Newham Health Trust - What's Your Story? - Report Final

Social Action for Health

Healthy Peoples Project

Shabira Jivan Elizabeth Bayliss Frances Rifkin Graham Lucas

.. .. .. .. .. Acknowledgements Our thanks are extended to Newham Healthcare Trust for commissioning this project, to Frances Rifkin and Graham Lucas of Utopia Arts. Without the input of Utopia and the Forum Theatre Network volunteers, the project would not have been the authentic success it turned out to be. Without the community group leaders and their members with whom we worked on development, the project would not have come alive. Thanks to the interpreters who worked hard to keep all the participants involved and included. Thanks go to all the participants who worked so hard, and gave so generously of their energy and creative talent. Thanks go to Mina Sassoon who got us started.

Executive Summary Three key lessons from the Healthy Peoples Project Content of feedback: •

That the predominant concern of local people about local health services is a relational way, that is, they are concerned about how health service staff relate to them as patients.

Methods used: • That by teaching local people drama-based skills first, public events that are interactive and dynamic and that build on the skills taught, can effectively engage local people from a range of communities in conveying their experiences and in capturing complex feelings and reactions in a vivid and authentic way. Engagement by the Health Service: • That the engagement of senior managers in the culminating public event was a significant factor in its positive success and value for participants.

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Chapter 1 Introduction The aim of this project has been to encourage local people in Newham to air their views about healthy living and health services and demonstrate how these might be heard using interactive techniques such as Forum theatre and storytelling. The objective was to provide the Patient and Public Involvement Forums with information and feedback to help them shape their agenda. A major event took place on the 29th April 2004 entitled “What’s Your Story?” at which community groups and local people came together to share their stories and to offer their feedback to service providers on how things might improve for patients. Over 250 people took part . This event was the culmination of a 9-month development period during which community theatre activists worked with local community groups across Newham to explore their experiences by using theatre techniques. 105 people took part in the workshops, not all of whom came to the public event. The developmental approach adopted came out of the experience gained through the partnership between Social Action for Health and Utopia Arts over the past 4 years, which has involved working at a grass roots level to empower local people to speak up and to be effective in public life, using interactive, theatre-based techniques. The tight timetable of the Healthy Peoples Project (7 months) demanded that we focus on working with only a few community groups intensively, teaching them how to work together to communicate the reality of their experiences in the public arena. We are convinced that preparatory work is an essential prerequisite of effective public engagement in public services. Teaching innovative techniques that build skills for life and thus practical and immediate benefits for participants is the place to start the process of building community participation in public life. The welcome current priority of public engagement has thus to be seen as a process. Our approach provides a model for public engagement that could support the work of local Patient and Public Involvement Forums which need to hear from local people and gain a sense of shared concerns in order to develop their agenda. They are not equipped to find out peoples’ views themselves. Using drama and narrative, we can capture the rich diversity of experiences of local people, understand the subtle layers of meaning and significance that 3

.. .. .. .. .. are involved in giving and receiving services, in being a patient, a resident and a member of a community. We can celebrate the goodwill of local people for their local public services by hearing their suggestions and taking them forward into the planning process. The Theatre process was conceived as a Legislative Theatre Process first developed in Brazil by Augusto Boal, originator of Forum Theatre and Theatre of the Oppressed, now a world-wide practice. The aim of Legislative Theatre is to encourage participants not only to explore solutions, but to put those solutions forward in the form of rules, guidelines, laws, recommendations to be taken on by decision makers. It was therefore appropriate that at the end of “What’s Your Story?” health event, the Director of Nursing and Patient Care acknowledged the views expressed and the suggestions made and assured participants that she would be taking them into account in the process of managing services. The model offered has therefore been tested as a viable model of community participation to support the work of the emergent Patient and Public Involvement Forums. There are three elements involved: • • •

Development work with a number of community groups representing different communities, building trust and then teaching techniques, practising skills learnt A big public event to bring people from different communities together to express views, tell of experiences, share concerns, attended by public decision-makers Follow up work on the issues raised to be reported back to the participants.

The Healthy Peoples Project is a partnership venture between Social Action for Health, Utopia Arts and Newham Health Care Trust.

Background Social Action for Health is a community development charity focusing on health equity. In practice this means we work with excluded communities to address issues that affect their health and well-being. This project came out of a recognition by Newham Healthcare Trust that fresh ways of encouraging people to feedback on services were needed. Ian McDowell, the Patient and Public Involvement Manager asked SAfH to manage the project. We extend our thanks to him for giving us the opportunity to work with local people on this important set of issues using innovative techniques.

