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Tickboxes and tokenism?: service user involvement report 2022
- Authors:
- BATTY Gillian, HUMPHREY Gemma, MEAKIN Becki
- Publisher:
- Shaping Our Lives
- Publication year:
- 2022
- Pagination:
- 13
- Place of publication:
- Basingstoke
This report is the result of a survey we ran in 2021 to explore people’s experiences of service user involvement. This user-led research shows the current picture of involvement and explores the barriers that deaf and disabled people face when wanting to share their lived experience. 92% of respondents said they would be interested in finding out about (more) involvement opportunities. 63% said they currently find it difficult to find involvement opportunities. Only 39% currently have their access requirements recorded. Of those that didn’t, many thought this would be useful so that organisers could find the right people, plan ahead and make necessary adjustments. Some felt it would help diversity and prevent things going wrong. We asked people what was important for them to be able to take part in involvement activities. 65% said that they needed their access and support requirements organised in advance. This rose to 100% amongst respondents to the BSL survey. Besides meeting their access requirements and other practicalities, people said they needed to be listened to and for their input to have an impact. They want a meaningful experience and do not want their time wasted. This was a key theme throughout the survey. It showed the importance of feeding back to people involved what the outcomes of the work were. Over half (56%) of respondents have difficulty getting their access and support needs met (rising to 89% for the BSL survey). There were a range of reasons given: cost, lack of understanding or awareness, invisible disabilities, multiple disabilities or complicated requirements, reluctance to share information, or organisations do not ask or make assumptions. The report contains recommendations for those who want to run truly inclusive, meaningful involvement to shape their services and make them better for everyone. (Edited publisher abstract)
Behind closed doors: the longer-term impacts of COVID-19 on independent living for d/Deaf and disabled people. Part 2: narrative report
- Author:
- SHAPING OUR LIVES
- Publisher:
- Shaping Our Lives
- Publication year:
- 2021
- Pagination:
- 18
- Place of publication:
- Basingstoke
This report presents a narrative of disabled people's experiences, focussing on four common themes that arose out of interviews and a survey about the longer term impacts of COVID-19, and resulting lockdown measures, on independent living for d/Deaf and Disabled people. These themes are loss of confidence; loss of independent living skills; loneliness and isolation; and what structural improvements could have been made to improve peoples’ experiences of the pandemic. Part One of Behind Closed Doors reflected both negative and positive outcomes for d/Deaf and disabled people as a result of the COVID-19 pandemic, the resulting national and regional lockdowns, and the restrictive policies that have been implemented by central and local governments. Drawing on the in-depth interviews that were conducted with a number of our survey respondents, Part Two illustrates the different ways that individual disabled people have experienced these negative impacts. The individual experiences contained in these interviews come from a broad and diverse range of interview subjects – people of different ages, ethnicities, sexual and gender identifications, geographic locations, work statuses, disabilities. The report highlights some structural improvements that would have made d/Deaf and disabled people's experiences of the pandemic much easier. Respondents said that support frameworks and buddy systems would have made a great deal of difference to their experiences of the pandemic, as well as clearer information about how to access the assistance to which they were entitled during the pandemic, regardless of whether they knew about it or not. It is important to point out, though, that these are only two solutions; we must re-emphasise that deeper structural improvements are required at all levels of service provision and policy-making. (Edited publisher abstract)
Behind closed doors: the longer-term impacts of COVID-19 on independent living for d/Deaf and Disabled people. Part 1: survey results
- Author:
- MEAKIN Becki
- Publisher:
- Shaping Our Lives
- Publication year:
- 2020
- Pagination:
- 56
- Place of publication:
- Basingstoke
This report details findings from a survey about the longer term impacts of COVID-19, and resulting lockdown measures, on independent living for d/Deaf and Disabled people. The findings have been collected through an electronic survey of 36 questions and a section of monitoring data collection that indicates the reach across age groups, location, employment, impairment, shielding status and long-term health condition. This survey was only for d/Deaf and Disabled people. The findings are grouped into five themes: confidence – of the 131 disabled people who took part in this survey, 98 people (75% of respondents) have lost their confidence as a result of COVID-19 and national and regional lockdown measures; independent living skills – of the 120 people who responded to the question, ‘Have you lost daily living skills because of COVID-19 and lockdown?’ 76 people (63% of respondents) felt that they had lost some of their independent living skills; loneliness and isolation – 92 people (79% of respondents) reported that they had become lonelier or more isolated during the pandemic; health and wellbeing – 86 people (72% of respondents) said that at least one of their health or social care appointments had been delayed during the pandemic; beyond Covid-19 – when asked if something good had come out of their experience of COVID-19, and of the national and regional lockdowns, 75 people — more than half of the participants in this survey — gave a positive answer. (Edited publisher abstract)
