MH:2K Birmingham a Youth-Led Approach to Exploring Mental Health

MH:2K Birmingham A youth-led approach to exploring mental health

October 2018 Contents

Foreword 3

Part One: Introducing MH:2K

1. Introduction 5

2. What we did 7

Part Two: Findings and recommendations

3. Stigma and awareness 12

4. Schools and education 16

5. Services 19

6. Social media 24

7. Families, parents and carers 28

Part Three: Conclusion

Conclusion: Impacts and next steps 33

Appendix: Where to seek help with mental health problems 37

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 2 Foreword.

Welcome to the MH:2K report for Birmingham.

Our area reflects a very diverse population and a very young population. It is therefore crucial that the views of young people are incorporated into our planning for future services. Presented in this document are those views, produced by a dedicated group of young individuals who have shown significant courage in speaking up truthfully and with authority. We thank them for their thoughtful approach, their time and their forthrightness and hope they will continue to contribute to further work.

The recommendations make for powerful reading - some messages are best heard nationally and some are for action locally. I hope the young people involved judge that the system proceeds to listen carefully and do justice to their recommendations.

Dr Angela Brady MBBS MSc (Medical Leadership) DCH DRCOG MRCGP Clinical Director of Mental Health Birmingham and Solihull CCG

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 3 Part One: Introducing MH:2K Section 1: Introduction

Mental health conditions affect about 1 in 10 children and young people, with 75% of mental health problems in adult life, excluding dementia, starting before age eighteen. Given this, it is perhaps unsurprising that young people consistently identify mental health as a priority issue.

MH:2K seeks to give young people a role in solving this most important of challenges. Focussing on those with mental health issues and from at-risk groups, it empowers young people to shape decision-makers’ understanding of both the mental health challenges they face and what solutions could look like.

About MH:2K

MH:2K is a powerful new model for engaging young people in conversations about mental health and emotional wellbeing in their local area. It empowers 14-25 year olds to:

• Identify the mental health issues that they see as most important;

• Engage their peers in discussing and exploring these topics;

• Work with key local decision-makers and researchers to make recommendations for change.

Its design builds on good engagement practice from within and beyond the youth mental health field. Specifically MH:2K features:

• End-to-end youth leadership: MH:2K’s youth-led approach means it is grounded in the reality of young people’s lives. Young people decide its focus, co-lead its events, and determine its findings and recommendations.

• Peer-to-peer engagement: By empowering young people to reach out to their peers, MH:2K creates a safe and engaging space for participants.

• Close collaboration with key decision-makers and researchers: By involving key figures in the project from its start, MH:2K builds trust, enthusiasm and commitment for MH:2K, and the implementation of its recommendations. MH:2K’s six-part design is intended to be transferable. It could work in any UK local area.

In 2016-17 Oldham became the first local area to run MH:2K, supported by Oldham Council, Oldham Clinical Commissioning Group, and a Wellcome Trust People Award. In 2017-18, the success of the project led it to expand to four more areas: Birmingham, Central Lancashire, North Tyneside, and Nottingham and Nottinghamshire. It also recruited a National Advisory Panel.

MH:2K in 2017-18 was supported by the local areas involved and the Wellcome Trust.

The National Partners

MH:2K is delivered by a partnership of charity Involve and social enterprise Leaders Unlocked.

Involve is the UK’s leading public participation charity, on a mission to put people at the heart of decision-making. It supports people and decision-makers to work together to solve our biggest challenges.

Leaders Unlocked exists to allow young people to have a stronger voice on the issues that affect them. It drives greater accountability and fairness by helping organisations to adopt new ways of working with the young communities they serve.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 5 About MH:2K Birmingham

From September 2017 to July 2018, Involve ran MH:2K in Birmingham, supported by Birmingham and Solihull Clinical Commissioning Group and the Wellcome Trust.

The project was commissioned as part of work on Birmingham’s Local Transformation Plan and was owned by the Local Transformation Board.

MH:2K Birmingham engaged over 550 local young people with diverse backgrounds and life experiences. Its participants chose to focus on five areas of challenges for young people around mental health:

• Stigma and awareness;

• Schools and education;

• Services;

• Social media;

• Families, parents and carers.

Over 60 local and regional decision-makers and researchers took part in the project’s Local Advisory Panel or one of its events. This report presents MH:2K Birmingham’s design, findings and recommendations, and initial impacts.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 6 Section 2: What we did

MH:2K Birmingham used a six-part engagement model grounded in the principles of youth leadership and ongoing decision-maker and researcher engagement. This section describes how it worked, taking each of the six elements in turn.

