Working Together

Working Together

Patient, Service User and Carer Experience and Involvement Strategy 2024

Below is our Patient, Service User and Carer Experience and Involvement Strategy. If you would like a printable pdf version of the strategy, please click here:  Patient, Service User and Carer Experience and Involvement Strategy 2024.pdf 5MB

Healthcare is increasingly understood as an experience as well as an outcome, with patient and carer experience being a key element of quality alongside patient safety and clinical effectiveness. The quote below highlights three well-known reports that have all emphasised how important it is not just to listen to patients / service users and carers at the point of delivery of care or solely at the point of a failure in care, but to ensure that they are routinely included in service development.

The Francis Report, which examined the failings in care at Mid Staffordshire NHS Foundation Trust between 2005 and 2009, found that ‘patients and relatives felt excluded from effective participation in the patients’ care’. 

The Keogh review in 2013 found there was a limited understanding of how important it was to involve patients and families in their care in the 14 Trusts investigated because they had had higher-than-average mortality rates. 

More recently the Ockenden Review into maternity services at the Shrewsbury and Telford Hospital NHS Trust found that ‘for far too long, women and families who accessed care at the Trust were denied the opportunity to voice their concerns about the quality of care they had received.’

There are many more examples I could have chosen to make the same point. Despite these and many other reports, inquiries and reviews, the NHS, at all levels, whether in clinical care or at board level, is still too often not listening to people who use its services.”

While the above describes specific and serious failings in care, it is important to recognise that listening to patient / service user and carer experiences of services and involving them in service development should be a routine activity as opposed to only in response to serious and significant failings in care.

The purpose of this strategy is to articulate how the Trust will continue to embolden patient and carer perspectives obtained from different sources and triangulate this information to provide a clear perspective about the patient service users and carer experience for the Trust to use to improve services. A key element of this strategy will be the involvement of patients and carers in developing this approach and more broadly embedding co-production across CPFT.

Strategy development

This strategy has been developed with the Participation and Partnership Forum, from feedback from a staff survey, and through engagement with a number of external partners.

Legal obligation

Involving people in service redesign is always a positive step. In specific circumstances there is a legal duty to involve communities including patients / service users and carers in decision-making about services. The legal duties on public involvement require organisations to make arrangements to secure that people are appropriately ‘involved’ in planning, proposals and decisions regarding NHS services. Key requirements of Integrated Care Boards, Trusts (and therefore CPFT) and NHS England include that they:

  • Assess the need for public involvement and plan and carry out involvement activity
  • Clearly document at all stages how involvement activity has informed decision-making and the rationale for decisions
  • Have systems to assure themselves that they are meeting their legal duty to involve and report on how they meet it in their annual reports.


Involvement is used as an umbrella term to encompasses different ways that patients / service users and carers can be involved in supporting the Trust to respond to patient, family and carers’ feedback and ensure that services are the best that they can be.

All forms of involvement are valuable and support people to get involved in ways that suit them. For some this may be completing a patient experience questionnaire or attending a focus group (engagement and consultation). For others it may be taking part in co-production activities suchas being part of decision-making groups. In addition, sources of information such as that from PALS and complaints are a valuable source of information. As such, this area of work has been linked into this involvement strategy.

Why involve people?

Service users / patients and carers bring the perspective of somebody who has used services. Their perspective allows us to fully understand what is it like to receive care and treatment from services provided by the Trust. Having a robust involvement culture means that staff and people who use services are able to work together to come up with creative solutions to address the problems identified - ultimately creating better services for all.

This strategy focuses on four areas, all of which contribute to the understanding and embedding the experience of patient and carers accessing clinical services and form part of a broader approach around involvement. These include:

  • Patient and carer experience
  • Patient Advice and Liaison and complaints and compliments.
  • Patient Safety Partners
  • Co-production

While patient and carer experience and PALS and complaints are established services, patient safety partners and co-production are relatively new approaches. Within each of these areas there are actions required to maximise the value that they bring both individually and collectively to the Trust. The aim of this strategy is to support the achievement of priority 1 of the Trust strategy:

Working in partnership to deliver the best care with the aim to ensure co-production and engagement with our patients and their families is at the centre of everything we do.

