My Life, My Home, My Choice

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Garey Evans
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1 My Life, My Home, My Choice

3 Project Summary Southwark Council and the NHS believe that people who use mental health services should have a choice about where and how they live. The Council would like to know what support they can give to people currently living in supported accommodation (for Phase 1: people in residential and nursing care homes and hospitals in the community) who may want to live more independently. To facilitate this they commissioned Experts by Experience (EbyE) to get the views of some of the residents.

4 Methodology 1 Pilot: 1 information meeting with staff and residents at one placement, followed by 11 interviews (85% of residents) In total (pilot and roll-out) 9 placements, 12 locations, 45 interviews (88% of residents) Information meetings held at those locations with 5+ residents

5 Methodology 2 Each resident was asked eleven questions relating to how they felt about their current accommodation, how they spend their time, and what they might like to change, followed by questions relating to how they would feel about living more independently if and when they are ready, and what support they may need to enable them to do this. Residents were also shown costed examples of people living independently with the help of personal health budgets.

6 Feedback EbyE and Southwark Council will be offering feedback meetings to all residents, in addition to sending them a copy of the report. We will feedback to one or more Providers Forum meetings We will feedback to the SLaM High Support Team We are happy to feedback at other fora

7 Overview of methodology Exceptionally high response rate due to methodology: Preparation: visits, meetings with staff and residents beforehand wherever possible / affordable Independence and objectivity Lived experience that we could share Putting people at ease 1 hour per person gives enough time to develop a relationship and tease out good information Tried and trusted structure allows people time to consider their options and often amend their views / feelings

8 Q1 How much, on a scale of 1-10 do you like living where you are, with 1 meaning that there is nothing you like about it and 10 meaning that it is perfect! 1 (8) 2 (0) 3 (1) 4 (0) 5 (5) 6 (3) 7 (4) 8 (5) 9 (6) 10 (13)

9 Q2 Tell me a bit about how you spend your days while you have been living here. Most residents participated in a wide range of everyday activities, including both those inside and outside of their accommodation, however there were some residents who said that they don t do much. Two residents were too nervous to go out.

10 Q3 What are some of the best things about living here? The best things about living where they do now fell into four categories: the environment, cooking and eating, the staff and residents, and activities.

11 Q4 If you could change things to make them better for you, what would you change? How could it be better for you? Suggestions for changes to improve things included internal facilities; more activities outside of the accommodation; moving on to other accommodation; and comments about food.

12 Q5 The Council and the NHS believe that you should be supported to live as fulfilling a life as possible and they think that to help you live more independently, with support, is one way to help you do this. On a scale of 1 to 10, please tell us how you feel about that, where 1 is that you hate the idea and 10 is that you love the idea! 1 (8) 2 (1) 3 (3) 4 (3) 5 (6) 6 (2) 7 (2) 8 (2) 9 (2) 10 (15) One resident was unable to answer

13 Q6 What are your reasons for your score? I don t want to live independently 1 I presently definitely do not want to move as I am not well enough 1 I don t want to move, I am happy here 1 People would try and kill me 1 I can t live independently 1 I am happy here 1 I know some people who have moved out of residential care into council flats and came back because they couldn t cope. Four or five out of eight came back 1 I am very happy here, I don t want to move. Pay my way here. Don t want to start a new life over again. Family come to visit to support me and use parking. Mum lives close by. 2 Just the way I feel about it right now 3 I would find it difficult to live independently 3 I need a lot of help physically, my walking would need to get better 3 Eventually I would like to move on but I am not ready yet

14 Q6 What are your reasons for your score? 4 and 5 4 I would still get help 4 I would like the idea if I wasn t on my own 4 I don t want to live by myself 5 I would like to go to Peckham but there is no place for me because I need too much support 5 I like smoking 5 I am unsure be more relaxed 5 Not ready yet. Can cope here with support 5 - Not lived in current property long, only a few months and would like to stay 4 or 5 years before moving 5 I want my own flat but I think I need help

