Developing a model for involvement in social care (redbridge)


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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.

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Developing a model for involvement in social care (redbridge)

  1. 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: Telephone:  020 8708 5167 Facsimile:  020 8708 5170            Page  of 34 
  2. 2. Contents PageIntroduction 3-4Background 5Piloting the Model 6Proposed Model for Service User Involvement 7The Model Guidelines for Service Userand Carer Involvement 8 - 13AppendicesAppendix 1 -Feedback from Christine Burke andMicheline Mason 14 - 18Appendix 2 -Responses to evaluation questions 19- 22Appendix 3 -3.1 What you told us about the event 23- 273.2 How you would like to be involved 28-29Appendix 4 –Our vision for the future 30Appendix 5 -Questionnaire  31- 34    Page 2 of 34 
  3. 3. IntroductionAdult Social Care is changing, putting people who use services at the heartof their own care and support. Services will be provided differently to meetindividual needs giving people who use services and their carers greatercontrol over their lives. The key to achieving successful and lasting changein social care, is by gaining the genuine involvement of a wide range ofinterested people, including those who use services, enabling them toshare their knowledge and experience and to positively influence change.Redbridge has a good track record of involving people who use servicesand carers in the planning, development and monitoring of services.However this has been largely uncoordinated and often involves only onegroup of people with a particular service need. As we beginimplementation of the Government Strategy “Putting People First”, wehave a responsibility to develop ways of ensuring people can exercisechoice and control over their lives, and to help give them a voice on servicedevelopment through advocacy and brokerage support linked to thedevelopment of User Led Organisations based on the model of Centres forIndependent Living. We will also need to provide access to universalinformation and advice services for all citizens.  Page 3 of 34 
  4. 4. In order to ensure that we involve people effectively we need to develop away of consulting and involving people equally, which builds on the goodprocesses 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 singleinterest groups. This framework will equally value the views of individuals,groups and wider forums, providing as many people as possible with theopportunity to share their views on our plans for transforming adult socialcare.The proposals contained in this report bring together the findings fromearlier consultations and a Workshop held on 29 September 2009. Thereport is in two parts firstly to propose a way of involving more people inthe changes in Adult Social Care in a consistent way and secondly tosuggest a way of working that will ensure we are as inclusive as possible.We spoke to people who use services, voluntary organisations, other serviceproviders as well as NHS and Council staff. We were told that we should nottry to duplicate what was already working well but to try to find a way of co-ordinating involvement building on existing good practice  Page 4 of 34 
  5. 5. BackgroundA number of people have already put themselves forward to be involved inTransforming Adult Social Care when they attended the followingWorkshops, 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 thatcame and are available on the council website at Atthe close of each event participants were asked if they would like to beinvolved in future work. We had excellent feedback and a number of peoplesaid they would like to be involved either by joining working groups,receiving information by post or email such as newsletters or surveys. SeeAppendix 3.2We invited independent Facilitators, Christine Burke and Micheline Masonto help us think about how we could develop aneffective model for service user and carerinvolvement. We agreed that their report fromthis work and a proposed model would form thebasis of our first consultation to pilot our modeland test whether it works. If it does work, we willcontinue to evaluate and expand the model toinclude a wider range of stakeholders.We will also need to consider how our proposals fit in with the workcurrently being coordinated in the voluntary sector to develop a User LedOrganisation (ULO) in Redbridge, based on a coalition model. A diagramshowing how the work meshes together with the work of the TASCWorkstreams and the ULO is included in this document as Appendix 3. Wewill also consider links to the consultation framework in place as part of theRedbridge Strategic Partnership.  Page 5 of 34 
  6. 6. Piloting the ModelThe diagram over the page sets out the proposed model, which we willpilot in order to test its effectiveness. It shows that we have heard what wewere advised by people that use services, that is that we should look at thearrangements that are already in place and build on that expertise,knowledge and commitment. Hopefully the groups mentioned will beeasily recognised and if there are any gaps or if we have left anyone off wewould like to hear about it. We will use the guidelines set out below (pages), which were developed from service user and carer suggestions at theWorkshop on 29th September 2009.We will approach the lead organisations to help us identify individuals thatcould become Citizen Leaders responsible for representing theircommunity and will form the Redbridge Service User Reference Group(ReSurg). They will be provided with appropriate training and support toundertake this role.When the consultation is complete we will evaluate the process. If thefindings show we have been successful in reaching our target audience wewill continue to refine the model along the same lines, taking account offeedback we have received.As part of the consultation process we will be asking some key questionswhich will help us find out if the model and the guidelines work well foreveryone. The consultation questions can be seen at the back of this reportas Appendix 2  Page 6 of 34 