Recruitment (September - October 2017)

MH:2K Birmingham began with the recruitment of twenty-six diverse young people as the project’s ‘Citizen Researchers’. Reaching out through local statutory and community organisations (please see ‘Roadshow’ below), we were able to encourage a wide range of young people to apply. Of the Citizen Researchers we recruited:

• At least 88% have a history of mental health problems themselves, or have close friends or family with mental health problems;

• 28% identified as White (compared to 53% of the 15-25 years old in Birmingham in the 2011 census); 16% as Mixed/Multiple Ethnic Groups (compared to 6%); 28% as Asian/Asian British (30%); 12% as Black/African/Caribbean/Black British (8%); 4% as Other Ethnic Group (2%); 12% Preferred Not to Say;

• 16% identified as LGBTQ+;

• 4% identified as having a disability;

• 32% did not have a religion; 28% were Muslim; 20% were Christian; 8% preferred not to say; 8% were Sikh.

Some of the MH:2K Citizen Researchers. Top row from left to right: Anne, Zeba, Natalie, Lizzie, Lottie, Julie, Shannon, Amy, Olivia, Jasmine, Cristina, Asha, Salma. Bottom row from left to right: Folade, Rimsha, Sarah (staff), Michelle (staff), Huma.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 7 Design Days (November 2017 - January 2018)

We held three one-day events with the Citizen Researchers. During these ‘Design Days’ the Citizen Researchers explored information about youth mental health in Birmingham and nationally. They used this and their own experiences and views to identify the top five mental health challenges facing young people in the area – stigma and awareness; schools and education; services; social media; and families, parents and carers

They also decided where to focus under each of these topics. This included information they wanted to tell their peers, and questions which they wanted to explore.

With these decisions made, the Citizen Researchers worked with us to co-design a workshop template for each topic. They received training in areas such as presentation skills and questioning techniques to enable them to play a leadership role in the Roadshow.

Roadshow (February - April 2018)

Over three months, the Citizen Researchers co-led 36 workshops for their peers, engaging 535 other young people in Birmingham. Statutory, community and voluntary organisations kindly volunteered to host the Roadshow events. Participating organisations, many of which had also supported the recruitment phase of the project, were:

Schools and colleges: Bishop Vesey’s Grammar School, Bishop Walsh Catholic School, Bordesley Green Girl’s School, Erdington Academy, Hamstead Hall Academy, King’s Norton Boys’ School, Mander Portman Woodward, Saltley Academy, Stockland Green School, Swanshurst School, Turves Green Boys’ School, University College Birmingham.

Community groups: Girl Guides, Envision, Out Central, Princes Trust, Spurgeons, St Basils (Edmonds Court Foyer and Carole Gething House).

Youth organisations / centres: Naseby Youth Centre, The Factory, The Pump.

Council / NHS groups: Birmingham Aspiring Youth Council, Children in Care Council.

In addition to the organisations above we would like also like to thank the following organisations for helping with Citizen Researcher recruitment: Aquarius, Bourneville School, Care Leavers, Emerge and Uprising.

Through the Roadshow, the Citizen Researchers collected a wealth of information covering diverse young people’s views on the mental health challenges they face and their ideas for solutions.

Results Day (April 2018)

At the Results Day, the Citizen Researchers considered the information collected during the Roadshow. They used it firstly to determine MH:2K Birmingham’s findings about the challenges facing young people on their mental health. They then worked with the local decision- makers to write the project’s recommendations. These findings and recommendations are covered in detail in the next section of this report.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 8 Big Showcase (May 2018)

The Citizen Researchers presented the project’s findings and recommendations to a much wider range of stakeholders from Birmingham and the wider area. Several Citizen Researchers also chose to share their personal journey of being involved in the project, and all Citizen Researchers took part in a panel-style question and answer session.

Fifty-three decision-makers and researchers attended on the day, led by Paul Jennings CEO of Birmingham and Solihull Clinical Commissioning Group. As well as hearing about the project, they were asked to offer their reflections on the recommendations and their thoughts about how they and their organisations might want to be involved in their implementation.

Local Advisory Panel (Ongoing)

From its very beginning, MH:2K Birmingham was supported by a Local Advisory Panel of key local decision- makers and researchers. Expert Panel members were (in alphabetical order):

Sarah Appleby Mental Health Programme Lead, West Midlands Academic Health Science Network

Emma Matthews Project Manager, 0-25 Mental Health Commissioning, hosted by Birmingham and Solihull Clinical Commissioning Group

Bob Maxfield Participation and Engagement Lead, Birmingham Women’s and Children’s NHS Foundation Trust

Carol McCauley Commissioner 0-25 Children, Young People and Young Adults Mental Health, Birmingham and Solihull Clinical Commissioning Group

Paul Patterson Digital Engagement and Public Health Lead, Birmingham Women’s and Children’ NHS Foundation Trust

Adrian Phillips Director of Public Health, Birmingham City Council

Nishant Prasad Young person

Anna Robinson Project Lead - Mental Health and Wellbeing, Birmingham Education Partnership

Helen Wadley CEO, Birmingham Mind

The Panel played a key role in the project. Among its many contributions, it helped identify the information on mental health given to Citizen Researchers at the first Design Day, provided the Citizen Researchers with feedback on their choice of focus areas, and identified and invited potential attendees to the Big Showcase. It also helped the project to build on, rather than duplicate, Birmingham’s existing work on mental health, and to make connections with local organisations working with young people. Six Expert Panel members attended the Results Day.

