Better experiences. Better outcomes. Tackling stigma together. Time to Change Mental Health Professionals Pilot Project

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1 Better experiences. Better outcomes. Tackling stigma together. Time to Change Mental Health Professionals Pilot Project

2 Foreword Lisa Rodrigues, CBE, Chaired the Mental Health Professionals Project, championing and promoting the work on behalf of Time to Change. In 2014, Time to Change invited those who care about NHS mental health services to face a difficult truth: that 1 in 3 people reported experiencing lack of compassion, even stigma, in those services. 1 The findings were repeated several times. We could not ignore them. Time to Change know you don t shift attitudes by blame. Their approach is positive and supportive. They have achieved measurable, sustained success in improving public attitudes to mental illness. Our project with mental health professionals built on this approach. It explored what gets in the way of compassionate care and what can be done to make things better. We have learned a lot. Including that staff need time out in a safe place to explore attitudes and values, and why sometimes they fall short of providing care to which they aspire. I thank everyone who has generously contributed to our work people who use mental health services, their families, staff in our six pilot trusts, colleagues at Rethink Mental Illness, Mind and Time to Change, and partners including the Royal College of Psychiatrists, NHS Providers and the Royal College of Nursing. Working together, supported by NHS England, we have achieved more than we dared hope. The Mental Health Taskforce Report published earlier this year showed that those who work in mental health services are under greater pressure than ever before. We are acutely aware of this. There is still much to do to tackle the stigma associated with mental illness. Please join us. Thank you. Thank you. Lisa Rodrigues CBE Contents 1. Foreword 2. Introduction 3. Background 4. Workstreams 5. Aims 6. Partnership 7. Results 9. Learning 1. Experiences of discrimination among people using mental health services in England , British Journal of Psychiatry,

3 Introduction In February 2015 Time to Change launched a new project tackling the stigma people using mental health services report experiencing within those services. Activities focused on opening up a dialogue about this issue, allowing mental health professionals to lead the discussion and develop practical actions. Working with mental health trusts, and people that use and work in mental health services, we have demonstrated real and concrete change. Independent evaluation shows: Improvements in the attitudes of mental health professionals about people with mental health problems Improvements in intended behaviour towards people with mental health problems Changes in actual behaviour to improve the experience of people using mental health services This project has helped thousands of mental health professionals to begin conversations about tackling stigma in services It s important to me that this project isn t me standing at the front of a room telling professionals that they re all bad - because they re not. This project is about having discussions with staff. This project is not a list of words to avoid. It s a discussion about values, attitudes and culture. Dan Beale-Cocks Expert by Experience As a result of the campaign we have changed quite a few things and I can say that these changes wouldn t have happened without the Time to Change campaign. Team manager 02

4 Background Time to Change is England s biggest programme to end the stigma and discrimination faced by people with mental health problems. The programme is run by the charities Mind and Rethink Mental Illness and funded by Department of Health, Comic Relief and Big Lottery Fund. Between 2007, when the campaign started, and million people have improved attitudes, and 2.8 million intend to improve their behaviour towards those of us with mental health problems. There has been a significant reduction in the proportion of people reporting discrimination in relevant life areas from 40% in 2008 to 26% in Despite this, around a third of people using mental health services report stigma and discrimination within those services. People tell us this has a significant impact on their overall experience of mental health services. After 30 years of using mental health services, I have been subjected to a range of interactions from health professionals, from the appalling to the fantastic. Those who fall into the fantastic, have made the difference (sometimes critical) to my personal wellbeing. My experience of being ignored, discriminated against, and having had people say oh it s one of those people post overdose, has been so destructive and diminishes trust. This is less common, but these things still happen. Stephanie de la Haye, Expert by Experience In February 2014 Time to Change held a roundtable event to discuss these findings with key stakeholders. A scoping report was commissioned to understand more about experiences of stigma within mental health services, and it found the main concern of people who use services was that they sometimes did not feel listened to, taken seriously or respected. 2 The report recommended breaking down the them and us barrier by focusing on jewels of good practice and working closely with champions in mental health trusts. 2. The Potential for Attitude and Behaviour Change driven by Mental Health Professionals: A Scoping Report for Time to Change, Disability Rights UK,

