Welcome to the step-by-step guide to setting up a Patient Participation Group (PPG). The aim of this guide is to offer support and practical guidance to general practices and patients who are interested in getting more involved with their local healthcare by setting up Patient Participation Groups. 5 Each group will be individual and will reflect the unique aspects of the practice and its population. This guide will help you to get started. What is a Patient Participation Group?

Varied to suit local needs • Each group determines its own activities according to the needs of the community and the practice itself. Based on co-operation • PPGs work by building a relationship between the practice and its patients that breaks down barriers and shares information. Every PPG is unique, evolving to meet local needs. Most commonly, they work with their • PPGs can develop to influence the wider practices to offer the patient perspective on NHS, most notably the decisions that are the services that are provided. PPGs also help made on behalf of patients about the to improve communication, to encourage services that are to be available to them. patients to take more responsibility for their health and to provide practical support. Patient participation is not: NAPP, formed in 1978, is the umbrella A forum for complaints organisation for patient-led groups within • Clear ground rules are needed to ensure general practices. It helps new groups to get that PPG members do not use the PPG started and existing groups to network with as a vehicle to resolve their own personal each other. It also supports PCTs that are issues (however, PPGs often lead to a actively promoting PPGs. reduction in the number of complaints overall). Patient participation is: A doctors’ fan club Patients working with a practice to: • In order to be valuable, PPGs must have • contribute to the continuous the confidence to challenge the practice improvement of services; in line with the critical friend model. • foster improved communication between the practice and its patients; A time-consuming activity for practice staff • help patients to take more responsibility • Some effort is required to get PPGs for their health; and going but thereafter they should be self-organising and patient led and will • provide practical support and help often undertake activities that save the to implement change. practice time.

What are the benefits of a Patient Participation Group? PPGs are: Good for patients because: • Patients will be more responsible for their own health. • Patients will have a better understanding 7 and knowledge of the practice and its staff. • Patients will be consulted about arrangements for their primary healthcare before decisions are made. • Patients will benefit from improved communications with staff. • Patients will have a forum to suggest positive ideas and voice concerns. Good for practice staff because: • GPs and their staff will be able to plan services jointly with patients in order to increase their effectiveness. • They will be able to help patients with non-medical and social care issues. • They will be able to get help from patients in meeting targets and objectives. • They will have a forum to voice concerns, ideas and suggestions to patients. • They will get closer to the community for whom they care. Good for the community because: • Patients will have an organisation through which they can identify their own needs. • Patients will be able to get an idea of what is needed to improve healthcare, and make sure that the patient view is always represented. To recap: • Patients will maintain an open dialogue with GPs and other healthcare professionals. PPGs can: • Patients will have an opportunity to • offer feedback on the patient become involved in other community perspective; initiatives such as their Local Involvement • help practices to make the most Network (LINk) and their Practice Based effective use of their resources; Commissioning organisation.