Following the Big Showcase, members of the Local Advisory Panel are looking at how best to take forward implementation of MH:2K Birmingham’s recommendations. Further information on the steps taken and the impacts of MH:2K Birmingham to-date can be found in the conclusion to this report.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 9 Part Two: Findings and recommendations This section presents MH:2K Birmingham’s findings and recommendations. It takes each of the Citizen Researchers’ five priority topics in turn:

• Stigma and awareness;

• Schools and education;

• Services;

• Social media;

• Families, parents and carers.

MH:2K Birmingham’s findings focus on the key pressures facing young people in Birmingham around their mental health.

The Citizen Researchers decided these findings, based on information collected at 36 Roadshow events, attended by 535 of their peers. For information on Roadshow attendees, please see Section 2 ‘What we did’.

MH:2K Birmingham’s recommendations focus on solutions for improving the mental health and emotional wellbeing of young people in Birmingham. The Citizen Researchers worked with members of the project’s Local Advisory Panel to co-create these recommendations, which are based on ideas collected during the Roadshow.

It is important to note that not all of the pressures identified in the findings are addressed in the recommendations. The Citizen Researchers focussed the recommendations on the ideas for change that they felt were most likely to work and have the greatest impact.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 11 Section 3: Stigma and awareness

MH:2K Birmingham’s Citizen Researchers identified five findings on stigma and awareness. The findings seek to answer the question ‘What have you heard young people, your family, or people in your community say about mental health that is negative or unhelpful?’ They are presented below, illustrated by relevant quotations from Roadshow participants. Citizen Researchers’ own words have been used alongside the quotations to explain why each finding is important.

The Citizen Researchers, together with the Local Advisory Panel, made six recommendations for change on this topic. Again, these are covered below. Each one is presented with a brief comment from the Citizen Researchers.

Finding One: Seeking attention

Some people believe that young people with mental health issues are just seeking attention. They don’t understand what young people are going through and their situation.

“Attention seeker”

“Attention seeking”

“Attention seeking - especially if self-harming”

The Citizen Researchers argued that people need to understand why young people are acting in a certain way in order to know how to help them. Instead of blaming young people, they should get to know them.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 12 Finding Two: Stereotyping and judgement

Some young people report facing stereotyping and judgements about their mental health problems. This comes from everyone, but particularly from young people who are the same age or slightly older. The Citizen Researchers noted that some slightly older peers grew up in a world where mental health wasn’t discussed and where there were stereotypes like serial killers (e.g. American Horror Story).

The Citizen Researchers reported that the stereotyping and judgement isn’t name calling and aggressive. Instead it takes the form of isolating the individual and pitying them. The only exception is being called a ‘special snowflake1’ on social media. Special snowflake is usually used to mean a person who is “too convinced of their own status as special and unique [person]… to be able (or bothered) to handle the normal trials and travails of regular adult life.”

The Citizen Researchers argued that these types of stereotyping and judgement make young people feel less human and less capable. Being isolated makes them feel alienated and like nobody carers. It can also make young people feel that others are afraid of them, which in turn makes young people feel like a danger to others and themselves. They worry about scaring someone.

The Citizen Researchers also noted that when young people don’t care much about themselves because of their illness, they care a lot about what other people think. They suggested this was particularly true for young people with Borderline Personality Disorder.

Finding Three: Cultural pressure

In some cultures and ethnic communities mental health isn’t always seen as significant. Some people believe it can be overcome through religion.

“Religion - they don’t believe in MH”

“Culture - don’t believe in mental”

The Citizen Researchers argued that this devalues the importance and significance of mental health. It reinforces the marginalisation that young people can feel. It also leads to young people being given unrealistic and impractical solutions for overcoming their problems (e.g. you should just pray more). It makes young people apprehensive about whether or not they are going to receive the right support.

Finding Four: No-one cares

Young people can feel like no one cares about them because they have to be so extremely ill before they receive professional help, or are taken seriously. Other young people and services can expect you to look really ill, leading them to say things like ‘you don’t look depressed’. The Citizen Researchers felt that this was particularly unhelpful because young people often hide what they’re feeling.

“Fear of not being taken seriously”

“You don’t look sad”

“You look fine”

“It’s not that bad”

“You’re just a child, you don’t understand”

“You’re just a goth / emo”

1https://en.wikipedia.org/wiki/Snowflake_(slang) accessed 1 July 2018, 09.41.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 13 “You’re too young to be depressed”

“What have you got to be depressed about”

The Citizen Researchers also talked about young people making themselves more ill in order to get help, and so that others recognised what they were going through. They said that young people can feel that they need to over-exaggerate what they’re feeling, and look and act a certain way in order to get support.

