing body that this is taking place throughout the organisation. They
will need to play a full role on their local Health and Wellbeing Boards including co-
operating, in preparing joint strategic needs assessments, and agreeing a joint Health
and Wellbeing Strategy.’ (NHS Commissioning Board 2012)

To understand the ‘why bother’ we need to understand the potential outcomes of PPE -
the ‘what happens if we develop and enable PPE?’ The outcomes of PPE are often
cited as - ‘effective PPE can lead to more patient-centred care, a greater sense of
ownership among patients and moderated demand for healthcare resources.’ (NHS
Confederation 2011), and, ‘I can think of no decision that has not been enriched and
improved by patient engagement.’ (Homa 2011) ‘In Nottingham we are dedicated to
creating more opportunities for patients and carers to both fulfill a more active role in
their own care and also to share with us their ideas as to how we can improve our
services.’ Benefits often cited for having effective PPE include improved healthcare,
better informed access to care, clarity of understanding of rights and responsibilities,
ability to influence service delivery and future service provision, and ability to influence
commissioning decisions. ‘There is clear evidence that PPI can make real, constructive
changes to the provision of services, aiding the responsiveness of practices and
providing services that truly reflect what patients want and need. PPI also plays a key
role in encouraging healthier communities, through the provision of information, advice
and support to help local people lead healthier lives.’ (BMA 2011).

The quotes from policy papers are endless in their support to commit to and develop
PPE to form a regular and systematic way of working in and around the NHS. But how
much of this is rhetoric? What is the reality? Jeremy Taylor (National Voices, 2012) cites
how often, PPE is mentioned in policy documents for example ‘we will put patients at
the heart of the NHS, through an information revolution and greater choice and control’,
and, ‘shared decision making will become the norm’, and, ‘no decision about me
without me’. He also states ‘These words early on in the white paper ‘equity and


excellence’ under the heading ‘putting patients and public first’ simultaneously sum up
the White Paper’s fine intentions and muddled thinking about patients’. We know that
Patient Organisations and patients themselves welcome the rhetoric, but are aware that
such promises have been made before and that there is a continuing gap between the
words and policy statements, and the reality.

Where is the patient, and public perspective on the ‘why bother’? why does it matter to
them? ‘Ask any user of services what matters to them and they will have an
opinion’ (Gilbert Inhealth 2011) What are the things that matter to patients and carers?
‘getting better, feeling better (outcomes of care), getting the right care from the right
people (clinical quality), being treated as a human being (humanity of care), information,
having a say (shared decision making), being supported, support for carers, relatives,
safe clean comfortable environment (environment of care) (Gilbert Inhealth 2011) - this
includes the way care takes place e.g. ‘not being passed from pillar to post (continuity).
In addition:
• ‘the aspects of care correlating most closely with good patient experience are
relational. Patients want to be listened to, to get good explanations from
professionals, to have their questions answered, to share in decisions, and to be
treated with empathy and compassion’ (National Voices 2011)
• ‘The quality of care is a factor of the quality of the interactions between people who
use services and people who provide them. thus, transforming this dynamic is a lever
for improving quality’ (Health Foundation 2011(3)
• ‘people understand there are resource limitations, and indeed are often self-limiting in
the use they make of services and professionals’ time. But they want to know clearly
what their entitlements are (not just to care but to support and finance) and what
costs they might incur, at any key point on their journey’ (National Voices 2011)
• ‘the essence of sustainable and meaningful transformation is the preparedness to
seek to see what patients, carers and staff see and experience every day’...‘some of
our most revealing and refreshing insights have also come from when our staff put
themselves in the position of patients and begin to truly appreciate what it feels
like’ (Homa 2011)
• ‘at a recent NHS Confederation roundtable on engagement, participants said
significant commitment to and enthusiasm for it already existed within many
CCGs’ (Stout 2011).

What of the benefits for doctors? For doctors PPE potentially offers a ‘greater
understanding of what their patients want so they can focus on what matters, and on
improved reputation through recognition that patients have a positive experience, being
the patients choice for care, delivering NHS values, enabling public accountability, and
also for the efficient use of resources’ (BMA June 2011). There are also benefits for the
NHS which include ‘strengthening public confidence in the NHS, and to society, when
people are involved in and can influence decisions which directly affect their lives, their
self esteem and self confidence increases, this in turn improves health and well being’.
(BMA June 2011). CCGs are ‘dependent on the unique role of general practice in
connecting and acting as the intermediary for all the care patients receive. General
practice connects patients with specialists, and it connects patients, carers, and their
families with the broad range of support they need from both within the NHS and social
care, most importantly, as trusted local community leaders, general practitioners have
the ability to give a voice to the population of patients and communities they serve (DH
2011). The GP Patient Survey states that 88 per cent of their patients rate their overall


experience with their GP practice as good; 93% of patients have conﬁdence and trust
in the last GP they saw. DH (2011)

3. Where is PPE now?

In order to move forward we need to understand where we are, what we have learnt,
and what then might be the next steps.

There is in many parts of the NHS, and in CCGs, already a baseline or foundation of
PPE whether through PALS, untoward incidents and complaints reporting, patient
participation groups, surveys, local patient groups, the use of technology such as
kiosks, and the internet, a mass of ﬂiers, information packs, and a range of educational
programmes including those building self management. In many cases there is also
evidence and good practice of engagement through service reviews, service
improvement, and service disinvestment.

Since PPE became a much needed addition to the management toolkit in the NHS
(perhaps around 10 years ago) there is now a proliferation of PPE tools, ideas,
approaches, papers, processes, and techniques on offer, many of which have been
tried and tested, and the learning has been used to improve the way PPE is undertaken
in and around the NHS. There is still evidence in places of ‘tick box’ approaches, and
paying ‘lip service’ to developing real relationships, and true engagement. At the other
end of the spectrum, there are also some examples where patient empowerment,
patient led innovation, ‘patients as leaders’ (Gilbert Inhealth 2011) and more creative,
and deeper relational and cultural changes have been made. Further on in this paper
some of these practices and case studies are shared and discussed. There are also a
vast amount of guidance, papers, many now CCG related, rife with ‘how to guides’ and
‘best practice’, and almost a cottage industry of organisations, consultancies,
educational establishments, and think tanks producing papers, ideals, and principles
about PPE. There is certainly no lack of ideas, ‘best practice’ tools, techniques,
ladders, diagrams, and places to go to seek guidance, or contacts. The NHS is also
great at ‘wordsmithing’ and there is no lack of words written into policies, on
organisational websites etc about PPE. The NHS more broadly, and locally has over the
years implemented many PPE infrastructures, processes, approaches and policies, and
some of these are already active processes continuing to be used, or being developed
by CCGs. There is a legacy and some PPE ‘assets’ to build upon, as well as the
passion and commitment for PPE by some too. So why if we have this proliferation of
resource have we not simply taken EPP practice into CCGs, or that PPE is NHS the
‘normal’ way the NHS does business? and why do we still have tick box or a paucity of
true practice in some areas? There are a number of reasons, some of which are
discussed below.