• improve communication; The bigger picture • help to promote good health; • influence decisions about which The NHS Plan in 2000 emphasised the services are provided; and importance of patient and public involvement • offer practical support to the practice. so that the NHS can better shape services around the needs of patients, their families and their carers. This has subsequently been given legal force as Section 242 of the consolidated NHS Act 2006 and the Local Government and Public Involvement in Health Act 2007 place a duty on PCTs to involve and consult patients and the public in service planning and operation, and in the development of proposals for changes. This is a statutory duty, which means consulting and involving patients: • not just when a major change is proposed, but in ongoing service planning; • not just in the consideration of a proposal, but in the development of that proposal; and • in decisions about general service delivery, not just major changes. PPGs are one significant way to involve people in local healthcare decision-making. Patient Participation Groups locally and nationally Locally With growing interest in PPGs, NAPP is keen that they are allowed to develop in a sensible and measured way, with realistic objectives Each PCT will have a different local situation. and good support from both practices It is helpful to know: and PCTs. • the number of PPGs within the PCT; • what support is available to PPGs; 9 • whether there are any incentive schemes in place for PPGs or the practices; • whether there are any local case studies and information on other PPGs (perhaps a local directory); • how PPGs fit with wider strategies, including Practice Based Commissioning; and • whether there are any local champions who can advise other groups and practices. Nationally Around 40% of English practices now have a PPG (according to the NHS Information Centre, 2009). The first groups were established in 1972 by GP surgeries with very different motivations. These included giving patients a greater say, tapping into the goodwill of patients and gaining a deeper understanding of the needs of service users and carers. PPGs are not a political fad. Research carried out by NAPP in 2005 and 2007 (covering 3,600 practices) revealed that the critical success factors for PPGs are leadership from within the PPG, commitment from the practice, and the PPG understanding the ways in which the practice operates. Step 1: Getting started The idea to start a group can come from: A staff member at a surgery can: • a practice manager; • talk to the communications and engagement manager at their PCT • a GP or other member of for advice; practice staff; or • become a champion for patient • a patient or group of patients. involvement at the practice; • canvass the level of interest among patients or approach selected individuals; • approach surgery user groups (eg parent and toddler groups, screening clinics for elderly people and well women/men clinics); • contact NAPP for advice; • read the literature already available about PPGs; and • talk to other practices with a PPG. A patient can: • approach the practice manager or the practice patient and public involvement champion; • contact NAPP for advice; • read the literature already available about PPGs; • talk to other practices with a PPG; and • canvass the level of interest among other patients. Step 2: Recruiting your group Invited groups There are two main ways of recruiting members for your group: Invited groups are formed by contacting • open groups; and individuals directly who are known to the practice and its staff and who are patients • invited groups. at the practice. These patients may also be known in the community because they Open groups 11 are local parish, town, district or county councillors. They may include the parish vicar Open groups are formed from open or a local journalist. Some members of staff, meetings, which any patient may attend. You especially in general practice, such as district will need to advertise widely, giving plenty of nurses or physiotherapists, see the same notice. (Appendix 2 has a suggested patient patients regularly, or have appointments that flyer.) It may also help to offer an incentive last longer than regular GP consultations, to come along, such as free refreshments, a and so have the opportunity to have a more talk on first aid or a tour of the surgery. Make general chat with the patients while they are the invitation positive and upbeat and don’t treating them. They may identify patients forget to target the fit and healthy and those who might be interested in joining a PPG. who have not visited the surgery for some time. Here are some ideas for circulating your It is also possible to have a group which is a invitation as widely as possible: mix of open and invited representatives. Use the invited method to get things going and • posters/flyers in the waiting room and then do some open recruiting as well. around the local area; • details on the electronic message board if Here are some other ideas for contacting the practice has one; invited group members: • notes at the bottom of prescription slips • Ask staff to nominate patients they or sent out with prescriptions; have cared for who they think might be • articles in the practice newsletter and on interested. the website; • Ask staff to hand out flyers to patients • an article in town and parish magazines during a consultation if they think they and in free sheets; and might be interested. • ask staff and patients to spread the word. • Ask staff to hand out flyers during clinics