Personal and Public Involvement Toolkit for Staff

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1 Persona and Pubic Invovement Tookit for Staff

2 INTRODUCTION The Southern Trust is committed to ensuring that everyone who needs to and wishes to be invoved in the panning, deveopment and evauation of its services is faciitated to do so irrespective of their earning, skis, knowedge and experience. This Tookit aims to provide staff and managers with information and guidance to enhance persona and pubic invovement within their area of service and shoud be read in conjunction with the Persona and Pubic Invovement (PPI) Strategic Pan , SHSCT (2010). Whie this Tookit does not have a the answers it does contain the basic information you need to make the best of any Service User, Carer and Pubic Invovement. It wi hep you understand why you shoud be engaging with your service users, their carers and the wider pubic on the services you provide. It wi offer you guidance on how to pan and evauate invovement activity, outine different methods of invovement and signpost you to other sources of support and training. The foowing are some quotes from Trust staff and managers on the benefits of invoving service users and carers: It has heped professiona staff to consider estabished practices from a service user perspective, and through engagement with service users, work in a more person centred way (Menta Heath & Disabiity Directorate: Deveopment of an assessment mode for signposting to person centred day time opportunities) Evauation of the current services provided, a deeper understanding of the needs of the patient and their carer (Acute Services Directorate: Review of Hospita Discharge Protocos) It aows an evauation of the service to take pace and staff can act on constructive feedback ensuring a quaity service is being deivered (Oder Peope and Primary Care Directorate: Smoking Cessation Programme) Carer invovement in the deivery of training has improved the quaity of the trraining itsef and aowed us to prioritise this statutory function (Chidren and Young Peope Directorate: Carers assessment Training for socia workers) page 1

3 PPI SUMMARY FLOWCHART Consider how to invove service users, carers and the pubic in a service panning, evauation or improvement. Seek approva if required. Compete Persona and Pubic Invovement Activity Form (Appendix 5) and make inks with PPI Team if required. Refer to Section 11 of the Tookit Decide who needs to be invoved. Refer to Section 4 and 7 of the Tookit Invove service users, carers and the pubic at the eariest opportunity. Refer to Section 5 - The Panning Process Inform service users, carers and the pubic about your project. Agree the most appropriate method/s of invovement to use. Refer to Section 6 of the Tookit Advise participants how to caim out of pocket expenses. Refer to Section 10 of the Tookit Carry out your PPI Activity Project. Coate resuts and provide feedback to a those invoved. Refer to Section 8 of the Tookit Evauate project. Refer to Section 9 of the Tookit Report back to ine manager/director on success, essons earnt etc. Forward competed PPI Activity Form (Appendix 4) to PPI Team.

4 Tookit for Invoving Service Users, Carers and the Pubic in the Southern Heath and Socia Care Trust QUICK GUIDE TO THE PPI TOOLKIT What is Persona and Pubic Invovement? SECTION 1 Why do we need to invove Service Users, Carers and the Pubic? SECTION 2 Leves of Persona and Pubic Invovement SECTION 3 Who shoud be Invoved? SECTION 4 The Panning Process SECTION 5 Methods and Approaches SECTION 6 Recruiting Participants SECTION 7 Deaing with Feedback SECTION 8 Evauation SECTION 9 Guide to Reimbursement SECTION 10 Additiona Support Avaiabe SECTION 11 Reference List SECTION 12 Acknowedgements SECTION 13 Usefu Websites SECTION 14 Appendices SECTION PPI Poster 2. PPI Leafet 3. PPI Registration Form 4. PPI Activity Form 5. Reimbursement Caim Form 6. Equaity Monitoring Form 7. Monitoring Information Leafet page 3

5 SECTION 1 What is Persona and Pubic Invovement? page 4

6 WHAT IS PPI? PPI stands for Persona and Pubic Invovement. It is a term used to describe the peope who use heath and socia care services, their carers, reatives, friends, neighbours, vountary workers, members of community groups and empoyees of vountary organisations. PPI is about giving oca peope a say in how services are panned, deivered and evauated. Trust staff can do this by deveoping good communication with their service users, carers and other stakehoders, providing them with the information they need to make informed choices about their care and to work in partnership to make decisions about service deveopment and improvement. SECTION 1 Persona refers to service users, patients, carers, consumers, customers, reations, advocates or any other term to describe peope who use Heath and Socia Care Services as individuas or as part of a famiy. Pubic refers to the genera popuation and incudes ocaity, community and vountary groups and other coective organisations. Individuas who use heath and socia care services are aso members of the genera pubic. Invovement means more than consuting and informing. It incudes engagement, active participation and partnership working. A service user is Anyone who needs ong term care or support from oca heath, socia services or housing or who uses services intensivey for a short period of time. (Better Care Higher Standards Department of Heath Juy 2000). A carer is Someone who, without payment, provide hep and support to a famiy member or a friend who may not be abe to manage without this hep because of fraity, iness or disabiity. (Caring for Carers Recognising, Vauing and Supporting the Caring Roe, DHSSPS Jan 2006). Invovement is everyone s responsibiity. It shoud not be a random activity. It shoud be a process with a purpose. Staff who work within the Southern Heath and Socia Care Trust shoud invove service users as part of their everyday practice in communications regarding their care and treatment or the deivery of the service they receive. page 5