a. New context old legacies - particularly in economic terms

PPE really got started in the NHS in times of plenty, budgets, funds for service
developments, and enabling patient choice came within a policy and economic time of
plenty of resources. Given we are now in a climate fewer resources, and needing to do
‘more with less’ so the way we engage not just with patients and the public, but with
our all our ‘stakeholders’ and staff, service delivery teams, GP practices, needs a
refresh. It needs a new clarity of expectations for all concerned based on what is


possible given the climate and context now. It needs a re-imprinting recognising the
old momentums of resource rich that are still at play, even down to the language we use
in PPE, or in the way we describe services and what is actually on offer/possible. We
also know that there just isn’t enough resource or funding to go around the whole of our
population, particularly if the health and wellbeing of the population gets worse and
demand increases. ‘in the next five years demand for healthcare will increase by around
20% mainly for long term conditions, yet over the same period resources will increase
by only around 1%’ (Goodwin 2012), and people aged 65+ will account for 23% of the
population. ‘Addressing this context has to mean a dramatic drop in demand for
hospital emergency care and better managed primary and self-care’ (Goodwin 2012),
The NHS will need to ‘develop significantly better outcomes for the same resource‘
whilst pursuing innovative change across health, social care, including private and third
sectors, and balance finance, quality and safety all at once ‘more management less
leadership’ (Goodwin 2012). Some of the PPE will be about disinvestment, as well as
supporting self care and self management.

b. Clarity around the levels of PPE - collective and individual

‘Patients and public are two different categories but often lumped together - I can touch
and feel patients but the public is an intellectual abstraction’ (Jeremy Taylor, 2012). ‘The
literature on patient involvement in health care distinguishes between participation in
policy, service planning and evaluation on the one hand, and individual-level
participation in personal healthcare on the other’ (Sinding et al 2011). In the day to day
business of any CCG, there will be PPE on both collective and individual levels. In GP
practices there will be the continuous opportunity for realtime feedback which can
support increased responsiveness, and support quality and an ongoing momentum in
service improvement. It also demonstrates commitment to service user satisfaction and
public opinion. Patient involvement at a care practice level can carry many promises; it
is a key to ‘getting the best health care’ and, it assures the patient an easier passage
through care, and more effective communication with health professionals and informed
(presumably better treatment choices). In the overall business of the CCG, in its
commissioning and planning cycles, and, in resource allocation, as well as the
development of new services, and the disinvestment of services, as well as the way the
CCG ‘runs’, there is an ongoing need for PPE embedded into the CCG systems, and
ways of working, rather than as an add on or tick box aspect to the business of the
CCG. This includes the governance (mentioned below) aspect of running a CCG, as
well as clinical audit. While it may seem obvious there are many different processes
and tools that support PPE individually and collectively, and it is an important reminder
as to the scale, purpose and focus of PPE as obviously different tools or approaches
may be needed for collective, or individual engagement and relationships. Whilst many
CCGs, and certainly GP practices have good practice, and pockets of PPE that works
well, it is often not systematic, or consistent across the CCG.

c. The language and meanings - of PPE

One of the most common things that seems to get in the way of PPE is around
language and meanings - the actual language, jargon and words used for PPE, and the
meanings or mixed meanings behind PPE and the many variations in language and
expression about what PPE is. This paper has been written using PPE as the consistent
language, although as yet it has not clarified what PPE actually is.


‘There are tensions both in the ideas of participation held by policymakers, and in the
ways in which participation is realized by members of the public and state officials,
managers and professionals which arise from different, even conflicting ideas about the
purpose of participation, the nature of ‘expert’ and ‘lay’ knowledge and the
relationships between professional providers of services and the public they serve
(Martin 2009). ‘The anticipation of active citizens, self-governing communities or
reflexive public participants in policy does not necessarily precipitate the emergency of
such beings in practice’ (Martin 2009). ‘Power differentials between public participants
and those within public-service organisations responsible for engaging with them mean
that the terms of reference of participation become rather constrained’ (Martin 2009). It
is not just related to the meanings of participation, or engagement, but around all
aspects from notions of communication, information, involvement, collective, or
individually, to the many acronyms that are used such as PPE, PPI, EPP, PLI and the
many ‘co’s that are used to prefix many words such as co-production, co-development,
co-design, co-creation, co-operation, to the extent that ‘co’ has become the new
‘black’, the new fashionable term for the season so to speak. When we stick the prefix
‘co’ onto something what does that actually mean, or does it engender a truer way of
engaging or empowering those we are building relationships with? Was it ever thus?
the NHS has a way of using new jargon, new terminology, new language for every
policy change, and, whilst many can be heard to whisper the new terms, or use the key
words for the current context, there is often a lack of shared understanding of those
terms whether they be ‘modernisation’, or service improvement, or service quality, or
even balancing the books, or patient safety. Too often assumptions creep in about
what we are all talking about, and a muddle then occurs. ‘The slow escalation of
involvement is in part because of the myriad ways in which it is conceptualised and
discussed. Thus we conclude that one of the greatest barriers to truly integrating
patient involvement into health services policy and research is the conceptual muddle
with which involvement is articulated, understood and actioned e.g. its relevance to
clinical practice, clinicians need to be supported to seek clarity in the use and
operationalisation of involvement if the agenda is to be truly adopted and strengthened
(Forbat, Hubbard, Kearney 2008).

We use the terms communicating, informing, involving, engaging, participating,
empowering, leading interchangeably. ‘A range of ways of conceptualising involvement
are used interchangeably within policy and practice without due recognition of the very
different meanings and implications of public consultation, patient involvement in
treatment decision-making and patient /carer involvement in service design and
development (Forbat, Hubbard & Kearney 1999). ‘Wooly and imprecise language
creates three kinds of risk. The first is the risk of false consensus, people think they are
agreeing, when in fact they mean different things by the same worlds... the second is
confusion... e.g. what exactly is putting patients first? the third is alienation, jargon like
patient empowerment or PPI’ (Jeremy Taylor 2012). Whilst this paper doesn’t begin to
unpick all of this, and to create or offer true meaning, or true definitions of the terms
and the language, in the next few paragraphs there are descriptions of some of the
potential meanings or terms.

There is a ‘spectrum of behaviours on a continuum (NHS Institute for Innovation and
Improvement) - from informing (e.g. patients knowing what services are available and


where to access); feedback (e.g. experience measures collected, analysed and
improvements made as a result, and this insight is used in designing and assessing
services); engagement (e.g. engagement in commissioning decisions, procurement,
consultation as well as shared decision making whereby patients and carers are
supported to engage in their own health care); co-design (e.g. effectively involving
patients/family/public in redesigning care processes as equal and active partners);
partnership (e.g. people actually contributing alongside professionals such as citizen led
services).
Engagement can be described as: ‘patient and public engagement is the active
participation of patients, carers, community representatives, community groups and the
public in how services are planned, delivered and evaluated. it is broader and deeper
than traditional consultation. It involves the ongoing process of developing and
sustaining constructive relationships, building strong, active partnerships and holding a
meaningful dialogue with stakeholders’ (NHS Institute for Innovation and Improvement).

Patient-led can be described as ‘to move from a service that does things to and for its
patients to one which is patient-led where the service works with patients to support
them with their health needs’ (Department of Health 2005)

PLI (patient led innovation) can be described as it involving the ‘innovating of existing
products and services to meet the needs of patients and carers, by engaging with
patients throughout an innovation-led design process’ (cpd4healthinnovation, School of
Healthcare, Faculty of medicine and healthcare, Leeds University).

‘Patient satisfaction is the simplest interpretation and application of involvement and
implies no action on the part of services to adjust practice, nor any indication of
partnership or collaboration between patient and professional. ‘Forbat, Hubbard &
Kearney 1999

Involvement can include - ‘where involvement is constructed as part of day-to-day
practice, the model of patient as partner is invoked, with experiential knowledge as a
driver - ‘the notion that involvement should be embedded into all practitioners’ roles is a
core message in policy. however this is predicated on an understanding of what
involvement is’ (Forbat, Hubbard & Kearney 1999).

Consumer engagement could be described as - ‘Consumer engagement at an
individual level - patient carer involvement in decision making about their own care and
treatment, or involvement in care practice, and includes patient centred care’ (Tere
Dawson, www.healthissuescentre.org.au).

