Ready to engage?

1. Plan Monitor Engage Procure Commissioning for People a patient and public engagement resource What’s this? Ready to engage?

2. You’ve chosen to start engaging Click on a level of engagement on the left to begin

3. What’s with the Cow? The Newham Engagement Cow is an easy way of remembering that Engagement should be: Blue-Sky – there are no limits to your joint creativity Best Value – giving patients more for less Friendly – a smile can do more than you think!

4. You’ve chosen to find out more Good idea, let’s begin

5. What is Patient and Public Engagement? Patient and Public Engagement (PPE) is a way of 1. reviewing existing services for quality and fit 2. assessing need to narrow down the options 3. developing plans which meet local priorities 4. localising procurement decision making processes 5. managing demand by asking what works 6. achieving continuous improvement through feedback Commissioning for People

6. Plan Monitor Engage Procure Commissioning for People How does this work with commissioning? Engagement enables the Commissioning Cycle by 1. Reviewing existing services for quality and fit 2. Assessing need to narrow down the options 6. Achieving continuous improvement through feedback 3. Developing plans which meet local priorities 5. Managing demand by asking what works 4. Localising procurement decision making processes

7. Commissioning for People • What are the levels of engagement? • Inform • You offer to provide information in an accessible and open manner, but no influence over decision making, in fact the decisions may already have been made and you should state this. • Consult • You are asking a question. It may help you think about what the public considers important, which may be very different to what the needs of the service may be. • You should tell the people who you spoke to what you did with that which they told you.

8. Commissioning for People • Levels of engagement • Collaborate • You offer to work together, not necessarily as equals. However, as a group with common purpose. When changes occur they take place after open discussion, but perhaps not agreement. • You may agree to disagree, however the promise is to engage regularly and with a view to developing an effective and enduring relationship. • Partner • You offer to work as an equal. Your relationship means you are working to achieve agreed goals based on recognition of each other’s special expertise and insight. • Meetings and discussions are regular and open. Your promise is to enable shared decision making.

9. You’ve chosen a level of involvement You chose to inform Now choose a stage of the cycle Plan Monitor Engage Your contract with the public: You will provide information about your chosen stage in an accessible and open manner. You offer no influence over decision making, in fact the decisions may already have been made and you should state this. Procure

10. You’ve chosen a level of involvement You chose to consult Now choose a stage of the cycle Plan Monitor Engage Your contract with the public: You are asking a question. It may help you think about what the public considers important, which may be very different to what you had considered important. You should tell the people who you spoke to what you did with that which they told you. Procure

11. You’ve chosen a level of involvement You chose to collaborate Now choose a stage of the cycle Plan Monitor Engage Your contract with the public: You offer to work together, not necessarily as equals. However, as a group with common purpose. When changes occur they take place after open discussion, but perhaps not agreement. You may agree to disagree, however the promise is to engage regularly and with a view to developing an effective and enduring relationship. Procure

12. You’ve chosen a level of involvement You chose to partner Now choose a stage of the cycle Plan Monitor Engage Your contract with the public: You offer to work as an equal. Your relationship means you are working to achieve agreed goals based on recognition of each other’s special expertise and insight. Meetings and discussions are regular and open. Your promise is to enable shared decision making. Procure

13. A Newham Example! The Let's do something stage You've chosen inform + plan Case Study > Big Values Mini Jamboree The Trust had decided on a set of values for how it would work, the acronym being: 'CLEAR' Caring, Learning,Encouragement, Accountability and Respect. However, there was a need to inform people in the community to demonstrate how we wanted to work. Tasked with this, the PPI team came up with the Big Values Mini Jamboree. The aim was to draw out the alignment, ownership and trust of local people with the Trusts' new values and describe a planned process of sustainable constructive engagement. The event has created lasting relationships and was a promising start to a renewed commitment to working more closely with the community.

