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Patient and Public Involvement

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1 Patient and Public Involvement
Resources For more information go to: _involvement/Pages/default.aspx Patient and Public Involvement PPI handbook © 2013 Nottingham University Hospitals NHS Trust Designed by April Strategy LLP Version 2, March 2013

2 Contents NUH Patient and Public Involvement (PPI) toolkit Foreword
What is PPI? p4 Why carry out PPI? p6 Planning for success p8 The PPI cycle: four types of activity p10 A. Patient needs and views p12 B. Participation and co-design p20 C. Partnership in running services p28 D. Planning and monitoring p36 Involving seldom heard and diverse p44 minority groups Notes for facilitators p46 Checklist p48 Recording and reporting p50 Foreword Our commitment to our patients is to provide caring, safe, thoughtful and effective care. We have made a promise to patients that ‘we are here for you’. In making this a reality every day, for every one of our patients it is essential that patient and public opinion is heard, feedback is acted on, and lessons are learned. This toolkit has been developed to help staff to listen to and involve their patients in improving services, because patient- centred care is more effective care. Chief Executive, Nottingham University Hospitals NHS Trust 2 3

3 What is Patient and Public Involvement?
What is PPI? What is Patient and Public Involvement? PPI means putting patients and the public at the centre of all that we do. This means involving patients or the public to: Let us know about their needs and experiences Identify what they want from services Share their ideas and get involved in service design Have a say how services and plans are delivered Understand our plans and why services need to change Tell us how we are doing in delivering our promises Involving people in decisions about their treatment Understand what’s going well that we can do more of PPI helps us to be ‘here for you’ Our promise to patients of Nottingham University Hospitals (NUH) is that ‘we are here for you’. We promise patients that they will feel cared for, feel safe, feel confident in their treatment and feel that services are getting better. PPI is about listening to and involving patients and the public, so we can understand how we can best serve their needs as individuals. It helps us to be ‘here for you’ in ways they want. PPI activities already in action There is already a well-developed range of PPI activities and information available for you to access, both in our Trust and other local NHS organisations. PPI activities already in action Our 10,000 Foundation Trust public members are keen to tell us what they think about our services and plans. We have a regular programme of members’ events Our readers’ panel advises us on patient information leaflets and other publications Our Patient Partnership Group meets monthly and can comment on services, provide ‘observations of care’ (see p. 40), or can advise on other PPI activities We have a new Young People’s Forum We work closely with LINks (local involvement networks) and patient support groups We attend local community events and residents’ forums Listening to patients’ experiences of care We use patient opinion trackers to understand patients’ experience of our services. We have a monthly Trust-wide inpatient survey and one-off surveys for specific services We train volunteers to undertake ‘observations of care’ There are annual national inpatient surveys and other surveys that measure patients’ views on outpatient, maternity, cancer, paediatric and emergency services There are processes to manage and learn from patient complaints, concerns, comments or compliments In this document term ‘patients and public’ encompasses patients, carers, service users, individuals, groups and communities. Depending on what we are looking to achieve we may involve different people or groups at different times. 4 5

4 Why involve patients and the public?
Why should we do PPI? PPI is about understanding and valuing the benefits of involving patients, visitors, carers and other members of the public in the planning, development, day-to-day delivery and evaluation of health services. Effective PPI can improve patient care. By engaging with the needs and views of the people who use our services, we ensure they are at the heart of our decision making. PPI is everybody’s job As healthcare workers we are all committed to improving the health and well being of the people we care for. Involving patients in improving services is just as much as part of our jobs as delivering our professional roles. Our Trust-wide Values and Behaviours state that: Continually improving for patients is everybody’s role We can start by listening to patients PPI is a legal requirement too Under section 242(1) of NHS Act 2006 as amended by the local government and public involvement in Health act 2007, NHS organisations are required to consult and involve patients and the public: Not just when a major change is proposed but in the ongoing planning of services When developing, as well as considering, proposals In decisions that may affect the operation of services What benefits can you expect? By listening to patient views: we can learn about their needs and experiences and identify specific areas for improvement By involving patients in service design: we can ensure that our services are designed and adapted to respond better to the needs of individual patients and patient groups By running services in partnership with patients: we keep patients’ needs at the forefront of every decision we make, and allow alternative proposals to be developed By measuring how we are doing: we can see how our improvement plans and activities are progressing This toolkit has been introduced to help build confidence and capacity for Patient and Public Involvement across our services. It will not give you all the answers when it comes to liaising the patients carers and the wider public. But it can help you focus on why you should involve the people who use your services, and offer a range of methods and approaches to use in certain situations. By involving front-line staff in PPI, we can help them put themselves in patients’ shoes, reminding them that people should be allowed to influence their own care, and help them deliver care that is more consistently patient-centered. 6 7

