Understanding the Theory and Process of Strategy Development: Public and carer consultation and involvement in health service planning

Policy Background 

Over the last three years, the direction and opportunities for public and carer consultation and involvement in health service planning can be found in a variety of recent Government Acts, reviews, policies and guidance.

The NHS Act 2006

The National Health Service Act 2006 consolidated much of the current legislation concerning the health service. Section 11 of the Health and Social Care Act 2001, the duty to involve and consult, became section 242 of the NHS Act 2006. Section
242 was amended by the Local Government and Public Involvement in Health Act 2007. The duty on English bodies to involve users can be found in section 242(1B) of the NHS Act 2006.

Section 242(1B) of the NHS Act 2006 came into force on 3 November 2008.

The Local Government and Public Involvement in Health Act 2007

Introduced to Parliament in December 2006, the Bill focused upon a number of measures relating to local government as well as involvement of local communities. One of the measures was the establishment of Local Involvement Networks (LINks), which
replace Patients’ Forums, and the Commission for Patient and Public Involvement in Health in 2008. The bill also clarified and strengthened the existing duty on NHS bodies to involve and consult patients and the public in the planning and provision
of services.

World Class Commissioning

Commissioning is a complex, multi-level process encompassing a wide range of decisions and people. The term ‘commissioning’ can be used to describe many levels of decision-making, from top-level strategic decisions made by commissioning
boards, through to the smallest decisions about a particular service. NHS organisations need to be ever aware of the duty to involve users under section 242(1B) of the 2006 Act and may achieve this by developing a strategic approach to commissioning,
agreeing how, when and where to involve users and being prepared to be creative and innovative.

World class commissioning, published in 2007, recognises that the commissioning landscape is changing, and that a shift from traditional models of commissioning is required. People are living longer, their lifestyles and aspirations are changing
(and may need challenging to achieve better health outcomes), and the nature of public health is evolving.

This shift may require new and innovative partnerships to be forged between NHS organisations commissioning services, users, local authorities, clinicians and providers. World class commissioning sets out the vision for meeting these challenges
and identifies organisational competencies which are described within 11 headlines, one of which is to, “Engage with public and patients”.

Commissioners act on behalf of the public and patients. They are responsible for investing funds on behalf of their communities, and building local trust and legitimacy through the process of engagement with their local population. In order to
make commissioning decisions that reflect the needs, priorities and aspirations of the local population, world class commissioners will engage with the public, and actively seek the views of patients, carers and the wider community. This new
relationship with the public is long term, inclusive and enduring, and has been forged through a sustained effort and commitment on the part of commissioners. Decisions are made with a strong mandate from the local population and other partners.

Continuous and meaningful engagement will increasingly lead to commissioning decisions that reflect the needs, priorities and aspirations of users. PCTs need to give more thought as to how they will identify and meet the needs of people who
experience the greatest inequalities. Addressing inequalities in health outcomes will require different approaches and styles of engagement with different communities. In turn, this will lead to the commissioning of different service offers based
upon the world-class intelligence and information gained.

Our NHS Our Future NHS Next Stage Review: Leading Local Change:

One of the five pledges from Lord Darzi’s reports from May 2008, tells people:

“You will be involved”. The local NHS will involve patients, their carers, the public and other key partners. Those affected by proposed changes will have a chance to have their say and offer their contribution.

The Operating Framework for the NHS in 2008/09

Focuses upon the increasing view of citizens interest in the range of high- quality, accessible local services, and in how tailored the services are to the current or future needs of both their fellow citizens and themselves. Commissioners are
encouraged to have a responsibility to ensure that their local communities are therefore given the opportunity to be fully engaged in the decisions that they take, and to take greater efforts to communicate what they are doing and why to their
populations.

The Operating Framework for 2009/10 for the NHS in England

- High Quality Care for All

Builds on the national priorities of the previous framework including improving patient experience, staff satisfaction and engagement. Focusing upon the legal requirements to involve and consult patients and the public.