Finding Five: Glamorising self-harm

Self harm is often portrayed as glamorous and a positive thing to do, particularly on social media. The Citizen Researchers felt that a lot of people without mental illness do self-harm because it’s trendy (e.g. #CutForBieber, #cut4zayn).

They also noted that there are apps and chatrooms that encourage self-harm and suicide (e.g. Blue Whale and suicide chat rooms). They felt that the internet in general, and particularly tumblr, is really bad for encouraging and glamorising self-harm. They argued that there was no monitoring of content. If a young person types in ‘self-harm’ they get pictures of self-harm. The Citizen Researchers felt that they shouldn’t.

The Citizen Researchers also talked about bad role models on social media. They gave the example of Eugenia Cooney. She is a well-known internet vlogger on YouTube. She is clearly anorexic and posts dangerous content. She earns £52,000 a year from her online presence and has over a million followers.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 14 Recommendations on stigma and awareness:

1. Provide better education for religious leaders, parents and teachers. These are the people giving advice so the advice needs to be well-informed and practical.

2. Talk to parents about young people and mental health, including asking how to make it easier and accessible for them to learn about the issue. It’s important to know first hand from parents the best ways to target them and make it easier and accessible for them to learn about mental health. Parents who have had a child with mental health problems could talk to other parents about it.

3. Promote community responsibility through community events, workshops and social centres in religious buildings. These events should be run by young people supported by local services. They would promote the idea of community responsibility, moving away from individual responsibility. They would help to ensure extra support is available as family networks may not be strong and service waits may be too long.

4. Provide ongoing, 1-2-1, anonymous and confidential support through a real person. There should be the chance for young people to provide their details anonymously, for example through dropboxes in religious buildings or surveys at school.

5. Raise awareness about mental health through recognised partners and platforms These could include clothing brands, celebrities, youtubers, make-up brands, sports clubs (including football, boxing, gyms), and the arts (including music, film and graffiti). The traditional ways of raising awareness through education are not as effective because they are not relatable. Decision-makers must find creative ways to raise awareness that young people can engage with. Information should also be put in places where young people with behavioural issues can find it easily (e.g. school and club toilets, detention centres, headteachers’ offices), as their problems may be linked to mental ill-health.

6. Employ more specialised and proactive staff, instead of having generic wellbeing staff who take a passive role. It is important to have a designated person who understands their work and audience. For young people to understand their issues and deal with them, there needs to be an opportunity to build rapport and have a relationship that is tailored to each individual.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 15 Section 4: Schools and education

MH:2K Birmingham’s Citizen Researchers identified five findings on schools and education. These are presented below, illustrated by relevant quotations from Roadshow participants. As far as possible, Citizen Researchers’ own words have been used alongside the quotations to explain why each finding is important.

Finding One: Exams

Some young people feel that there is too much pressure to achieve from both family and school. It can make young people feel stressed and that they are not good enough.

“Exams - feel like you gotta meet your expected grade - people look down on you - low self esteem”

“Exams - stress of them not doing well, letting down your parents / teachers”

“Not achieving expected grades - lowers your self-esteem”

“Pressures from teachers and parents, anxiety, stress, pressure to succeed and help school get good results”

The Citizen Researchers agreed that this affects all young people.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 16 Finding Two: Comparisons

Some young people say that are always being compared to their family and friends, by both themselves and other people.

“Comparison to peers”

“Comparisons with others”

“Teachers comparing you – favouritism”

“Comparisons e.g. comparing your financial situation with someone else - self-confidence

goes down”

The Citizen Researchers noted that this makes young people feel like they have to look and act in a certain way. It makes it hard for young people to have an individual and original identity.

Finding Three: Support

Some young people report a lack of people that they feel able to talk to. This can make young people feel isolated. Many don’t want to talk to teachers. They would rather talk to someone separate.

“Feeling isolated / trapped”

The Citizen Researchers argued that young people need to be able to talk to someone about life and their troubles. They need to feel that people care and that they are being listened to.

Finding Four: Bullying

Bullying makes young people have low self-esteem and feel unwanted. People need to understand the effects of bullying.

“Bullying - low self esteem and confidence”

“Bullying – unwanted”

“Bullying - under pressure”

“Bullying - self-esteem drops, feeling worthless and depressed, suicidal thoughts, self-harm, breakdowns”

“Bullying: physical, verbal, cyberbully, psychological, spreading rumours”

“Bullying stays with you - words hurt”

The Citizen Researchers noted that bullying impacts on mental health. The young people affected can develop a negative mindset.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 17 Finding Five: Relationships and friends

Problems with friendships and relationships (e.g. friendship fallouts) can leave young people lonely and feeling left out.