  7. 7.   Proposed Model for Service User Involvement in Transforming Adult Social Care     Page  7 of 34 
  8. 8.  The Model Guidelines for Service User and CarerInvolvementThe guidelines below have been put together to help consultations be clearand includes everyone. They will help with developing a commitment tomaking consultations real. These guidelines do not form a rulebook andshould 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 maybe helpful. Pre-meeting Why is the consultation being carried out?What is the main reason for wanting to consult? Is it due to a legalrequirement? 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 begiven the chance to take part in the consultation?Are you including everyone?Have you identified the equalities groups you need to involve and how?  Page 8of 34 
  9. 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 responsesbefore using consultation information.What methods will be used?Choosing methods that makes sure you are including everyone. Also theinvitation should be sent in different styles to make sure it reacheseveryone. 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 willbe heard and taken seriously.You need to be transparent about what you are not consulting aboutbecause 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 theabove and how you will know you have. How will you check and who willdo 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 readand electronic.  Page 9 of 34 
  10. 10. It needs to be clear if people are being paid to participate or not, and howmuch. Claim forms need to be provided.Supporters need to be well briefed in terms of the process and also theirrole (they are there to support people’s voice, not for their voice to beheard). 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 designedinformation; booking facilitators, set programme for consultation whichmight include home visits, booking language interpreters including BSL ifrequired, 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. Transportneeds to be organised around the needs of the session, not the providerse.g. day centres. Consider the use of taxis.Other Factors to ConsiderSeriousness of intent: The consultations should not happen unless youintend to act on their recommendations.Respect: An attitude of respect needs to be taken if you are asking peopleto volunteer time, effort and experience.The ConsultationThe example questions below are suggestions that can be varieddepending 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?  Page 10 of 34 
  11. 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 whatthey 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, needinterpretation, in hospital or prison, unable to leave home, do not usewords or who need a different environment in order for them to say whatthey want. This may lead to different styles of consultation andcommunication being used, including home visits.Consultations should be organised at weekends and evenings as well asduring working hours in order to include working people.A briefing paper needs to be sent with the invitation explaining exactlywhat the process before, during and after will be. This should be in anaccessible format and take into consideration different flexible methodsthat need to be taken in order to include everyone.External FacilitationThere are benefits in using external facilitation as this will help participantsto speak up without fear. Families and individuals often say that they wouldnot say anything negative in fear that they may lose the support that theyalready have. Also if people want to say something about the nature ofsupport it would be important that the facilitators there to help them speakup are not from the services they are using. This is also true for youngpeople if their teachers or parents are present.There are benefits in organising a separate session or at the feedbackprocess to inform and make sure people voices are heard by those in powerin an anonymous way.  Page 11 of 34 
  12. 12. Other Things Check for dietary requirements, make sure vegetarian and meat dishes are separate, make sure there is a room for people topray if they need to; electronic equipment and sitting arrangements shouldbe set well in advance.Clear Structure to the DayThe process of the day needs to be explained fully. The structure of the dayshould include small groups and pairs as well as speakers, so everyone has achance to contribute. Structured listening is useful. Presentations need tobe short, clear and accessible. Use of film, music, pictures all help keeppeoples interest.The pace of the day needs to be a realistic one to allow people to think andexpress themselves despite any language or communicationdifferences.Timekeeping - Beginnings and ending and breaks should berespected to avoid fatigue.People should have access to refreshments and comfort facilitiesthroughout the day.Feedback after the eventAfter the event participants should be given information as to what willhappen next. They need to know when they will receive minutes of theconsultation and information of outcomes, and if there will be any furthermeetings.       Page 12 of 34 