14. A Newham Example! The Let's do something stage You've chosen inform + procure Example > Open House at the Clinic Procurement is expecting to implement government reforms of key services in the coming year, however there is a low level of public awareness about the approaching changes. After consulting the PPI team, they work in partnership with existing services to present an informative half day open house for staff as well as patients. On Thursdays, the clinic runs for a half day, the latter half of the day from 12.30pm onwards is allocated for an open house event. Three parts of the Multi Disciplinary Team are each allocated a task, one team sets up computer displays using videos from the Dipex website of patient experiences. Another creates a multimedia time line showing the current service arrangement and the planned changes and a third team is tasked with publicity and incentives to identify patients interested in participating in the procurement process.

15. A Newham Example! The Let's do something stage You've chosen inform + monitor Case Study > Radiology and Open Systems The Radiology team has a regular flow of patients and regular monitoring had identified that these patients would really appreciate some information about what they are about to go through, but weren't sure what to do and so – we went along and had a chat. We suggested opening up the system, presenting what happens in picture and leaflet format, especially as some people may not have English as a first language, exactly where people could get accurate information and at the same time what was happening when they went through an MRI scanner or an X-ray machine. The team is now putting pictures on the wall and using comment cards. It will also signpost people to community support and assess what patients think about their service. However, you could use a presentation at a community forum, a community centre event or the Trust’s health pages in Newham magazine to help people get the information they need.

16. A Newham Example! The Let's do something stage You've chosen inform + monitor Example > A Patient Charter When listening to users' stories, service teams were hearing a message about a lack of clarity of information. Patients were saying that they weren't sure what they should expect from the service. This made decision making difficult for all and patients felt unclear about when they were entitled to ask for a need to be met, or not. As a proactive responsive service, the team felt they needed to come up with a solution. They came up with a Patient's Charter, describing the desirable and essential outcomes of a hospital experience. Every patient was given a copy and an explanation using their preferred means of communication. The resulting service recorded higher levels of satisfaction and a higher quality of relationships and communication between staff and patients.

17. A Newham Example! The Let's do something stage You've chosen consult + plan Example > Learning Difficulties and Primary Care Complaints data was showing a pattern of poor experience amongst people with learning difficulties. The PCT organised a Focus Group in partnership with three major local Learning Difficulties charities. Data from the Newham Health Debate, Complaints, and the Local Focus Group led to NHS Newham including a specialist Learning Difficulties service line in the Service Specification for a new Health Centre. At the time of the Newham Health Debate, 73% of people questioned said that they believed their input would be influential in shaping health services, and in a later survey by Ipsos-MORI, the public put NHS Newham first in London on listening to local people and improving services.

18. The Let's do something stage You've chosen consult + plan Case Study > Calderstones' Discussion Groups Calderstones NHS Trust is a specialist learning disabilities trust in North West England It provides long-stay services that include a range of medium-secure places for offenders with learning disabilities and others with similar needs. During a choice consultation a series of discussion groups to support planned improvements to services were set up for clients facilitated by a facilitator. The following changes have resulted in information provision: • a client’s monthly brief to develop better communication with patients during the change • a relatives’ newsletter to create a link between the hospital and the public • a revised version of “our services to you" on DVD • a day service information and awareness sessions for clients.

19. The Let's do something stage You've chosen consult + procure Case Study > Helston Birthing Unit Focus Groups We consulted two focus groups with young mothers. Fifteen mothers took part in the groups. We provided a crèche to support the first group of mothers. These mothers were part of a peer support group to help them back into education. Two of the mothers were living in hostel accommodation. This group explored what is important to young mothers in low-tech birthing facilities In the procurement phase the mothers said they valued more personal care, local midwives and a home-from-home environment. However, the changes mothers said they needed focussed on practical things, so in the new build we agreed to • install a water-birth facility • ensure there was plentiful parking and • enable mothers to have more control of lighting in the birth environment

20. The Let's do something stage You've chosen consult +procure Example > Helping People Make Informed Choices Patient choice was about to arrive in GP surgeries. However with low levels of health literacy, the question was not, would people use our service, but how can we make sure people exercise choice so that it is not made for them. The commissioning team set out to consult on and discover two things, what were the barriers to making informed choices and what were the most important things for people when they made those choices? They attended public meetings and public eventsand came up with a patient criteria for choice, during the procurement the top issues were not clinical outcomes or star ratings, but accessibility, cleanliness and respect and dignity. Consequently the team began to put information into GP surgeries which allowed patients to make choices based on their ideas.