5 Planning for success Questions to consider when planning PPI
Establish a planning team Bring together a small team of people to plan the exercise, set objectives and be clear about how the PPI is going to affect the service and influence decision-making. Answer key questions What information is required? How will the information be used? What resources are available Who will you involve What method will you use How will you prepare for the activity? Chose the right approach This should match the purpose and target audience. Check first if the information is available from current PPI activities. Develop and communicate your plans Plan your activity in detail. Plan to communicate to all those involved. Report and evaluation Consider and plan in advance how you will report and evaluate the activity. Questions to consider when planning PPI The following questions can help you to plan for successful patient and public involvement: Why use patient and public involvement? What do you hope to achieve by involving patients, carers and the wider public in a particular piece of work? Is everyone who needs to be clear about the objectives? What do you want from patients and the public? What level of involvement are you asking from them? Are you looking to understand their needs, to involve them in designing services, to get their feedback to proposals, or to measure how you are doing in delivering improvements? Are you clear about which approach to use and why? Who should you involve? Which groups of people should we engage in your PPI? Do you need their consent to present their stories? Do you need to listen to any seldom-heard groups? How will you recruit people (complaints, flyers, groups?) How will you use their views and opinions? How are you going to analyse and present your findings? Which groups of people will you share the outcomes with? How will the views of patients and the public influence your discussions and decisions about planning and services? How will you let participants know the outcome? How do you plan to feedback to the individuals who have taken part and to the broader public and colleagues? 8 9

6 The PPI cycle Four types of PPI activity A. Patient needs and views
We can use PPI across a the life-cycle of service improvement and delivery, from listening to patients views, involving them in designing service improvements, acting as partners in oversight of service delivery, and measuring how we are doing to identify new areas where improvement is needed. A. Patient needs and views Getting new insight into the needs, views and experiences of the people we serve: Patient stories Focus groups and discussions One-to-one interviews B. Participation and co-design Involving patients and the public in designing service improvements and making strategic decisions: In your shoes Experience-based design Informal consultation meetings C. Partnership in running services Giving communities a say in running our services: User and community groups Patient champions Carer groups D. Planning and monitoring Checking how we are doing and where to focus improvement efforts: Surveys Observations during care and treatment Recording and action planning A. Patient needs and views Types of PPI D. Planning and monitoring B. Participation and co-design C. Partnership in running services 10 11

7 A. Patient needs and views
What’s in this section? This includes approaches that can help us to gain insight into the needs, views and experiences of the people we provide a service to: Patient stories: to inspire and motivate change Focus groups: to explore an issue in detail One-to-one interviews: to gain insight from a broader cross section of the population When should you use these approaches? When you are looking to understand where to focus your improvement efforts To identify specific aspects of your service that work well to build on, or that doesn’t work so well we need to think about doing differently To inspire front line teams by seeing that patients’ and carers’ points of view are often very different to their own Hear about what’s gone well to give positive feedback to frontline teams 12 13

8 A1. Patient stories When is this approach helpful? Typical approach
Stories are a powerful way to bring patients’ views into the organisation. They can help by reminding us to put ourselves in patients’ shoes, and that often the things professionals think are important are not high on the patient’s agenda. Stories can either be recorded beforehand as documents, audio or video; or patients can tell their story in person. Typical approach The key to successful patient stories is to follow the patient’s lead, at their pace, listening carefully all the time. Ask for a summary of the issue and the service the patient used. Allow the patient to start the story where they want to, but try to cover their whole patient journey: How did you access the service? What info were you given? What happened as you arrived? What happened at each stage? How were you kept informed? What happened at the end? Topics to cover Set the scene What happened? How did you feel? What did you want to happen? What could we do differently? Planning guide Be clear about objectives. Do you want to remind a meeting of the need to be patient-centred, or do you need to bring to life specific patient needs to inspire service improvement. Agree patient selection criteria, for stories that create the desired impact, and to ensure you hear from diverse voices. Confirm attendance and gain the patient’s consent to use their name, photo and story in internal documents (use the consent form on the PPI resources section of the intranet) Agree how to deal with any personnel issues that come up. Listen to the patient by asking open questions, trying not to ‘justify’ or ‘yes but’, and giving them time and space to speak. Feedback what you heard and what you changed as a result. Find out about the impact of our service on the patient by asking ‘how did this make you feel?’ It’s difficult for patients to know what’s possible, but they can talk about their ideals. Ask them what they would have wanted to happen. Hints and tips Be sensitive to peoples’ emotions. Walk in their shoes In reliving their experiences patients can feel strong emotions and may need your empathy and support Feedback positives as well as issues to frontline teams Review each step of the story and think of practical ideas about how we could have made it better. 14 15

