LONDON BOROUGH OF REDBRIDGE

Developing a model for Service User and Carer Involvement in the Transforming Adult Social Care Programme

Commentsto JulieFanning ExecutivePolicyAdviser CommunityCare LeyStreetHouse, 497499LeyStreet, Ilford,EssexIG27QX EMail: julie.fanning@redbridge.gov.uk Telephone: 02087085167 Facsimile: 02087085170

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Contents
Page
Introduction Background Piloting the Model Proposed Model for Service User Involvement The Model Guidelines for Service User and Carer Involvement Appendices Appendix 1 Feedback from Christine Burke and Micheline Mason Appendix 2 Responses to evaluation questions Appendix 3 3.1 3.2 What you told us about the event How you would like to be involved 23- 27 28-29 19- 22 14 - 18 8 - 13 3-4 5 6 7

Appendix 4 Our vision for the future Appendix 5 Questionnaire

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Introduction
Adult Social Care is changing, putting people who use services at the heart of their own care and support. Services will be provided differently to meet individual needs giving people who use services and their carers greater control over their lives. The key to achieving successful and lasting change in social care, is by gaining the genuine involvement of a wide range of interested people, including those who use services, enabling them to share their knowledge and experience and to positively influence change.

Redbridge has a good track record of involving people who use services and carers in the planning, development and monitoring of services. However this has been largely uncoordinated and often involves only one group of people with a particular service need. As we begin implementation of the Government Strategy Putting People First, we have a responsibility to develop ways of ensuring people can exercise choice and control over their lives, and to help give them a voice on service development through advocacy and brokerage support linked to the development of User Led Organisations based on the model of Centres for Independent Living. We will also need to provide access to universal information and advice services for all citizens.

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In order to ensure that we involve people effectively we need to develop a way of consulting and involving people equally, which builds on the good processes that are already in place.

We need a framework which takes a cross cutting approach to consultation, identifying shared areas of interest, as well as issues which impact on single interest groups. This framework will equally value the views of individuals, groups and wider forums, providing as many people as possible with the opportunity to share their views on our plans for transforming adult social care. The proposals contained in this report bring together the findings from earlier consultations and a Workshop held on 29 September 2009. The report is in two parts firstly to propose a way of involving more people in the changes in Adult Social Care in a consistent way and secondly to suggest a way of working that will ensure we are as inclusive as possible.

We spoke to people who use services, voluntary organisations, other service providers as well as NHS and Council staff. We were told that we should not try to duplicate what was already working well but to try to find a way of coordinating involvement building on existing good practice
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Background
A number of people have already put themselves forward to be involved in Transforming Adult Social Care when they attended the following Workshops, that were held during the summer of 2009 including : Informing the Commissioning Strategy (21 April 2009); Developing a User Led Organisation in Redbridge (3 June 2009); and Developing a model for User and Carer involvement (29 September 2009) Reports and outcomes from the workshops were sent to everyone that came and are available on the council website at Redbridgei.gov.uk. At the close of each event participants were asked if they would like to be involved in future work. We had excellent feedback and a number of people said they would like to be involved either by joining working groups, receiving information by post or email such as newsletters or surveys. See Appendix 3.2 We invited independent Facilitators, Christine Burke and Micheline Mason to help us think about how we could develop an effective model for service user and carer involvement. We agreed that their report from this work and a proposed model would form the basis of our first consultation to pilot our model and test whether it works. If it does work, we will continue to evaluate and expand the model to include a wider range of stakeholders. We will also need to consider how our proposals fit in with the work currently being coordinated in the voluntary sector to develop a User Led Organisation (ULO) in Redbridge, based on a coalition model. A diagram showing how the work meshes together with the work of the TASC Workstreams and the ULO is included in this document as Appendix 3. We will also consider links to the consultation framework in place as part of the Redbridge Strategic Partnership.
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Piloting the Model