The Health and Social Care Act 2001

Section 7 of this Act made provision for regulations that require SHAs, PCTs and NHS Trusts to consult overview and scrutiny committees (OSCs), where they have under consideration any proposal for substantial development of the health services in
the area of the local authority, or for a substantial variation in the provision of a service.

Health Bill 2008-09

The Health Bill was introduced into Parliament on 15 January 2009.It proposes measures to improve the quality of NHS care, the performance of NHS services, and to improve public health. The Bill facilitates the further development of ways to give
patients greater personalisation and control over the health care services they receive. The Bill does this by enabling the piloting of direct payments for healthcare, within the wider programme to pilot personal health budgets. Personal health
budgets are part of a range of policies designed to personalise NHS services, including care planning and patient choice. The Bill will allow NHS patients in England to be given cash payments to buy physiotherapy, home nursing and other healthcare.
Ministers have not yet worked out the full details of how the scheme will work or how much of the NHS's £100bn budget will be handed over to individual patients.

The NHS Constitution: (to be published in 2009)

This Constitution establishes the principles and values of the NHS in England and will be renewed every 10 years. All NHS bodies and private and third sector providers supplying NHS services will be required by law to take account of this
Constitution in their decisions and actions. This will make it clear to patients that they have a right to be involved in planning and developing services provided by the NHS.

Supporting Organisations and Programmes

The following organisations and programmes share objectives for the implementation of public and carer involvement.

  The Commission for Patient & Public Involvement in Health (CPPIH)

  http://www.dh.gov.uk/en/Managingyourorganisation/

Established in January 2003 to set up and support Patients' Forums, this independent, non-departmental public body (NDPB) was abolished on the 31st March 2008 when Patients' Forums were replaced by Local Involvement Networks (LINks).

The CPPIH's role was to make sure the public is involved in decision-making about health and health services in England. There are over 400 Patient and Public Involvement (PPI) Forums, one for each NHS Trust in England and they work to ensure that
local people and communities have a say in improving local health services. The CPPIH are running seven of the nine early adopter sites to prepare for LINks on the Department’s behalf. 

Individual Budgets (IBs)

Glendinning et al 2008 Evaluation of the Individual Budget Pilot Project Final  Report Social Policy Research Unit: University of York

Individual budgets (IBs) are central to the Government’s ambitions for ‘modernising’ social care in England. They were first proposed in the Cabinet Office Strategy Unit report Improving the Life Chances of Disabled People (Cabinet
Office, 2005) and the proposal was repeated in the UK strategy for an ageing population (HMG, 2005). In the same year the Green Paper on adult social care Independence, Well-being and Choice (DH, 2005) also called for the piloting of
individual budgets so that older and disabled people could have more choice and control over how their support needs are met.

An Individual Budget is designed to provide individuals who currently receive services greater choice and control over their support arrangements. The government is committed to piloting individual budgets with a view to rolling them out
nationally should they prove successful. The individual budgets pilot project is a cross government initiative led by the Department of Health working closely with the Department for Work and Pensions and the Department of Communities and Local
Government.

Individual budgets can greatly improve a carers' quality of life when compared with carers of people using conventional social services. They can allow carers more control and flexibility in their daily routines, and some carers said individual
budgets also improved quality of life for the person they were looking after. 

The Department of Health is now committed to both promoting direct payments more widely, in particular to groups that are currently excluded, and by developing and piloting the concept of individual budgets, including income streams other than
councils' social care provision.

The idea behind individual budgets is to enable people needing social care and associated services to design that support and to give them the power to decide the nature of the services they need.  Key features are:

• A transparent allocation of resources, giving individuals a clear cash or notional sum for them to use on their care or support package
• A streamlined assessment process across agencies, meaning less time spent giving information
• Bringing together a variety of streams of support and/or funding, from more than one agency
• Giving individuals the ability to use the budget in a way that best suits their own particular requirements
• Support from a broker or advocate, family or friends, as the individual desires.