  13. 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 canlead the agenda themselves.  Page 13 of 34 
  14. 14.   Appendix 1 Feedback from Christine Burke and Micheline Mason on the Consultation Workshop Held on 29th September 2009IntroductionThe Government’s intent to consult with the public has led, and is leading to manyconsultations to involve citizens in guiding the outcomes of future policies. In order toprevent this from becoming tokenistic or ineffective it is important for all wishing toconsult to be clear why they are consulting and what impact these voices will have. Thisis 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 aflexible 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 AdultSocial Services have to change the way it works by making services more person centredand more able to meet the needs of everyone who needs to use services by giving themmore choice. Lots of different people with different needs use social care services. Sothey 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 changeand want to put in place a way of finding out from lots of people whether the changesmake things better for them and their families.The Brief We Were GivenThe London Borough of Redbridge invited theFoundation for People with Learning Disabilities (theFoundation) to help them to develop a model forInvolvement and Consultation for Service User andCarers in the Transforming Adult Social CareProgramme.   Page 14 of 34 
  15. 15. The Foundation was asked to help find out the best way of working together acrossservice 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 tohelp 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 bea good process for service user and carer involvement.MethodologyA workshop was organised and the London Borough of Redbridge invited older people,carers, people with disabilities and / or mental health problems and people with alearning disability. They asked them to tell us what is the best way of making sure asmany people as possible can get involved in planning future services and don’t miss outon getting the services and support they need.The Foundation asked for a brief, including an accessible version, to be sent out byRedbridge 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 withpeople with learning disabilities.The Pre-workshop MeetingWe wanted to make sure the people invited knew whatthey were being consulted about and why. For thisreason we held a pre-meeting with a number of peoplewith learning disabilities to help explain the brief and thepoint of consultation. We did this to find out what wouldhelp 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  Page 15 of 34 
  16. 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 WorkshopPeople were welcomed and made to feel comfortable. Hot drinks and refreshmentswere available on arrival with staff on hand.As it was a big group (over 60) we sat people around tables with a facilitator on eachtable. 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 ofpaper with questions were available so they did not have to worry about having toremember what they were being asked to do at each stage. A graphic record of thesequence 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 beingconsulted.We opened with a briefing session from the Local Authority (LA) so that everyone wasclear why they were there.We began the day with a 10 minute presentation from one of the consultants who isherself a disabled activist. She spoke about the struggledisabled people had had in the past to overcome theiroppression, and of many of the things they had achievedonce they became a united movement for change. Wedid this in order to put the day into a historical context ofthe importance of disabled people having a voicebecause they were excluded before. This was to helppeople see the importance of the efforts they weremaking by coming to the day, even though actual change may not be immediate orobvious. The next part of the programme was a listening exercise.  Page 16 of 34 
  17. 17. We asked people to pick a partner, and to take equal turns to listen to each other. Weinstructed the listeners to not interrupt, give advice or change the subject, but simply tolisten with delight whilst the other person took the chance to think aloud about thequestion we asked. We asked that the content of what each person said was to beconfidential (no one except themselves could refer to it afterwards). We timed thesessions (3 minutes each) and then asked for a few people to say what the experiencehad been like.The reason we did this was to give people a safer than usual chance to explore their realthoughts and feelings, and also to learn to really listen to others without interrupting. Inordinary life this opportunity is very rare. A consultation is primarily asking people tothink 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 thefirst 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 secondhalf was to reflect on the process which had been experienced in the morning, which wehoped had been a model of good practice.  Page 17 of 34 
  18. 18. We then asked them to evaluate the first half of the day by asking the followingquestions: • 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 theAppendix: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 ofindividual needs and access to services.  Page 18 of 34 