The diagram over the page sets out the proposed model, which we will pilot in order to test its effectiveness. It shows that we have heard what we were advised by people that use services, that is that we should look at the arrangements that are already in place and build on that expertise, knowledge and commitment. Hopefully the groups mentioned will be easily recognised and if there are any gaps or if we have left anyone off we would like to hear about it. We will use the guidelines set out below (pages ), which were developed from service user and carer suggestions at the Workshop on 29th September 2009. We will approach the lead organisations to help us identify individuals that could become Citizen Leaders responsible for representing their community and will form the Redbridge Service User Reference Group (ReSurg). They will be provided with appropriate training and support to undertake this role. When the consultation is complete we will evaluate the process. If the findings show we have been successful in reaching our target audience we will continue to refine the model along the same lines, taking account of feedback we have received. As part of the consultation process we will be asking some key questions which will help us find out if the model and the guidelines work well for everyone. The consultation questions can be seen at the back of this report as Appendix 2

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ProposedModelforServiceUserInvolvementinTransformingAdultSocialCare

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The Model Guidelines for Service User and Carer Involvement

The guidelines below have been put together to help consultations be clear and includes everyone. They will help with developing a commitment to making consultations real. These guidelines do not form a rulebook and should be used with other forms of good practice.

Guidelines
The first step is to write a consultation plan including a budget. It needs to state how it will be evaluated. The following format may be helpful.

Pre-meeting
Why is the consultation being carried out? What is the main reason for wanting to consult? Is it due to a legal requirement? What do you expect to achieve from the consultation? What is the consultation about? What are you asking in the consultation; what can be changed? Who does the subject of the consultation affect? Who could be affected by the subject being consulted on? Who should be given the chance to take part in the consultation? Are you including everyone? Have you identified the equalities groups you need to involve and how?

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Will you do an Equalities impact assessment?

Have you allowed enough time to feedback? Is your timeline realistic to make sure you are able to check responses before using consultation information. What methods will be used? Choosing methods that makes sure you are including everyone. Also the invitation should be sent in different styles to make sure it reaches everyone. That it gives people an option how they wish to be consulted. How will the consultation responses be used? People need to know that when they are being consulted their voices will be heard and taken seriously. You need to be transparent about what you are not consulting about because you cannot change it. How will you feedback? You need to explain from the beginning how this will happen. How will you evaluate the consultation? Being clear from the beginning what you will do if you do not meet all the above and how you will know you have. How will you check and who will do this? Accessibility - Venue/information The choice of the venue should include physical access, parking, transport links, being welcoming, good food, right temperature, enough space and light, no barriers (like columns) in the room, break out rooms, facilities for young people if appropriate. Information needs to be in as many formats as possible including easy read and electronic.

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It needs to be clear if people are being paid to participate or not, and how much. Claim forms need to be provided. Supporters need to be well briefed in terms of the process and also their role (they are there to support peoples voice, not for their voice to be heard). If need be they could be consulted separately. Good Organisation Good organisation will determine the quality of the consultation. Plenty of advance notice consult a religious calendar to avoid festivals or religious events; well designed information; booking facilitators, set programme for consultation which might include home visits, booking language interpreters including BSL if required, booking and briefing supporters; arranging pre-meetings. Transport Check if people need transport organised to drop off and pick up at the beginning and end of the day. Transport needs to be organised around the needs of the session, not the providers e.g. day centres. Consider the use of taxis. Other Factors to Consider Seriousness of intent: The consultations should not happen unless you intend to act on their recommendations. Respect: An attitude of respect needs to be taken if you are asking people to volunteer time, effort and experience.