The objectives, which the actions required for the delivery of this strategy will align to, have been developed by the Participation and Partnership Forum.

  • We will build relationships that are based on Trust.
  • We will develop resources and processes to support staff to make use of patient and carer experience data and to support staff, patients and carers to get involved.
  • We will build on what is already there or already known about patient / servicer user and carer experience of services through using data already collected by the Trust and through collaborating with external organisations.
  • We will look at how we will measure improvements and benefits from increased patient / service user and carer involvement.
  • We will continue to celebrate involvement successes, however small.

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Patient / service user and carer experience data

The primary purpose of patient / service user and carer experience data is to improve services. People who use services bring a unique perspective of what it is like to experience services and have a valuable role in the development of services. Involving patients / service users and carers, together with the clinical perspective, is essential for service improvement.

Patient / service user and carer experience data is routinely collected across all Cambridgeshire and Peterborough NHS Foundation Trust services. A key part of this strategy is centred around ensuring that the processes and systems used to collect and analyses data support clinical services and the Trust as a whole to place patient and carers’ experience central to service development and improvement.

  • To develop in conjunction with the Patient Safety Partners and the Participation and Partnership Forum a patient / service user and carer experience group to contribute and oversee the implementation of the strategy.
  • To ensure that questions in the questionnaires are reflective of the areas that are important to both the Trust and patient / service user and carers.
  • To create a clear framework that is used to underpin how questionnaires are implemented within the Trust and how the data is used and how the Trust demonstrates its use.
  • To create a process that articulates how patient data will be captured and used by the Trust, including how informatics and performance and the directorates are integral to this process.
  • To review how qualitative data is used by the Trust and ensure that there is a focus on the analysis of themes.
  • To consider the use of SMS messaging to ensure that the data collected is representative of patient / service user and carers using services.
  • To implement a “you said, we did” public webpage so that people who use CPFT services can see how we are using patient /service user and carer experience information and data to improve services.
  • To ensure there is a clear process that systematically informs CPFT of patient / service user and carer experiences of receiving care and treatment at the Trust.
  • To ensure that questionnaires are also available into different languages and formats.

Patient Advice and Liaison Service and complaints and compliments

The Patient Advice and Liaison Service (PALS) and Complaints Team is a conduit for people whouse our services to raise concerns about their or their families’ experience of care and treatmentand to submit compliments.

Complaints are often about people sharing a deeply personal experience at a point of great vulnerability. While the emotions and feelings attached to the complaint may be uncomfortable for individuals and for the organisation, the learning from complaints is a crucially important part of improving patient experience.

While much time is taken in responding to complaints, further work is required to ensure that the learning from PALS and complaints is maximised. The actions for this include:

  • To ensure there is a clear process of the analysis of themes from formal and informal complaints and that the Trust is informed of these.
  • To utilise the patient / service user and carer experience group to support PALS and complaints in ensuring that the process and approach is compassionate and supportive to complainants.
  • To implement a process that enables the Trust to monitor the ethnicity of people who make complaints and contacting PALS.
  • To input into the patient / service user and carer experience public webpage (to be developed) to highlight the key themes being identified within complaints and the Trust’s response to these.


Co production is a way of working that involves people who use health and care services, carers and communities in equal partnership; and which engages groups of people at the earliest stages of service design, development and evaluation. A key element of this policy is to embed co-production in how the Trust develops and responds to patient / service user and carer experience and that it takes place within the Trust.

Benefits of co-production

When staff get involved in projects with service users / patients and carers they tell us afterwards they wouldn't want to work any other way. Organisations with high levels of involvement are more likely to receive an ‘outstanding’ Care Quality Commission rating. Staff and patients tell us that co-production is important to them with staff rating the importance of co-production as 9/10.

Staff have told us that for a number of reasons it isn’t easy for them to involve patients / service users and carers in co-production activity. The reasons for this include:

  • I don’t know where to start with co-production.
  • I don’t have the knowledge to implement co-production.
  • I don’t have the time.