7 This means that staff shoud discuss with service users and carers: Service users ideas for their heath, care or treatment The Trust s pans Service users experiences of services The Trust s experiences What aspects of services may need to change What service users and carers want from services and staff How to make the best use of resources How to improve the quaity and safety of services. SECTION 1 Invoving service users in pans and decisions about their specific care and treatment needs is part of PPI. However in some cases where a service user is unabe to become invoved due to a specific medica condition or other circumstance, a carer or famiy member can often represent views on their behaf. Carers shoud aso be invoved in their own right as they too can provide vauabe feedback on their experience of our services. In addition to service users and carers, PPI is aso about invoving oca communities or the genera popuation where the issues are of broad pubic concern or interest such as the ocation or nature of oca services, in specific service improvements, reform and modernisation or Best Care, Best Vaue proposas. Throughout this Tookit the term service users, carers and the pubic is used to refer to current or former users of Heath and Socia Care Services as individuas, famiy, groups or organisations. page 6

8 SECTION 2 Why do we need to invove Service Users, Carers and the Pubic? page 7

9 WHY DO WE NEED TO INVOLVE SERVICE USERS, CARERS AND THE PUBLIC? SECTION 2 There are many reasons why it is important to consut and invove service users, carers and the pubic. Apart from the fact that it is good practice and evidence based, it is now a statutory requirement. From 1 Apri 2009, the Heath and Socia Care (Reform) NI Act 2009 paces a new duty of pubic invovement and consutation on a heath and socia care organisations and some specia agencies incuding NI Guardian Ad Litem, NI Bood Transfusion Service and NI Medica and Denta Training Agency. Good service user invovement is a vita eement in the Trust s Reform and Modernisation Agenda, its Quaity Agenda and the drive for continuous improvement. It is the vision of the Trust that enhancing the invovement of service users, carers and the pubic in the panning, deveopment and deivery of services wi achieve the foowing: Increased Ownership and Commitment by individuas and communities to finding new ways to address the diverse needs across the area Increased Sense of Sef- Responsibiity for our own heath and socia webeing and for taking action that can prevent i heath and address the wider determinants of heath Responsive & Appropriate Services that are needs ed and focused on the priorities of the service users, carers and the pubic Hep in Priority Setting & Decision Making across a diverse and often competing range of priorities. Increased Compiance with agreed treatment and care pans, resuting in more effective outcomes for a parties Hep in Tacking Heath and Socia Webeing Inequaities where we can gain a better understanding of the circumstances and particuar needs of marginaised groups and communities Increased Leves of Service Satisfaction for service users, carers and staff Increased Staff, Service and Carer Morae and feeing of sef worth. page 8

10 PPI can reay change the experience of services and the quaity and safety of care service users receive. By invoving service users, carers, oca communities, and the wider popuation in debates and decisions about how we provide services, we can ensure that services are effective and meet the needs of those who use them. SECTION 2 page 9

11 SECTION 3 Leves of Persona and Pubic Invovement page 10

12 In estabishing a Framework for PPI the Trust has identified Five Key Leves of Invovement across the Organisation SECTION 3 These are as foows: Leve Leve 1 Individua Leve 2 Evauation of Specific Services Leve 3 Deveopment of New Services Leve 4 Directorate and Strategic Leve 5 Corporate and Overa Direction of Trust Exampes of Invovement Service users are directy invoved in the panning, monitoring and evauation of their individua care or service either at home, in the hospita or in the wider community eg. Individua Care Pans. Service users, their famiies, carers and the community are invoved in evauating the provision of care and quaity of services provided eg. exit pos, satisfaction surveys, questionnaires. Service users, their famiies, carers and the community are supported to infuence and shape the panning, deveopment and deivery of services on specific issues or areas eg. service deveopment, service improvement, Best Care, Best Vaue proposas etc. Service users, carers, and communities are activey invoved in strategy deveopment, incuding needs anaysis, panning, commissioning and action that wi resut in changes to significant areas of service deveopment and provision eg. PLIG (Protect Life Impementation Group), Wraparound. Service users, carers, communities, stakehoders and partner organisations are activey invoved in shaping the corporate and organisationa priorities and the overa direction of the Trust eg. PPI Pane, Non Executive Directors page 11

13 Within each eve of invovement there are a number of eves of engagement and this is very ceary defined by Wicox s diagram of The five eves of Community Engagement. SECTION 3 The aim of your engagement is to stay at the top right hand area of the diagram above, so that the engagement enabes you and service users, carers and the pubic to decide and act together when it comes to decision making. Beow are some exampes that iustrate PPI activity at the five different eves across the Southern Trust: Exampe of Leve 1 Individua Chidren and Young Peope s Directorate Corporate Parenting Division: Short term Residentia Care page 12