The Individual Budgets Pilot Projects - Impacts and Outcomes for Carers

found that:

• carers are more able to engage in activities of their choice
• individual budgets for service users may be cost effective for carers
• carers identified the benefits of Individual budgets as including greater  flexibility, choice and control. This positively affected how they spent their time, and improved the quality of life of the service user.

The Department of Health, the Department for Communities and Local Government (formerly ODPM) and the Department of Work and Pensions have worked together to develop a starting model for individual budgets which will include some of the following
income streams:

• Council-provided social care services
• Independent Living Fund
• Supporting People
• Disabled Facilities Grant
• Integrated Community Equipment Services
• Access To Work

The commitment to personalisation and the extension of choice and control is reflected in the commitment in the Our Health, Our Care, Our Say White Paper  2006, to establish a national network to support these developments.
This has been established by the Care Services Improvement Partnership. Many local authorities and their partners are already exploring similar approaches alongside people who use services and supports.

Care Quality Commission (April 2009)

http://www.cqc.org.uk/news__events/

The Care Quality Commission will regulate and improve the quality of health and social care and look after the interests of people detained under the Mental Health Act. This new organisation will take over the work of the Commission for Social
Care Inspection, the Healthcare Commission and the mental Health Act Commission. Assessing quality in health and social care ensures care is: safe; improves outcomes for people; provides a good experience for people; and is focused on healthy,
independent living and quality of life. It also ensures there is good access to services and that services provide good value for money.

Patient and Public Involvement 

http://www.dh.gov.uk/

Patient and Public Involvement (PPI) is not just about structures – it is a cultural change. It is about empowering patients and the public to have a say and about people in the NHS working differently and listening to and acting upon the views
of patients and the public. Patient and Public Involvement improve patients’ experiences of the NHS. 

The NHS Centre for Involvement (NCI)


http://www.nhscentreforinvolvement.nhs.uk/index.cfm?content=15&Menu=26

The Centre was established in 2006 and engages with organisations in order to create, encourage and support a healthcare culture that involves individuals and communities on many levels. 

The centre aims to:

• Promote the value of patient and public involvement
• Create a one stop shop for information and advice
• Build the capacity of organisations, staff and patient-citizens
• Develop and disseminate practical resources
• Generate evidence-based models & best practice examples
• Identify and maximise learning opportunities
• Develop networks and communities of interest
• Practice what we preach

The NCI has undertaken to carry out an evaluation of the work of the Early Adopter Project sites. Along with this, they provide the tools and communication channels to support Patient and Public Involvement (PPI), by making information available
through targeted networks, newsletters and our website.

Local Involvement Networks (LINks)  

http://www.dh.gov.uk/en/Managingyourorganisation/

LINks aim to give citizens a stronger voice in how their health and social care services are delivered. Run by local individuals and groups and independently supported - the role of LINks is to find out what people want, monitor local services and
to use their powers to hold them to account.

Under the legislation that establishes LINks local authorities have been given £84 million in funding to support LINk activities between 2008 - 2011.  Each authority is expected to contract an organisation (known as a host) to set up and
then run a LINk. These hosts are expected to be in place in every area by the end of 2008.  It's up to each community, with the support of a host, to decide how they want their LINk to be run and what issues they want it to focus on. However to
help LINks , a range of advice and guidance has been made available.

LINks are a source of information that is valuable to organisations in helping them commission and provide services that are responsive and accountable to local people. Many different people can be part of a LINk so that different groups and types
of people that make up the local population may be able to join.

LINks look at all health and social care services in their area. It does not matter who provides the services – the NHS, a local authority, a private company, a social enterprise or a charity.

LINks:

• Promote and support involvement of people in commissioning, providing and scrutiny of care services
• Monitor the way health and social care services are commissioned and provided, and gather the views and experiences of people using them within the local area
• Reach out to local communities and provide opportunities for them to have their say in the way local services are planned and commissioned
• Convey the views and experiences of people to the organisations responsible for commissioning, providing, managing and scrutinising the services and make recommendations on how they can be improved.