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Aims • • • • •

To explore the experiences of local people in Newham in relation to the NHS and their views about healthy living To encourage reflection on these experiences To introduce Forum theatre as a rich medium for communication of issues and concerns To establish contact with a range of communities and engage them in the project To develop models of communication with the Patient and Public Involvement Forums that inform them about the issues and concerns of local people

Project methodology Contact was made with around 30 different groups in Newham, representing different communities in the borough. After discussions, 6 groups were interested in working in more detail with us: Hamara Gah, INUF, Powerhouse, LEAN, Asian Women’s Group and the Gujarati Welfare Association. During the development phase of the project, we ran 36 workshops using interactive drama techniques to share the experiences of the participants and to work in depth on how these experiences might be communicated in public. Participants talked about their experiences in accessing services; in coping with chronic illnesses and in coping with access issues to do with language barriers and difficulties with making appointments. (See Appendices) The workshop process was informal and interactive. The stories stemmed from people’s experiences and involved a process of story telling. The second part of the workshop entailed either making scenarios or role-plays from some of stories that participants deemed to be relevant to most people. Although users were often nervous at first, their eagerness to share their stories carried them through. With the aid of forum theatre volunteers, participants were involved in producing small-scale drama pieces sharing their stories, developing them in different ways to explore the issues, exploring the dynamics involved and reflecting on how these might be changed. These workshops were a vital part of the overall process since they were not only cathartic, enabling participants to communicate the depth and complexity of their experiences which they could own and move on from. For a comprehensive list of issues and solutions identified, please see Chapter 3 of this report. There were 105 participants in this development stage who worked hard with Shabira Jivan and Frances Rifkin and Graham Lucas from Utopia productions to prepare for the large event held on the 29th April 2004. 5

.. .. .. .. .. The last phase of the project was this large event, held at Stratford Circus, attended by around 250 people (see Appendix F). The event “What’s your story” was widely publicised through Newham Healthcare Trust and through community groups.

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Figure 1. As visitors arrive they join the story telling tables (100_048)

Figure 2. Role play by two patients (100_0073)

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Chapter 2 ‘What’s Your Story?’ - Public Health Event 29/4/04 This health event was a dramatic finale to the development work, undertaken through group work in workshops. The event provided a vehicle for workshop participants and members of the public to come together to present their stories to each other, to the Patient and Public Involvement Forum and to NHS practitioners and managers. The Event took place in the large theatre space at Stratford Circus in Stratford. Full use was made of the theatre's sound, lighting and video projection facilities to enhance and add dramatic focus to the stories and experiences being presented. In addition, a variety of costumes and props were used (some of them comic, to bring out the light-hearted aspects of some of the scenes). All visitors were welcomed at the registration desk and asked if they would like to complete a registration form. Several people did not want to complete the form, others were happy to complete it with the aid of a translator, friend or on their own. It is estimated that over 250 people visited the event (from catering and beverage consumption), however, only 122 completed the registration form. The event was divided into two areas; Story telling and Performance Space. As visitors arrived they were seated at the story telling tables where they engaged with other service users and storytellers in community languages. The story telling tables provided a space where people could narrate stories about their experiences of accessing health services in Newham and about their views on healthy living. Each table was equipped with pens and paper for stories to be recorded with words, pictures or symbols and these stories were placed on a graffiti wall. The story telling session took place between 11am to 11.45am. Throughout the session, stories were being collected and displayed on the graffiti wall. The graffiti wall is a tool used within Participatory Appraisal that was utilised to ‘pull’ all of the patient’s stories together. It was a visual statement of experiences and solutions identified by patients. (See Chapter 3 for findings) The story-tellers helped to record patients’ stories on the graffiti wall cards. The story telling helped people get to talk together with strangers and get them thinking communicating their own situations to others.