Co-production ‘is about individuals, communities and organisations having the skills,
knowledge and ability to work together, create opportunities an solve problems. The
central idea in co-production is that people who use services are hidden resources, not
drains on the system, and that no service that ignores this resource can be
efﬁcient’ (RCGP 2011:9). Elke Lofﬂer (Box 2 page 5) describes ‘distinctive principles of
co-production
• co-production conceives of service users as active asset-holders than passive
consumers


• co-production promotes collaborative rather than paternalistic relationships between
staff and service users
• co-production puts the focus on the delivery of outcomes rather than just ‘services’
• co-production may be substitutive (replacing local government inputs and inputs from
users/communities) or additive (adding more user community inputs to professional
inputs or introducing professional support to previous individual self-help or
community self-organising)
• ‘there is a lot of evidence which suggests that the term co-production’ should be
substituted by terms which are already being used in local government and which
local government ﬁnds it more natural to use’

Citizenship - ‘confers not only rights but also responsibilities for us to all be active
citizens, taking care of our health, minimising unnecessary demands on the
NHS’(Jeremy Taylor 2012).

Patients as partners - ‘shared decision making - shared means equal, equalising the
power imbalance, doing medicine in a different way’ (Jeremy Taylor 2012)’

Shared decision making - ‘shared decision making - improving outcomes by changing
relationships ‘about the relationship between clinicians and patients and changing the
consultation experience so that both parties share knowledge, and expertise as equal
partners and reach informed decisions about care and treatment, including the choice
to manage their health themselves through self-management’ it requires a radical
redesign of health care services, and changes to cultural perceptions of the public and
retraining of clinicians’ (Health Foundation 2011). ‘Shared decision making is a process
in which clinicians and patients work together to select tests, treatments, management
or support packages, based on clinical evidence and the patients informed preferences.
It involves the provision of evidence-based information about options, outcomes and
uncertainties together with decision support counseling and a system for recording and
implementing patients’ informed preferences.’ (Coulter and Collins 2011)

Patients as leaders - ‘The Centre for Patient Leadership will provide patients with the
knowledge, skills and behaviours to become true agents of change. It will enable
patients and carers to become effective and inﬂuential leaders in improving quality and
p ro m o t i n g h e a l t h ’ ( I n h e a l t h , D a v i d G i l b e r t a n d c o l l e a g u e s - h t t p : / /
www.inhealthassociates.co.uk/index.php/centre-patient-leadership/ )

People-powered public services - NESTA (2009) - genuinely empowering patients and
clinicians to unleash innovative and cost effective ways of doing things, which takes
advantage of the ingenuity and strength of existing communities... with innovation
giving genuine power to front line staff, patients and the public....patient-centred
redesign and prevention - properly understanding people’s needs helps design better
services. - taking more account of the users of services, evaluating and redesigning
services based on the input and participation of users, working closely with frontline
staff.

4. It’s all about people & relationships

Whatever meaning, or language is used, there is a common denominator for instance
with PPE, co-production, shared decision making, patients as partners,

people policy processes

33% 33%

33%

communications, stakeholders and stakeholder development, clinical and workforce
engagement, organisational culture, values and behaviours, leadership, governance, -
the common connection is relationships amongst people. Many organisations
particularly when going through large scale change overly focus on policy (or structure),
and processes, rather equally focusing on people, processes/relationships and policy in
equal amounts (Fig 1 below) Policy can support the impetus for instance for PPE,
processes can enable PPE to take place, people and relationships are the nub of it all.
Making it about people is the bottom line, without the relationships or the behavioural
aspect nothing actually gets done, or the quality by which it is undertaken is away from
the purpose, particularly given the NHS, and CCGs are service organisations. Service
organisations, e.g. those in the public sector invest in consumer relationships, in
customer service, and in people, those who work for them, and those they work for/
serve.
Fig 1

Its about making it people focused, and when people work together, or require services
from one another, it is about relationships. People and relationship focused
organisations. We spend very little time developing metrics, outputs, or even outcomes
based on the development of people and the development and quality of relationships.
Even the inputs for building relationships, and working with people can be mechanistic
and not people focused. If we put metrics, or markers, or standards, or outputs/
outcomes based on the quality of relationships that may help to support a shift in the
emphasis placed on relationships or relationally based ways of operating.

5. Its not just about Patients and the Public

The NHS Constitution pledges to staff (section 3a staff - your rights and responsibilties)
‘to engage staff in decisions that affect them and the services they provide, individually,
through representative organisations and through local partnership working
arrangements. All staff will be empowered to put forward ways to deliver better and
safer services for patients and their families’ and ‘to provide support and opportunities
for staff to maintain their health, well-being and safety’. Staff engagement means
different things to different people at different times in different places. Engaging all who
work in the CCG will form part of the way forward for CCG’s. ‘A great CCG will have
signiﬁcant engagement from its constituent practices as well as wide spread
involvement of all other clinical colleagues, clinicians providing health services locally
including secondary care, community and mental health, those providing services to
people with learning disabilities, public health experts as well as social care colleagues.
it will communicate a clear vision of the improvements it is seeking to make in the
health of the locality including population health’. If a ‘clinical perspective in everything
the CCG does, with quality at its heart and an outcomes focus are part of CCG
authorisation (Domain 1:a strong clinical and multi-professional focus which brings real
added value) CCG’s will have a ‘responsibility to ensure that relevant health and care
professionals are involved in the design of services and that patients and the public are
actively involved in the commissioning arrangements’ (NHS Commissioning Board
2012). But recognising historically (this may not be the case now) that ‘getting GPs
engaged in quality improvement can be a challenge, they may not respond well to


improvement models or management consultancy-style improvements, and, peer to
peer approaches are a good way to engage GPs and allow learning to spread out to a
wider range of people.’ (Tongue 2011)

More generally, in terms of engaging everyone who works within the CCG there is a
track record of staff engagement in the NHS, although variable in different
organisations. GP practices have the benefit of often being small practices where most
staff see each other regularly and informally they can feel part of the team, and well-
informed. ‘NHS Annual staff surveys have shown that relatively few staff in the NHS feel
they are involved in important decisions, consulted about changes that affect them,
encouraged to suggest ideas for improving services, or feel their organisation values
their work’ (Mooney 2011). The CIPD in its survey (2011-12) of all sectors and staff
engagement found that 50% of respondents feel fully or fairly well informed about what
is happening within their organisations but that satisfaction with the opportunity to feed
upwards remains fairly negative’. In addition when looking at whether managers consult
employees about important decisions ‘this is very low (-31%), the degree to which
employees think managers consult with them has fallen to another record low’.
Research shows that where staff engagement scores are high, scores are significantly
higher for patient satisfaction and lower for standardised hospital mortality rates.
Research also shows that where staff engagement scores are high, scores are also
significantly higher for (good) staff health and well-being and lower for staff
absenteeism. It is worth the effort in engaging all staff. High levels of staff engagement
can lead to increased financial efficiencies as a result of a number of factors’ (NHS
Employers) and, ‘in organisations that respect staff as an asset there is much more
dialogue and transparency, and bad behaviours - whether by managers or staff - do not
go unchallenged’ (Stevens 2012), ‘engagement creates a mutually beneficial long-term
relationship between employees and employers. it is more enduring than satisfaction
because it represents an emotional connection with the organisation that is likely to last
through difficult times as well as good (Savitt 2011).