5 Workstreams Using insights from previous Time to Change activity, and expertise from those that use and work within mental health services, activity was framed around starting conversations about mental health and encouraging staff to think about their own practice. Partner Trusts Our two Partner Trusts, 2gether NHS Foundation Trust and Northumberland, Tyne and Wear NHS Foundation Trust (NTW) committed to a year long project tackling stigma across the organisation. The key activity for these trusts was co-developed and facilitated workshops with staff, framed around open discussion and bringing together staff and people who used their services. Often delivered in teams, workshops were an opportunity for an intensive session of staff reflection. Campaign Trusts In addition, we delivered a national campaign which launched in February 2016 and provided training materials to open up the conversation about mental health stigma within services. In addition to our two Partner Trusts, four trusts committed to the activity in advance Cumbria Partnership NHS Foundation Trust, Cheshire and Wirral Partnership NHS Foundation Trust, Barnet, Enfield and Haringey Mental Health Trust, and Oxleas NHS Foundation Trust. Mental health professionals were encouraged to download the training pack and facilitate discussions with their colleagues on experiences of stigma within their services. Anti-stigma activity Though trusts were recruited in different ways, many of them spread the word to all staff through multiple activities. This included strong participation in Time to Talk Day, Time to Change s national day of talking about mental health, and local community events (e.g. sports events). Common factors were the positive approach, the enthusiasm of staff to discuss stigma and honest discussions about how change could be brought about. 04

6 Our aims and approach In a time when services are stretched to capacity, we wanted to create activity that allowed individuals to lead on championing the topic, using their own experience of mental health problems where they felt comfortable, and engaging with people who use services throughout. We knew change had to come from those that work with and in mental health services. All activity followed the same basic principles from activity, to project outcomes, to project vision. Project vision Project outcomes Activity People who use mental health services report reduced levels of stigma and discrimination in mental health services. More staff recognise that stigma is something they personally can tackle. Staff take personal actions to improve the experience of people using services. Staff feel more confident about disclosing their own experience of mental health problems to colleagues and peers. Trusts and stakeholders engage in anti-stigma activity. Individuals and teams begin discussions about stigma and discrimination. Time to Change provides support and information. People work in mental health because they want to work with mental health why would they discriminate? Psychology lead My positive experience was that my psychiatrist respected my need to go to work even when I was seriously ill They saved my life and because of that my daughter and grandchildren still have me in my life. I will always be grateful for that. Thank you. 05 Person who uses mental health services

7 Working in partnership Activity was scoped, designed and delivered in partnership with a host of mental health professionals, people who use mental health services, and stakeholders. By sharing their knowledge, advice and suggestions with the Time to Change team, they co-developed this activity. Experts by Experience sat on the Working Group for the project, sharing examples of stigmatising care, and of excellent service experiences. It really felt like co-creation. Sometimes you hear the word co-creation and it turns out to be someone telling you what to do. This was different. It really worked. Expert by Experience Mental health professionals participated in focus groups, workshops, stakeholder events and briefed creative agencies. Senior leaders in mental health trusts helped us understand structural barriers and effective approaches to reaching and engaging professionals. Partners from other organisations gave us context, and helped us frame the project in positive terms. No-one really wants to talk about their own mental health problems with colleagues. Maybe with closer colleagues at the pub, but not at work. Mental health nurse Mental health professionals with experience of mental health problems The mental health of professionals threaded through the project. Some people told us they were able to be open and comfortable about their mental health with colleagues and managers, but this wasn t the case for everyone. It was important activity allowed people to talk about their own mental health, but only if they felt comfortable and safe doing so. Not everyone was ready to be open, but the project allowed them to still get involved and champion anti-stigma activity. 06

8 Results Our work was independently evaluated, with a focus at this pilot stage on the attitudes and behaviours of mental health professionals. Many of our findings are indicative, but they suggest the project has successfully stimulated discussion, challenged attitudes and begun to change professional practice. Outputs We worked closely with our two Partner Trusts, supporting them to deliver their own workshops to over 220 individuals. Across 52 mental health trusts 187 staff downloaded campaign materials, with plans to deliver the workshop to around 7,000 further professionals. 220 non-nhs Mental Health services, general health services and social care professionals expected to deliver to a further 7,000 people. This totals 14,000 individuals expected to take part in campaign workshops. Positive impact on attitudes As a result of the campaign, there was a statistically significant 11% improvement in staff strongly feeling personally able to make a difference to the experience of service users. After attending trust facilitated workshops, there was a 9% increase in staff feeling that people reporting stigma had valid concerns. There was also an increase from 42% to 50% of staff willing to have a close personal relationship with someone with a mental health diagnosis. 3 Changing intended and actual behaviour People who took part in campaign activities and trust facilitated workshops both thought they were more likely to make changes as a result of the work, and some described changes they had already made. 67% of respondents said that as a result of the campaign they were more likely to find out about the small things that can make a positive difference to the experience of people using services. When followed up several months later nearly half (46%) of respondents who attended a trust facilitated workshop had made changes to their practice. 3. Across four given diagnoses personality disorder, depression, eating disorders and schizophrenia. 07