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Figure 3. Story Telling Table (100_0051)

At 11.45am, the visitors moved into the theatre space and were formally welcomed by Elizabeth Bayliss, the Executive Director of Social Action for Health who introduced three key attendees who were the ‘eyes & ears’ of the NHS; Dr Mike Gill, Medical Director of Newham Health Care Trust, Louise Burke, Director of Nursing and Patient Care for Newham Health Care Trust and Eutal Spence, Chair of the Patient and Public Involvement Forum. They each addressed the participants and made a commitment to listen to what they had to say. At 12.15pm participants were invited to show some forum theatre scenarios they had worked on in the workshops, which described some situations experienced, such as the woman who went to the Accident and Emergency unit at the hospital with a terrible stomach pain. She waited and waited and waited and eventually she had a sleep and when she woke up she felt better and went home! The opening scenes helped to ‘warm’ up the audience, who were then invited to take on parts in the scenarios presented to change them. The workshop groups from Hamara Ghar, Powerhouse, INUF, LEAN and AWCG contributed enormously to the Forum, by sharing and engaging in the theatre process, as did other participants who wanted to have their say. Translation was integrated into the event so attention levels remained high during the event. 9

.. .. .. .. .. The first spectator to go up on stage to play “The Frowning Dr” was from Hamara Ghar. The effect of her intervention was to electrify others – the sight of an ordinary person becoming a protagonist helps to transform the stage into a democratic, accessible space. As the session progressed, more people began to come up and join the stories or tell their own. In particular, a young woman with learning disabilities played a doctor to a lot of laughter and applause. Another visitor read out a health story regarding her experience as a diabetic.

Figure 4. Guests in the seating area around ‘theatre’ space (100_0092)

The drama was interactive and cross-cultural. The messages were unambiguous and robust. The graffiti wall filled up with stories and possible solutions. The theatre session finished with a range of cultural work and performance: Gujarati dances, Hindu and Muslim songs, a Rap. One participant went on stage to thank the NHS and to tell a good story about caring and successful treatment. At 1.30pm Louise Burke, the Director of Nursing and Patient Care affirmed her commitment to the improvement of services and assured the audience that she would take on board what she had witnessed.

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Figure 5. Performance by Gujarati welfare association (100_0121)

Figure 6. Performance by Michael Collingbine (100_0107)

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Chapter 3 Findings from the Event and participants recommendations There are two aspects to the reflection on what was found from undertaking the project: 1. The content of the substantive issues arising out of the different forms of feedback on health services that emerged 2. The efficacy of the methods used, both in terms of the engagement of local people and the engagement of health service professionals.

1. Content of feedback Participants’ feedback was gathered from the workshops, the graffiti wall and the public drama event. This feedback can be grouped into 7 themes: positive comment on health services, language, communication, information, waiting, respect, poor quality services and service needs. The appendices detail the comments. In this chapter, the comments in each of the themes are summarised and put together with the recommendations coming from participants about how improvements can be achieved. The predominant issue from the feedback was a relational one: about the way patients are related to by health service staff. The drama communicated this very strongly. Participants across cultures wanted to talk about the quality of their relationship with health service staff. They felt disrespected, ignored, rudely treated, not taken account of as a person, patronised; they felt that they were a nuisance, a problem. It is worth noting that the words on the page do not capture the subtlety of the rich material that came out of the live event at which there was dynamic interaction between people across cultures. Themes and recommended solutions: • Positive feedback on the Health Service Many participants were keen to communicate their satisfaction with the health Service, reporting many good experiences. • Language Language barriers continue to be a problem for people. Participants reported being excluded by the lack of interpreting or translating provision. Recommended solution o

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Interpretation services need to be available. Doctors speaking our own language would make it easier.

• Communication There are problems in communication between the hospital and the GP with patients not knowing what is expected of them. Recommended solution o

Simple language, no jargon and more pictures.

o

Give enough time to explain illnesses.

o o

Give us more time to talk. “Listening to the patients”. Patients are the ones who have the condition and deal with it 24/7. Explaining what an illness is. Don’t use long complicated words – use easy language which will help us all and pictures.

o

• Information Participants reported not knowing about services and Health Service staff not telling them what they can go to help themselves.

Recommended solution o

Doctor’s surgeries could have information about help available and where to go for classes in health and exercise – I don’t know where to go when the doctor tells me I need exercise or a better diet or to get a massage for free. Is there a class somewhere? Who can teach us what to do (from a group discussion on table)

• Waiting Participants reported long waiting times which caused distress, and causes problems for accompanying carers being kept waiting when they needed to get to work.