and groups, such as parent and toddler groups, well women/men clinics or carers’ groups. • Approach other local community groups to share information. Remember that, whether you are recruiting • making sure that you try to contact a through the open or invited method, always diverse range of people, so that you get ask people to contact you if they want to the views of people from other ethnic attend, so that you can have an idea of how communities, the travelling community, many people are going to be at your first those with disabilities, gay people and meeting. If no one turns up you have wasted those whose first language is not English. time and resources organising the meeting It takes time to develop this wider outreach and it can leave you dispirited. If too many and PPGs will naturally grow and become people turn up you may not have enough better known over time. room or refreshments and it can be difficult to get through the agenda. You should find out in advance if anyone has special requirements such as a hearing loop or wheelchair access. Being representative A common criticism of PPGs is that they are not representative of the practice population. It is always going to be difficult to get a group that exactly reflects the demographics of the local population, and volunteer roles tend to attract those that have a certain level of confidence and free time, and have flexibility about working and earning money. However, a PPG is there to make sure that the patient voice is listened to and not necessarily always to be the voice itself. The issue can be addressed by: • being proactive about getting out into the community to canvass opinions; • targeting certain groups of people not represented on the group to find out what they think; • approaching certain representatives to join the group for a short time or for a specific purpose; and Step 3: The first meeting • the Independent Complaints Advocacy Many people who express an interest in joining the group use the first meeting to Service; or decide whether it is something to which they • writing to the chief executive of the PCT. want to commit time and energy. This applies to staff from the practice as well and so it is Use the item ‘Being representative!’ to assess important that the first meeting is as positive the membership of the group, and discuss and productive as possible. Having practice ideas for how the views of other patients not 13 staff, especially medical staff, at least at the represented can still be canvassed. Look at first few meetings shows the volunteers reviewing membership annually. present that their time and commitment are valued. Use the item ‘Next steps’ to make sure that everyone is still happy with being a member Keep the first meeting fairly short – about of the group and to address any final an hour is enough – and try to leave with concerns. some consensus of what everyone wants to get from the PPG. It is a good opportunity Agree a date, time and venue for the second for everyone, both patients and the practice, meeting, and don’t leave it more than 4–6 to discuss ideas and point out the skills and weeks, as any enthusiasm may fade. networks that they can bring to the group. Ground rules Appendix 3 has a suggested template for a first meeting agenda. This can be adapted These are important as a point of reference to suit different groups. Someone will need when the group meets and should be to volunteer to take some brief notes/action agreed at the beginning of the first meeting. points from the meeting. They should include a statement emphasising that the PPG is not a forum for pursuing Use the item ‘What don’t we want from a individual personal complaints. A reminder PPG?’ to reinforce the point that a PPG is not could initially be included in each agenda to a forum for individual complaints or for single reinforce these ground rules. See Appendix 3 issue campaigns. The correct mechanism for again for an example. dealing with these is one of the following: • the practice complaints system; • the PCT complaints manager; • the PCT Patient Advice and Liaison Service (PALS); Step 4: The second meeting and ongoing issues The second meeting • Decide on the frequency, timing and venue of meetings. It is important in the second meeting to • Decide on the quorum – the minimum address some of the administrative and number of members of a PPG who organisational issues surrounding the new must be present for the PPG to PPG. Appendix 4 has a template for a conduct business. suggested second meeting agenda that • Decide on how big a PPG you need. can be adapted to reflect the individual PPG. Some groups have a large membership Here are some of the issues that you will with a small executive committee that need to address: does most the work while others are co-opted for specific projects or will • Chairperson – manages the meetings.