The Consultation The example questions below are suggestions that can be varied depending on nature of the consultation. 1. What do you want? 2. What has been useful so far? 3. What are the barriers to be overcome?
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Listening to Each Other The listening exercise described in this report will help participants to think aloud in a confidential and supported way. It gives an opportunity to explore their thoughts of what they want for themselves as a benchmark to what they are being consulted about. How to Include Everyone This question needs to be asked before the consultation is designed in order to make sure that everyone is reached e.g. meeting the needs of people who are deaf, blind, need interpretation, in hospital or prison, unable to leave home, do not use words or who need a different environment in order for them to say what they want. This may lead to different styles of consultation and communication being used, including home visits. Consultations should be organised at weekends and evenings as well as during working hours in order to include working people. A briefing paper needs to be sent with the invitation explaining exactly what the process before, during and after will be. This should be in an accessible format and take into consideration different flexible methods that need to be taken in order to include everyone. External Facilitation There are benefits in using external facilitation as this will help participants to speak up without fear. Families and individuals often say that they would not say anything negative in fear that they may lose the support that they already have. Also if people want to say something about the nature of support it would be important that the facilitators there to help them speak up are not from the services they are using. This is also true for young people if their teachers or parents are present. There are benefits in organising a separate session or at the feedback process to inform and make sure people voices are heard by those in power in an anonymous way.
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Other Things Check for dietary requirements, make sure vegetarian and meat dishes are separate, make sure there is a room for people to pray if they need to; electronic equipment and sitting arrangements should be set well in advance. Clear Structure to the Day The process of the day needs to be explained fully. The structure of the day should include small groups and pairs as well as speakers, so everyone has a chance to contribute. Structured listening is useful. Presentations need to be short, clear and accessible. Use of film, music, pictures all help keep peoples interest. The pace of the day needs to be a realistic one to allow people to think and express themselves despite any language or communication differences. Timekeeping - Beginnings and ending and breaks should be respected to avoid fatigue. People should have access to refreshments and comfort facilities throughout the day.

Feedback after the event After the event participants should be given information as to what will happen next. They need to know when they will receive minutes of the consultation and information of outcomes, and if there will be any further meetings.

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Closing Remarks Although good consultation is important it does not replace the need for disabled people and elders to organise in order to be able to define what they want and fight for their rights. User led organisations need to also be supported and resourced so they can lead the agenda themselves.

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Appendix 1

Feedback from Christine Burke and Micheline Mason on the Consultation Workshop Held on 29th September 2009
Introduction
The Governments intent to consult with the public has led, and is leading to many consultations to involve citizens in guiding the outcomes of future policies. In order to prevent this from becoming tokenistic or ineffective it is important for all wishing to consult to be clear why they are consulting and what impact these voices will have. This is even more important when trying to involve those they find it hard to reach, e.g. disabled people or ethnic minorities. This report is written in the hope that it will create a flexible and inclusive model for ensuring we are able to hear everyones voice. The Government has written a strategy called Putting People First. It says that Adult Social Services have to change the way it works by making services more person centred and more able to meet the needs of everyone who needs to use services by giving them more choice. Lots of different people with different needs use social care services. So they will want to have a say about how changes might affect them. Staff in Adult Social Services need to hear what people think about the plans for change and want to put in place a way of finding out from lots of people whether the changes make things better for them and their families.

The Brief We Were Given

The London Borough of Redbridge invited the Foundation for People with Learning Disabilities (the Foundation) to help them to develop a model for Involvement and Consultation for Service User and Carers in the Transforming Adult Social Care Programme.

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The Foundation was asked to help find out the best way of working together across service user groups and helping people to take a lead in consultation and involvement. Christine Burke, Service Development Manager at the Foundation, and Micheline Mason, Disabled activist and Associate Consultant for the Foundation, were commissioned to help work out how to improve service user and carer involvement. This report is based on feedback from the workshop to see if their ideas will work and be a good process for service user and carer involvement.

Methodology
A workshop was organised and the London Borough of Redbridge invited older people, carers, people with disabilities and / or mental health problems and people with a learning disability. They asked them to tell us what is the best way of making sure as many people as possible can get involved in planning future services and dont miss out on getting the services and support they need. The Foundation asked for a brief, including an accessible version, to be sent out by Redbridge to all coming to the planning workshop and the actual workshop. The facilitators met to plan and prepare materials for the day and for a pre-meeting with people with learning disabilities.