‘For organisations hoping to raise employee engagement the obvious starting point is to
measure existing levels of engagement, and to do that they need to know what they are
measuring and despite all the talk of engagement there is little agreement about what
the term (employee engagement) actually means’. ‘It’s about attitudes and behaviour
and relationships at work and positiveness and how you get that, and it happens to be
called employee engagement at the moment’ (Purcell in Arkin 2011). At first instead of
trying to get employees to support organisational goals and values it could make more
sense for employers to focus first on making sure employees are engaged with their
(daily) work’, ‘and having managers who facilitate and empower rather than control or
restrict staff’ (Truss in Arkin 2011). ‘Clinicians need to be equipped and motivated to
support people to use information and share in decision making about their health and
healthcare choices, this is not just about adding a new set of clinical skills to the
curricula, but about a fundamental change in what it means to be a health
professional’ (Health Foundation 2011:5). An engaged member of the team (whether a
GP, or practice nurse, or practice manager for instance) will be better placed to engage
with those they serve (patients, carers, the public), as they will already have an
engaging relationship with their practice or organisation, and understand what it feels
like to be engaged.

6. Other stakeholders and relationships


As well as engaging with patients, the public, carers, and the workforce, there are many
other stakeholder and partnership relationships that CCGs and GP practices are
engaging with, and developing new, or refreshing old relationships, all of whom provide
potential support, and collaboration in the work of the CCG such as the Health and
Wellbeing boards and local Healthwatch. Local authorities can offer; a democratic input
and involvement, long-term investment in combating the social and economic
determinants of health, extensive experience of commissioning a range of health related
programmes, expertise in processes of consultation and engagement. Local police, fire,
educational services will also have a lot of local experience in engaging the public. The
Third sector e.g. relevant special interest groups, and voluntary organisations and
charitable groups, will also have local networks, and, most local areas have an umbrella
organisation that is in touch with the majority of local third sector groups and offers a
simple way into collaborative arrangements. GP practices will already have a lot of
existing arrangements and relationships that they can refresh and build on.

7. Information

It is worth mentioning information as this in itself has many factors to consider in
relation to engaging patients and the public, as well as the potential to inform,
education, and enable shared decision making. From an organisational perspective,
there is no lack of producing mountains of information leaflets, fliers, websites etc. and,
whilst there is some evidence leaflets and letters for instance can improve peoples
knowledge and help them feel more confident there is sparse evidence that verbal or
written information alone have a significant impact on shared decision making, so a
range of information sources are useful.

Some other potential problems with using information to inform or engage are outlined
below, many of which are from a useful publication by Ellins & McIver 2009:
• ‘There is a wealth of information available in the form of information leaflets, decision
aids and on-line information, however without the support and encouragement to use
this information the potential benefit will be limited’ (Health Foundation 2011)
• ‘Information is only as effective as the support that accompanies it, this means it is
essential for clinicians to have the skills and aptitude to encourage patients to use
information’.
• ‘if patients and the public are going to be empowered to use information about quality
of primary care then the content should be relevant and designed to suit different
needs; the format must be accessible to people with different literacy levels; and
different modes of dissemination should be provided to enable everyone to make use
of the information’ (Ellins & McIver 2009)
• ‘information materials are frequently designed with a ‘standard’ user in mind, but the
public is not a uniform group’ (Ellins & Mciver 2009)
• ‘different groups of people value different types of information but the literature
suggests that the majority of patients will be interested in both technical and
interpersonal aspects of care and they will want ‘stories’ and ‘data’ as well as
contextual information about their local health service including staff.’ (Ellins & McIver
2009)
• ‘information alone rarely changes behaviour once it has become a habit. An approach
that encourages people to think about issues themselves and generate their own


arguments for why it may be useful to change GP practice or choose to use health
services differently would be more effective’ (Ellins & McIver 2009)
• ‘the ability of patients to make informed decisions about their health and health care
is critically dependent on information’ (Ellins &McIver 2009)
• ‘Ellins & McIver (2009) suggest from review carried out by Marshall and colleagues
that research demonstrated a number of reasons why health service users did not use
information about the quality of health care, these were:
• difﬁcult in understanding the information
• disinterest in the nature of the information available
• lack of trust in the data
• problems with timely access to the information
• lack of choice
• consumers rating anecdotal evidence from family and friends more highly
than empirical evidence’
• ‘generally evaluative studies report high levels of user satisfaction with online health
information’ (Coulter and Ellins 2006)

In going forward, ‘how can we (continue) to ensure information is available that enables
people to take more control of their own care and enable shared decision
making?’ (Health Foundation 2011). ‘There should be a clear and agreed purpose for
sharing information with people, and it must be part of a wider strategy to change the
patient/clinician relationship to enable people to take an active role in their own
care’ (Health foundation 2011:4). ‘Health professionals must be actively involved in the
development of information systems and requirements in order for information to
support improvements in care’ (Health Foundation 2011:5). Being actively involved in
the design of information solutions will encourage buy-in from the clinical and other
workforce/teams working in the CCGs with support not only to measure and record
data, also how to use information to improve quality, and improve relationships with
patients and the public.

Equally, the way CCGs and GP practices deal with, collect, collate, analyse, synthesis
patient generated information such as complaints is a vital resource, so information is a
two way thing, it is not just about informing patients and the public, but about them
equally informing CCGs and GPs of their experiences and feedback.

8. The Move Towards Self care/Self Management

As part of the overall Public Health Outcomes quoted at the beginning of this paper,
and given that in the next ﬁve years ‘demand for healthcare will increase by around
20% mainly for long-term conditions, yet over the same period resources will increase
by only 1%’ (Goodwin 2012), and given that people aged 65+ will account for 23% of
the population ‘addressing this context has to mean a dramatic drop in demand for
hospital emergency care and better managed primary-and self care’ (Goodwin 2012).
‘There is a growing - though not yet universal - understanding of just how much health
care depends on the co-operation of patients. As budgets rise in the future,
preventative health care is going to rise in importance and that means a different
relationship between patients and professionals (Burns, Boyle and Krogh 2002:2).
Equally, ‘we know that people with long term conditions can improve their health and
have a better quality of life by taking a more active role in managing their own
condition’ (Health Foundation Snapshot Co Creating Health 2011). There is policy


support towards self management including ‘No decision about me with out me’ (NHS
White Paper Equity and Excellence:liberating the NHS) which sets out that people with
long term conditions should be engaged in making shared decisions about their own
care.

Why bother? ‘Shared decision making is viewed as an ethical imperative by the
professional regulatory bodies which expect clinicians to work in partnership with
patients, informing and involving them whenever possible. It is important for patients
because they want to be more involved than they currently are in making decisions
about their own heath and health care’(Coulter & Collins 2011). ‘International evidence
shows that involving people in their care and treatment improves their health outcomes,
boosts their satisfaction with services received, and increases not just their knowledge
and understanding of their health status but also their adherence to a chosen health
treatment. (NHS Institute for innovation and improvement 2011) ‘There is also
compelling evidence that patents who are active participants in managing their health
and healthcare have better outcomes than patients who are passive recipients of care.
Shared decision making also important for commissioners because it reduced
unwarranted variation in clinical practice’.