9 A2. Focus groups When is this approach helpful? Typical approach
Focus groups are a good way to explore issues in depth and to get qualitative information about patient needs and views. Groups are often focused around people of similar age, gender, race or experience. You can use them to explore issues or topics in more detail than with other approaches. Planning guide Clarify your objectives: how will the output be used, what do you already know, what new information do you need? Arrange participants. Focus groups work best with around six people of similar age, gender and beliefs. Invite people who have made complaints or accessed PALS, or hand out flyers. The discussion could take place as part of an existing group. Arrange a venue: e.g. a comfortable community setting. Plan the discussion guide, with a list of six to eight primary questions you would like answers to, and secondary questions to probe people’s responses to primary questions. Refresh yourself on the role of the facilitator, which is to help people express their views, without judging. Feedback what you heard and what you changed as a result. Typical approach You can either discuss your list of six to eight primary questions one-by-one, or have participants set the agenda, as shown here. Introduce yourself, objectives and ground rules (e.g. confidentiality). Each person introduces and says a bit about themselves and this topic. Focus group agenda Ground rules (10m) Introductions (15m) Headlines (30m) Focus ( m) Thank you (5m) Ask people to jot down headlines of two or three issues that are most important to them. Go round the room, each person raising one topic and discuss for five minutes. Ask ‘why is this important’, and ‘who else had something like this’? When everybody has spoken agree three issues to discuss in detail. Raise your questions if they were not included in participants’ lists. Discuss views about each issue in turn. Ask ‘what experience do you have of this?’ Probe: ‘could you tell me a bit more about that?’, ‘how does that work in practice?’, or ‘can you give me an example?’ Make sure everyone who wants to speak has been heard. Hints and tips You could ask an independent person from another service to run your focus group, and offer to run one for them Tape record the session, or ask a colleague to take notes If one person dominates the discussion, thank them for their energy, and ask to hear from others 16 17

10 Quantitative attitudes
A3. One-to-one interviews When is this approach helpful? One-to-one interviews are helpful in gaining insight from a broad cross-section of people. Semi-structured interviews aim to explore an issue in detail, while structured interviews are less flexible but useful in gaining qualitative feedback on an issue or service, and to get insight into sensitive issues. Planning guide Set objectives: what will the insight be used for? Do you need qualitative information to inform your planning, or quantitative data to help you make decisions? Agree who you want to hear from – 1:1’s can reach a range of groups, using interviewers who speak different languages. Choose the medium: consider the advantages of telephone (cost, reach) or face-to-face interviews (rapport, depth). Carefully plan the discussion topics and questions. For semi- structured interviews follow similar guidelines to focus groups, ensuring questions are not prescriptive. Structured 1:1’s need a balanced of open and quantitative questions. Choose the interviewer who can be from outside the service if you are looking for an independent view. Pilot and refine the questions before finalising. Compile a spreadsheet of interviewees, times and venues. Typical approach Interviews should follow a clear pattern, so participants feel comfortable. Thank you, the interview will take x minutes, it is confidential so please be as open as you can. Semi-structured 1:1s Introductions Attitudes Reasons Prioritising Introduce each topic: ‘Can you tell me what your experience has been of this topic? Probe: ‘can you tell me a little more about that’, ‘can you give me an example’. ‘Laddering’ can help probe into people’s views and motivations by asking ‘why do you think that?’ or ‘what makes you say that?’ ‘Of all we have talked about, what’s most important, and why? Thank you, length, confidentiality. Structured 1:1s Introductions Quantitative attitudes Qualitative reasons Structured 1:1’s are best when they gain a mixture of quantitative and qualitative data, e.g. asking for opinions on a series of statements then drilling into attitudes. 1. To what extent to do you agree with the statement <…>. 1=strongly disagree, 2=disagree, 3=neither agree nor disagree, 4=agree, 5=strongly agree. 2. Why did you give that answer? Hints and tips Have a very clearly defined question script and stick to it 18 19

11 B. Participation and co-design
What’s in this section? This includes approaches that can help us involve patients and the public in designing service improvements and making strategic decisions: In your shoes: setting priorities with patients and building staff ownership for delivering them Experience-based design: staff and patients working together to design service improvements Informal consultation meetings: getting public feedback to proposals, and taking the opportunity to develop alternative approaches When should you use these approaches? When you want to hear about practical things you can do to improve your services You are designing improvements to services You are considering changes to your service You want to get public feedback on proposals for changes or improvements to services 20 21