• Respect Participants reported not feeling that they were respected. Respect is the main thing for many people: politeness, understanding and friendliness are necessary. There is a sense that patients as well as clinicians must behave and show respect to each other. Recommended solution o o o o o

Doctors should listen and polite and caring. Good doctors should be patient and smile more. A good doctor should look at the patient – show more respect! Have more time. Doctors should be honest and keep their promises to follow up the patients condition. Train receptionists in customer care.

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.. .. .. .. .. • Poor quality services and services needed Participants reported experience of under-resourcing in the Health Services. There were reports of their being no blankets available in hospital, a nurse needing help from a visitor to lift patent, lost patients notes, lack of coordination between the NHS and social Services upon discharge, reports of mis-diagnoses causing serious problems.

Recommended solution o

o

o o o o o o o o o o o

Better training – caring is not an easy thing to do. You can’t just sit on your bum and do nothing. There needs to be more stimulation – not just sticking people in front of the TV all day – there should be music sessions. Outdated facilities. More investment in new buildings and modernisation of existing buildings to create clean and pleasant surroundings for patients and staff. Trainee doctors need to be supervised. GPs need to have more time to attend to patients. A more holistic approach – we are not diseases and conditions we are people. You should include disabled people. You don’t because you can’t cure us you don’t know how to treat us. There should be special arrangements in A&E for elderly people. Make the environment more friendly and welcoming. They’re not “hospitable”. They should be more approachable – give more time for patients to explain themselves. Should be more comforting to patients. The whole family should be with one doctor – when my son came to England he had to go somewhere else as the doctor said he was full up. Dental services should incorporate the notion of emergency. Do the professional people understand the meaning of “emergency?” Transport should be to, not near, hospitals. I recommend that continuing hydrotherapy is provided for all Newham residents who would benefit from it.

2. Efficacy of approach This project used innovative techniques to engage local people from the complex range of diverse communities in sharing their views about health services and healthy living. As such there was a risk it simply would not work in one way or another. Thus, • • •

we might not have been able to engage people from different communities; they might not have been prepared to share with others from other communities; they might not have been prepared to engage in a public forum.

In fact, people from a range of communities participated: Gujarati, Bengali, Punjabi, Caribbean, African, white British, black British, young people, elders, people with disabilities, men as well as women.

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The event was conducted multi-lingually. This was done with a light touch by the two people who took on the interpreting task so that the pace was maintained and people’s interest sustained. There was great interest by the participants in the contributions from people from other cultural backgrounds. Notable was the very positive reaction to the rap, created and performed by a young white man. Muslim and Asian people were keen to congratulate him. There was also very positive support for two young women with learning disabilities who took part in the drama. Although many people who took part in the development phase of the project, the workshops had expressed reservations about taking part in the public forum, on the day of the event, many of them came and participated with zest. What made the event success a remarkable success was the generous interaction between participants on the day. Their skill at communicating cross culturally put their comments on health services in context. On a day to day basis, local people are engaging cross culturally. In this live context, it seems reasonable indeed to expect the local health services to have the necessary skills too. It was the relational issues that were returned to, time and time again by participants. They hope for improvement in the way they are treated. Another outcome from the project has been the new skills learnt and confidence gained by participants. They put these new communication skills, using movement, drama, feeling, listening, observing, into practice. Participants were keen to continue with this new way of doing things and want to participate in follow-on projects. A vital element in making the event such a success was the visible presence of Directors and senior staff from Newham Health Care Trust and Newham Primary Care Trust and the Chair of the Patient and Public Involvement Forum. Participants reported their satisfaction that the event was being taken seriously, that people with decision making power had taken the time to attend. This really did make a positive contribution to the event, especially when the Director of Nursing gave her assurances at the end that the issues raised had been heard. The engagement of the local Health Services was thus a significant contributory factor in legitimising the approach adopted. The real buzz of excitement at the end of the event came from the sense that people felt they had communicated effectively and that they had been heard. When the last person got up to speak from the floor, it was not merely accidental that she wanted to tell how good the doctors had been to her. She was warmly received. There was a sense that people wanted to express their support for the NHS – they wanted their constructive criticism to be seen as helpful and the response of the NHS by being able to accept the feedback constructively went a long way to enable people to leave with a positive attitude. This well meaning can and should be built on.

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Appendices 1. 2. 3. 4. 5. 6. 7.