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Building positive relationships for successful co-production and involvement

People who are supporting the Trust with involvement activities have told us that building  relationships is a crucial part of co-production and involvement.

Members of the Participation and Partnership Forum have identified eight key points around involvement that are important to both building and developing trusted relationships and to ensuring that involvement is successful.

  • We want to work collaboratively with CPFT – trust us, as we trust you.
  • The best time to involve us is at the beginning of a project. To be fully involved, we need to be part of the planning from the outset, and we have much to offer in those early stages.
  • Building relationships is essential – a project in which we all invest time in developing relationship-based co-production will build positive relationships ensuring everyone is connected. This will ultimately help create the best project outcome and a robust involvement culture.
  • There are different approaches to involving us. The ladder of involvement will help identify which approach best meets the needs of the project.
  • There are many different activities that we, people who use services, can do to support the Trust in ensuring that involvement is contributing to outstanding care.
  • Being valued: It is great to be involved and to know that our perspectives are valued - actions that demonstrate we are valued include receiving the papers and invites for meetings we have been asked to attend; if payment has been agreed; not having to remind or chase for this payment; having access to relevant training, and the IT that is needed for our role and being invited back.
  • If we choose to get involved, it is because we feel passionately about the project. We want to see results and evidence of making a difference – let’s move from ‘you said / we did’, to ‘we said / we did’.
  • Our time is precious – if involving us in a project doesn’t feel like it is bringing value to the project to you – we are probably feeling the same way. Let’s reconsider together.


  • To identify alternative forms of reimbursement for people who get involved in co-production that do not impact on their benefits.
  • To set up a young people’s forum to support greater co-production with young people.
  • To set up a wider mental health network to increase the engagement and co-production with people with mental health challenges.
  • To develop outcome measures that can be used to assess the impact and benefit of co-production.
  • To create a co-production road map to support staff in the implementation of co-production.
  • To ensure that involvement is embedded in quality, service improvement and redesign and closely linked to project improvement programmes.
  • To support the accountable business units to embed co-production into how they work.
  • To work with the Integrated Care Board on how co-production can be embedded across the Cambridgeshire and Peterborough system.
  • To link into the involvement webpage examples of co-production activity that has taken place within the Trust.

Patient Safety Partners

Patent Safety Partners (PSP) is a new and evolving role developed by NHS England and NHS Improvement to help improve patient safety across the NHS. The main purpose of the role is to be a voice for people who use NHS services and ensure that patient safety is at the forefront of allthat we do.

PSPs will work closely and collaboratively with the Patient Safety Specialists (PSS), Director for Allied Health Professionals, the Deputy Director of Quality and other staff members as appropriate for particular areas of work and projects. Such staff will provide support, guidance and direction for the roles.

The role of a PSP is important in supporting the voices of patients and service users to be heard at all levels of the organisation and includes:

  • Membership of safety and quality committees whose responsibilities include the review andanalysis of safety data.
  • Networking with ICS and National PSPs.
  • Engagement with community of practice and ICS-led PSP projects.
  • Involvement in patient safety improvement projects.
  • Working with teams and services to consider how to improve safety.
  • Involvement in relevant staff patient safety training.
  • Participation in investigation oversight groups where appropriate.
  • Participation in projects that focus on learning and involvement.

Implementation, monitoring, and impact of this strategy

Through the implementation of this strategy, the anticipated outcomes are:

That there is a clear strategy and related work plan that links the different elements of patient and carer experience and involvement together creating a unified approach. Progress on the achievement of the strategy will be monitored through the Patient and Carer Experience Commitment, Quality and Safety Board, one-to-one supervision between Associate Director of Patient and Carer Experience and Involvement.

The different sources of information about patient / service users and carer experiences can be triangulated together in a format that enables the Trust to easily identify what the experience of patients and carers who access services is.

All directorates are able to articulate their response and actions to patient / service user and carer feedback.

Co-production activity is central to the implementation of the strategy and that there is an increase in co-production activity taking place across the Trust and that this has greater visibility.

As a patient

As a patient, relative or carer using our services, sometimes you may need to turn to someone for help, advice, and support. 

Patient Advice and Liaison service  Contact the Trust