The Pre-workshop Meeting

We wanted to make sure the people invited knew what they were being consulted about and why. For this reason we held a pre-meeting with a number of people with learning disabilities to help explain the brief and the point of consultation. We did this to find out what would help them to be included. At the pre meeting participants asked that:

All information was in plain English and accessible The pace was such that allowed them thinking time That they had a supporter to explain things if they needed it To have space for working in pairs or small groups To use Traffic Light Cards in order to make sure that everyone was able to ask a question, interrupt if things were not clear or too fast (this model uses a series of
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coloured cards to facilitate participation, red card indicates have missed a point, you repeat) Regular breaks

e.g a stop, I can

For future consultations and meetings to have a pre-meeting like the one designed for this process to be organised for them.

We used this information in the design of the workshop.

The Workshop
People were welcomed and made to feel comfortable. Hot drinks and refreshments were available on arrival with staff on hand. As it was a big group (over 60) we sat people around tables with a facilitator on each table. We set up a Power Point screen where everyone could see from their tables. We explained the programme for the day and all the materials to be used. Big sheets of paper with questions were available so they did not have to worry about having to remember what they were being asked to do at each stage. A graphic record of the sequence of the day was kept on the wall to help with remembering what people said. Our aim for the morning session was to give the group an experience of being consulted. We opened with a briefing session from the Local Authority (LA) so that everyone was clear why they were there. We began the day with a 10 minute presentation from one of the consultants who is herself a disabled activist. She spoke about the struggle disabled people had had in the past to overcome their oppression, and of many of the things they had achieved once they became a united movement for change. We did this in order to put the day into a historical context of the importance of disabled people having a voice because they were excluded before. This was to help people see the importance of the efforts they were making by coming to the day, even though actual change may not be immediate or obvious. The next part of the programme was a listening exercise.
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We asked people to pick a partner, and to take equal turns to listen to each other. We instructed the listeners to not interrupt, give advice or change the subject, but simply to listen with delight whilst the other person took the chance to think aloud about the question we asked. We asked that the content of what each person said was to be confidential (no one except themselves could refer to it afterwards). We timed the sessions (3 minutes each) and then asked for a few people to say what the experience had been like. The reason we did this was to give people a safer than usual chance to explore their real thoughts and feelings, and also to learn to really listen to others without interrupting. In ordinary life this opportunity is very rare. A consultation is primarily asking people to think for themselves rather than just say what they think people want to hear. The next bit of the programme was asking three questions, with the partners from the first exercise. These are listed below along with the reasoning behind each:

1. What Makes a Good Life? In order for everyone to have a clear definition of the meaning of consultation participants were asked to think about what makes a good life. We asked this particular question to focus people on their own goals, rather than the goals of service providers, which would then guide their responses to future consultation i.e. Will this policy help me to achieve the life I want? 2. What helps us to achieve a good life? We asked this so that people could think about support and services which had been useful to them as a benchmark. These are things they might want more of. 3. What gets in the way of achieving a good life? An opportunity for people to think about the barriers to their goals and the changes which might be needed in order to remove these barriers. After this we broke for lunch. After lunch we started the second half of the programme. The purpose of the second half was to reflect on the process which had been experienced in the morning, which we hoped had been a model of good practice.

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We then asked them to evaluate the first half of the day by asking the following questions: What made it good? What could be better? Would it work for everyone? If not why not? Whose voice is missing?

The answers to these questions gave us the guidance for good consultation. We asked a final question: How would you know you have been heard?