21. The Let's do something stage You've chosen consult + monitor Case Study > Dartford Paediatric Physiotherapy Group Ongoing monitoring of the Dartford, Gravesham and Swanley Primary Care Trust had identified a staffing crisis in the Paediatric Physiotherapy Department. Services for 240 children receiving physiotherapy were at risk. We involved parents in a consultation. We explained the staff shortages and the need for re-design, discussing aims, admission conditions and structure. Two outcomes were that we decided that parents would work with their child during group sessions so that they could develop their skills and use them at home. Now that parents are involved, the groups are developing all the time with new ideas. These include a group meeting in the holidays and Saturdays so dads can be more involved. We work with eight children in one session, compared with one child earlier. We have a partnership with the voluntary sector. Recently the group organised a day for the mothers. They did this with the local college where the students learn massage and reflexology.

22. The Let's do something stage You've chosen collaborate + plan Case Study > Sussex Cancer Care Welcome Evenings At Sussex Cancer Care Centre, we carried out a collaborative mapping exercise of radiotherapy services with Seaford Cancer Support Group. Patients said they were unaware of the ‘behind the scenes’ activity in the unit. We agreed to set up welcome evenings for new patients and guests. Staff explain what will happen before and during treatment and we then have a tour of the department and demonstration. The local support group answer questions too. We provide refreshments and try to create an atmosphere where patients and their guests can be open and ask questions to enable continuous feedback so that planned future developments are patient centred. Feedback from patients and guests has been consistently good. “I can’t say I’m looking forward to the treatment, but I know now that I can cope OK.” “My wife and I would like to express our appreciation… we left [the evening] with the utmost confidence in a dedicated, professional team and the availability of the latest technology.”

23. The Let's do something stage You've chosen collaborate + plan Case Study > Cherrydown Patient Stories Cherrydown Ward in Basildon Mental Health Unit is part of South Essex Partnership NHS Trust. This is a mental health and learning disability trust that provides care for elderly patients who are mentally ill with conditions such as Alzheimer’s. The ward support workers sit down with the patients and collect stories of important life events, family photographs and anecdotes. Our staff and carers have reported that as a result of this, patients become people again. The whole experience has had a huge effect on staff morale. All staff are involved in the project. Collecting the stories is a very intimate and personal process that has had some startling effects. Patients’ stories are now included in the care planning process from the start.

24. A Newham Example! The Let's do something stage You've chosen collaborate + procure Example > the Newham Health Debate Newham ran a broad-based listening campaign called the Newham Health Debate designed to embed patient and public views in the Commissioning and Procurement of a new GP-led Health Centre and an Additional GP Practice in an 'under doctored' area. The public said that they wanted services that respected and responded to them as individuals. To further localise the data about these experiences the PCT wrote to approximately 4000 households in an 'under doctored' area to seek their views on what additional services should be offered from the new Practice and when the additional opening hours should be. This was followed up with a Focus Group and collaboration with the Patient Experience Working Group, which resulted in Continuity of Care being given additional weighting in the tender evaluation for the new GP Practice. The procurements for the GP-Led Health Centre and the additional GP Practice were subject to formal tendering and with further involvement of Patient Representatives. The newly commissioned provider is now under contract to engage and respond to the patient experience as part of the new contract.

