Over the last 18 months, a group of organisations and Redbridge Council have worked together to establish a Disabled People's User-Led Organisation (DPULO) in the area. This is a report of the launch event for the whole process.
Developing a model for involvement in social care (redbridge)
1. LONDON BOROUGH OF REDBRIDGE
Developing a model for Service User and Carer
Involvement in the Transforming Adult Social
Care Programme
Comments to
Julie Fanning
Executive Policy Adviser
Community Care
Ley Street House,
497‐499 Ley Street,
Ilford, Essex IG2 7QX
E‐Mail: julie.fanning@redbridge.gov.uk
Telephone: 020 8708 5167
Facsimile: 020 8708 5170
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2. Contents
Page
Introduction 3-4
Background 5
Piloting the Model 6
Proposed Model for Service User Involvement 7
The Model Guidelines for Service User
and Carer Involvement 8 - 13
Appendices
Appendix 1 -
Feedback from Christine Burke and
Micheline Mason 14 - 18
Appendix 2 -
Responses to evaluation questions 19- 22
Appendix 3 -
3.1 What you told us about the event 23- 27
3.2 How you would like to be involved 28-29
Appendix 4 –
Our vision for the future 30
Appendix 5 -
Questionnaire 31- 34
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3. 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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4. 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 co-
ordinating involvement building on existing good practice
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5. 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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6. 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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7. Proposed Model for Service User Involvement in Transforming Adult Social Care
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8.
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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9. 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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10. 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 people’s 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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11. 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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12. 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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13. 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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14. Appendix 1
Feedback from Christine Burke and
Micheline Mason on the Consultation Workshop
Held on 29th September 2009
Introduction
The Government’s 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 everyone’s 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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15. 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 don’t 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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16. coloured cards to
facilitate participation, e.g a
red card indicates ‘stop, I
have missed a point, can
you repeat)
• Regular breaks
• 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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17. 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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18. 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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19. 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 didn’t know
We all shared ideas
Managing to arrive on time
Doing a trial yesterday (Prep day)
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20. 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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21. 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 pre-
meets or small group of 1 to 1
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22. 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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23. 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?
4% 0%
11%
33%
Fully
Mostly
Half-met
Slightly
Not at all
52%
Was the workshop useful?
9% 2% 2%
Fully
46% Mostly
Half-met
Slightly
41% Not at all
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24. 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%
Fully
37%
Mostly
Half-met
Slightly
63%
Not at all
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25. Length of Event
2% 7%
Too long
Just right
Too short
91%
Venue
0%4%
Poor
41% 31%
Fair
Good
Very Good
Excellent
24%
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26. Catering
0% 9%
13% Poor
48% 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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27. I am a....
Service User
13% Carer
13%
48% PA
0%
Voluntary Sector
26% Representative
Staff Member
LBR/NHSR/NELFT
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28. 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
58% Made aware
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29. Would you like to join a reference group?
42%
Yes
No
58%
How would you like to be communicated with?
39%
30%
28% 29%
25%
23%
16%
10%
Newsletters E-bulletin Events Redbridge I
Preferred Method Could be useful
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30. Developing a model for user involvement
r Com
Wide mun
ity in Transforming Adult Social Care
Existing User Redbridge
Led Strategic
Organisations Partnership
gaps?
Existing User Led Local
consultation Organisation Involvement
z
forums * common goals Network
* all user groups (LINks) gaps?
gaps?
Outcomes
Voluntary Outp
sector * Independent Living uts
Advisors
* Help to self assess
* Disability rights Centre for Independent
* Brokerage
User Specific * Advice, information, Living
Redbridge advocacy * Peer support
Provider
Service User
Reference
Reference * Universal offer for
Group
Group information and
* Users and carers
advice available
Joint Strategic In dep Communications * Roles defined aware
th n * Support in place
Needs assess eeds * Accessible systems in * Market developed
Independence, Choice
ment Co and Control
Assessment m place
l
l C ng
m
ita
Working Group Commu iss * Workforce trained
cia ldi
ap
nity Eng io * Safeguarding
So Bui
a ni
Sub Gro gement Workshops ng framework Outp
uts
up User Led * Direct Payment
Organisation users
Workshop - * Providers
voluntary * Market testing
Transforming
Systems
Workforce
Adult Social
Care
and
Executive Support
Workshop
* Support
Appendix 4
planning
* Brokerage
ng
(LDP) di
Customer ar
Journey gu
Safe
Universal
Information &
Advice Page 30 of 34
31. 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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32. 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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33. 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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34. 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:
Julie Fanning, Executive Policy Adviser
Community Care, Ley Street House, 497‐499 Ley Street, Ilford, Essex IG2 7QX
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