12 B1. In Your Shoes When is this approach helpful? Typical approach
This workshop approach lets front line listening directly to patients’ stories and experiences. Together staff and patients agree priorities for improvement, and co-design changes. Planning guide Firstly clarify the objectives for the event – you can use In Your Shoes to gain insight into patients’ broad experience of your service, or around a specific aspect of the service. Recruit between five and 20 patients to tell us ‘what’s it like in your shoes’? Write to patients who have written a complaint or a compliment, or hand out flyers to patients. Invite the same number of staff, invite two or three reserve staff, in case anyone drops out, or extra patients turn up. Identify facilitators: you will need one lead facilitator and one extra facilitator per five patients for group discussions. Book a quiet room with plenty of space for patients and staff to sit in pairs and work in three breakout groups. Be clear about the topics the three breakout groups will discuss, e.g. before, during, after hospital. Confirm attendees a few days beforehand. Typical approach Welcome patients and staff with a drink, and with a colour-coded name badge. Brief patients and staff separately. Remind staff to listen actively, not to try to justify or explain, then invite staff into the main room. Patients and staff pair up and introduce themselves. In Your Shoes agenda Introductions (15m) Ideals (15m) Stories (30m) Groups (45m) Priorities (15m) Pairs spend two minutes agreeing one change that would make the service ideal, on a post it note. Present and cluster into themes. Staff listen to their patient’s story. Ask ‘what happened?’ and ‘how did it make you feel?’ Write good experiences on green post-its and bad ones on red. Staff just listen and write, without justifying. Split into three groups to discuss a specific theme. Put two flipcharts on the wall: for greens and reds. Start with greens - staff present their patient’s notes, play snap to group their post-its. Once all post-its are up, for each theme discuss ‘how could we make this better?’ Hints and tips Ensure staff know their role is to listen to patients, write down what they say, and act as an advocate for their views If it’s not possible to have the same number of staff as patients, you can replace the 1:1 ‘stories’ with small focus groups of three to four patients and one member of staff Groups agree and list priorities, to present back to the group. 22 23

13 B2. Experience-based design
When is this approach helpful? Experience-based design (EBD) involves patients and front-line staff in designing service improvements based on real-life experience. This page covers one approach to EBD, for a more detailed guide to EBD visit the website in Hints and tips panel. Typical approach An EBD session typically needs a half day to cover key topics. Everyone introduces themselves and why they are here. EBD workshop Introductions (30m) Stories and emotions (90m) Improve (45m) Measure (30m) Each patient talks in turn about their story, supported by a member of staff. Write what happened on post-it notes, ask patients how they felt to map on the emotional scale as notes are stuck onto the wall chart, with photos or other stimulus. Group into themes. Planning guide Plan the workshop: set the objectives, design the agenda. Book the venue: a big room with space for breakout groups. Invite patients (e.g. who have used PALS or are members of user groups). EBD sessions work best with five to 10 patients who have recent experience of the service. Present the project to staff at team meetings, and ask for a similar number of front-line staff to attend - including senior doctors, nurses and other key staff. Develop stimulus materials: involve patients to write or video their stories (using approaches in section A) or ask current patients to create a photo diary of their experience. Source materials including the wall chart, post-its and pens. After: write an improvement plan. Track progress against it. Identify the top five issues (each person ticks their top two). Split in to groups each focused on one issue, to agree ‘what can we do to solve this – one quick win, one thing this team can solve, one thing we need help with’. Workshop wallchart Put this framework onto a long piece of paper (at least 3m long), showing the steps in the patient journey and an emotional scale. Fill this in during the workshop, highlight priorities to change and ideas to make them better. For each action - what needs to be measured to show it’s happening. Steps in the patient journey + - Hints and tips The richer the materials the better the discussions: support patients to produce video or photo stories where possible For more resources visit 24 25