What LINks mean for Health and Social care Commissioners and Managers

http://www.nhscentreforinvolvement.nhs.uk/docs/

The first ten things that LINks should do

1. Agreeing governance and accountability arrangements
2. Developing policies and procedures
3. Mapping existing activity
4. Developing engagement and participation mechanisms
5. Clarifying information and communication sharing strategies
6. Agreeing a work plan
7. Identifying and developing relationships
8. Engaging and retaining people involved with LINks
9. Agree the annual LINk budget and priorities for spending
10. Agree a training and support programme.

Early Adopter Programme

http://www.dh.gov.uk/en/Managingyourorganisation/

In the White Paper Our health, our care, our say, the Government made a commitment to implement a single comprehensive complaints process across health and social care by 2009, focussed on resolving complaints locally with a more personal and
comprehensive approach to handling complaints.

In order to support both the development of the new approach and the practice and behaviours needed to deliver it successfully, new arrangements are being introduced through a programme of"Early Adopters". These early adopter sites
represent a wide variety of local environments, approaches to complaints handling and levels of performance.



The early adopter sites will still be operating within the current complaints legislative framework but, supported by the Making Experiences Count team at the Department of Health and each other, will develop their approaches to local resolution. The
goal of the Early Adopter Programme is to identify the success factors, behaviours and tools in resolving the vast majority of complaints at a local level.

What is the purpose of the LINks Early Adopter Programme Plan?

http://www.nhscentreforinvolvement.nhs.uk/

Nine early adopter projects (EAPs) have been set up around the country to ensure that the new local involvement networks (LINks) will work well and that the learning and experience of the current system is not lost.

Seven of these projects are being run for the Department of Health (DH) by the Commission for Patient and Public Involvement in Health (CPPIH)

The purpose of this programme is to identify key lessons, across Health and Social Care, of how to support the development of LINks, key issues relating to measurement and models of successful and unsuccessful practice.

Currently, there are a total of nine Early Adopter Programme sites (EAPs) across the Country.  Seven are managed by the Commission for Patient and Public Involvement in Health and two programmes are managed by the Healthcare Commission.

How is it going to work?

Each site will have a Project Group made of local stakeholders and that group will own the project.  At a minimum, membership will include PPI Forums, Forum Support Organisations, local authorities (executive & non-executive
representatives), PCT and NHS Trusts, Healthcare Commission and voluntary sector representatives.

Each is essentially a community development project looking at the structures required to empower and support community engagement in health and social care.

The Project Group will have significant freedom to work with local partners in the most appropriate way to look at the issues for LINks. For example, they might set up a formal shadow LINk and test it for 4-6 months, or it might be a series of
local working groups looking at local LINk issues, or might be a formal local conference built on series of local working groups looking at individual issues or communities of interest.  These activities will run alongside existing PPI Forum
activity. Other partners may be Local Strategic Partnerships, Foundation Trusts, health and social care regulators and children’s services inspectorates.

Using a systematic approach the lessons from the projects, at the separate sites will be brought together by the NHS Centre for Involvement & OPM with research being conducted in EAP areas to capture learning at specified intervals over the
life of the project. The approach will be defined during the life of the project but will deliver findings at agreed intervals probably after three, six and nine months with a final report at the project end i.e. end of the calendar year. Capturing
the learning is internal to, and encompassed within, the scope of the project.

Guidance on user involvement (DH2008)

Key to effective implementation is a better understanding of when and how the NHS involves users, and how to listen and respond to what it has heard. ‘Real Involvement’ offers guidance to help NHS organisations undertake real
involvement and will lead to commissioning decisions that better reflect the needs, priorities and aspirations of users. This guidance was published by the Department of Health in October 2008. This 148 page document has been summarised below.

The guidance provides examples of robust involvement practices that ensure outcomes inform all decisions that are taken about changes to national health services and, where applicable to report on consultations.  This guidance is for those
people working at a range of levels in SHAs, PCTs, NHS Trusts and NHS foundation trusts, from chief executives, directors, commissioners and managers to front-line staff. 