None of this can occur without making changes to the way healthcare is delivered,
including enabling more information sharing and educational resources, and
opportunities for learning self management for patients whether it is locally in GP
practices, or in other parts of the community such as larger establishments, hospitals,
pharmacies, supermarkets. In addition there is evidence that more direct educational
support such as the Expert Patient Programme for patients, and opportunities for
patients to share their experiences and self management skills with one another
supports and enables self management. Healthcare professionals may require support
for a shift towards enabling self management, and a move away from the clinician as
expert:
• ‘No programme for putting ‘patients at the heart’ can be complete with out a serious
effort to beef up support for people to self manage and self care through better
information, education, access to their health records, support, peer support, re-
enablement, home adaptation, Telecare, Telehealth and help back into
employment’ (Jeremy Taylor 2012)
• ‘Information is needed to help people take more control of their care and encourage
them to self manage and act as partners in deciding about their care.’ ‘different
people will require varying approaches to help them take control of their health and
manage their long term conditions’ (Health foundation 2011:8)
• ‘Integrated care must deliver a new deal for people with long term conditions. This
should include support for self management.(Redding 2011)
• ‘By supporting clinicians to shift from being ‘experts who care for and do to’ to
‘enablers who advise and support’ we can increase people’s choice and control. Co-
creating health helps people to move from being passive recipients of care to taking
an active role in their health and care in collaboration with clinicians’ (Health
foundation: snapshot co-creating health 2011)
• ‘What patients and carers want to know about stroke is usually not the same as what
health professionals think they should know’ The Stroke Association (National Voices
2011)
• the consultation between patient and doctor could be organised around the
achievement of a diagnosis, a transaction involving the transfer of knowledge


(symptoms given to doctor by patient; diagnosis given to patient by doctor), another
could be the development of a complex shared understanding; the creation of new
knowledge for both participants, unique to the patient; doctor and patient exploring
together what it means for that person individually in their life to have diabetes and to
live with diabetes etc.
• ‘co-evolution - how can we work out together what might work for our agreed
priorities; coordination - what are our roles in getting this job done? negotiation - how
can we optimise the outcome for each of us given our competing priorities?(p 11 the
health foundation (3) ‘equally making the nature of the consultation explicit for
patients - so patients can prepare’

There has been some confusion about the relationships between shared decision
making self management support and personalised care planning. ‘We argue they are
similar philosophies each requiring that clinicians recognise and respect the patients
role in managing their own health. they also require advanced communication skills and
the use of a number of tools and techniques to support information sharing, risk
communication and deliberation about options. Shared decision making is appropriate
for decisions about whether to: undergo a screening or diagnostic test, undergo a
medical or surgical procedure, participant in a self management education programme,
or psychological intervention, take medication, attempt al lifestyle change. ,which, at its
heart, is the recognition that clinicians and patients bring different but equally important
forms of expertise to the decision-making process’ (Coulter & Collins 2011). ‘Aujoulet,
Hoor and Deccache (2006) found a number of consistent features associated with the
concept of empowerment. One of the most important was that there were two
dimensions to the process. First, there was an inter-personal dimension where
empowerment was seen as a product of provider-patient interaction.’ (in Ellins & McIver
2009) where during communication power was given to the patient,’ second there was
an ‘intra-personal dimension where empowerment was a process of personal
transformation. Power was created within someone or latent power was released from
within the self’ (Ellins & McIver 2009). Shared decision making ‘as a philosophy of care
positions patients as equal partners in planning, developing and assessing care to
make sure it is most appropriate for their needs’. It involves putting patients and their
families at the heart of all decisions, drawing on them as assets and experts. It is a
‘term used to describe all aspects of patient involvement in their own health and dare,
including self management support, access to personal health records, personal health
budgets, care planning and decision aids’ (Health foundation 2011:7)On a practical note
what does it include?

• ‘Self -management support can be viewed in two ways:as a portfolio of techniques
and tools that help patients choose healthy behaviours; and a fundamental
transformation of the patient-caregiver relationship in a collaborative partnership’
• ‘giving patients control over their health records can enable patients to take more
control of their health and manage their own care more effectively. however just 50 of
the 6000 UK general practices with the necessary technology are offering patients the
opportunity to access their medical record on line’ (Health foundation 2011:5)
• ‘tools such as books, video and audiotapes, seminars, discussion support groups
merely provide the structure for learning. The content of empowerment is the life
experience of the person using the tools’ (Reste and Anderson 1995:142)


• ‘providing leaflets or guidance for patients to help them plan what they want to cover
during GP consultations such as top tips on how to get the best from our
appointment... or ‘what do I want to discuss’... (Health Foundation 2011:12)
• people want information relevant to their condition, e.g. to help them self manage and
share decisions, information from their healthcare team on their own treatment/care,
and information held in their health record (Health Foundation 2011:23) - ways to do
this include telephone consultations with GPs, email exchanges, testing, online
communication (e.g. Newham University Hospital NHS trust (Health Foundation
2011:24) uses web-based consultations as an alternative to routine follow up
outpatient appointments for people with diabetes - online consultations can be used
where physical examination is not required, group education and Telecare - all
increase convenience, improve access and potentially reduce costs, and whilst these
technologies and approaches have been tested widely they tend not to be
mainstreamed throughout the NHS.
• There is a need to promote approaches and technologies so they be come
mainstream, part of the culture for patients and clinicians, provide access to a number
of approaches so they are normalised, and help clinicians develop skills needed to
support patient use of information that is personalised to the individual
• ‘walking out of a consultation with a ‘contract’ rather than a prescription. We have
found that people are more likely to take action when they have made a commitment
rather than when they have been prescribed action by others.’ Health foundation
2011:12
• ‘self management works’ (Health Foundation May 2011) - a review of more than 550
pieces of high quality research suggests that it is worthwhile to support self
management, in particularly through focusing on behaviour change and supporting
self efficacy....‘self management is not a panacea, and is likely to work best when
implemented as part of wider initiatives to improve care through educating
practitioners, applying best evidence, and using technology, decision aids and
community partnerships effectively’.
• A wide range of initiatives that support self management categorised along a
continuum e.g. passive information provision about health behaviours to technical
topics, and initiatives that more actively seek to support behaviour change and
increase self-efficacy at the other end. different clinical conditions may require
different approaches, some require more technical or clinical education than others,
some more behavioural.

The Co-Creating Health Programme with the Health Foundation has many case studies
on line. They used three development and improvement programmes across the sites
they worked with which included ADP - advanced development programme for
clinicians; helping clinicians to develop the knowledge and skills to support people to
self manage effectively, SMP - self management programme for people with long term
conditions to support people to develop the knowledge and skills they need to manage
their own condition and work in effective partnership with their clinicians, and SIP
service improvement programme supporting people with long term conditions and
healthcare professionals to work together to identify and implement new approaches to
health service delivery that will enable people to take a more active role in their own
health.

9. Things to consider going forward/setting conditions, building on assets


Where do we start? ‘People can get mesmerised by the whizzy events, or technology
etc, but its the day to day behavioural, cultural, and systems stuff that sustains, its
about changing the way we relate to each other, and to those we serve’ (Gilbert Inhealth
2011). Any relational, behavioural, engaging or partnership and stakeholder activities
require organisations and teams to ‘Set the right conditions’ to enable it to happen,
more so than just a ‘tick box’ exercise. It starts at the top (e.g. the culture of the top
team, and the way the organisation, or GP practice is run, the principles upon which
they are founded, and the daily operating principles which everyone works towards, it is
about the way we do things, not the things we do, and for CCTs it is towards
authorisation and beyond and not purely box ticking (NHS does that very well!). Many
CCG’s and GP practices will already have much practice to build on, many examples,
case studies, tools, and techniques that have been used in engaging and involving
patients, the public, the staff/clinicians, and partners and stakeholders. It is useful to
regularly ‘stock take’ on what works, what doesn’t work, what is being learnt about
engaging and involving, self management, shared decision making, information etc, and
which processes in the GP practice, or CCG support engagement, and which hinder
engagement. Sometimes organisational processes and systems are counter intuitive to
engaging. Additionally it is about reviewing what has been written, and what is actually
being practiced/done as we can often have a gap of integrity where what is written is
rhetoric and not actually acted out in reality even if it is perceived to be. One of the
problems with this is that often organisations haven’t agreed a set of simple behavioural
‘markers’ or standards that means they will ‘know’ what engagement, or shared
decision making, or self management practices, or informative ways of working actually
look like in the daily work of their teams. When taking stock it is also key to be honest,
and look at what is working, and what has been learnt about it, validating this with
feedback loops with those engaged, e.g. ask patients, the public, clinicians or staff
what their experience has been, and why things have or have not worked in a certain
way.