25. The Let's do something stage You've chosen collaborate + monitor Case Study > Brent Learning Disabilities Service Standards ‘Valuing People’, sets a target for a ‘multiagency quality assurance framework for learning disability services’. In Brent, we set up a group of 15 people with Learning Disabilities. We covered the subject of ‘What’s important about services?’ looking at buildings, staff, things to do and food and drink. This generated standards that defined expectations. The board agreed these standards & the PCT uses them to monitor the performance of services. The Group consisted of people with learning disabilities who had ideas about how services should change. The communication difficulties meant sessions were recorded visually by: • plotting on a map of Brent the services people used; • using photos to identify the members of the group; • recording the minutes of each meeting in ‘easy-to-read’ format with pictures and symbols; and • producing a video about the group’s work for those who do not read.

26. The Let's do something stage You've chosen collaborate + monitor Case Study > Hull & East Riding Stroke Service Open Meetings A local stroke survivor group, Strokewatch, was lobbying for resources for stroke services. Members of the group were given an open invitation to all meetings across the acute and community service and invited to open discussions about the service’s development. These service users now collaborate to continuously monitorand influence the way stroke services are developed. Working together in this way has resulted in many achievements: • The staff feel supported by representatives from the local stroke survivor group, who are • watching and influencing the service’s growth and development. • Health records are given to all stroke patients and their families as they come through the unit • Members attend to share experiences as stroke survivors or carers with professionals. They • tell the professionals about the things that they would like them to do or not do. • Provides a continuing source of feedback to improve staff morale. • Working together to further develop the role of family support organisers.

27. The Let's do something stage You've chosen partner + plan Case Study > East Somerset's Time to Talk Group At a conference an ex-patient told us, “Nurses don’t talk to patients.”… so we asked him to help us do something about it! We set up a partnership group including staff, users and our ex-patient. The group’s task was to review how nurses gained information about patients’ needs and concerns; and plan for the introduction of a new system with good records of that information. We introduced a daily assessment for nurses to carry out. This encouraged patients to express their needs and concerns. We highlighted four main categories as a basis for assessing emotional wellbeing. The patients themselves had identified these categories. • How do I feel and what is happening to me here in hospital? • What is likely to happen to me in the future? • What problems might I or my family have when I leave hospital? All patients on the test wards have the opportunity to talk with a nurse to identify their emotional needs, we will be rolling this out across the Trust and the results have been excellent.

28. The Let's do something stage You've chosen partner + procure Case Study > The Eccles Parish Surgery Working Group When two doctors who ran a branch surgery in Eccles announced their retirement, we proposed to close it as other practices nearby agreed to take on this small group of patients. The residents of Eccles were shocked, and over 60 people contacted PALS about this. PALS passed this on to our Director of Commissioning and Partnership Development Manager, who accepted an invitation to attend a meeting set up by Eccles Parish Council. After hearing residents’ views at the meeting, we set up a partnership working group to decide the best way forward for the Eccles surgery. The group included: a council representative, a representative from the residents’ association, a Councillor and staff. It was agreed that this group would decide the future of GP services for the residents of Eccles. At the time of writing, the process is not yet complete, but Maidstone Weald Primary Care Trust is planning to continue to procure GP services to Eccles branch surgery for the foreseeable future, and people in the village are very happy with this.

29. The Let's do something stage You've chosen partner + monitor Case Study > Manchester & Cheshire Cardiac Network Video Patients waiting for cardiology procedures are often cared for on general medical wards and hospital staff may not have the background knowledge to tell patients what is going to happen. “I said to the sister on the ward – what’s happening tomorrow?, but she wasn’t sure at all.” “No-one told me what to expect when I came over to have the angioplasty done – there was not talk of it at all...” Nursing staff reported that one patient was so anxious he refused treatment at the tertiary centre because he didn’t know what he was there for. To prevent patients feeling anxious, The network decided to produce a video to provide accessible, accurate information for patients who are being treated for acute coronary syndrome. A partnership of users and staff agreed the content for the video and the objectives of the project. The producer of the video was a member of the cardiac network’s patient and professional partnership group who had undergone coronary-artery bypass surgery some years before. Patient-led research is now planned to assess whether the video has helped to reduce anxiety in this group of patients.