  19. 19. Appendix 2Responses to evaluation questionsWhat worked or not on the day?The whole day felt welcoming, comfortable and easy.Good to share experiencesGood to hear what other people thinkI enjoyed having space to listen and be listened to.Well organisedAccessible venueThere was a clear structure to the day.The pre-meeting helped me to feel I could participate and heardStaff very helpful Redbridge and Holiday InnDelegates helpful to each other, good mix of peoplePeople from different backgroundsVenue Good – easy to get to, plenty of parking stress free (Signage outside needed to bebigger)Food was goodVery inclusive, relaxed, accessible to allGood to have someone accompanying to helpWe had excellent help from Redbridge staff, ie organising transport and passing oninformation we didn’t knowWe all shared ideasManaging to arrive on timeDoing a trial yesterday (Prep day)  Page 19 of 34 
  20. 20. Microphone helps everyone to hearNice lunch/Nice staff/Lots of drinksMeeting new peopleListening ProperlyPeople from different backgroundsTransport linksAccessible venueIt has been interestingBeing HeardThat learning Disabilities were spoken about as well as other disability groupsThinking about ideasHistoric IntroductionInformal Seating arrangementsHow will you know you have been heard?Development of Service User groupImproved CommunicationMore Service User InvolvementFeedback by word of mouthFeedback from actions/outcomesActions to be implemented with timescale adhered tooAcknowledgement from service providers – availability of more resourcesWhen things begin to happen – changes madeWhen others stop talkingWhen other choices are offeredWhen things change  Page 20 of 34 
  21. 21. When People see resultsChange of attitude “this is 2009 not 1889”Up to date directory of servicesNeed to see action being taken – so we are being listened toReport of meeting in user friendly language - on Tape/CDSee write up of event in press – Redbridge life, Redbridge IWhen things are betterHave 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 areaware of on-going dialogueProgramme the changes – deadlines for actionWhen we have got a quality service we requireIn 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 feedbackImportant to have wide representationNo – People with language difficultiesNo – houseboundNo – Certain types dementia related illnessesNo – not able to reach out to everyone the process needs to be tailored to more specific needsfor certain individualsNo – process needs to take into account and identify gaps to enable a wider representationof individual needs and access to servicesIt would have to be needs ledMixing with people from different service user groups helps to share issuesPeople with complex needs or issues with group meeting being crowded might prefer pre-meets or small group of 1 to 1  Page 21 of 34 
  22. 22. Yes if we followed this processIf it was clearer what it was about, more people might have come.No – only with plenty of supportNot for people who have difficulty in understanding big wordsYes if had traffic light cards but too difficult to use in big meetingsSome people need to go at slower paceDid other groups need the same sort of pre meeting as we had?Monthly information forum, more that one, to cover local areasNo – would need to be differently structured for the visually impaired, deaf, housebound,hospitalised or anyone with language difficultiesNeed more visual input rather than just talkingNo – more suitable venue needed – Pales, walls difficult to seeNo - Smaller like minded groups eg. by disabilitiesNo – One to One/Face to Face/Telephone works better for some people  Page 22 of 34 
  23. 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  Page 23 of 34 
  24. 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  Page 24 of 34 
  25. 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%  Page 25 of 34 
  26. 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%  Page 26 of 34 
  27. 27. I am a.... Service User 13% Carer 13% 48% PA 0% Voluntary Sector 26% Representative Staff Member LBR/NHSR/NELFT  Page 27 of 34 
  28. 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         Page 28 of 34  
  29. 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   Page 29 of 34 
  30. 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 availableJoint 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 itaWorking 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. 31.   Appendix 5 Developing a Model for Service User Engagement in Transforming Adult Social Care QuestionnaireWe would like to know what you think about this Report.This report is a record of what people who use health and social careservices told us at a Workshop on 29th September 2009. It also sets out whatwe think you described as a way of involving people that use services andtheir carers in the work we are doing to improve and modernise adult socialcare.To help us be sure that this is a good idea we are asking people who useservices and their carers to answer the following questions. You can eitherfill in the form yourself or you can tell someone what you think and askthem to tell us your ideas, by writing, emailing or telephoning JulieFanning, her contact details are on the front cover.To help us reach as many people as possible we will set up a group calledthe Redbridge Service User Reference Group and we will call it ReSURG forshort. The people that come to ReSURG will be asked to talk to lots of otherpeople about what happened at the ReSURG meetings and to tell ReSURGwhat the people they spoke to thought about the ideas discussed.              Page 31 of 34 
  32. 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   Page 32 of 34 
  33. 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?    Page 33 of 34 
  34. 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  Page 34 of 34