“Feeling isolated - friendship groups”

“Friendship breakups - lonely, loss of interests (in the absence of friends) not focussed”

“Friendship fallouts - cannot focus in schools and competition between friends”

“Friendship groups – influence”

“Friendship groups - unable to cope with opinions”

The Citizens Researchers said that this can make young people feel like no one is there for them. They can also lose trust in other people and begin to self-doubt.

Recommendations on schools and education

1. Have younger mentors. This would make young people feel like they can relate to them and build a relationship. The mentors could be older students from within the same school or people who come in each week.

2. Make teachers aware. Mental health training should be compulsory for all teachers and staff. Teachers should know how to respond to and support students. They should understand triggers and behaviours. This would help young people bond with teachers.

3. Change sets. Sets make young people feel dumb. They shouldn’t be based on ability. Instead they should be based on learning styles (e.g. visual, aural, kinaesthetic).

4. Provide revision tools. Teachers tell students to revise but they don’t always know how. It’s important that young people are taught how to revise so that they don’t revise the wrong things or in the wrong way.

5. Run group sessions. Young people need a space where they can let out their emotions. These sessions could be mindfulness, yoga, discussions about issues, spaces to vent. Schools should have a cool off room.

6. Listen to school councils. Young people should have a voice within school. They have important opinions that should be listened to. Teachers should trust young people more and praise them more often.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 18 Section 5: Services

MH:2K Birmingham’s Citizen Researchers identified five findings on services. The findings seek to answer the question ‘What would stop a young person in Birmingham seeking help?’ They are presented below, illustrated by relevant quotations from Roadshow participants. As far as possible, Citizen Researchers’ own words have been used alongside the quotations to explain why each finding is important.

The Citizen Researchers, together with the Local Advisory Panel, made seven recommendations for change on this topic. Again, these are covered below. Each one is presented with a brief comment from the Citizen Researchers.

The Citizen Researchers are keen to point out that, while their findings and recommendations have naturally focussed on what could be improved about services, there is also much that is positive about them.

Finding One: Issues with services

Some young people reported experiencing a number of issues with local services. These included:

• A lack of compassion and respect towards young people (e.g. dismissive, patronising, not listening);

• A lack of continued support – young people talked about there being no consistency in professionals, transitions being poorly handled, care being inconsistent, and poor communication between different services;

• Concerns about treatments – young people reported concerns about misdiagnoses and/or the efficacy of a given treatment, and lack of awareness about choice;

• Fear – young people expressed a perceived lack of power and control, and a fear of complaining even when it is clearly justified. Some young people felt that their complaint would be dismissed on the basis that they had a mental health issue. The Citizen Researchers noted a lack of trust in professionals and services, and concerns about mistreatment and the abuse of power.

• Waiting times are too long – young people said that they had to struggle to start receiving care. The Citizen Researchers also noted a lack of funding.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 19 The Citizen Researchers argued that these issues were important for a number of reasons, including.

• If young people don’t feel respected, they won’t respond well to treatment;

• Young people will fall through the cracks if they are let down by service provision and poor communication within and between services;

• If young people don’t understand their treatment, they are less likely to adhere to it. If misdiagnosed, their condition could get worse.

• If young people don’t feel in control of their condition, they are less likely to stick to plans made or return at all if they are not being heard.

• Long waiting times lead to conditions worsening.

Finding Two: Awareness and education

The Citizen Researchers identified a lack of awareness and education about mental health. They found that some young people don’t know how to recognise mental health problems and don’t understand what is happening to them.

“Confusion - What is actually happening to them?”

They also found that young people can lack awareness about what services are available, what they offer, how to access them or which service would be best for them. Young people suggested that information about services is poorly promoted to young people, sometimes written in an inaccessible way and sometimes impossible to get.

“The centres are unknown and are poorly promoted”

“Unaware of the services”

“They might not know what type of help – immigrants”

The Citizen Researchers felt this lack of awareness and education is important. If young people don’t understand that they might need help, then they won’t try to access support. If they don’t know how to access services, they won’t do it.

Finding Three: Personal barriers

Young people may have personal barriers to seeking help. These can take various forms.

Young people with a mental health issue may find that the issue itself makes it more difficult to ask for help or access services. They may feel unworthy, scared or hopeless (i.e. that there problem is incurable and that they can’t be helped). They may have fears of transport or talking.

“Scared to leave the house”

“Transport - difficult to reach destination - someone with anxiety may not be able to travel far”

“Incurable?”

“Feel like they can’t be helped”

Some young people struggle to trust strangers (i.e. professionals). They may not trust them to keep what they say confidential, if they discuss their problem and open up. These young people may be experiencing shame or fear.

“Embarrassment - they are not normal”

“Ashamed of condition”

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 20 “Fear of what others think”

“Fear of being judged”

“Might tell other people”

“No trust that no-one [sic] will keep the secret”

Young people can also be worried about how other people will react (e.g. their parents or guardians). Sometimes the reactions aren’t as bad as young people think they will be, but sometimes they are.