Take the time (together - with patients, public, staff, your team, your clinicians/
colleagues, managers to reﬂect upon:
• What is working well, and why? what is not working well and why?
• What methods and techniques of engagement do the patients and public respond to
and why?
• How do we know what is working well and why?
• which things are simple, and effective?
• where can we build from PPE tools or approaches that are already working well?
where do we have great case studies and examples?
• what can we learn from other organisations?
• How much value add are current or potential meetings, committees etc
• how much value add are PPE processes, mechanisms? how do we know if they are
making a difference?
• what are meetings for e.g. to get work done and build relationships? or something
else?
• what do you do well, and build on that and build on the work that others do well e.g.
health watch, and realise you all have a contribution to make, you don’t need to do it
all yourself Healthwatch or other local voluntary organisations for example can help
you (as a CCG or GP practice).
• Does the CCG work in away that it has a PPE ‘lead’ and that’s where responsibility
lies? or is PPE (or relationships) EVERYONE’s business? Too often once there is a


PPE lead every aspect of PPE is laid at their doorstep and this doesn’t build
systematic, consistent PPE processes that are embedded across the practice or
organisation.
• What is the current health check of our own CCG or GP practice relationships with
everyone in & around your organisation? if you are not embodying a relational way of
working yourselves with each other, then, how can you build trust with those you
relate with? how can we inspire all around you that relationships, engaging, informing
etc matter?
• How consistent, coherent, congruent, and embedded is PPE? - are data systems
consistent, compatible? is there a consistent relational, engaging organisational or
team culture, and policies? Do all of your workplace policies and processes such as
induction, job descriptions, inter-professional relationships, CPD (continuous
professional development), decision support technology have an engaging aspect?
do they include how key it is for all who work in the organisation to understand and
build relationships, and engage with one another, as well as patients and the public?
• Does your organisation/team/practice have old legacies, old ways of behaviour that
are outmoded? how can you support breaking old legacies at the same time as
recognising real constraints (e.g. resource, time, practical, accessibility, physical
constraints)
• Are there inconsistencies? how do you spot inconsistencies for example in
expectations, language, approaches?
• Reality check, what is needed to get real in conversations with patients, the public,
and each other? how can we develop a consistent willingness to engage, with clear
and consistent feedback loops, not tentative, and how do we handle amongst
ourselves, and with patients and the public ‘difficult discussions’, so there is
transparency and, no more elephants in the room?

In getting started with PPE, refreshing your PPE approaches, or building new ones,
there is a need to consider what you are trying to achieve, and why from the staff, or
clinician, or managers perspectives, as this will enable participation or motivation to do
PPE. For example the use of different questions, approaches, interests and
perspectives may be required as not every member of staff will have the same level of
interest or need, particularly around engaging patients and the public. For example:
• Practice and middle managers may be interested in what helps to improve outcomes,
outputs, service quality? what new information or communication systems are
needed?
• GPs, clinicians, practice nurses, frontline staff may be interested in how to manage
risks, how to provide the best care, how to provide safe services, how to provide the
best quality they can
• HR managers may be interested in what the implications of PPE for staff? and how do
we bring about a cultural change to the organisation?
• Finance managers may be interested in efficiency issues, can PPE reduce future
investment needs in public services?
• Performance managers may want to assess the outcomes of PPE?
• Chief executives may ask how can PPE be used as an efficiency strategy? Local
councillors may ask how does PPE influence accountability?

In getting started or refreshing your current PPE practices it is important to bear in mind
‘many GP practices are in the enviable position of enjoying long-term relationships with
the patient community served. there is an opportunity to think creatively about how to


use these relationships to engage on wider commissioning matters beyond specific
practice issues’ (NLC 2011). ‘The evidence from previous primary care commissioning
(Smith and Goodwin 2006) is that larger primary care based organisations struggled to
engage practices’ and CCGs need to ensure they are engaged actively with their GP
practices. The RCGP federations toolkit suggests ‘getting practices to come together to
create a shared vision, share ideas, skills, and provide opportunities for informal
networking, as well as education in developing collaborative working ‘NAPC/KPMG) as
a way of learning together, and sharing resources. ‘Engagement work can be
undertaken at a ‘federated level’ across several CCG’s to make it cost effective - as well
as locally, and building from the assets, processes and relationships and engagement
that is already going on in your CCG, and practices.

Not everything needs to be engaged upon. There is a difference between tame and
wicked issues in the daily work of GP practices and CCGs. Be clear when there is a
need for shared decision making/engagement and when not - tame back stage
organisational processes e.g. changing a light bulb, or ordering new pens do not need
engagement. Wicked dilemmas bring people together to solve dilemmas and co-
design solutions. Also consider what is needed back stage, & front stage in the CCGs
and GP practices? what needs to be ‘shared’? ‘Clarity of purpose is also vital - people
will not want to get involved in time consuming process unless they are clear about
what they are setting out to achieve. Given that time, and resource is finite, PPE can
build over time. Take time to consider where to start, or where to refresh, or continue to
build based on what you have learnt, or know. Invest in key strands of patient
engagement e.g. shared decision making in the clinical encounters, self care courses,
effective use of care planning processes rather than trying to engage in everything,
particularly initially. Work to enable local task groups of users, carers, professionals to
lead and work together on improvements. Try and test out, pilot, or use an example that
works well, and build from that, and replicate it else where in the practice or CCG.
Another option is to invest in specific clinical pathways - patient engagement as part of
the service redesign, investment, disinvestment, as well as focusing on the systematic
building of the necessary CCG or GP practice infrastructure e.g. organisational policies,
culture, data systems, and daily working practices. This includes building on already
systematic processes, statutory processes such as building on complaints, serious and
untoward incidents, must dos, and ensuring the data from these is analysed,
synthesised, shared, learnt from.

Using engagement activity in commissioning for CCGs is an imperative, engaging on
strategic planning, procurement and management are three broad activities and,
strategic planning can benefit from whole health economy engagement in determining
priorities for investment/disinvestment. Engaging, bearing in mind the processes
relating to procurement laws - ‘procurement guide for commissioners of NHS-funded
services recommends; ‘to get maximum benefit, engagement should be with both
current and potential providers and take place as part of an ongoing exercise’. Getting
PPE into the management of demand and performance can be challenging, but CCGs,
and GP practices can capture patient experience, undertake complaints analyses, look
at patient mystery shopping etc. Involving patients in clinical audit is another area CCGs
and GP practices can consider, and build upon, in that ‘clinical audit must include
patients. They, as well as clinicians, are the true professionals in illness.’ ‘the doctor
may be highly qualified to diagnose and give treatment, however, only the patients truly
know the pain, physical and psychological and the stress of their illness. the patient’s


voice is so valuable as part of audit’ (Iain Thomas, MINAP representative, Member of
the SW London Cardiac and Stroke Network quoted in HQIP PPE in clinical audit 2009)

As mentioned above, keep an eye on language, and regularly do a language check - are
we clear, do we have a common understanding? so as to create simple language
amongst ourselves and our patients and the public and one that manages expectations
and enables shared understanding, is educational, and names the dilemma, and,
enables a language to talk about it if needs be. ‘Sharing information quickly and easily
requires clear straight forward language. it requires thought, discipline and
experience’ (Wrixon 2011). ‘Making a success of clinical commissioning will involve
exchanging large amounts of information not only between those who are in on the
jargon but also with patients and the public. If clinical commissioning groups are to
communicate effectively they need to ditch jargon in favour of plain speaking.’ (Wrixon
2011) ‘impenetrable documentation obstructs progress. Not only does jargon slow
things down it also provides a space for misunderstanding and reduces transparency’.
Together with language, encourage ‘expectation checks’ amongst clinicians,
commissioners, providers, patients, public, carers, so that there are no
misunderstandings related to expectations whether they be about quality of service,
what is on offer, how it is offered, and how accessible it is etc.