turn out to support events, for example. They should be a lay member rather than Remember that there are no set rules, but a member of the practice staff. a group of fewer than six members risks • Secretary – responsible for taking becoming a clique, while one bigger than minutes and general administration. 15 would be cumbersome to manage as This role may be undertaken by a member an executive committee. of staff from the practice. Discussions, • Make plans to review these decisions, attendees and any apologies for arrangements and the PPG objectives absence should be recorded in formal but annually to make sure that everything is brief minutes. working properly. • Decide if your group is going to do any fundraising. If so, a treasurer will Ongoing development be needed to take care of funds and finances. Your PCT can help you to establish a new • Agree a first draft of a constitution or group but it can also help your PPG at terms of reference. Appendix 5 has various stages of its development. If at any some template examples. This can be stage your group feels it could do with developed over the first few meetings. some new ideas or a review to help it keep going, contact your PCT for help. PPGs can • Review the ideas about the role of your also affiliate to NAPP at a cost of just £30 PPG from the first meeting and try annually (admin@napp.org.uk). to prioritise them into a work plan, sorting them into short, medium and It might also be a good idea in the early long-term objectives. stages at least to find a ‘buddy’ group. There • Make sure that you set some good are likely to be other PPGs in your area that short-term objectives in your work plan so would be happy to help you through the early that your group gets some ‘quick wins’ stages or any difficult times (see Appendix to boost confidence. Appendix 1 has a list 6 for examples of potential problems). of some examples of roles and projects For further details contact your PCT adopted by PPGs. communications and engagement manager. • fundraising at community events, possibly Other sources of support may be available locally for established PPGs. These may in partnership with other organisations include the local Council for Voluntary such as the local hospice; Services (CVS), which can advise on funding • coffee mornings, quiz nights, golf days, etc; and other issues, the LINk, which may have • jumble sales, raffles, auctions; training or other support in place, and any local network of PPGs that has been set up. • applications for small grants; and 15 • any local incentive schemes or awards Sharing the work relating to PPGs. In order for a group to be successful, at The main reasons groups fail least a couple of members need to be very committed. However, it is important that all If PPGs fail, it is usually due to one or more of the work is not left to one person. In such the following reasons: cases, the PPG is likely to run into difficulties if this key player leaves. So, consider: • a lack of focus and commitment; • poor planning; • establishing roles and responsibilities and review these regularly; • poor communication to and from the group; • supporting members so that they can develop their skills and play a more • hostility between group and practice or active role; and vice versa; • using a rota system, eg for • relying too heavily on one or two people; or taking minutes. • poor ground rules. Funding issues A strong, well-balanced group will have a mix of the following people: It is inevitable that the group will incur some costs. These may be minimal running costs • active volunteers – people who have the for administration etc which the practice time and commitment required to action may absorb, or the greater costs of funding decisions; some of the more ambitious objectives, eg a • interested professionals – the GPs and wheelchair for the practice. Some PPGs do administrative staff who work within and not want to engage in fundraising activities know the system; and but it is worth keeping the possible funding opportunities in mind: • key supporters – people with influence within your locality, eg local councillors • a small membership fee for patients to or business people who help to raise the join the PPG; profile of the group and improve the chances of your group finding financial or other forms of support. Step 5: Communication and reporting back

Communication within This mix of disciplines allows the practice staff to gain a deeper understanding of the the group patient perspective. Between PPG meetings, it can be useful for the PPG chair to have PPGs tend to operate most effectively one-to-ones with the practice manager on if representatives from the practice, as a regular basis and/or to attend the practice well as patients, are present on a regular management meetings. This greatly adds to basis. This ideally means clinical as well the insight of the PPG – a key factor if the as management staff. As a result, up-to PPG is to be really effective. date information can be given to patients alongside greater clarity about what can be Reporting back influenced and what cannot. PPG activities should be regularly fed back to all practice staff and patients. This will allow everyone to be aware of the activities of the group and may increase involvement and interest. You will need to consider: • How will the work and the issues discussed at the meeting be disseminated to the wider practice population? Options include email, websites, newsletters and notice boards. • Are there any parish magazines or free sheets produced locally that would include regular updates on your PPG’s activities? • Would it be possible to have regular ‘surgeries’ where a PPG member(s) spends time sitting in reception to make themselves available to patients for questions and feedback? You might want to have badges made for group members so that they can be easily identified by patients. And finally… One example of a PPG Some useful links The PPG at Whaddon House Surgery Further support and advice on PPGs and on in Bletchley was one of the first to be public and patient involvement generally established in Milton Keynes. Some really can be found at the following links: positive changes have been put in place as a result of its regular meetings, including: 17 National Association for Patient Participation: • the introduction of a new appointments system, which is a considerable www.napp.org.uk improvement on the old system, with fewer patients failing to attend their Department of Health: appointments; www.dh.gov.uk/en/ • an easy to operate self-check-in system; Managingyourorganisation/ PatientAndPublicinvolvement/ • the setting up of a website, DH_085874 www.whaddonhousesurgery.co.uk, including the ability to request repeat prescriptions online; • a quarterly newsletter, which includes GP and staff profiles and seasonal suggestions on how to keep yourself healthy; and • ‘early bird’ appointment times to help people see a GP at a time that is convenient to them. The practice was one of the first to offer extended- hours appointments. Appendix 1: What can a Patient Participation Group do? PPGs are voluntary organisations. They should not be exploited, nor should they be overstretched. The list below summarises some of the activities in which PPGs are currently engaged. Groups are certainly not expected to do all, or even most, of these. Instead, they are invited to choose areas where they are most likely to succeed and which would be of most benefit to their own communities, patients and practices. Helping the practice to improve services • Providing feedback from patients, eg on appointment systems, consultation times and repeat prescription systems. • Monitoring the accessibility of practice communications, eg developing the practice booklet and leaflets and designing the website. • Carrying out surveys into a whole variety of subjects, eg measuring patient satisfaction, health needs, awareness and expectations. • Offering practical help, eg flu clinics in practices – making sure that the patients are comfortable. • Improving practice facilities, eg new toys for the waiting room, or maintaining plants and gardens. • Helping to obtain the patient view, eg for planning permission for a new-build project for practice premises. • Designing new services and initiatives, eg extended opening hours for practices. • Exploring the changing needs of patients. Offering support to other patients • Bereavement support. • Carers’ group. • Hospital visiting. • Befriending housebound patients. • Volunteer transport scheme for medical appointments. • Providing health-based social activities, eg ‘walking for health’ group, exercise classes, creating babysitting circles or trips out for older people. Providing information • Organising a health fair. • Offering handouts and support on special days, eg national No Smoking Day. • Individual patients as ‘teachers’ and expert patients with long-term conditions who could help those who are newly diagnosed, eg diabetics. 19 • Producing patient newsletters for the practice. • Ensuring that patient information and advice is as user friendly as possible. • Representing the practice locally and nationally when patient voices are needed, eg collating responses to government healthcare consultations. Arranging special health events • Encouraging health education activities within the practice. • Training in basic first aid for patients. • Training new parents to distinguish when to call for medical assistance and when to self-treat. • Increasing awareness of particular illnesses, eg breast cancer. • Increasing awareness among particular cultural groups of issues that relate to them, eg the higher risk of coronary heart disease in people from the Indian subcontinent. Representation • Acting as a representative group that can be called on to influence the local provision of health and social care. Appendix 2: Patient flyer XXXXX Health Centre Patient Participation Group Are you interested in finding out more about XXXXX Health Centre? Would you like to influence the development of local health services? The Health Centre is keen to set up a Patient Participation Group, so why not come along to discuss your ideas and hear about planned changes. The meeting will take place at: XXXXXXXX A time and date will be arranged once a number of people have expressed an interest. If you would like to come along to the meeting, or if you have any queries about the Patient Participation Group, then please contact XXXXX (Practice Manager) on XXXXXXX For suggested discussion topics see the list below. Refreshments and travel expenses will be provided.

Discussion topics at the first meeting could include: • an update on planned changes at the Health Centre; • ideas for the development of the group – what would you like to see your Patient Participation Group doing? • planning a community event at the Health Centre in the future; and • any other ideas you want to bring along about how you’d like to see the service develop and how you think patients might be involved. Appendix 3: First meeting agenda Name of group Patient Participation Group (PPG) introductory meeting Date Agenda 21 Ground rules • This meeting is not a forum for individual complaints and single issues. • We advocate open and honest communication and challenge between individuals. • We will be flexible, listen, ask for help and support each other. • We will demonstrate a commitment to delivering results, as a group. • Silence indicates agreement – speak up, but always go through the chair. • All views are valid and will be listened to. • No phones or other disruptions. • We will start and finish on time and stick to the agenda. 1. Aims and objectives 2. Welcome and introductions 3. What do we want from this meeting? 4. What do we want from a PPG? 5. What don’t we want from a PPG? 6. Being representative! 