14 Each young person has an Individua Deveopment Pan which sets miestones to hep them to grow and deveop in five basic areas. The young peope are activey invoved in agreeing the goas for their individua pan and for the work to be undertaken and achieved. Young peope participate and work hard to achieve their goas and because they are activey invoved in negotiating the pan they take ownership of it. The young peope are given feedback and see where their suggestions have been incorporated. SECTION 3 Exampe of Leve 2 - Evauation of Existing Services Menta Heath and Disabiity Directorate Learning Disabiity Division: Appeby Socia Education Centre At each Service User Review, carers and service users have the opportunity to evauate the service they have received over the previous year and to comment on any changes they woud ike to see or issues that have arisen. Annua questionnaires are aso sent out as part of the Quaity Assurance Strategy. Issues from the feedback are then fed into the system for action. This gives Appeby S.E.C. the chance to effectivey measure the degree of satisfaction fet by service users and their carers and aso invove them in future panning. The Centre aso has a Cients Committee which meets reguary to discuss current issues and topics. page 13

15 Exampe of Leve 3 Deveopment of New Services Acute Directorate Maternity and Integrated Women s Heath: Upift Programme SECTION 3 This project was set up by breastfeeding mothers to promote and support the uptake of breastfeeding. These mothers have been trained and through a free phone hepine can support breastfeeding mothers in the Southern Trust area who experience probems. The counseors/peer support workers aso attend Breastfeeding Support Groups across the Armagh and Dungannon ocaity to support the heath professionas who faciitate the groups. Those who have undertaken the training have benefited greaty from this persona deveopment opportunity and have advised that their sef-esteem and confidence has increased. A number of the mothers are considering furthering their education. The project has been so successfu that a waiting ist has been deveoped of mothers wishing to be trained as breast feeding support vounteers. Feedback is provided to service users on the impact of their invovement at monthy meetings with the counseors. Service users are recruited through the oca Breastfeeding Support Groups. The Breastfeeding Support Groups and the Upift Workers endeavour to reach out to the ethnic minority groups and ow-income groups. page 14

16 Exampe of Leve 4 Directorate and Strategic Deveopment Oder Peope and Primary Care Directorate Promoting Webeing Division: A Ireand Traveer Heath Study (AITHS) Our Gees SECTION 3 This project produced a detaied study of the heath status and heath needs of Irish Traveers a over Ireand. The study was for, with, and by Traveers who were trained as peer researchers by a oca coordinator who attended training sessions provided by University Coege Dubin (UCD). Data coected through the study was coated by UCD as A Ireand Data and used to infuence poicy, strategies, service deivery and eventuay to improve the heath and webeing of the Traveer community. This study coud not have been undertaken without the invovement of Traveers and working together on the project has further improved reationships and increased understanding between Traveer famiies and the Traveer Support Workers within the Southern Trust. page 15

17 Exampe of Leve 5 Corporate and Strategic Direction of the Trust Oder Peope and Primary Care Directorate Promoting Webeing Division: Protect Life Impementation Steering Group (PLIG) SECTION 3 The Southern Heath and Socia Care Trust has estabished an Interagency Protect Life Impementation Group (PLIG) comprising representation from the Southern Education and Library Board (SELB), Poice Service NI (PSNI), Northern Ireand Housing Executive (NIHE), Churches, oca community and vountary sector groups, District and Borough Councis as we as key Trust, Pubic Heath Agency and Heath and Socia Care Board staff. The Protect Life Impementation Group s purpose is to deveop a common framework for action across community, statutory, vountary and private sector partners that wi resut in a more co-ordinated approach to ong term, sustainabe action targeted at reducing the incidence of suicide across the Southern area. It ensures the invovement of a stakehoders in the panning, impementation and monitoring process with a particuar emphasis on the community/vountary sector. page 16

18 SECTION 4 Who shoud be Invoved? page 17

19 WHO SHOULD BE INVOLVED? In order to have a meaningfu invovement process that ensures maximum benefit, you need to think carefuy about who the key stakehoders are or wi be. Stakehoders are any person, organisations or agency affected by and invoved in the issue, or having a specific interest in the issue under consutation. (Rura Community Consutation Manua). SECTION 4 Questions you may want to ask yoursef incude: 1. Who wi be impacted upon by the issue for consutation? 2. Which sections of the popuation wi be affected? 3. Are a the reevant stakehoders affected in the same way and/or to the same degree? 4. If so, shoud the engagement process change for different groups? Stakehoders you may wish to invove may incude: Patients, service users and where appropriate, their advocates (current, past or potentia) Carers and their representatives Staff and their representatives Loca peope, oca community groups and informa groups Representative vountary and community organisations Individuas, incuding the sient voices who are not represented by any group Leaders of opinion, such as counciors and MLAs Patient Cient Counci; other Heath and Socia Care Organisations The wider pubic, as potentia users of heath and socia services Trust Vounteers Other statutory organisations. page 18