30. A Newham Example! The Let's do something stage You've chosen partner + monitor Example > Children and Young People’s Services Children and young people's services were being told by the Newham Youth Parliament that young people experience poor customer care and do not always feel confident that their health information will be treated with confidentiality. In response to this, Children and Young People's Services planned a service review and consultation exercise involving 70 primary school and secondary school representatives, 49 youth project representatives, 53 children's rights representatives, 25 young mayor and youth council representatives and representatives from parents and carers groups. Feedback informed priorities for the coming year as part of the annual planning cycle, and a summary of the most important issues for children and young people appeared on the London Borough of Newham website. Outcomes have included the establishment of a Young People's Board, monitoring the adoption of the You're Welcome standards, with young people as mystery shoppers working in full partnership with children's and young people's services.

31. help? help part 1: Hullo. To begin (to press the first button) you need to ask yourself some screening questions. So, to determine the level of involvement you can achieve (inform, consult, collaborate or partner) you might ask: Have any decisions already been made about this piece of work? Is this an open question or are there constraints which mean we are limited in what options or ideas we agree? Do I need help to answer the questions from a colleague? What engagement skills can I bring in from the organisation? Proceed to help part 2 >

32. help? help part 2:  Stuck? Use the five senses approach Now, the next bit is your theme, there are lots of case studies and examples here, but let’s take a new one. Let’s imagine that you work in reception and you want to do some ppe-ing but you don’t know where to start. Ask yourself what your best ever, ever experience of being received at a reception desk was like. Got it? Okay, now think about what you smelt - what you touched - what you heard - what you saw - what you tasted, okay, maybe not tasted, but all of the rest, you get the idea. Now try to make this happen in your service. Good stuff, now ask how can you make the same thing happen to every single person who comes looking for your help.

33. help? help part 3: You want more help? Well you could call the Patient and Public Involvement team. However, it’s not like Ghostbusters, we won’t arrive in a hearse with an emergency siren wearing boiler suits. It’ll be quieter. However, there are a load of ways in which you can help yourself. There are things you can use to kick start the process of thinking about what you want such as your comment cards, the national survey, and you don’t have to launch into a huge, ambitious project either. You might decide you just want to get someone from estates along to paint one of your doors a bluer shade of green. 

34. pictures for evidence Why? We think multimedia evidence is very important. It allows the viewer to take a deeper look at how and what happened. Multimedia evidence for World Class Commissioning is a powerful way of illustrating competency 3 and it serves as a useful record of your past work. Proceed to look at all the nice pictures >>

35. …we’re out there! Every year NHS Newham involves thousands of local people in fun and engaging activities designed to support local influence over NHS services. More nice pictures >>

36. …a learning organisation The team has organised Patient and Public Involvement seminars with academic and public sector speakers, from Pembroke College, the Mary Seacole Research Centre and the LSE to the Department of Health. More nice pictures >>

37. In recent years we’ve built partnerships with local and national agencies from the Radha Krishna Temple and the Hong Kong Hospital Authority, to Erewash PCT and The Health Foundation. More nice pictures >>

38. About this resource: This tool kit, was produced by the Newham Patient and Public Involvement team with borrowings from the following: 1. ‘Getting Over the Wall, How the NHS is improving the Patient’s Experience’ DH, October 2004 2. ‘“Now I feel tall”’, What a patient led NHS feels like’. DH, December 2005 3. Results from a programme of consultation to develop a patient experience statement, Final report by Opinion Leader Research for the DH, November 2003 4. ‘Creating a Patient-led NHS, Delivering the NHS Improvement Plan’ DH, March 2005 If you find this useful, or you’d like us to include examples of changes you’ve implemented in future editions of this resource, then call us on 020 8271 1416 or email: ian.mcdowell@newhampct.nhs.uk shahid.sardar@newhampct.nhs.uk