9 My involvement with the Time to Change workshops really changed my view on stigma. It made me feel more responsibility for making people feel stigmatised. Personally I like to think the campaign made me want to do more. It made me want to relook at things and I d like to think it s the same for most of the staff here. Workshop facilitator Clinical service manager Examples of individual and organisational change There is evidence that individuals and trusts are integrating materials and activities from the project into trust-wide change and Organisational Development Strategies. These included the following: Creating the role of Stigma Champions in teams and assigning staff members to those roles Challenging negative attitudes in fellow team members Adding anti-stigma training to existing training Signing the Time to Change pledge Changing the structure of sessions with people who use services to be more dialogue based Altering language used on wards to reflect the way someone being treated may feel as a result Running Time to Talk Day activities with teams to talk about their own wellbeing 08

10 Learning The project covered new ground, and we learnt lots that can be used for future activity. We ve provided research, summaries of insights and materials that can be used at time-to-change.org.uk/professionals. The key learning from the project: Stigma and discrimination is a complex topic, but there are lots of professionals ready to explore and tackle it. Time to Change provided the impetus, but activity was championed and led by professionals across all levels of seniority and disciplines. Framing materials in the context of professional development gave people permission to assign dedicated time in an environment where time is sparse. Both our campaign materials and the workshops developed by trusts centred on instances people reported experiencing in mental health services. This gave the activity credibility and gave professionals examples they could hang their conversations around. Stigma is a complex area and sometimes professionals struggled to articulate it without a person who had used mental health services giving examples of their personal experience. The project was at its strongest when Time to Change provided learning and materials and professionals adapted them to suit their circumstances. Everyone did things slightly differently to make it workable within their trust environment. I just know it s something we must and need to support so I m currently looking at whether it fits within another training course we are already offering. Mental health professional 09

11 When I apologised for wasting her time she told me that as a human being, I had a right to physical and mental wellbeing, as anyone would. Person who uses services Key learning (cont): Many people felt that if there was less stigma around the experience of professionals, this would positively impact on the experience of people using services. Activity that focused on the mental health of professionals (such as Time to Talk Day) helped people feel the focus was on them as well as on people who used their services. When trusts were able to commit to activity on a broader scale, with strong leadership from senior figures and thematic work across a longer period of time, the impact was greater. We found staff who had worked in trusts 5-15 years were less likely to take action as a result of the campaign than those who had been there less than or more than this. It could be that targeted work for those staff would have a particularly significant impact. We deliberately focused on general examples of stigma in the campaign materials, because professionals sometimes distanced themselves from obviously stigmatising behaviour, and we needed people to take collective responsibility for change. However, some people (particularly those very close to the issue) wanted to see more challenging examples of stigma. Mental health nurse I wanted to get involved in this project as a nurse and user of mental health services. When talking about the work I ve been doing, the response I ve had has been overwhelming and unexpected. I find the more I talk about the project and my individual journey the more conversations I am having. 10

12 Thank you To our stakeholder and Working Group friends and colleagues, in particular: Dan Beale-Cocks Gaby Cooper Stephanie de la Haye Dr Muj Husain Dr Amy Jebreel Rachel Jones Lisa Matthews Professor Jane Melton Dr Sara Munro Sarah Paynter Robert Peacock Daniel Regan Lisa Rodrigues Greg Rogers Simon Sherring Caroline Wild Cheryl Woodward NHS Providers Royal College of Psychiatrists Additional resources available at time-to-change.org.uk/professionals include: Summary of insights Scoping reports Evaluation Executive Summary Trust facilitated workshop outlines Campaign materials Time to Change, Broadway, London, E15 4BQ T: E:

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