14 B3. Informal consultations
When is this approach helpful? If you already have a good idea of the improvements you want to make to your service, consultations can be used to work with the public to get feedback on those ideas, to refine and improve proposals and to identify possible alternatives. Planning guide Decide which groups of people you need feedback from, and whether you need to invite specific patients, interest groups, stakeholders or to hold a public meeting open to all. Design the publicity you need to attract these people. Choose a suitable venue easily accessible by transport links with disabled access. Book refreshments and arrange seating in a horseshoe to encourage participation. Prepare an accessible presentation of your proposals and consider pre-circulating this to attendees. Select a chairperson who is perceived as fair and impartial. Ensure that the professionals attending the meeting are well briefed and are willing and able to answer questions. Typical approach The key to a successful consultation is to approach it with an open mind, looking to build the best response to the issue, not to ‘sell’ a particular set of proposals. Be clear about the agenda and objectives of the meeting and of the service design, evidenced with earlier PPI activities. Consultation agenda Objectives (15m) Proposals (15m) Feedback (30m) Alternatives (45m) Next steps (15m) Present proposals in the context of our promise to be ‘here for you’, so people feel cared for, safe and confident. Use plain English and avoid jargon. Show what will be different to today for different groups of people. Give people time to air their views with questions from the floor. Another option is to split into smaller discussion groups, to feed their findings back to the whole room. It can be helpful to first discuss what’s good about the proposals, before talking about what needs improving. Hints and tips Bring your proposals to life in different ways to make them as real and easy to understand as possible, for example with illustrations or photos Show how proposals have been developed as a response to patient needs, with evidence from PPI activities This is a helpful way of ensuring people feel the pro’s and con’s of every avenue have been explored. 26 27

15 C. Partnership in running services
What’s in this section? This includes approaches that give our communities and service users a say in how our services are run, and help us to stay patient-focused in our day-to-day management and decision-making: User and community groups: regular meetings of people who are interested in your service to provide insight into experiences and feedback on developments Patient champions: involving patients as observers at regular management meetings to ensure our decision-making is patient-centred Carer groups: creating support networks for carers, better understand their ongoing needs and experiences, and gaining feedback on proposals When should you use these approaches? When you have already established a range of patient involvement activities and now need to ensure all of your decisions are patient-centred When you want to involve your patients in continuous service improvement, rather than just one-off developments 28 29

16 C1. User and community groups
When is this approach helpful? Service user and community groups provide patients and the public with an opportunity to scrutinize your service, to ensure it is providing access to care that is in line with their needs. In addition to providing us with a forum to discuss needs and review developments, they give people a support network to share experiences, information and advice. User groups are especially helpful for people with long-term conditions who have long-term experience of our services. Planning guide Identify local groups of national organisations, like the RNIB, but also open invitations to join to the wider community, actively involving seldom-heard groups. Be willing to accept that groups have their own agenda, but be clear about what you are asking of them, and why. Agree whether NUH should have membership of the group or attend only when requested or to discuss proposals. Support the group by setting up meetings, providing meeting rooms if needed and covering expenses. Typical approach Service user groups have a dual role in providing a support network for people with specific conditions, as well as providing a forum to discuss service developments. Introduce any new members of the group, review the last meetings’ minutes and actions. Typical agenda Give patients space to talk about their experiences since the last meeting. Encourage people to talk about what’s been good before they talk about issues or problems. Encourage people to listen to each others’ experiences before they offer advice or information based on their own experience. Introduction (15m) Experiences (30m) Improvements (10m) Actions (5m) Cover any service improvements or proposals developed since the last meeting, for review and feedback from the group. Discuss and agree improvements that would be helpful, based on people’s recent experiences. Hints and tips We already engage with the voluntary sector, resident's committees and other local groups Take care not to over-consult well-established groups. Check with the PPI team whether NUH or other NHS organisations have already established a link before make contact Agree any actions to be taken. 30 31

17 Patient champions - briefing
C2. Patient champions When is this approach helpful? To ensure that all of our discussions and decisions are patient- centered it can be helpful to invite patients to attend regular service management boards, or any meeting where important decisions are taken about the service and its development. Patient champions are not expected to bring healthcare knowledge or expertise, but have a specific role to ensure that discussions, developments and decisions stay patient-centered. Typical approach Use this brief to introduce the Patient champion programme to patients and colleagues. Patient champions - briefing Introduction The Patient champions programme helps us to ensure that we consistently take patients’ needs into account in our management discussions For Patient champions Your role is as an advocate for all patients We don’t ask you to be a healthcare expert or to contribute to detailed discussions in meetings We ask just that you challenge us that we have taken patients’ needs into account in all of our discussions and decisions For hospital managers We promise patients ‘we are here for you’ and so we need to ensure we take patient’s views into account in our planning and decisions Patient champions supplement your other PPI activities, by asking patient advocates to attend your regular management meetings Planning guide Identify regular meetings where a patient presence will be helpful. Discuss the ‘Patient champion briefing’ with the meeting Chair and attendees, to get their approval. Build a bank of patients, so they can build up experience of the role without needing to attend too many meetings. Brief patients very clearly on their role: to listen to discussions, to ask for evidence that patients have been consulted and to assure that decisions are good for patients. Contact the patient for their views about the meeting, and write a report as a part of the regular meeting papers. Listen and improve: you can share learning about this and other PPI activities through the regular PPG meetings. Hints and tips Brief patients clearly about their role, so meetings flow If patients agree you can ask them to get involved in other ways e.g.. to review information leaflets 32 33