Appendix A: Appendix B: Appendix C: Appendix D: Appendix E: Appendix F: Appendix G:

Workshop notes Hamara Ghar Workshop notes INUF Workshop notes Asian Women’s Carers Group Workshop notes LEAN Workshop notes Powerhouse Graffiti Wall Notes- Experiences and Recommendations Demographics from health event

Appendix A Hamara Ghar o 12 weekly sessions took place at Hamara Ghar. We started working on Thursday mornings and then moved to Fridays after the keep fit session, as there were more people around. We approach the users of the centre informally, taking time to explain the objective of the project. We asked for stories of their experiences of using the NHS. We said that as the local management of the NHS wanted to hear from them about things they would like to change and demonstrated how their stories might be turned first into short scenes and then into Forum pieces that everyone could work on and find different solutions for. We also asked for and got positive stories about healthcare. o The methodology was to follow the indications we received about how people liked to sit, chat or drink tea in Hamara Ghar. The volunteers picked up on stories, worked with the storyteller to unfold them and in a variety of ways helped the teller to take part and involve others in showing the story to whoever was watching. o We realised that with the group sitting around the space in armchairs, the centre of the room felt a bit empty so we put a table in it and invited tellers to come and sit at the table. This meant that the spectator/actor, “Spectactor” relationship was comfortably established and quite organic. When you’d told your story, you made space for the next person. This worked well with the culture of HG and allowed people to be given attention while sitting at their ease. o The presence of a facilitator and volunteers working as a team with no strong focus of authority, made for a flexible interactive approach: we were able to perform for someone who was shy, encourage participation, role-swap and generally make the whole thing quite entertaining as well. The participants were able to be flexible too – they might wander off for a while, arrive a bit late or spend the whole session with us. It was clear that it was their centre and that their choices and decisions were paramount. Two sessions had no participants at all due to holidays or other events. Most had a minimum of 6 or 7 participants, some had 15 or 20. o As the work progressed a group of iconic scenes emerged: “The Frowning Dr”, “The Angry Nurse”, “The Good Dr”, “The Dr who Writes a Prescription as you walk through the Door”, “The Shower of Blood”, “Good patient and Bad Patient” “Dr and Translator”. It became clear that while people were willing to go on the day, many were unwilling to actually perform in public. This was fine as a core 16

o

o

o

group of volunteers and staff in the centre were enthusiastic about the techniques and were getting good at them. We were fed by the stories of the larger group. Eventually, we moved into the larger space and coordinated the start of our session with the end of the Keep Fit on Fridays. From this point, attendance increased and interest began to consolidate. We took a set of worked-up “scenelets” to show the group. We realised that any performance was intensely interesting to the participants and this “playback” seemed to increase participation and commitment. We used the “scenelets” to develop more participatory work and more work on exploring alternatives. People who hadn’t shown sign of involvement before were getting used to us and beginning to take part. The final group of sessions were videoed and some video-box work was done. As the event approached, people began to ask questions about it and were obviously looking forward to it. There was a shared knowledge which seemed to have been transmitted from person to person, not just among regular participants. Throughout, there was tremendous involvement support and hospitality from Bhamini Akonjee the manager and from Joshna ? deputy manager and volunteers Abbas, Madhu, Shobana. Without their commitment the project would have been impossible. Sessions were often facilitated or joint-facilitated by them, they translated between up to 5 languages, they contributed stories, they fed us wonderfully well. There was a tremendous exchange between us. They showed us how to work in HG and helped us avoid mistakes, explained all kinds of things and suggested new ideas and approaches; we in our turn introduced them to the use of drama as a creative and profound form of communication.

Feedback on experiences with health services o There should be special arrangements in A&E for elderly people. o Politeness, understanding, friendliness – respect the main thing. o Transport should be to, not near, hospitals. o Patients should be polite and patient – the public misbehaves too. Both parties should get respect. o Dental services should incorporate the notion of emergency. Do the professional people understand the meaning of “emergency?” o Interpretation services need to be available. o First time in public, or even together that people have talked about NHS service and health problems. We have never talked about good or bad things with other people before. Illness o Culture of communities means that people are scared to tell problems to others. They suffer in silence. Even family members don’t tell each other. “No use talking about it, it won’t help”. o Taboos on cancer, TB or any disease. Not to share. Is it catching? Scared. New generation might talk – some still do not. o People won’t go to houses where there’s illness. Feedback on the drama process o Enjoyed explaining problems with GPs and Hospitals. o Enjoyed plays and exercise o It was a voice for people carrying forward negative experiences with NHS services. o Want more drama. o Gave empowerment: standing up and handling different professionals. o Enjoyed talking about their own health. o In future these forms should take place – think about the health of people. 17

.. .. .. .. .. o o o o o o o o

Means you don’t just think about your own problems. Enjoyed the whole thing – promotion of health problems to professionals. It was good to talk about health in groups – never have before, only at meetings. Other people – do they have the same problems? It does make a difference. You get a sense of your story being a lot better than others’, you get a sense of proportion, you’re not the only one. You have problems with professionals – especially if you are in hospital – carers don’t talk in a friendly way, doctors don’t have time. The whole world should know what we do in this project.