15 Q6 What are your reasons for your score? I like the idea but find it difficult to socialise because I get paranoid that people might hurt me 6 - Not too fussy whether I go or not but not feeling too good about it at the moment but I think I could cope 7 I would like to live in a flat but I don t feel ready 7 There would be a bit more privacy in a flat. Would need a personal budget with more money to move. More DLA (Disability Living Allowance). Could do with a change of area and environment. 8 I don t feel ready but I would like to get a council flat in Bermondsey sometime 8 I want more independence and to be near friends and relatives in East London and have more space for artwork 9 I am happy to go back to my flat which they are holding for me 9 I have a flat which I like, I go there sometimes

16 Q6 What are your reasons for your score? I would have independence to cook and look after myself 10 I want to be self sufficient, not impeded 10 - I want relationships with people in the community 10 I have looked after myself before and I would like to again I had a good routine 10 If it was out of Southwark I would like to move and live independently asap 10 I really want to live independently but on the ground floor as I am under the rheumatologist 10 It s not good to be dependent on people, I want to get on with life as it s supposed to be 10 It would be better, I would be happier 10 I miss my family, I have a couple of mates 10 I want to live in China, holiday in Australia to visit friends and have the freedom to travel 10 I want to have my own place, go back to college, get a job and start afresh 10- By getting my own accommodation and working I will know that I have improved my mental state 10 I lived in a council flat before I went into hospital. I enjoyed the way I used to live and would like to do that again 10 Freedom, to be independent 10 In a year s time I would like to go back to my GLC (Greater London Council) flat

17 Q7 Tell us one or more good things you can imagine about living more independently, with support that you choose to help you. The responses from the residents in considering the good things they could imagine about living more independently fell into the following four categories: how independence would feel for them in general terms, the practical considerations, social activities and the support that they would need, however some residents thought there would not be anything good about living more independently.

18 Q8 Tell us about your worries or fears about this (question 7) Residents were mainly concerned about their mental wellbeing and safety if they were to live more independently. Regardless of the fears, many residents would be happy to try to move on and live more independently with support. Seven people had no worries or fears. Some didn t answer the question as they didn t want to move.

19 Q9 Now we are going to ask you to tell us about your dreams of how you would like to live. Please tell us what that might look like. This question brought out the largest response of the questionnaire. There were many dreams expressed by residents about how they would like to live when they are well enough to leave their residential placements. In general residents dreamed of being happier, having more freedom, control, privacy and independence. Residents considered the area and type of accommodation they would live in, what they would do with their time and what they dream to have.

20 Q10 What support might you need to fulfil your dreams? A few residents stated that they would not need any support; other than these, the responses to this question are grouped into four categories: personal and mental health needs, financial, practical and educational.

21 Q11 How would you like to spend your money? Aim high! Tell us your ideas and we will tell the Council and the NHS. They want to help you achieve your dream, that s what this project is about. Aside from some ideas well beyond the scope of personal health budgets, the ideas the residents gave us fell into four categories, namely practical issues, personal support, education and activities.

22 Outside the scope of the project Residents reported things that were outside the scope of the project in response to two questions.

23 Question 4 - Things people would like to change included Would like to be heard I feel misunderstood by the psychiatrist Don t like it when my friend sees what clothes I buy then goes out and buys the same I need a care coordinator as mine has left I need a bus pass urgently because the buses are too much money To get rid of the voices, I hear them everyday I would like not to have to take medication I keep thinking I am going to die because the voices tell me I will because I am not worth anything Drugs that don t affect my appetite Like to be fair Change my medication because of side effects To stop my medication Stop security searches on people and rooms never found contraband on me People to stop smoking cigarettes it gets on my lungs Smokers to stop ignoring me Not to be threatened and scared of people I want to move away from a certain resident Not to have my privacy taken away I want autonomy I want to be able to go to the pub and see women I would rather have liquid medication than solid It s horrible here. The staff and patients are horrible

24 Question 9 - Dreams The law would change and not have people in hospital for too long I dream that Neil Diamond will play at my funeral and no one will be sad

Contact: Barbara McIntosh Telephone:

Contact: Barbara McIntosh Telephone: Personal Planning Book The Personal Planning Book was originally written by Barbara McIntosh and Andrea Whittaker. Several revisions and additions to this book have been made since the original version