18 C3. Carer groups When is this approach helpful? Typical approach
Carers play a key role in accessing health services, and supporting people with long-term conditions, with learning disabilities, frail older people or children. Carer groups can provide mutual support, enable them to have easier access to helpful information, give them a chance to discuss issues related to caring, and give them an opportunity to raise issues of concern to help us improve our services. Groups work best when we support carers to set them up. Typical approach The carers’ group is different to the other PPI approaches in focusing on mutual support and information, with insight into how services can be improved a by-product of discussions. Introduce any new members of the group, review the last meetings’ minutes and actions. Typical agenda Give each carer space to talk about their experiences since the last meeting. Encourage people to talk about what’s been good before they talk about issues or problems. Encourage people to listen to each others’ experiences before they offer advice or information based on their own experience. Planning guide Put yourself in carers’ shoes recognising that participants may have little time or energy. When and where the group meets and how it functions should take this into account. Let carers set the agenda defining the role of the group, how often it meets and what it will discuss. Set the tone: the atmosphere of carer group meetings needs to be accepting, supportive and understanding. Mutually supportive, for carers to support each other. Introduction (15m) Experiences (30m) Improvements (10m) Actions (5m) Introduce any service improvements or proposals since the last meeting, for review and feedback. Discuss any further changes that would be helpful, based on people’s recent experiences. Hints and tips Ensure the group gives carers some time for themselves Make things happen: accept actions from the meeting, and take care to ensure that you deliver on those actions, to demonstrate to carers they are being listened to and there is someone there to support them Agree any actions to be taken. 34 35

19 D. Planning and monitoring
What’s in this section? Approaches to check how we are doing in delivering on our promises to ensure patients feel cared for, feel safe and feel confident in their treatment, and in delivering our plans for improvement: Surveys: can help determine priorities and track if services are improving over time, and whether we are delivering on specific improvement objectives Observations during care and treatment: are helpful in providing immediate feedback to clinicians on the care they are providing and supporting behaviour change Recording and action planning: it is essential to record who, what, where, when and why for each activity undertaken, using the Datix system. Agree where you want to focus your improvement efforts, set concise goals, timescales and responsibilities and be clear about how you will monitor your progress 36 37

20 Neither agree nor disagree
D1. Questionnaires and surveys When is this approach helpful? Questionnaires and surveys are helpful in providing data to see whether services are improving over time, and whether we are delivering on specific improvement objectives. They allow you to study patterns and trends and see how common certain views and experiences are. They show if a problem is happening more or less frequently over time and the types of people who seem most likely to experience it. Planning guide We already carry out a range of surveys including national surveys, local surveys and handheld trackers, which can be helpful in different situations: National surveys are regular postal surveys of inpatients, outpatients and other departments. They are valuable because they enable us to track how we are doing over time and compared against other hospitals. Local surveys are used to explore issues identified in the national patient survey or other PPI activities. Where possible we use existing questions from the national patient survey to allow direct comparison. Patient opinion trackers improve our ability to regularly measure patient experience, feeding learning back into services to drive immediate improvement. Each directorate collects the views of 50 inpatients per month using handheld devices, with a subset of 33 questions from the national survey. Making use of survey data Examine performance along the patient journey If people report more problems with certain aspects of the patient journey, it may be appropriate to concentrate improvements and further PPI activities on these areas. These could include the admission process, mealtimes, or arrangements for leaving hospitals. Compare results over time Changes in performance can be identified when surveys are repeated. It should be possible to measure the impact of any initiatives that have been introduced – both on people’s experiences and their views and attitudes. Be sure to communicate successes to staff and patients. Compare results with other organisations Comparing performance with services that are similar in terms of size, type, location or local population is likely to be more useful than national comparison. Compare results with other services in NUH By using the same questions in different surveys, results can be used to identify wards or departments that are performing better than others, to identify what’s driving best practice and adopt similar approaches elsewhere. For more information and advice on using existing survey data, contact the PPI team. To what extent to do you agree with the following statements? And how important is this to you? 1. The doctors always washed their hands Strongly disagree Somewhat disagree Neither agree nor disagree Somewhat agree Strongly agree Very important Quite important Not at all important 38 39