HOW WAS IT TO SEE OTHERS PLAYING IN YOUR STORIES? HOW WAS IT TO CHANGE THE OUTCOME OF STORIES? o Felt very good. Someone else thinking of stories and showing it. o You could express your feelings. o A lot of people have a bad experience. o After this experience, next time I would stop him. DO YOU FEEL BRAVER? o Yes. More awareness at least of rights. HOW WAS IT TO PLAY A DR OR A NURSE? o Nice – enjoyed. o Role-plays show life. o I was expressing my own feelings. o Nice to sit and talk and get everyone’s opinion.

Appendix B INUF o This group asked for and received a set of theatre workshops using games and exercises. For the first 6 sessions at least one volunteer attended the sessions. Frances (facilitated) and Graham attended the first 8 sessions. o In this group, the work was more open ended – there was less interest in the Event and much more in learning some theatre techniques to examine issues of interest to the participants. The political and personal interests of group members, though by no means uniform, tended to produce a sometimes cynical though always lively and creative questioning of the doings both of the NHS and of voluntary organisations. In addition to this, there was no need to justify or explain the use of theatre as all of them were practising artists or had been at various stages of their lives. o The workshops covered a wide range of material from personal relationships to experiences as NHS users. Much of it paralleled the experience of those at Hamara Ghar and in the Asian Women’s group. Iconic scenes included “Dismissive Dr”, “Receptionist from Hell”, “Good Dr”, “Good receptionist”. We worked with an approach similar to that at Hamara Ghar in teaching the participants techniques for working with scenarios to explore change. The material was expressed in many forms from fantastic and complex imagery to day to day interactions. By the end of the sessions, the group was close to being able to run basic workshops for themselves though whether they would have had the confidence at that stage is not clear.

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o o

Their participation in the Event was on an individual basis. Michael Collingbine improvised a Rap about being a Mental Health service user and other members participated in the improvised Forum sessions and helped with the story telling session that preceded it.

Feedback on the drama process o Open our minds. o Know you’re not the only one going through problems. o Know how to act and how others act and how they feel. o Ripple effect. Enjoyed working together. o Getting stuff off chest, airing feelings. o See what’s going on in other places. o When you only hear, you don’t see. o Brought a lot to the forefront. o Talk to junior people as well. o Talking to other service users. o Possibility of future projects. o Write letter to trust. o Got support and understanding and could show emotions. o Both workshops and Event gave opportunity to speak to people you want to talk to. o Social activity in group. Learn more social things as different people come into the group. o Learning by others’ experiences. o Use of videos, photos, stories with others in future? o Learn how to behave with others. o Invite bigwigs to sessions: no interrupting. o Positive anvil to drop on some people’s heads. o People start to realise they have a say. o Take away helpful ideas from solutions. o Knowing who to turn to. o Invite police to feedbacks.

Appendix C Asian Womens’ Carers’ Group, Cleves School Six workshop sessions were held as part of the Carers' Group regular weekly meetings. Group members were encouraged to tell their stories and experiences of interacting with the Health Service, whether the outcomes were good or bad. In the beginning the Utopia practitioners enacted some of these stories back to the group but it wasn't long before group members were enthusiastically taking part and playing the roles themselves. A great variety of stories were told, some good, some tragic and some amusing. These included: 'I Waited So Long To Be Seen In A&E That I Felt Better And Went Home'; I Put My Back Out Helping Nurse To Lift Patient'; The Nurse Couldn't Find Me a Blanket So I Phoned My Husband to Bring One from Home' and several about lost patient notes, language problems, lack of coordination between the NHS and social Services upon discharge, problems for carers being kept waiting when appointment times overrun and mis-diagnoses. Many members of the Group were keen to attend the Event and offer their stories and transport was arranged to take them to it.