This was to give us the guidance of what should follow a good consultation exercise. Some evaluation responses are listed below while the full responses can be found in the Appendix: The whole day felt welcoming, comfortable and easy. Good to share experiences. There was a clear structure to the day. The pre-meeting helped me to feel I could participate and heard. Thinking about ideas. Change of attitude this is 2009 not 1889. Process needs to take into account and identify gaps to enable a wider representation of individual needs and access to services.

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Appendix 2
Responses to evaluation questions
What worked or not on the day?
The whole day felt welcoming, comfortable and easy. Good to share experiences Good to hear what other people think I enjoyed having space to listen and be listened to. Well organised Accessible venue There was a clear structure to the day. The pre-meeting helped me to feel I could participate and heard Staff very helpful Redbridge and Holiday Inn Delegates helpful to each other, good mix of people People from different backgrounds Venue Good easy to get to, plenty of parking stress free (Signage outside needed to be bigger) Food was good Very inclusive, relaxed, accessible to all Good to have someone accompanying to help We had excellent help from Redbridge staff, ie organising transport and passing on information we didnt know We all shared ideas Managing to arrive on time Doing a trial yesterday (Prep day)
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Microphone helps everyone to hear Nice lunch/Nice staff/Lots of drinks Meeting new people Listening Properly People from different backgrounds Transport links Accessible venue It has been interesting Being Heard That learning Disabilities were spoken about as well as other disability groups Thinking about ideas Historic Introduction Informal Seating arrangements

How will you know you have been heard?

Development of Service User group Improved Communication More Service User Involvement Feedback by word of mouth Feedback from actions/outcomes Actions to be implemented with timescale adhered too Acknowledgement from service providers availability of more resources When things begin to happen changes made When others stop talking When other choices are offered When things change
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When People see results Change of attitude this is 2009 not 1889 Up to date directory of services Need to see action being taken so we are being listened to Report of meeting in user friendly language - on Tape/CD See write up of event in press Redbridge life, Redbridge I When things are better Have regular check up on how things are progressing (every 6 months) Statement of intent and commitment sent to Director of RASS request a response so we are aware of on-going dialogue Programme the changes deadlines for action When we have got a quality service we require In person centre planning give me what I want and I will know you heard me!

Would it work for everyone?

Yes if prepared to listen with good feedback Important to have wide representation No People with language difficulties No housebound No Certain types dementia related illnesses No not able to reach out to everyone the process needs to be tailored to more specific needs for certain individuals No process needs to take into account and identify gaps to enable a wider representation of individual needs and access to services It would have to be needs led Mixing with people from different service user groups helps to share issues People with complex needs or issues with group meeting being crowded might prefer premeets or small group of 1 to 1
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Yes if we followed this process If it was clearer what it was about, more people might have come. No only with plenty of support Not for people who have difficulty in understanding big words Yes if had traffic light cards but too difficult to use in big meetings Some people need to go at slower pace Did other groups need the same sort of pre meeting as we had? Monthly information forum, more that one, to cover local areas No would need to be differently structured for the visually impaired, deaf, housebound, hospitalised or anyone with language difficulties Need more visual input rather than just talking No more suitable venue needed Pales, walls difficult to see No - Smaller like minded groups eg. by disabilities No One to One/Face to Face/Telephone works better for some people

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Appendix 3.1
Developing a model for Service User Consultation in Redbridge What you told us about the event
Did you find out what you wanted to know?

11%

4%

0% 33% Fully Mostly Half-met Slightly Not at all

52%

Was the workshop useful?

9%

2% 2% 46% Fully Mostly Half-met Slightly Not at all

41%

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Did the speakers give you useful information?

11%

2% 2% Fully 46% Mostly Half-met Slightly

39%

Not at all

Were the facilitiators helpful?