20 How can I contact those who need and wish to be Invoved? Once you have agreed who your main stakehoders are, it is usefu to deveop a database of contact detais. The PPI Team has deveoped a corporate poster, eafet and registration form to assist you with this. Copies of these resources can be found on the PPI section of the Promoting Webeing Website or on the intranet and aso at Appendices 1, 2 and 3 of this Tookit. SECTION 4 The Have Your Say poster and eafet can be dispayed in your area of work to et your stakehoders know that they can become invoved if they wish. The registration form has been designed so that you can record detais of service users, carers and members of the pubic who are interested in being invoved; their reationship to the Trust, how they woud ike to be invoved and any support needs they may have. This wi assist you to deveop a database from which you can draw when you are reviewing poicies, procedures, faciities or services. Your oca Promoting Webeing Team may be abe to assist you with identifying reevant community and vountary groups. This information is aso incuded in your Directorate PPI Baseine Report which can be found on the PPI section of the Promoting Webeing website info or on the Trust intranet. Further information on recruiting participants can be found at Section 7 of this Tookit. page 19

21 SECTION 5 The Panning Process page 20

22 THE PLANNING PROCESS In order to ensure effective engagement and meaningfu invovement, you must undertake a thorough panning process. The PPI Team are avaiabe to hep and support you to pan. The foowing are points you shoud consider during the panning stage: SECTION 5 What are you doing and what do you want to achieve? What are your specific aims and objectives? What are the key steps needed within the invovement process? Who do you need to engage with? Where wi you find them and how can you contact them? How can you engage with them most effectivey? What are the timeframes for competion? What are the possibe barriers to the invovement process and how can they be overcome? Can you benchmark against any other organisations or earn from others who may have aready competed simiar work? What information wi you need to provide? Does this information need to be in different formats to suit the needs of the different stakehoders? Are interpreters needed, either for Back and Minority Ethnic (BME) communities or the deaf community? Is the venue accessibe for a participants needs? Is the venue accessibe by pubic transport, and if not can aternative transport arrangements be made? How do you intend to monitor and evauate the process? How wi you provide feedback appropriatey to a invoved? What difference wi it make? It is crucia during the panning stages that appropriate eves of invovement are agreed. These can then be impemented using the methods and approaches shown in this Tookit. page 21

23 Getting Started Estabish a Panning Team Bring together a sma team of peope who are important to the exercise. It is essentia to have objectives and to be cear how the invovement is going to affect the service and infuence decision making. SECTION 5 Consider the foowing questions when panning a PPI Activity What information is required? How is the information going to be used? What resources are avaiabe? Who wi you invove? What method/s wi you use? How wi you prepare your team? Choose the right Approach Your method/s of consutation or invovement shoud match both your purpose and your target audience. This shoud fow directy from your panning. Communicate your Pan and Prepare your Team Consider how you wi communicate your pans to everyone invoved and throughout the organisation. Evauation Consider and pan how you wi evauate the process and provide feedback to a invoved. page 22

24 SECTION 6 Methods and Approaches page 23

25 METHODS AND APPROACHES Service users, carers and the pubic may wish to express their views in different ways and wi be comfortabe doing so in a variety of settings. The invovement of service users and their representatives can take many forms. Using a range of approaches wi increase opportunities and give more peope a chance to be invoved. Service users, carers and the pubic may be concerned with genera heath and socia care issues, they may be focused on a specific area of service or they may be interested in both genera and specific issues. SECTION 6 Service users, carers and the pubic may aready be invoved with the Southern Heath and Socia Care Trust through a community or vountary group, as a member of a Service User/Carer Group or as a representative on one of the Trust s Panning Groups. Before choosing a particuar method, a number of issues have to be considered: What is the nature of the service? What are the needs and capacity of those invoved? What information is required? How wi the information be used? How much time is avaiabe? What resources are avaiabe? It is important not to rey on a singe method of invovement. Different methods of invovement taiored to suit your service user and carer popuation can work we together and provide richer more in depth data. This section outines a range of methods and approaches that can be considered when invoving service users, carers and the pubic. They are arranged in sub-sections that reate to the five eves of Community Engagement on page 12. Practica guidance, a checkist of pointers and a ist of advantages and disadvantages are highighted to hep you make your choice. The subsections are: 1. Giving Information 2. Obtaining Information 3. Forums for Debate 4. Participation 5. Partnership. page 24

26 SECTION 6 1. GIVING INFORMATION Leafets, Newsetters and other written documents It is important that service users, carers and the pubic receive and have access to good quaity accessibe information. The information can reate to what they can expect from the service they wi receive; information about how to access services; improving understanding about conditions or issues reating to the service, how to make a compaint and so on. You shoud aim to ensure that a service users, carers and the pubic have the information that they want at the time that they need it, and that the information is cear and reevant to their needs. How newsetters, eafets and documents ook and the information they provide have an impact on how the Trust is perceived by the peope using our services and by other stakehoders. It is aso good practice to invove service users, carers and the pubic to hep produce the information if possibe, or if not you shoud test the draft information with them before it is finaised. You shoud consider the needs of your target audience when producing eafets and written documents. You wi need to consider the specific needs of the foowing groups of peope: Back and Minority Ethnic (BME) Traveer Community Peope with a Learning Disabiity Peope with a Visua Impairment Chidren and Young Peope Oder Peope. Think about anguage; iteracy eves; the use of pictures, signs or iustrations to hep understanding. Do you need to use arger font? A usefu document to hep raise the standards of basic information provision is The 5 C s of Information Provision which can be found at page 25