Enabling PPE towards a systematic and consistent foundation requires a deliberate-
ness, a conscious effort with regular reviews to understand what is effective.
‘Engagement requires time and effort so the commitment should not be
underestimated.’ (Stout 2011)

10. Ensuring PPE is effective

A common question asked about PPE is ‘what is good practice? where can we find it?
who is doing best practice PPE? and consideration needs to be made into what exactly
do we mean by ‘best practice’? A key question here is ‘what does PPE mean - for us
locally in context? what is our way? what is best practice in our context? There are
many views and perspectives:

• ensuring participants are actively involved at every stage and kept informed of
progress achieved demonstrating how engagement is influencing service change,
planning and the commissioning cycle etc. Present results and share outcomes, and
regularly evaluate and review your PPE processes for effectiveness
• good engagement would consist of:
• focused on culture and relationships rather than structures or techniques
• integral to all activity
• strategic, clear and co-ordinated, and purposeful, and focused
• open and transparent,
• resourced and supported
• inclusive and flexible and collaborative
• sustainable, and focused on improvement
• To understand best practice it needs markers, standards, and indicators - otherwise
we are comparing ‘apples with cars’.
• Jeremy Taylor, National Voices (2011) suggests - have the NHS Constitution at the
forefront of your mind ‘its our NHS’; recognise that involving people is fundamental;


not a ‘nice to have’; do everything you can to encourage shared decision-making
between clinicians and their patients; be hungry for intelligence on customer insight
and experience; map the needs of different segments of your population; be
participative, value and deploy the expertise and insight of others; see your lay
members as a source of strength and enhanced reputation; embrace your
transparency requirements; you do not have to do this all on your own - good patient
and public involvement is a shared responsibility for all statutory bodies involved in
health and social care, let others help you...’(Taylor 2011)
• ‘practice managers and clinical leaders have a real opportunity to lead the way and
provide real clarity in the new health landscape... and this means without doubt, that
the jargon bug must be eradicated’ (Wrixon 2011)
• moving away from inputs - PPE is riddled with inputs (meetings), and some outputs
(policy or strategy) its time to practice outcome based PPE - health and relational
outcomes, changes in the way we are with one another.
• ‘what will characterise the best clinical commissioning? (Dr. foster intelligence 2011) -
focusing on patients and populations; collaborating and engaging; being transparent;
creating pathways and care packages; paying for outcomes.‘The best commissioners
will recognise a range of key people as experts who can be enlisted to support
effective commissioning, they will build new kinds of relationships with patients and
the local communities establishing themselves as the ‘peoples organisation’ - keep
your responsibility to the population centre stage’
• ‘an effective governing body will make stakeholder engagement a key mechanism for
demonstrating openness, transparency and accountability, one of the challenges
facing CCGs will be the complexity and range of stakeholders they need to engage
with, including patients and the wider public, the ﬁrst task will be to identify these
stakeholders, clearly mapping relationships (NAPC/KPMG).
• CCGs must ensure that individuals to whom the services are being or may be
provided, are involved in commissioning and in any changes to commissioning
arrangements, where these would result in changes to delivery of or access to
services. (CCG guidance towards authorisation)
• Utilising and developing what you already have - mapping and understanding the
range of existing PPE mechanisms locally, and sources of intelligence already and
how these are used, and how effective they are e.g. GPs and practice staff already
have extensive experience of engaging with patients whether in consultations
conversations at reception or through patient participant groups. This includes
checking with local PCTs what they had had in place, and what will happen to these
arrangements during and after the current transition related to PCTs etc.
• CCGs need to show mechanisms for gaining a broad range of views then analysing
and acting on these. It should be evident how the views of individual patients are
translated into commissioning decisions and how the voice of each practice
population will be sought and acted on. CCGs need to promote shared decision-
making with patients about their care’ (DH 2011)
• ‘high quality information empowers people. With poor information they cannot make
effective choices; and without information they have no real choices at
all’ (Department of Health 2004:3)
• ‘failed PPE can pose risks to organisations, and a failed PPE project can damage trust
and lead populations to disengage, treating invitations to join consultation exercises
etc with cynicism.’ (NHS Confederation 2011:2)
• ‘There is evidence that information is far more effective when it is delivered as part of
an education programme’ (Ellins & McIver 2009)


• ‘a lot of wasted resources are going into useless engagement because people lose
track of purpose and don’t think about where the data is going to land and how its
going to be put together’ David Gilbert, Inhealth Associates
• ‘the experiences of some pathfinders which have already made headway on local
engagement plans suggest that while successful engagement requires some effort to
get up and running initially, once established it need not add significantly to their
commissioning workload’ (Stout 2011)
• Feedback loops will not only enable effective PPE, but also validate PPE and how
effective it is. They are essential, it is not a one way linear process.

For Domain 2 CCG authorisation it states that ‘meaningful engagement with patients,
carers, and their communities: CCGs need to be able to show how they will ensure
inclusion of patients, public, communities of interest and geography, health and
wellbeing boards and local authorities in everything they do, especially their
commissioning decisions. they should include mechanisms for gaining a broad range of
views then analysing and acting on these. It should be evident how the views of
individual decisions and how the voice of each practice population will be sought and
acted on’. In summary emerging CCGs should be able to describe the arrangements
they are putting in place to ensure they can effectively engaged with and gather insight
from patients, carers, and public including disadvantaged groups and that the results of
this engagement is reflected in the decision making processes for the CCG, including
engagement throughout he commissioning cycle and in the major commissioning
decisions, service improvement and service redesign, integration, as well as transparent
governance arrangements that deliver local accountability, promoting choice through
shared decision making’.

11. Governance

It feels important to highlight governance briefly here, in terms of public value, and what
adds value to the public sphere, and governance forms part of this. One of the keys to
this will be to identify with whom a (CCG) governance group needs to engage and for
what purpose. ‘CCGs need to ensure there is a central group or committee that
receives patient experience information from a variety of sources, including
conversations, JSNA, PALs significant untoward incidents, audits and NHS choices.
This could all be processed for instance with the support and expertise of Healthwatch.
‘The contactual Duty of Candor in healthcare will be an enforceable duty on providers to
be open and honest with patients or their families when things go wrong ensuring they
receive information about any investigations and encouraging the NHS to learn lessons.
Being open with patients when something goes wrong is a key component of
developing a safety culture; a culture where all incidents are reported, discussed,
investigated and learned from. (DH 2011)’. CCGs as part of their setting up will need to
develop a culture of openness, which is part of how a ‘modern NHS should be - open
and accountable to the public and patients to drive improvements in care’. (DH 2011).