7. Next steps Appendix 4: Second meeting agenda Name of group Date Agenda Ground rules • This meeting is not a forum for individual complaints and single issues. • We advocate open and honest communication and challenge between individuals. • We will be flexible, listen, ask for help and support each other. • We will demonstrate a commitment to delivering results, as a group. • Silence indicates agreement – speak up, but always go through the chair. • All views are valid and will be listened to. • No phones or other disruptions. • We will start and finish on time and stick to the agenda. 1. Welcome and introductions 2. Group business • Election of chair, secretary and treasurer • Terms of reference • Frequency of meetings • Quorum • Annual review arrangements 3. Work plan • Review ideas from first meeting • Prioritise into short, medium and long-term objectives • Communications and reporting back 4. News from the practice • Feedback on current issues from the practice 5. Any other business Appendix 5: Sample terms of reference This PPG will: 1. contribute to practice decision-making and will consult on service development and provision; 2. provide feedback on patients’ needs, concerns and interests and challenge the practice constructively whenever necessary; 23 3. serve as a ‘safety valve’ for dealing with grumbles and complaints about the practice – representing patients but also helping them to understand the practice’s viewpoint; 4. assist the practice and its patients by arranging voluntary groups/support within the community; 5. communicate information about the community which may affect healthcare; 6. give patients a voice in the organisation of their care; 7. promote good health and higher levels of health literacy by encouraging and supporting activities within the practice and promoting preventive medicine; 8. influence the provision of secondary healthcare and social care locally; 9. monitor services, eg hospital discharge and support when back in the community; 10. give feedback to NHS trusts on consultations; 11. fundraise for medical equipment or other facilities to improve the practice and/or fund the activities of the PPG; and 12. liaise with other PPGs in the area. Appendix 6: Troubleshooting Potential problems and challenges These problems and challenges can all be overcome if they are handled in the right way. It is important that the practice takes advantage of the help that is offered to it when setting up a group. 1. Practices may fear that the group will become exclusive and that it will not be representative of the general make-up of the patient population. 2. Patients may think that by joining such a group they will experience better service from GPs, nurses and the practice generally. 3. Practices may fear that patients will see the PPG as a forum for airing any complaints they have. 4. GPs may fear that they will spend a lot of time answering personal queries or complaints rather than achieving anything positive for the practice. 5. User involvement in the decision-making process calls for cultural and organisational change on behalf of healthcare professionals. 6. It may take time for patient and practice respresentatives to develop a sense of group identification, possibly leading to an initial sense of lacking confidence or competence. 7. A PPG takes time to plan, organise and support on an ongoing basis. Do not expect a successful group to arrive on your doorstep. Overcoming difficulties 1. Beware of dominance by a group or individual. Have clear ground rules. 2. Try to make sure that healthcare professionals do not outnumber patients and that voluntary groups are not consulted at the expense of the patients themselves. 3. Try not to take anyone for granted. Use every talent. 4. Try not to take anything for granted, eg set up a formal system for communicating. 5. Ensure that patients in the group have sufficient information that they can understand so that they can make informed decisions. Their perception is important because if they are poorly informed this illustrates a need for clearer information. 6. Recognise that there will be differences in the perceptions of managers, professionals and lay representatives. Put in place mechanisms to balance these views. 7. If you want to avoid the problem of members who do not attend meetings, you should have a minimum attendance requirement built into your constitution, eg non-attendance at three consecutive meetings. 25 8. Patients should serve on the group for a fixed term. Patients who become long-term members of the panel may lose sight of the patient agenda and become too focused on the practice’s priorities and problems. 9. Remember that for some people, meetings can be daunting. The purpose of meetings should be clearly defined: • Always have an agenda. • Avoid excessive discussion about unimportant details. • Avoid the meeting dragging on. • Make meetings accessible, eg for people who work, have young children or do not have transport. • Ensure that decisions are made openly and, after discussion, decide not just what will be done but who will do it, how and to what timescale. • Agree on dates for progress, and reports for long-term projects. • Remember to set the date for the next meeting. 10. Committees: • Try not to push people into jobs they do not really want. • Do encourage people to take on roles, but recognise when they are sincerely saying no. • Avoid re-electing someone who has not been doing the job well. • Officers should not carry on for too long. Your constitution should define the length of the maximum term of each office, and also how long a committee member should serve. Thank you