21 D2. Observations during care
When is this approach helpful? Point of care observations are helpful when you have a clear idea of the standard of service or care to be delivered and want to support individual services and clinicians to deliver these standards on a consistent basis. Observations can be made of clinical practice as well as values and behaviours, and can be carried out by your team, by volunteers or by patients and the public with staff supervision. Typical approach Observations of care should be carried out against set agreed standards and protocols. The observation can be done by a volunteer, observing care in a ward or unit; or by a patient. Brief the observer that we want to understand how we are doing in meeting our promise that ‘we are here for you’. Provide a one-page feedback sheet for them. Break the observation into three sections to match our ‘promises’. Refer to our values and behaviours handbook to check what service standards you should expect for each promise. Provide an opportunity to feedback their own ‘freehand’ observations, alongside a few specific questions (no more than 12 in total) using the survey style described in section A3. Service observation I feel cared for I feel safe I feel confident in my treatment Planning guide Identify elements of service or care that need to be delivered to a consistently high standard, ensure that standards are documented and teams understand what’s expected of them. Standards may cover ‘here for you’ values and behaviours to ensure patients feel cared for, safe and confident in their treatment; or may cover specific nursing or clinical protocols. For clinical standards, select observers with appropriate clinical skills, brief them on the standard expected with a form to capture their observations, and brief teams to expect them. For service standards, brief volunteers to act as observers, or ask patients before their care to act as ‘mystery shoppers’ and to complete a feedback form immediately afterwards. Clinical observation Specific clinical protocol Other observations Observations of clinical care should be carried out by appropriately skilled people, to agreed protocols and governance standards. Hints and tips Feedback quickly to clinicians, on the same day if possible so the event is fresh in their mind and they can recall what they did that was positive or needs improvement 40 41

22 D3. Recording and action planning
Writing an action plan Having analysed your results you need to decide what to do with them and where to focus your efforts. Your action plan should be clear, concise and jargon-free. Typical approach By following the consistent action planning template shown below we make it easier to monitor progress against the wide range of PPI activities undertaken at NUH. Write a clear list of improvement objectives The action plan should list the key initiatives to be undertaken, and which of the objectives they meet For each initiative list the key actions, owner, start and finish dates Update the action plan on a weekly basis Planning guide Action planning. Set your goals and objectives and divide them into manageable steps and achievable targets. Select areas for action. Stick to a few main priorities for action. Chose areas that show clear potential for improvement. Celebrate positives letting teams know what’s going well. Involve patients in planning, using tools in sections B and C. Communicate by sharing your action plan widely, including reporting it on the Datix system Monitor progress regularly and be prepared to change plans. Sample action plan Your action plan could include the following headings. Identified issue (e.g.. 25% of patients felt they were not given enough privacy when discussing their condition with a member of staff) and for each issue: Objective: what measurable difference will you make? Work required: how will you achieve this goal? Timescale: target delivery date and milestones Responsibility: who will take the lead? Who is involved? Monitoring: how will progress be measured? Links to other work: which other initiatives or teams are working on related issues? 42 43

23 Involving seldom heard and diverse minority groups
General guidance As with any PPI activity, consider your objectives carefully, listen very hard without judging, and let people know up front that everybody’s views are important. Older people Older people make up the largest single group using health services. Their wealth of experience is precious but they are often not confident in expressing their views. Building relationships with groups like age concern and patient groups can create a supportive environment. One-to-one listening in interviews or In Your Shoes events can be helpful in engaging this diverse group of people. Children and young people Often we only hear about their experiences indirectly through parents and carers. The best approaches tend to use small groups, in places where children already feel comfortable. Younger children react best to a practical focus, expressing themselves through drawings or play. Teenagers are happier to talk about their experiences, enjoy creative media projects and may be happy to join online forums. Do provide lots of free refreshments and other goodies. Refugees and asylum seekers These people may differ greatly in cultural backgrounds. Barriers to PPI can include a lack of money, or a sense of isolation and vulnerability, or language barriers. They may have specific health concerns around diet, depression, or lack of information on how to access NHS services. Focus group work with local refugee organisations allows them a voice. There are many people in our community who’s views we have not heard as much as we could. Often it is these groups who do not access services they are entitled to and often need. There are many reasons why these groups are heard less than others, and so we need to work harder to ensure we do listen to their experiences and points of view. People who find it more difficult to have their views heard or who may be more reticent to express their views can include, but are not limited to: Anyone who has had a bad experience of the service Ethnic minorities People who don’t speak English as a first language Disabled people Children and young people Older people Lesbian, gay, bisexual and trans people Victims of domestic abuse Refugees and asylum seekers Homeless people Travellers Single parents Sex workers People who work Carers Drug users Local community groups can help you engage with a range of people. The PPI team can help you contact these groups. 44 45