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.. .. .. .. .. Appendix D LEAN Three sessions were held with an English Speaking group at London East Aids Network. The group meets once a fortnight to lend each other support and share lunch. During the drama workshops, the group was lively and enthusiastic. We had discussed health issues on previous occasions, and although the group was responsive, they were more open and honest in the role-play sessions. Their stories were lively, descriptive and challenging. They had ownership of the issues and discussed what they would do different if it happened again. The role-plays were centred on issues of HIV and the discrimination the patients face: o o

o o

Role play centred around a patient being told that she will not be seen at her 12pm appointment but must wait till the end of the clinic due to her ‘condition’ Two different scenes were based on HIV unfriendly GP’s and their lack of understanding of HIV issues. This role play was followed by an example of a HIV friendly GP; the doctor that the patients wished they had. Scenarios of insensitive reception staff and uncaring nurses were also portrayed A role play of a nervous dentist avoiding contact with the HIV patient was also portrayed. The patient ended up leaving the surgery because he was embarrassed and upset.

The group felt that mainstream services do not cater for HIV patients and that health workers are not up to date on the issues they face. Patients feel discriminated on the basis of their HIV and feel that practitioners need to be more aware of the health and emotional issues that HIV patients face. Feedback o Want more sessions, want more drama, want to identify ways to reduce stress, want to know the outcome of the work.

Appendix E Power House Three drama sessions were undertaken with a group of women with learning disabilities. The group meets once a week and socialise, discuss any problems and seek advise from the advocacy worker. The workshop was divided into 2 stages; First, we discussed issues relating to health and what it meant to be healthy. We made a mural of the issues we discussed and each person was responsible for a square within the mural. The second stage consisted of a drama workshop. We spoke about going to the doctor or hospital. Several women raised concerns and we discussed how we could make the situation better. We then began role-playing some of the stories, with the women alternating roles. These women really love drama. They enjoy expressing themselves through role-playing as it is easier for some of them to ‘act’ out what they are feeling. Communication is an issue for them when accessing health services as

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they feel health workers are impatient with them when they need time to explain any issues. Feedback Want more drama as a medium to express their concerns and learn new ways to deal with problems. Have requested SAFH to continue to work with the group. Want more drama as a medium to express their concerns and learn new ways to deal with problems. Have requested SAFH to continue to work with the group.

Appendix F Graffitti Wall : positive experiences o Had fairly good treatment as a patient o Treatment is wonderful o Our doctors are good people o Dr Saha (E16) is a very good doctor and good listener and has been looking after me from a very young age and my mother o I went to the Doctor because I had asthma. The doctor was nice to me and smiled. He asked questions o My personal experience has generally been good. I have a history of mental health problems but one thing in my area is a 24 hour clinic which has been valuable on a couple of occasions. There is nothing like this in east London. o They saved my life and that was most important thing. But they try to accommodate too many services in one place – results in long waits. o Surgeries are now providing a better variety of services to cover most age groups. In my surgery they have started drop in sessions for young people who are normally left out. The GP is understanding and tries to give as much time as possible. He does make an effort to show he cares but… the new appointment system used at my surgery is not very flexible – and this makes it very difficult for people who work to arrange appointments in advance. Problem experiences ‘the barriers I have encountered to getting the health services I need…’ Language and interpretation o No one speaks Hindi or Gujarati in the surgery o My friend who is deaf was using me to interpret as I am a sign language interpreter. The Doctor told him he had cancer, but before he left the room, called a colleague and said “it is regrettable that he is going to die” The deaf man was still in the room o My own doctor who I had been going to for 20 years put up a notice that only English people could understand.They’re very arrogant and don’t take time to talk to patients o When I go to hospital there are no interpreters (Gujarati)