0% 37% Fully Mostly Half-met 63% Slightly Not at all

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Length of Event

2%

7% Too long Just right Too short

91%

Venue

0%4% 41% 31% Poor Fair Good Very Good Excellent 24%

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Catering

0% 48%

9% 13% Poor Fair Good Very Good 30% Excellent

Would you like to know more about how we are developing Support Planning and Brokerage in Redbridge?
0% Yes No 100%

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I am a....
Service User 13% 13% 0% 26% Voluntary Sector Representative Staff Member LBR/NHSR/NELFT 48% Carer PA

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Appendix 3.2

How often would you like to receive information?

22%

Quarterly Not Sure

34%

44%

As a major development arrises

Would you like to be invited to other Transforming Social Care events?

2% 40% Yes No Made aware

58%

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Would you like to join a reference group?

42% Yes No 58%

How would you like to be communicated with?

39%

30% 23% 16%

28% 29% 25%

10%

Newsletters

E-bulletin Preferred Method

Events Could be useful

Redbridge I

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r Wide
Existing User Led Organisations gaps?

Com mun ity

Redbridge Strategic Partnership

Developing a model for user involvement in Transforming Adult Social Care

User Led Local Existing Organisation Involvement z consultation * common goals Network forums * all user groups (LINks) gaps? gaps?
Voluntary sector

Outcomes
uts * Independent Living Advisors * Help to self assess * Disability rights * Brokerage * Advice, information, advocacy * Peer support Outp

User Specific Redbridge Service User Reference Group Provider Reference Group

Centre for Independent Living

Commu

nity Eng a Sub Gro gement up

So Bui cia ldi l C ng ap ita l

Joint Strategic Needs Assessment Working Group

In dep th n assess eeds ment

* Universal offer for information and * Users and carers advice available aware * Roles defined Communications * Support in place * Accessible systems in * Market developed Co m place m * Workforce trained iss io * Safeguarding ni Workshops uts ng framework Outp * Direct Payment User Led
users * Providers * Market testing

Independence, Choice and Control

Organisation Workshop voluntary

Workforce

Transforming Adult Social Care Executive

Systems and Support

Customer Journey

Workshop * Support planning * Brokerage (LDP)

Appendix 4

Universal Information & Advice

ng di ar gu afe S

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Appendix 5
Developing a Model for Service User Engagement in Transforming Adult Social Care Questionnaire

We would like to know what you think about this Report. This report is a record of what people who use health and social care services told us at a Workshop on 29th September 2009. It also sets out what we think you described as a way of involving people that use services and their carers in the work we are doing to improve and modernise adult social care. To help us be sure that this is a good idea we are asking people who use services and their carers to answer the following questions. You can either fill in the form yourself or you can tell someone what you think and ask them to tell us your ideas, by writing, emailing or telephoning Julie Fanning, her contact details are on the front cover. To help us reach as many people as possible we will set up a group called the Redbridge Service User Reference Group and we will call it ReSURG for short. The people that come to ReSURG will be asked to talk to lots of other people about what happened at the ReSURG meetings and to tell ReSURG what the people they spoke to thought about the ideas discussed.

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Would you like to know more about becoming involved in changes to Adult Care?

Please tell us how you would like to be contacted?

Name:

I am a:

1Service User 1Carer 1PA 1Voluntary Sector Representative 1Staff Member LBR/NHSR/NELFT

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1.

Is this a good idea? Yes ( ) No ( )

1.1 If you answered no, how could we make it better?

2.

Have we listed the right Groups in the coloured outer circle? Yes ( ) No ( )

2.1 If you answered no, who should have been included?

3.

Do you think the Guidelines for involving people who use services are right? Yes ( ) No ( )

3.1 If you answered no, how could we make it better?

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4.

Is there anything else we should do to help people have their say? Yes ( ) No ( )

4.1 If you answered yes , could you tell us?

5.

Is there anything else you would like to say about the workshop on 29th September 2009, the Model we are suggesting or the Guidelines?

Please address completed questionnaires to:

JulieFanning,ExecutivePolicyAdviser CommunityCare,LeyStreetHouse,497499LeyStreet,Ilford,EssexIG27QX

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