Section 242(1B)

The law has been strengthened so that the NHS is clearer about when it must involve people in planning, developing and delivering health services. NHS organisations are required to have regard to the statutory guidance and although not bound in
every case, they must have good reasons for departing from it. NHS organisations have an obligation to involve users when they are:

• planning the provision of health services;
• developing or considering proposals for changes in the way health services are provided, if the implementation of the proposal would have an impact on the manner in which the service is delivered to users, or the range of health services
  available; and
• making decisions that will affect the operation of a health service if it would have an impact on the manner in which the service is delivered to users, or the range of health services available.

The level of the involvement activity required will be dependent upon the scale of the change.

The Principles of Local Accountability and Effective Involvement

The principles outlined within the guidance for Real Involvement are intended to support good governance, decision making and user involvement, encouraging NHS involvement practices to be:

• clear, accessible and transparent
• open
• inclusive
• responsive
• sustainable
• proactive
• focused on improvement.

Building an ‘Involving’ Organisation

Tackling the challenges of developing an organisation that embeds involvement in its core values, behaviours, systems and processes can require sustained leadership and effort over a number of years for some NHS organisations. The following
guidance highlights critical factors for success:

A high-performing organisation which,

• Sees its users as a valuable source of information, who are able to provide an insight into their needs and wants, and feedback on their experiences
• Targets people who are ‘easy to overlook’ and those at risk of health inequalities to give them an equal opportunity to get involved
• Invests in developing the capability and capacity of its staff to undertake effective involvement activity
• May consider the benefits of taking a social marketing approach to involvement work
• Undertakes health impact assessment and makes sure it involves the right people
• Makes good use of the intelligence it receives from existing data as well as involvement activity
• Consistently provides an audit trail concerning the processes of involvement
• Utilises a range of techniques to involve users.

Governance

The NHS organisation thinks about building in user involvement to its  governance structures so that there are mechanisms in place for user  representatives to be part of the decision-making processes for the organisation’s
commissioning decisions.

Leadership

Executive teams, board members, senior managers and clinical leads are upfront with their support for involvement activity and consistently recognise the benefits of doing it well.

Use of existing information

NHS organisations have central points for recording, collating and updating the  large amounts of valuable data about patients experiences in the forms of waiting times, infection rates and self-reported data; current involvement activities;
Patient Advice and Liaison Services (PALS) and complaints data. Organisations also provide ways to systematically use the data to identify areas  for service improvement.

Managers routinely access the data, commission further data-gathering  exercises where there are gaps and seek advice from the involvement ‘experts’  and Local Involvement Networks (LINks) and feed this data into decision- making
processes.

Finance

The organisation has a dedicated and realistic budget allocated for user  involvement activity and departments such as organisational development and  public health are prepared to allocate additional finding for involvement activities
where appropriate.

Planning and reporting processes

The organisation invests considerable effort in scoping and planning its  involvement activity, thinking creatively about the people who may be ‘easy to  overlook’ and working with LINks and others to find the most appropriate 
techniques for involving them. It considers:

• why it is planning involvement activity
• what it needs to find out
• who it needs to involve
• when and how best to reach the right people, especially those who are marginalised and most vulnerable to ill health
• how it will use the information to help it make the best decision and
• when and how it will feedback to people it has involved to explain what has happened as a result of their involvement.

Working with partners and users

Although not directly part of its obligation under section 242(1B), the  organisation operates in an inclusive, open and transparent way, seeing itself at  the heart of the community and has a strong relationship with the local authority
and its local partners. Working with partners requires good communication and  the sharing of appropriate and non-confidential information about the needs  and wants of people. With a high profile in the community, the organisation reaches
out to people in non-health settings through shopping and leisure centres, developing robust and continuing relationships with community groups representing marginalised and vulnerable people. Joint appointments of  staff with recognised
expertise in user involvement may also provide a useful way to promote a partnership approach.