27 GIVING INFORMATION Leafets and Written Documents Leafets and/or other written documents may be used as a starting point in a consutation. The ists of advantages and disadvantages beow can hep you decide whether or not they are appropriate for your particuar purpose: SECTION 6 Advantages It is an opportunity to outine the organisation s position It is an accepted way of disseminating information It is an opportunity for the organisation to make a statement It can hep buid understanding of the organisation It can keep the pubic informed and aware of issues It is a record of the organisation s position at that point in time. Disadvantages A document becomes outdated quicky There is no guarantee it wi be read The anguage may not be appropriate for the reader On its own a eafet or document is unikey to bring about rea change. Newsetters A newsetter can be produced for service users, carers and the pubic, as we as for staff. It can be a good method of creating awareness, especiay if circuated on a timey basis. Advantages Newsetters are visuay appeaing They are a reativey inexpensive way to target seected groups They can provide a wide coverage - opportunity to reach a arger audience Disadvantages Newsetters can be timeconsuming to edit and produce They can be costy if in coour or using images/photographs They are a method of giving out information, rather than engaging in diaogue page 26

28 SECTION 6 Advantages Staff can earn new skis and may increase their awareness of oca heath issues and pubic invovement work Loca peope can be encouraged to contribute artices or become invoved in disseminating the newsetter, thus promoting invovement and ownership. Disadvantages Newsetters are not aways read by target audience They can be seen as junk mai. Points to consider Is this the best way to give information to the peope you need to engage with? The proposa or the issue outined in a document shoud not be presented in isoation. It shoud be foowed up with an action pan or an indication of the next steps. Ideay a document shoud be tested with a range of peope from the target audience before it is pubished A consutation document shoud be foowed by a fina document outining the changes that have been made as the resut of the invovement and consutation and the next steps Information must be accurate, accessibe, understandabe and targeted Are you cear about who the audience is and how to reach them? It is important to give the correct amount of information not too itte and not too much The document is part of the process, not the process itsef The production of a cear readabe document is a speciaised resource intensive task Have you invoved service users and carers in the design of the document? page 27

29 Checkist - Leafets, Newsetters and other Written Documents It needs to ook attractive Is it written in pain Engish, is it jargon free? Do you need to produce a summary? Do you need either the main document or the summary transated? Do you need to consider other media eg. audio, CD, DVD, Braie? Obtain service user feedback on content to ensure information is easiy understood use your PPI database membership. How is it to be distributed? Do you need posters to te peope about it? If it is a Newsetter, have you asked oca peope to contribute artices? Wi you use oca or community media to advertise it? Woud buit-in response forms be a good way to get feedback? Is the format and ength suitabe for the target audience? Do you need a gossary? SECTION 6 GIVING INFORMATION Exhibitions, Campaigns and Presentations This method incorporates a number of toos such as presentations, posters, eafets and other visua information which can be used to disseminate pans and engage in consutation. This approach enabes communication and information to be shared in both directions from the service provider to the patient/ service user and aso from the patient/service user to the service provider. This can be an effective way of conveying information and informing the pubic. It can be used on a one off or imited basis as in part of the consutation process eg. with the Portadown Community Care and Treatment Centre or it can be used as part of a promotiona campaign. If promotiona campaigns are run over a period of time they can increase audience participation and improve awareness. An effective method of engaging with patients, service users, carers and the wider pubic is to make dispays interactive. For exampe with smoking cessation, staff get peope invoved by testing their carbon monoxide eves. page 28

30 SECTION 6 Checkist - Exhibitions, Campaigns and Presentations Is the purpose of the event cear to everyone invoved at the outset? Is the site reevant to the ocaity of the services? Is it where oca peope go? Is it easiy accessibe? Has an individua been given responsibiity for preparing and coordinating information for the event? Do you need a eafet or other handouts? Do you need interpreters? Can the event be eft unattended- if not, do you need a rota? How wi the event be advertised? Are staff and service users we briefed? Are there other providers whose expertise can be used eg. Promoting Webeing staff or those from other teams? How wi the messages from the pubic be deat with and acted on? How wi you formay evauate your event? 2. OBTAINING INFORMATION Informa comments/feedback Ensure that those who use your service are aware that they can make informa comments about their care or the service they have received and that this can be done by simpy taking to a member of staff. Make sure your staff are aware of this too. OBTAINING INFORMATION Suggestion Box Service users, carers and the pubic may want to write down some suggestions for how the service or care that they have received can be improved. This can be done anonymousy and posted in a suggestion box. Ensure the ocation of suggestions boxes are ceary marked and are visibe and accessibe to service users. It is aso usefu to get feedback on what service users ike about the service so that you get a baanced picture. page 29

31 OBTAINING INFORMATION Comments and Compaints These are a simpe way of aowing peope to provide feedback in an anonymous way but can reay impact upon your service deivery. It wi enabe your service to gain a true picture of how your services are experienced by your patients, service users and carers. SECTION 6 Service users, carers and the pubic may want to make a comment or suggestion for improvement, te us what was good about their experience, or make a compaint about any of our services. Staff shoud advise service users and carers who are unhappy with any aspect of our services to et them know immediatey. If they do this and are sti not satisfied, staff shoud advise them to express their concerns in writing, by teephone or by arranging an appointment with the reevant Patient/Cient Liaison Manager (Compaints and Comments Officers): Menta Heath and Disabiity Te: Oder Peope and Primary Care Te: Acute Services Te: Chidren and Young Peope Te: Comments, suggestions, compiments or compaints shoud be made initiay to the Centra Reporting Point for compaints. The address is: Centra Reporting Point Beechfied House Craigavon Area Hospita Portadown Teephone: Staff shoud refer to the Trust s Poicy on Managing Compaints and User Views, which can be found on the intranet. page 30