A Refuge for All best practice toolkit: a practical tool to help make your services accessible for disabled women
- Author:
- SHAPING OUR LIVES
- Publisher:
- Shaping Our Lives
- Publication year:
- 2019
- Pagination:
- 52
- Place of publication:
- London
A toolkit to help organisations make their services more accessible and inclusive for disabled women who are seeking support because they are experiencing, or have experienced, violence or abuse. It includes a simple self-assessment tool and action plan for improvement. It also provides links to additional resources that will help violence and abuse services make inexpensive changes that support a more accessible and inclusive services. The toolkit has been developed as part of the A Refuge for All project, led by an advisory group of disabled women who have lived experience of violence and abuse. The toolkit will also help to make services accessible to disabled men and people from other diverse and marginalised communities. The project was funded by the Department of Culture, Media and Sport (DCMS) Tampon Tax Fund. (Edited publisher abstract)
A Refuge for All project and findings report
- Author:
- MEAKIN Becki
- Publisher:
- Shaping Our Lives
- Publication year:
- 2019
- Pagination:
- 34
- Place of publication:
- London
A report of a project to improve access to violence and abuse services for disabled women. The project, which was led by disabled women with experience of violence and abuse, reviewed previous research, held focus groups and implemented audits and interventions at two pilot sites providing a range of refuge and outreach services. The main interventions were a training needs analysis of staff and disability equality training; an audit resulting in an inclusion recommendations report, and networking with DDPOs other organisations to improve the sharing of knowledge. Areas discussed in the findings include: accessing information, attitudes, accessing buildings, and accessing drop-in services and refuges. The findings show that there has been little progress in the last 10 years for disabled women seeking support when they experience violence and abuse. The pilot site interventions found that training and advice from disabled women and user-led organisations can have an enormous impact on services’ ability to work confidently with disabled women and that a number of small inexpensive adaptations can improve the accessibility of the service delivery. The project also found that the interventions were helpful to other areas of the service, particularly the disability equality training for all staff and making materials and communications more inclusive. The report makes recommendations for improvement and includes specific recommendations for service providers and national policy makers. (Edited publisher abstract)
Improving understanding of service user involvement and identity: a report of research findings
- Authors:
- MEAKIN Becki, et al
- Publisher:
- Shaping Our Lives
- Publication year:
- 2017
- Pagination:
- 41
- Place of publication:
- London
This user-led research aimed to improve understanding of good and bad experiences of service user involvement in the commissioning, design, delivery and evaluation of public sector services and the challenges faced by service users in negotiating their dual role of both being a service user representative and recipients of services. The study draws on the results of interviews with twenty-two Disabled women and men who had experience of being both service users and service user representatives. The findings look at people’s experiences of involvement; relationships and conflicts; and the benefits experienced from being a user representative. The findings reveal a range of conflicts for Disabled people when they use services and are also a service user representative. The report concludes that that when service user involvement is respectful and inclusive, this is beneficial for professionals and service users. However, when arrangements for service user involvement do not pay sufficient attention to the dismantling of barriers to participation, service users can feel their contribution to service development is neither adequately respected nor properly valued. It also highlights tensions when service user representatives notice are treated more respectfully as a representative compared to when they are using services. The report outlines four simple steps that service providers can take to improve user involvement. (Edited publisher abstract)
Improving understanding of service user involvement and identity: a guide for service providers and practitioners organising involvement with Disabled people
- Authors:
- MEAKING Becki, MATTHEWS Joanna
- Publisher:
- Shaping Our Lives
- Publication year:
- 2017
- Pagination:
- 16
- Place of publication:
- London
This brief guide provides essential information for professionals who want to hear the views of Disabled people and use this knowledge to make services efficient and effective for the people who use them. It is based on the findings of research which gathered the experiences of Disabled people who have taken part as service user representatives in the policy, planning and delivery of health, social care and local government services. The guide identifies the essential elements for effective involvement as: equality, mutual respect, ownership, structure, commitment, feedback and development. Sections provide advice on managing relationships and conflict; ensuring the process is inclusive and accessible; and the benefits for service users. It also outlines four essential steps to improving involvement of service user representatives. The advice and tips provided in the guide reflect the principles of the social model of disability. (Edited publisher abstract)
Improving understanding of service user involvement and identity: a guide for Disabled People who are interested in being a service user representative
- Authors:
- MEAKIN Becki, MATTHEWS Joanna
- Publisher:
- Shaping Our Lives
- Publication year:
- 2017
- Pagination:
- 21
- Place of publication:
- London
Listening to service users’ perspectives is increasingly known to be an essential part of developing quality services. This guide provides advice for Disabled people who are thinking about becoming a service user representative. It is based on findings from user-led research which gathered the experiences of Disabled people who have taken part as service user representatives in the policy, planning and delivery of health, social care and local government services. Sections of the guide cover: what to consider before becoming a service user representative; getting the most out of involvement activities; relationships and conflicts with service providers and other service users; benefits and personal development; what makes it a good involvement experience; and working with other service users in an involvement activity. (Edited publisher abstract)
Assisted dying and developing the debate: exploring the issue of assisted dying and its legislation in the UK
- Authors:
- CARR Sarah, BERESFORD Peter, COLDHAM Tina
- Publisher:
- Shaping Our Lives
- Publication year:
- 2017
- Pagination:
- 28
- Place of publication:
- London
Reports on a small exploratory study which brings together opposing views about assisted dying with the aim of identifying any common ground between them which could form the basis of future development and discussion. It draws on interviews with 14 people, seven who opposed legalising assisted dying and seven who supported legalising assisted dying. Participants included people from palliative care backgrounds, organisations concerned with the care and support of older people, a disabled person and individuals from academic, social work and policy backgrounds. The findings are discussed across eight key themes: individual, relational, societal, existential, ethical, legal, practical and clinical. There were a number of shared areas of interest and concern amongst all participants, and the project allowed them to discuss some of the complexities around assisted dying. The report identifies areas that could form the basis of further discussion for the legalisation and possible implementation of assisted dying the UK. These included: social and palliative care provision; equality and equity; the need for carefully planned procedures and safeguards; the need for additional thought and attention in relation to older people; and the existential and ethical aspects of death, such as issues of control and dignity at the end of life. All participants agreed it was important to find a compassionate way forward for people who are terminally ill. (Edited publisher abstract)
From mental illness to a social model of madness and distress
- Authors:
- BERESFORD Peter, et al
- Publisher:
- Shaping Our Lives
- Publication year:
- 2016
- Pagination:
- 76
- Place of publication:
- London
This report draws on the views and experiences of mental health service users/survivors, regarding mental health policy, models and services. It aims to update findings of an earlier 2010 report, ‘Towards a social model of madness and distress?’, which found that mental health service users/survivors felt that a medical model dominated both public and professional thinking and that further discussions about more social approaches to mental health were needed. A total of 82 people took part in this second stage project through discussion groups, individual interviews, and an on-line survey. Participants included a diverse range of service users including, people from rural and urban areas, older women and people from black and minority ethnic backgrounds. Organised in six main sections, the report draws heavily on the comments of service users and includes quotations throughout. The six sections explore mental health service users’/survivors’ views on: a medical model of mental health; reclaiming the term ‘madness’; the social model of disability as applied to mental health; the idea and policy of recovery; social approaches to mental health; and taking forward social approaches to mental health. A final section brings together the findings from the project and offers a set of possible ways of taking them forward. (Edited publisher abstract)