(For the benefits of joint working see 5b: Understanding Organisations their structure and function - inter-organisational (network) relationships, including intersectoral work, collaborative working practices and
partnerships)

Planning Involvement Activity

User involvement activity requires careful planning and NHS organisations should be clear about what they want to achieve. The following set of questions can be used at the planning stage:

1. How does this work fit with the organisation’s overall strategy?
2. What does the NHS organisation need to know and what do users need to know? e.g. there will be occasions when an NHS organisation may be providing information rather than seeking it.
3. What is the cost and what are the benefits?
4. How much controversy will it generate (in the light of similar changes, or general issues of trust and confidence in the NHS?
5. What work has already been done with users, and what was the outcome.

Carrying out involvement

Whatever the scale of change, NHS organisations will find it helpful to be clear about the process they will use for taking decisions at the start of the involvement process. NHS organisations should aim to have decision-making processes
that are open and transparent so users can understand how decisions will be reached and how their views and opinions will be used. Commissioners and providers will become ‘world class’ when they have the capability and capacity to buy and deliver
the health services people want.

Section 242 (1B) requires NHS organisations to make arrangements to involve users, whether by being consulted, provided with information or in other ways. The duty therefore covers the whole range of involvement activity, including
pre-consultation involvement and consultation itself. The key issues to remember are that the level of involvement:

• needs to be relevant to the issue
• is best viewed as a continuum ranging from giving information through to participation, and
• needs to match the circumstances and context in which it takes place.

Be clear what level of involvement is required. Carefully think through what you need to do. Do you need to:

• Give information?
• Get information?
• Hold forums for debate or participation?

Do not be tempted to always use the same technique, e.g. a focus group, and remember to be clear who you need to involve – it is not necessary to consult everyone each time you undertake an involvement activity

The Involvement Continuum

The diagram below shows an involvement continuum with different levels of involvement. The directional arrows are used to indicate where it is possible to slide a technique along the continuum. As one moves towards the direction of participation
there will be more opportunities to become involved in any debate. It includes statements to help identify what can be achieved by using particular techniques at each level.

The major challenges for NHS organisations are to:

• identify and involve the users who are ‘easy to overlook’
• understand users’ lack of knowledge of the planning and commissioning processes in the NHS
• refrain from using jargon and complex language that is difficult for people to understand
• make use of existing non-confidential data on patients’ experiences
• make sure that there is strategic level prioritisation of patient and public involvement
• act on the results of involvement work in the course of making planning and commissioning decisions and monitor this process.

Choosing Techniques

A range of techniques have been identified within this guide which are arranged in sections that relate to the involvement continuum (see diagrams below):

Once the level at which to operate has been determined, organisations are encouraged to develop a set of criteria that reflect the requirements and the context for the involvement activity and use them to help select which techniques or series of
techniques would be best to use.

Consider the example below:

A PCT wishes to find out whether a sexual health clinic meets the access needs of young adults, the criteria might include:

1. we want to hear the views of young people who are ‘easy to overlook’ 
2. we want to enable participants to voice their own ideas and issues
3. the technique has to be suitable for target group – young adults
4. it needs to facilitate the capture of the type of information we require (qualitative in this case)
5. it must be undertaken within the available involvement budget
6. it has to happen within the specified time frame.

For example:

By plotting the range of techniques that could be used in the left column of the table below, and rating out of 10 the extent to which the techniques meet each criteria – the techniques with the highest scores are those most likely to achieve
the best result.

Table based on the work of the New Economics Foundation (www.neweconomics.org)

In this example the most suitable technique to use is story telling, followed by focus groups and the least suitable is shadowing and use of a blog.

The review offers a range of techniques that can be viewed as an ‘à la carte’ menu enabling the most suitable approaches for the work in hand to be selected and relate to the involvement continuum.

A further resource for different techniques can be found on: www.peopleandparticipation.net

References

• Department of Health (2007) World Class Commissioning Vision Summary London: Crown
• Department of Health (2008) Real Involvement - Working with People to Improve Health Services

© Sally Markwell 2009