Lay members are part of the CCGs governance, and engagement. There needs to be
consideration of the level of responsibility for lay members on the CCG board and
accountability, and the way they are rewarded, and, this would include transparent
recruitment processes, not co-option as that will smack of cronyism and reduce
credibility. ‘Unpaid volunteer basis for lay membership of boards is setting people up to
fail and be ineffective’. There are ‘two sorts of lay members on boards governance- an


insider role, keeping the board focused on the business, working with patients, public,
and representational (e.g. Healthwatch) supra-PPG who maintains an outsider
perspective (Gilbert Inhealth 2011). Voting and voting rights needs to be clear in job
descriptions and role descriptions. ‘The elected board must include ‘at least two lay
members - one of whom will lead on patient and public involvement, and the other will
oversee key governance issues such as audit, remuneration and managing conflicts of
interest’ (BMA 2012).‘The wide-ranging literature demonstrates that effective
governance means giving priority to understanding the perspectives of key
stakeholders - both internal and beyond the clinical commissioning group. Engaging
effectively is an important way that a governance group and the CCG as a whole can
demonstrate its openness, transparency and ultimately accountability’ (NLC (2011).
Using lessons from complaints can, amongst other things, be a valuable way to
influence improvement.

12. Ethics

There are also ethical considerations. The BMA (2011) state ‘it is very important that
patient involvement is implemented well and that patients well being and dignity are
defended. At present there is no national framework for PPI governance (including
ethical committee requirement). This requires due consideration of the individual,
providing information about what you would like those involved and engaged to do, and
what you will do with the information, ensuring confidentiality. ‘Lay representatives or
groups can be very helpful in working through tough ethical choices facing
commissioners’ (RCGP 2011:3).

13. Websites, and other resources

This section offers some websites, approaches, models, and case studies (or places
where case studies can be found). It does not specifically advocate any of these
resources, but is to share a range of what is around at the moment.

a. Governance:

‘Representatives on committees’ ‘this is a basic approach that should be seen as good
practice. Having lay people on committees can profoundly change the nature of
conversations’ ‘it needs to be made clear to the lay delegates on the committees that
they are a gateway to other groups and individuals outside.’ they should be
communicating with them and bringing their views to the table, you are not expecting
them to represent all people. Most CCGs will have arrangements for paying lay
representatives. there are examples of how this can be done. RCGP (2011) provide an
e x a m p l e v i a w w w. n o t t i n g h a m p r i n c i p i a . n h s . u k ( P r i n c i p i a ) h t t p : / /
www.nottinghamprincipia.nhs.uk/get-involved. Being aware of questions around how
can patient representatives act as a proxy for other groups, can they represent the
views of wider communities? how can they draw upon their own experiences to
understand the wider dimensions of patient experience? - needs patient representatives
who know the broad dimensions of what matters to the wider patient population, and
knowing how to ask the right questions to ensure conversations, meetings and
activities remained focused on patients.

b. Patient Participation Groups (PPGs):


Recent changes to the General Medical Services contract from April 2011 require GP
practices to promote the proactive engagement of their patients through ‘Patient
Reference Groups’ and to undertake local surveys.
N.A.P.P. has over 30 years experience and expertise in promoting, supporting and
developing Patient Participation Groups (PPGs) and has developed a full range
of resources that can support practices and PCT's in implementing this contractual
Patient Participation requirement. Patient Participation Groups make an important
contribution to the well-being of their communities. Their activities include health
promotion, information provision, service delivery, fundraising and strategic input to the
practice (Community Voices – Developing Virtual Patient Participation). PPGs can
conduct patient surveys or collect feedback from patients in the waiting room, advise
practices and patients of new service and treatments, share good practice with other
PPG's, sit on recruitment panels for new staff including GPs, as well as producing a
directory of self support groups, running courses within surgeries on health topics,
raising awareness of public health messages

PPG and other case studies at NAPP http://www.napp.org.uk/napp-projects/ppg-case-
studies/ as well as Best practice in patient participation http://www.napp.o.rg.uk/napp-
projects/best-practice/
Virtual PPGs - http://www.ehi.co.uk/news/EHI/6840/virtual-groups-make-involvement-
reality

c. Staff/workforce engagement:

Engaging your staff: the NHS staff engagement resource by NHS Employers http://
www.nhsemployers.org/EmploymentPolicyAndPractice/staff-engagement/Pages/Staff-
Engagement-And-Involvement.aspx has case studies from Salford Royal NHS
Foundation Trust, St Georges Healthcare NHS Trust, Homerton University Hospital NHS
Foundation trust, South Essex University Hospital Foundation Trust,Royal Bolton
Hospital NHS Foundation Trust, the Walton Centre NHS Foundation Trust.

Department for business information and skills - http://www.bis.gov.uk/policies/
employment-matters/strategies/employee-engagement - Macleod review - a report
featuring multiple case studies and discussion of the wider evidence

Engaging with primary healthcare professionals to improve the health of the local
population - http://www.psnc.org.uk/data/files/News_article_documents/
LA_and_LRC_engagement.PDF

d. Self management:

http://selfmanagement.kyoh.org/what-is-self-management.html - Know your own health
self management tools -KYOH is an online self-management service. Specifically
designed to help people build up their confidence and capability to self-manage their
health.


Treasure your wellbeing www.treasureyourwellbeing.org - design as an online tool to
enable service users to monitor, improve and sustain their well-being on their own,
primarily on discharge from acute mental health wards (by Mersey Care NHS Trust)

Co-Creating health: a self management support programme (Health Foundation 2011:7)
Around 18 million people in the UK live with a long term condition such as diabetes,
depression, heart disease or arthritis, and this number is expected to double by 2030.
This offers apatient - self-management support programme; - agenda setting:goal
setting, clinician - advanced development programme for clinicians; agenda setting,
goal setting, healthcare system - a service improvement programme to embed self
management support processes, agenda setting, goal setting as a whole cycle.
www.heath.org.uk/sms (self management support).Co-creating health Programme -
Health Foundation www.health.org.uk/cch

‘The Expert Patient Programme is a much-cited example of a self care programme that
benefits from insights from service users and recognises patents as people with
resources. `the programme has already supported over 50,000 people to develop
disease management skills and trained more than 1,700 volunteers as expert patients.
(NESTA 2009) http://www.expertpatients.co.uk/

http://www.health.org.uk/areas-of-work/programmes/shared-decision-making/case-
studies/north-east-newcastle-collingwood-and-central-surgeries-methods-for-
changing-clinician-behaviour/ (Magic Programme, Health Foundation)

http://selfmanagement.kyoh.org/what-is-self-management.html - know your own health
(KYOH) - KYOH is an integrated self-management service
Specifically designed to help people build up their confidence and capability

to self-manage their health.

http://www.carepages.com/ - CarePages websites are free patient blogs that connect
friends and family during a health challenge

The Health Foundation Health foundation (2011) (3) can changing clinical-patient
interactions improve healthcare quality? a scoping report for the Health Foundation
December. Martin Fischer and Gill Ereaut - research on clinician-patient interaction

The Health Foundation: Self-Management Support Resource Centre. This resource
centre is packed full of information and practical resources that can be adopted and
adapted locally to help services and health professionals to develop their own self-
management support programmes. www.health.org.uk
NHS Diabetes The Year of Care programme sets out to learn how routine care can be
redesigned and commissioned to provide a personalised approach for people with
long-term conditions.www.diabetes.nhs.uk


Ppe Paper For Cc Gs Towards Authorisation And Beyond

Ppe Paper For Cc Gs Towards Authorisation And Beyond

Recommended

Recommended

More Related Content

What's hot

What's hot (20)

Viewers also liked

Viewers also liked (8)

Similar to Ppe Paper For Cc Gs Towards Authorisation And Beyond

Similar to Ppe Paper For Cc Gs Towards Authorisation And Beyond (20)

Ppe Paper For Cc Gs Towards Authorisation And Beyond