32 SECTION 6 OBTAINING INFORMATION Questionnaires* Questionnaires are a we-estabished approach used for capturing information where participants are asked a standard series of questions. Questionnaires can be used for obtaining background information as part of an evauation process and seeking opinions when deveoping services. Types of Questionnaire Posta Internet/emai Semi-structured - as part of an interview Exit Po - questionnaires issued after using a service. Advantages They can be used to seek information from arge numbers of peope They enabe a participants to be asked a standard set of questions They gather views on a range of issues whie the resuts can be made avaiabe reativey quicky The same approach can be used again in the future, to keep track of any changes that may have occurred. Disadvantages Whist surveys are an exceent way of reaching a arge audience, response rates can be ow Uness patients reay want to have their voice heard, they wi not return questionnaires. It is important to send out stamped addressed enveopes or use the Trust s freepost service (Contact Support Services to arrange) Peope may interpret questions in different ways. This is why it is essentia to piot the questionnaire. Points to remember when deveoping questionnaires Incude open and cosed questions this ensures that information can be used to deveop a statistica anaysis whist at the same time aowing participants to expand on their views Make sure you know your target audience before you produce the questionnaire. Are you targeting a specific set of service users, patients page 31

33 or carers or is it aimed at a those who use your service? Piot the questionnaire before you send it to a wider audience. This wi hep to eiminate miseading questions and ensure that the questions are interpreted in the same way Wi this be a stand-aone survey or be used as part of a range of invovement methods? This decision needs to be made at the start, as it wi dictate how ong the questionnaire wi be. This is aso important to bear in mind when deciding on the target audience Have you considered the needs of hard to reach groups? Do you know if any of the peope you wi be surveying have a disabiity or do not speak Engish as their first anguage as their needs wi need to be further expored? SECTION 6 Checkist - Questionnaires What do you want to find out? Who is the target audience? Do you need hep with sampe size/representation? How wi the questionnaire be distributed and coected in person, e-mai, website, posta? Who wi decide on the questions? Who wi do the data anaysis? Wi you need outside hep for this? Wi the information be of any use if there is a ow response rate? Wi you send reminders? How wi you feed back outcomes to the respondents? Wi you need or be offering transation or interpreting services? *For further information pease refer to the fact sheet on Questionnaire Design which is avaiabe on the User Invovement - PPI Section of and on the intranet. page 32

34 SECTION 6 Interviews Interviews may be semi-structured or structured. What is a semi-structured interview? This approach aims to obtain feedback on a service or expore a particuar topic by aowing the interviewee to highight issues and consider his or her own feeings and concerns. This can be carried out face-to-face or on the teephone. The interviewer aims to cover a range of pre-set topics, instead of asking the interviewee to answer specific questions from a imited range of possibe answers. What is a structured interview? This is where the interviewer asks a number of pre-determined questions and aocates the answers to one of a pre-determined set of possibe responses. Interviews may be may be a face-to-face or conducted by teephone. Care must be taken to ensure that the information gathered wi hep inform staff of what is good about the service and what needs to be improved. Advantages Obtains reevant information Targets specific respondents: good popuation cross-section The structure aows comparison Aows freedom to expore genera views and perceptions in detai Can use staff from other areas of work or from externa organisations to undertake the interviews. This makes the process more independent and can encourage participants to be more open with their views Can be a usefu method for gathering information on sensitive issues/topics. Disadvantages Interviewing skis required Need to sampe enough peope to generaise resuts Expertise in preparing questions required so they are not prescriptive May be difficut to secure commitment from staff, from other areas of work or externa organisations Data anaysis ski is needed for quaitative data Can be costy, time consuming and resource intensive. page 33

35 Points to remember Be cear about what you want to know Do you want to coect comparative data as we as expore experiences and views in a ess structured way? If so, is this the right method? How much time, capacity and resource do you have? SECTION 6 Checkist - Interviews Who wi prepare the framework for discussion? What are the key points to cover? Wi interviews be face to face or by phone? Where wi the interviews take pace? Do you require interpreting or transation? Who wi do this? Wi you need outside hep for this? Who wi carry out the interviews? Have they the necessary skis/ training? How do you recruit the interviewees? How many interviews do you need to do? How wi you anayse the data? How wi you present feedback? page 34