“Family - they judge you”

“Family - they don’t believe in mental health”

“Family – ashamed”

“Fear of families”

Young people may fear the implications of having a mental health condition. They may be worried about therapy or, particularly, medication.

Finding Four: Religion, culture and community

Some young people reported a lack of belief in mental health issues in their culture or community. Young people suggested this had a number of impacts, including making them fear:

• Worrying, or being judged by, their family;

• Judgement or isolation by the community;

• Being considered to have ‘sin in them’.

Some young people felt ashamed to tell their friends, fearing judgement, mockery and a lack of support. The Citizen Researchers noted that a lack of belief in mental ill-health meant some cultures want to deal with any mental health issues internally. Some may want faith-based interventions, rather than those provided by services.

“Culture; religion”

“Judgement - isolation - think you have sin in you”

“Community look down on mental health”

“Feeling like your friends will mock you”

“Trust - friends judge you”

“No peer support”

The Citizen Researchers argued that the above made some young people feel less support was available to them. They noted that Birmingham is culturally diverse and no one service is going to work for everyone. They suggested that services should be tailored to meet individuals’ specific needs, including their culture and religion. They also argued that people should not feel isolated, judged, or afraid to talk about their issues. Everyone should be able to access support in their community and feel safe doing so.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 21 Finding Five: Accessing services

Some young people reported barriers to accessing services. The Citizen Researchers noted that:

• Referral routes are unclear and confusing;

• Language barriers may exist and resources catering to this need are not well promoted;

• Young people with a learning or physical disability may find accessing services hard. Young people with sensory differences may need additional resources catering to their needs. Young people with learning disabilities may not be well-catered for and lack power;

• Financial barriers mean some young people may not be able to afford transport to their appointments and/or their medication;

• Young people may not understand the jargon and wording used by professionals or in the literature provided;

• Waiting times are also an access barrier.

The Citizen Researchers concluded that services were not currently accessible to all and did not consider all young people’s access needs equally. This meant that some young people who need help may not be able to access it.

They noted that it’s difficult to work out what you have to do to be accepted into a service in the first place, and that it’s frustrating to have to figure out what’s going on when the support isn’t clear enough.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 22 Recommendations on services

1. Improve funding for mental health services in Birmingham. This might be about demanding more funding, or about distributing funding to the right services and places. Improved funding would enable decision-makers to take problems - like long waiting times, lack of availability of appointments, types of services being too sparse - more seriously.

2. Ensure better continuity of care and transitions into, between and out of services. Examples of what this could look like include: • Building more sustained relationships – seeing the same professional/young person builds trust and understanding. Information is not regurgitated or repeated to the frustration of the young person. •Sending follow-up letters/emails to ask young people whether they want to continue their care plan information is followed through and services provide suitable and appropriate interventions where needed; •Better communication about young people within and between services – young people feel valued, looked after and in control.

3. Provide professionals in education settings who are linked to services in Birmingham. They could make first interventions, offer support and ensure equality in the support provided. This would reduce the pressure on teachers and services. These professionals would also have no conflict of interest; they could provide impartial advice and, where necessary and appropriate, challenge education establishments. They could provide a first step into services.

4. Run more roadshow events or pop-up hubs that provide information about services. These should be in educational and/or other young person settings. Volunteers and health care professionals would speak to young people about what the service can offer, referral systems, and the experience of the service. The professionals could also provide sound and informed advice, and support. The volunteers could be young people including those who use the service. Young people can relate to other young people more easily, so this would break down barriers to accessing services.

5. Create more specific and understandable materials (print and online) to raise awareness of particular mental health issues. The materials should cover diagnoses, advice, and routes to care. They should be more specific to what young people want and more relevant. They should be more understandable, in simple language and not patronising. Decision-makers should distribute these materials in more places where young people are, such as schools, universities, youth centres, shopping centres, cinemas and club toilets.

6. Introduce better feedback and complaint procedures. Feedback should be collected regularly. The complaints procedure should be clear, listened to and taken seriously. It could involve questionnaires and space to comment. It should be accessible for young people with disabilities and any information and materials should be available in different languages.

7. Tailor services to the individual’s needs so that everyone can access mental health services. This could include offering online messaging, systems and apps, cultural competency around different religions and cultures, and improved access. Examples of ways to improve access include being near public transport to help with financial needs, having the option of home visits, and providing hearing loops and materials in braille.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 23 Section 6: Social media

MH:2K Birmingham’s Citizen Researchers identified five findings on social media. These are presented below, illustrated by relevant quotations from Roadshow participants. As far as possible, Citizen Researchers’ own words have been used alongside the quotations to explain why each finding is important.

The Citizen Researchers chose to focus their findings on what isn’t working about social media for young people. However they also collected information on the positives of social media. You can see young people’s thoughts on this question at www.involve.org.uk/mh2k-birmingham.