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.. .. .. .. .. Waiting o Very hard to make appointments. It discourages you from going to the doctor even if you go at 6.00am. Very tiresome o When my daughter was 15 years old she had breathing problems and I called the ambulance. At 10.00pm she was taken to Newham General. They told us to take a seat She was called at 6.00am the next morning. After seeing her they told her she was stressed. She has to wait 8 hours before they told her what the problem was. o I have to wait too long for a GP appointment then I get more ill o We wait too long to see the Doctor (at the hospital?)…. 8 months and I am still waiting…am I not important? My sister had an appointment and was told there wasn’t a bed. o Waiting six hours n the A&E has become a norm and therefore if I fall sick I would rather get a cab out of the Borough to another more efficient hospital than one in Newham. Respect o GP surgery not patient friendly, especially receptionists – bad customer service. GPs need serious diversity training – they don’t explain medicines or painkillers. o I had an operation and was hospitalised. One day I was suffering and asked the Nurse to give me a blanket. She replied they didn’t have one so I had to phone and get a blanket from home. Nurses don’t care about the patients. o My GP is very impatient and aggressive. I can’t wait to move out of the Borough to get another one. Communication o Once I was feeling very bad and had a chest pain. Eventually it got worse and I had to go to Newham General. They checked me and gave me medication and told me to go home and see my GP. When I saw him he asked me for the letter from the hospital. But I wasn’t given any letter to give to my GP. I think it’s very bad practice. I didn’t know that I had to take a letter. It is their responsibility to tell me o When I had a drug test I went back after to the GP and he didn’t say anything – even after a month I still don’t know what is wrong o Lack of communication by doctors is a problem o Nurses can be abrupt Examination and Medication o Rajsun’s story. My 8 year old nephew hurt his knee on a rough surface. He hid the blood. At 4.00pm his mother noticed and between 6 and 7 Uncle took him to London Whitechapel. The boy was frightened – emergency had 3-4 hours wait. What is your guess said the Doctor? What would you have done back home? She was angry and didn’t check properly. After 2 days marble was found in the wound. o My doctor prescribes pain killers for everything so I changed to a lady doctor in the same surgery who is good. Poor Quality Service o Once my husband had incontinence problems and I took him to Newham General. He was waiting for approximately 12 hours and they put in a tube for him to pass urine. He suffered for 12 hours before he was treated. Also 22

o o o

o

my husband was in hospital for an operation and was hospitalised for weeks. One day I went and saw him he was vomiting all over himself and no-one was helping him. When my son came he started talking to them and then they cleaned him. I think it is a terrible hospital. When my sister was in surgery they left a piece of the scissors in her stomach and they had to open it up again My son has a learning disability and a cyst on the back of his head. He is suffering – it is painful and he scratches till it bleeds. The GP referred him to the hospital but they said the cist would grow again and it was not worth it. I need help. I feel the pain my son feels. He is in pain and embarrassed to go out. He needs an advocate to help him translate. We also need someone who knows how to work with adults with a learning disability (my son is 29). We need a professional who can help with his learning needs and his health together. (translated by interpreter). Whipps Cross Hospital does not give transport home after serious accidents. If you are young they say no resources. Other hospitals in London do!

o

Papers confused at least 5 times between two brothers with similar names, one with severe diabetes, other with mild diabetes.

o o o

Agency nurses are not so committed to the patients and the hospital Things are dumped on the nursing assistants When my Dad was in hospital he witnessed someone die before him.

Self help I have a back problem, which I can’t remember how to spell (alkolosiney spondulitis?) or something like that. I looked it up on the internet and got an exercise routine which I do every night for about 20 minutes. My back is better now than when I started over 10 years ago and I’ve only had one day sick leave with a bad back in the last two years.

Appendix G Demographics From Health Event Table 1 Proportion of Men and Women who completed a registration form Male Attendees

26 (~20%)

Female Attendees

62 (~50%)

Did not state

34 (~30%)

TOTAL completed Registration

122

Prediction: people who did not complete a registration form

+125

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.. .. .. .. .. Table 2. Community Languages Spoken by attendees who completed the registration form Community Languages Spoken English Bengali Gujarati Hindi Urdu French Punjabi Welsh German Malaylam Swedish IBO TOTAL Did not state on registration form

Number of People 41 7 5 4 3 2 2 1 1 1 1 1 12 languages spoken by 69 people 53

Table 3 Community Groups that attendees came from and completed registration form Community Organisation Hamara Gah Gujarati Welfare association EKTA Stratford Advice Arcade Newham Council- SRU London Ambulance Powerhouse Involving Communities in Health PPFI Newham PCT NCPWLD Carer Support Group NHS LEAN NACCE CEMVO Nulife Newham Deaf Children’s Society Newham Carers Network NCN Surestart North East London Cancer Network Homerton NHS Trust NDC LBN African Health and Counselling Individual not attached to community organisation TOTAL Did not state on registration form

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Number of People 27 15 2 1 2 7 3 1 3 5 1 3 1 6 1 2 2 2 2 2 1 1 1 3 2 3 8 107 people from 28 organisations 15