36 SECTION 6 3. FORUMS FOR DEBATE Pubic Meetings / Annua Genera Meetings (AGM)* This is an event where an open invitation has been issued. There may be a set agenda or the discussion may focus on issues raised by those attending the meeting. If you contact your ocaity Promoting Webeing Team they wi be abe to provide you with a ist of community and vountary groups in your area. These groups can be a usefu vehice for making initia contact with the community. Venues shoud be accessibe to peope with disabiities and auxiiary aids, eg. Induction Loop systems may be required. *For more information on how to organise a Pubic Meeting, pease refer to the PPI Fact Sheet on Organising an AGM which is avaiabe on the User Invovement - PPI Section of and on the intranet. Advantages Opportunity for a wide range of peope to comment or raise issues PR vaue - the ony pubic debate on the issues may have been through the media Provides an opportunity for joint consutation eg. working with other heath and socia care organisations and oca authorities on issues of common interest Offers opportunity for pubic to chaenge issues directy which increases accountabiity Provides an indicator of probem areas and oca issues that may not have emerged previousy. May provide a good indicator of where to focus attention in future. Disadvantages There may be a ow turn out Can be a risky approach you have no contro over who attends or what might happen eg. individuas caiming that they are the voice of the peope The audience may be hostie May ony attract interested parties/ obby/pressure groups etc. Takes organisation which costs time and money eg. Ha hire Advertising PA systems Refreshments. page 35

37 Checkist - Pubic Meetings / AGM S What do you hope to get out of the meeting? What wi peope take away from the meeting or do as a resut? Who do you hope to attract? What are the eves of interest out there? When is the best time to hod it? Are you giving peope enough notice? Where wi you hod the meeting? Is the venue avaiabe and easiy accessibe? Who are your speakers? Wi they attract an audience? What can you do to promote the meeting? How can you use the event to promote your messages? SECTION 6 FORUMS FOR DEBATE Focus Groups* A focus group can sometimes be described as a group interview. A sma group of individuas, between six to ten peope with simiar backgrounds or experiences are brought together to discuss a specific topic. It is usuay best to have a skied faciitator to chair the process and record comments and views, whist remaining independent. Individuas are encouraged to interact by exchanging and commenting on one another s experience. Focus groups are usefu methods of taking forward the views and experiences of service users, carers and the wider pubic, and using this information to hep redesign services. A focus group differs from a pubic meeting in that specific attendees are invited, argey due to a specia interest or their expertise in a particuar area. page 36

38 SECTION 6 Advantages Good method to test proposed service changes Reativey ow cost per respondent Opportunity to inform participants prior to participation Can be arranged at reativey short notice Good for exporing issues imited to the experience of one sma group of the popuation, or users of a particuar service or interest group Can eicit views of those who think they have nothing to say Can bring simiar peope together - coud meet up again or deveop into a support group Aows a framework for discussion, but content emerges from interaction of group members Skied faciitation can hep a views to be heard Can empower participants. Disadvantages Groups may inhibit some members - need good faciitation to overcome this Does not generate evidence as such Confidentiaity: need group rues at the start May need to hod a number of groups to vaidate findings between groups. page 37

39 Checkist - Focus Groups What criteria do you use for seection of participants? How wi you recruit participants? Is this method appropriate for the subject matter? Is the sampe appropriate? Who wi faciitate? Are they trained? Are they independent? How much money can you spend? Can you offer any incentives? Have you agreed ground rues? What questions shoud you ask? What eve of information do participants need? How ong shoud each meeting ast? Have you taken account of everyone s needs? What wi you do with the feedback? How wi you evauate the process? How wi you feedback the outcomes? SECTION 6 *For further information pease refer to the fact sheet on Focus Groups which is avaiabe on the User Invovement - PPI Section of and on the intranet. FORUMS FOR DEBATE Service User Groups* Service user groups are groups of peope who meet to discuss a particuar project, a specific issue and/or to advocate on behaf of other service users. The structure of service user groups can range from informa with very itte in the way of management arrangements to quite forma where the group becomes independenty constituted. The nature of the group wi depend on its purpose and why it was set up. Service user groups can be an effective way of gathering views that have the potentia to infuence service design and deivery eading to a more responsive, effective service for those who use it. page 38

40 SECTION 6 Advantages Aows very specific focus on a particuar service Group members can be we informed Opportunity for detaied discussion Groups are norma highy motivated Potentia to infuence service design and deivery. Disadvantages Quaity/accuracy of feedback to the wider group that are being represented May need a ot of staff time to get up and running. Checkist - Service User Group Who is the group for? What is its roe? How wi it benefit stakehoders? Why woud peope want to attend? How wi the group ink to the Trust? Wi the group be abe to infuence decisions? What are the imitations? Who wi ead the group? What training is required? What support does the group require? What is the time commitment? How wi you recruit members? Is Community/Vountary representation required? What other partners shoud be invoved? If it is a ong-term project, the group may want to consider deveoping forma structures such as a constitution, committee, meeting structures etc. If this is the case, pease refer to our fact sheet on constitutions which is avaiabe on the website - see beow. *For more information pease refer to the fact sheet on How to set up a Service User Group which is avaiabe on the User Invovement - PPI Section of and on the intranet. page 39