The Citizen Researchers, together with the Local Advisory Panel, made eight recommendations for change on this topic. Again, these are covered below. Each one is presented with a brief comment from the Citizen Researchers.

Finding One: Bullying

Young people can face several forms of bullying on social media. These include:

• Hate comments - e.g. “fat”, “ugly”

• Discrimination - e.g. sexism, racism

• Blackmailing – threats to post personal information

• Prank calling

The Citizen Researchers argued that this can lead to emotional wellbeing and mental health issues such as low self- esteem and depression. It can also make young people feel isolated.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 24 Finding Two: Pressure

Young people face many pressures on social media. This includes pressure to look a certain way, peer pressure to wear certain clothes and brands, and pressures around photoshopping to show you have a small waist and are skinny. Young people can also face pressure around trying to fit into a certain social group and the expectations that go with that in terms of how they should look and behave.

“Photoshopping / fake pictures”

“Seeing people that you feel are prettier than you damages your confidence”

“Fashion - makes other people feel bad because they don’t have branded clothes”

“Expectations in groups”

“You may change the way you look at yourself”

The Citizen Researchers argued that this can lead young people to feel like they have to look just like everyone else in order to fit in. Young people can be forced into doing things they don’t want to do. This pressure can also lead to anxiety.

“Get forced to do things you don’t want to do”

Finding Three: Not knowing who people are

Young people face risks on social media including catfishing (e.g. fake accounts, talking to an older person), stalkers, paedophiles (taking advantage of harmless pictures) and child exploitation. They can share information including phone numbers and naked pictures not knowing who will be able to see them. Young people sometimes share naked pictures when they are under age.

“Manipulation - someone pretends to be someone else to convince them to do something”

“Catfish - someone pretending to be someone else (child predators)”

“Catfish - it can make you feel good about yourself”

“You’re not completely sure about who is on the other side of the screen”

“Meeting friends and we do not know who they are”

“Predators”

“Social media platforms like snapchat can be used for sexual exploitation”

The Citizen Researchers suggested that this could lead young people to put themselves in danger, when this could have been prevented. They argued that situations like this can end badly due to manipulation.

Finding Four: Sharing personal information

Some young people believe that self-harming will take away the pain. They believe it will make problems or experiences like grief or loneliness go away.

“Some people believe it takes away the pain”

“Sense of relief”

The Citizen Researchers suggested that what you post online as a young person can affect your later life, including job interviews and applications. They argued that snapchat location puts young people at risk of stalking.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 25 Finding Five: Inappropriate content

Young people can see inappropriate content online, including racist pictures and comments, distressing videos such as beheadings and rape attacks, extremist and terrorist content, and violence (fights, stabbings, gangs).

“Youtube - bad content”

“Distressing videos”

“Radicalisation”

“Religious extremism”

“Exposed to violence”

The Citizen Researchers suggested that young people may be distressed by viewing certain comments and videos.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 26 Recommendations on social media

1. Provide monthly workshops in schools, covering coping mechanisms, how to use social media safely, and the dangers of social media. The workshops would refresh young people’s memories on how to cope online, the harmful effects of trolling and that bullying is a crime.

2. Ensure young people can have confidential 1-2-1s with tutors in school and at university. This would give young people someone to talk to outside of home and the assurance that the conversation would be confidential. It would enable young people to express their feelings out loud instead of bottling them up. It would help prevent young people from feeling alone and isolated.

3. Train professionals in the signs of mental health problems and how to approach young people about them. The training should be provided online and offline. It should be available to personal tutors, and those running workshops and youth clubs for young people.

4. Raise awareness of clubs and workshops for young people in the local area. This includes youth clubs, youth groups at religious institutions, scouts, brownies etc. It should be done by handing out leaflets in school, and adverts on YouTube and other social media channels. This would give young people safe spaces to stay in and talk, including talking to adults other than their parents. It would help young people to realise that they are not alone and to meet others with similar issues.

5. Provide evening workshops for parents The workshops should help parents to understand the risks on social media, how to help and support their child and how to balance their child’s independence with keeping them safe. The workshops should be advertised in schools and via letters sent home from schools. Refreshments should be provided to encourage attendance.

6. Use snapchat discovery stories and other social media content - such as questions, games, articles and facts - to raise awareness of the issues. Social media is easy for young people to access and familiar to them. Decision-makers could post something every week. It is the main way that they can advertise to a wide audience.

7. Approach popular young vloggers and ask them to help promote mental health awareness. Decision-makers could also ask charismatic young people to make videos about mental health. Many young people find vlogs and videos a fun way to view content, and find it easier to relate to other young people than to adults. Put in the right place, the vlogs and videos would make content available on platforms that young people often enjoy.