24 Notes for facilitators
Introductions and groundrules Briefly introduce to yourself, your role (for example to help everyone in the room to express their views and opinions on the topic) and your objectives for the session. Ask attendees to set the ground rules, which could include: Confidential and anonymity Listen to and respect each others’ individual views Participation from everyone who wants to Challenging points of view not individual people Honesty and an open attitude Agree to cover all topics, and to move on if necessary Mobiles and pagers off, or on silent. During the workshop The following prompts and questions may be helpful for people to express their views, and to move discussions along: Open: What is your experience? What happened to you? Probe: Can you tell me a little more about that? Probe: Do you have an example of that? Motivation: What is it that makes you say / think that? NB – avoid ‘why’ – we don’t want to second-guess reasons At the end, ask people to note on a flipchart what went well and what could have been better about the session. Afterwards Summarise key points of the workshop, illustrated with quotes from participants, written as people said them. What is a facilitator A facilitator is the person who moderates a workshop or focus group. Anyone can facilitate PPI provided they have an open mind, are a good listener, and are happy to hear others’ views without judging or imposing their own. The role of the facilitator The facilitator’s role is to help people express their views: To guide the discussions following the agreed agenda, and to meet the agreed objectives To encourage everyone to have a say, without judging To take care no one person dominates the conversation (thank them for their energy / enthusiasm, and ask their permission to give others the chance to air their views) To listen to others’ views, not to take over the debate and impose your own opinions on people To ask open questions rather than state opinions or facts To ensure each section runs to time, so that people have a chance to talk about all the topics on the agenda To regularly sum up discussions and to prioritise key points for feeding back in five to 10 minutes at the end Hints and tips Tape or ask a colleague to note the conversation, so you can concentrated on listening and questioning Or ask people to write their own ideas onto post-it notes, then play ‘snap’ to group them into themes 46 47

25 A quick checklist Hints and tips
Gather feedback regularly and systematically Are you clear about what you want to find out? Are you clear about how you will use the information? Have you made use of existing data e.g.. from the national patient survey or patient experience trackers? Do you know who you need to involve? Select the most helpful approach Are you clear where your activity sits in the PPI cycle, and whether you are looking to learn about people’s needs and views? (A) to design improvements or consult on changes? (B) to involve people in decision-making? (C) to monitor and measure progress? (D) Plan your PPI activity Do you have a clear implementation plan? Do you need the consent of the people you are involving, and have you downloaded the consent form? Have you planned ways to involve all of the diverse groups of people who need to use your services? Are you clear about how you will keep all stakeholder groups informed of findings and progress? Understand your findings Have you examined your feedback to identify priorities for improvement and successes to celebrate? Have you decided how to analyse your results? Consider: Aspects of the patient journey Changes – or lack of changes – over time How you compare to other services Issues reported by large numbers of patients Positives and success to build on, as well as issues Action plan with patients, public and staff Do you have an action plan with priorities and timings? Do you have support of senior managers? Have you identified some project champions? Are clinical, managerial and support staff involved? How are you involving service users in action planning? Share results widely with staff and patients Have you identified stakeholders and how to involve them? Have you developed a practical communication strategy which identifies key audiences, messages and media? Maintaining progress Are you implementing ‘quick wins’ to show progress, as well as long term changes that have greater impact? How will you measure the impact of your changes? How will you report and communicate progress? Hints and tips Maximize attendance by holding the meeting at the right time of day or by paying travel expenses Consider support and training for people volunteering to do PPI for example asking them to register as a volunteer, CRB check, induction, briefings before and after events 48 49

26 Reporting and feeding back
PPI is only as valuable as the impact it has on services, so it is essential to report on what you have learned and the actions you plan to take as a result of each PPI activity. Recording the PPI activity For each PPI activity record information as requested on the Datix risk management system including the number of people involved and the outcome of the activity. Insight and actions Describe the demographic breakdown of participants Summarise and describe the main themes, findings and contributions Include as many raw comments and data as you can Make specific recommendations for action Evaluation of the process What was the aim of the exercise What was the information collected used for What method was used and how well did it work? What lessons can be learned for further PPI? A short visual summary of learnings and actions to present to meetings or put onto notice boards Feeding back to patients and the public Feedback to people who have taken part in PPI activities to thank them, make the results available to them (unless anonymity precludes this) and let them know what is happening as a result. You can also communicate the outcomes of your PPI initiatives to the broader public, to show people that you are listening and improving. A poster is a simple way to let patients and the public know that you have listened and acted on what you heard. Hints and tips Patient insight is very powerful, so be careful about how you use it with front line teams. Be sure to communicate lots of positives, as well as improvement areas 50 51

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