41 FORUMS FOR DEBATE Support Groups/Patient/Carer Groups/Sef Hep Groups These are organised groups of peope focusing around a common iness or condition, service or geographica ocation. These may be oca community based groups or branches of service user/carer organisations. They may be groups that provide support to peope with a specific condition, for exampe, coronary heart disease support groups or groups set up to give a user view for exampe cancer user groups, menta heath groups or maternity services iaison committees. Meetings may be initiated by either party and may have a set agenda or be unstructured. SECTION 6 Advantages Aows specific focus on a particuar service Group members are normay we informed Participants may be comfortabe with each other Reaches those with particuar experience, concerns and expertise who may have particuar reasons for wanting to be invoved Those with ong term conditions wi have specia expertise in how to manage their condition and ong-term experience of reevant services Advocates and carers can aso make a vauabe contribution. Disadvantages May have a very narrow focus Agenda may become too detaied and absorbed with sorting out individua issues We estabished groups may suffer from over consutation Groups may not incude a representative spread of the popuation in terms of age, gender, ethnicity, etc. Service user and patient views may not aways coincide with those of their carers or advocates. However both views are needed. page 40

42 SECTION 6 4. PARTICIPATION Person Centred Panning/Person Centred Thinking (PCP/PCT) We a think about, and pan our ives in different ways. Some peope have very cear ideas about what they want and how to achieve it; others take opportunities as they arise. Some peope dream and then see how they can match their dreams to reaity. Sometimes it is usefu to pan in a structured way, and person centred panning provides a range of approaches that can hep do this. These approaches share common vaues and principes, and are used to answer two fundamenta questions: Who are you, and who are we in your ife? What can we do together to achieve a better ife for you now, and in the future? Person centred panning is a process of continua istening, and earning. It focuses on what is important to someone now, and for the future and heps to formuate a pan of action to address identified needs in a partnership that puts the person at the centre with their famiy, friends, service providers and others. It is based on a competey different way of seeing and working with service users, which is fundamentay about sharing power and community incusion. Person centred panning is used by sef-advocates, famiies, friends and paid support staff. When someone wants to use person centred panning, they may have the energy and drive to ensure that their pan happens themseves. Person centred panning, requires that staff have a fexibe and responsive approach to meet peopes changing circumstances, guided by the principes of good panning rather than a standard procedure. Staff need to be constanty probem soving in partnership with the person and their famiy and friends. If you are interested in invoving service users in person centred panning, pease speak to a trained member of staff or contact your oca Promoting Webeing Team. The website beow provides further information on Person Centred Panning: page 41

43 PARTICIPATION Consutations Consutations are used to ask peope their views on a particuar area or issue in order to infuence and shape a service. In undertaking a consutation it is important that you are cear about the specific issues that can be changed based on the strength of the views expressed. If change is not an option, be up front otherwise this is not a consutation, it is information giving. It is aso very important to feedback the resuts and outcome of the consutation to those peope who participated. The Trust s PPI Pane is currenty deveoping minimum standards for consutation and engagement. Once finaised, these wi be avaiabe on the PPI Section of and on the intranet. SECTION 6 Advantages Opportunity to invove arger numbers of stakehoders in the process and offer consutation document to a wide range of individuas via the media Provides written summary of ideas/proposas which can be considered Minimum statutory forma consutation period of three months. Disadvantages Often difficut and costy process of circuating and distributing the consutation document to as wide an audience as possibe Probem of identifying the pubic Sometimes oca peope are ony invoved in providing comments on the document rather than deveoping the proposa Three months consutation period sometimes not ong enough Very forma process can be intimidating Consutation documents can be engthy and difficut to understand. Accessing consutations on the Trust website The Trust website can be accessed at If service users cick on Invoving You they wi be abe to access the various ive issues on which the Trust is consuting. Service users wi be abe to downoad the document and get information on the consutation process eg. timescae, detais of any forthcoming pubic meetings, who to contact etc. page 42

44 SECTION 6 PARTICIPATION Service User Panes/Heath Panes Panes are a usefu way of buiding two-way communication between service users, carers, the pubic and organisations. They can be used to expore oca peope s views on pans, service deveopments, poicy issues and the aocation of heath service resources. Panes are usuay made up of between eight to tweve peope. To ensure a reguar suppy of new voices each pane member has a fixed term and is then repaced by a new person. Panes usuay discuss topics that are ive ie. of genuine concern both to the organisation and to its members. As with other groups, it woud be vita to have any Panes we chaired or experty faciitated to ensure that a participants have the opportunity to contribute equay and that discussions are not dominated by individua concerns or issues, where this is not appropriate. Some discussion of roes, confidentiaity and setting of ground rues may be appropriate each time new members join. If this method of invovement becomes widey estabished, it is possibe to ink a number of panes into an over-arching pane. Such a pane woud hep to identify concerns and views over a wider area and ensure that there are robust mechanisms to feed the resuts into strategic pans. Advantages Members of panes may rotate so that at any one time there is a baance of od and new members Opportunity for debate and quaitative feedback Panes can provide a quick measure of pubic opinion on a specific issue that can then be tested out with the wider community Members have direct experience of the services being discussed and usuay a genuine desire to make services better for future service users and carers. Disadvantages Limited membership provides difficuties in gaining adequate representation Can sometimes be ess exporatory than focus groups depending on method of faciitation Need to ensure that service users and carers with positive and not just negative experiences participate. page 43

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