8. Social media companies should make accounts automatically private. This would help ensure sure that people understand that they are fully responsible for making accounts public. Privacy settings should also be more advanced, so that certain people can only see certain posts.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 27 Section 7: Families, parents and carers

MH:2K Birmingham’s Citizen Researchers identified five findings on families, parents and carers. The findings seek to answer the question ‘What family pressures affect young people’s mental health?’They are presented below, illustrated by relevant quotations from Roadshow participants. As far as possible, Citizen Researchers’ own words have been used alongside the quotations to explain why each finding is important.

Finding One: Cultural expectations and acceptance

Some young people can have their mental health negatively impacted by family acceptance and cultural expectations. Young people can feel like they are not understood. They can face expectations around jobs, educational decisions (e.g. subject choices, university), sexuality, and personal identity.

“Over bearing parents - chose their life already”

“Having cultural expectations”

“Parents wanting you to ‘not be like everybody else’”

“Being different and family not understanding”

“Being accepted as LGBT+”

The Citizen Researchers suggested that these can cause a barrier to develop within the family.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 28 Finding Two: Abuse and neglect

Some young people face abuse and neglect, sometimes linked to arguments within the family. They can carry these emotional stressors into adulthood.

“Abusive behaviour towards you”

“Physical conflict”

“Domestic abuse”

“Neglect”

The Citizen Researchers noted that there are degrees to verbal and emotional abuse. They suggested that the way families and carers communicate with young people can create a barrier and cause young people to withhold their emotions, particularly when teenagers are going through hormonal changes.

They also suggested that neglect can be accidental. A parent may be busy with other responsibilities, but the lack of a stable support network can still affect the young person’s mental health.

Finding Three: Transitional phases

Some young people face pressures and fears resulting from changes to their living situations. These can include fear of eviction, unemployment or employment difficulties (for both themselves and their families), housing waiting lists, and changing and connecting households.

“Eviction”

“Housing”

“Financial problems occurring in family”

“Work / unemployment”

Finding Four: Bereavement and serious illness

Some young people face bereavement and serious illness.

“Loss of family members”

“Parents / extended family becoming ill long term”

“Grandparents - illness – worry”

“Bereavement”

The Citizen Researchers argued that a lack of communication from family members and carers at this time can affect young people’s mental health in a number of ways. Some young people’s families may be emotionally unavailable to support them. Young people may think they are to blame is they don’t understand the situation. A lack of information can also stress out the young person, even if the family thinks it is hiding information in order to protect them.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 29 Finding Four: Bereavement and serious illness

Some young people face bereavement and serious illness.

“Loss of family members”

“Parents / extended family becoming ill long term”

“Grandparents - illness – worry”

“Bereavement”

Finding Five: Roles at home and responsibility

Young people can face many responsibilities at home. Their workloads can impact on their ability to handle their mental health.

Pressures that young people face may include pressure to study and do well at school, being a role model for siblings, caring for siblings, being a carer for a family member, and looking after the household (chores, paying bills etc). The Citizen Researchers suggested that looking after siblings impacts young people’s own mental health because they are already managing their siblings’ wellbeing.

“Parents not being able to care for themselves”

“Expectations - jobs at home and do well at school / work”

“Having to help out at home more than others do”

“Split families - looking after siblings”

The Citizen Researchers noted that the impact of being the main young carer in a household can be particularly pronounced. This is especially true if the responsibilities placed on the young person cause mental or emotional distress. This can be difficult to deal with, especially if the young person has no one to turn to for support and help.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 30 Recommendations on families, parents and carers

1. Provide more family therapy. There should be more support available to the whole family unit. It is important to have a space where family members feel they can talk freely, a non-judging environment which addresses communication barriers and related skills.

2. Share data between services and organisations Services and organisations should be better at sharing people’s data with each other to create a pool of information about a family. The data should also be shared with families themselves and they should have the right to refuse consent to be part of the data pool. The Citizen Researchers felt that this would reduce the number of times people have to repeat their situation, improve understanding of what a person is going through, increase a person’s chances of finding advice and help, and decrease the chances of a relapse. By putting people in control of their information before they see a mental health professional, it would also address issues related to confidentially.

3. Run more workshops for young people. There should be more workshops available locally so that young people have regular access to mental health resources. The workshops should be available for different age ranges. They should include speakers who have experienced similar family pressures and training in interpersonal skills. They should also include the third sector organisations, who could help with early interventions. They would reduce waiting times for mental health support.

4. Run more regular family-based community events. These should have the dual purpose of encouraging family bonding, and increasing awareness of mental health issues including spreading information. The events should include local community influencers and speakers, who are aware of differences across families (e.g. cultural and religious differences). They should also include speakers who have experienced similar family pressures, who could share their own experiences and the strategies they used to overcome their problems.

5. Ensure better communication between families and services. The content of materials and support provided to families should be better. The advice given to parents should be practical (not too biological) and not be patronising. There should also be follow-up support in place.

6. Create a First Aid app. There should be an app that provides young people with on-the-go support and advice. The app would allow young people to alert their families when they are having issues. It should be linked to local mental health support. Young people should be in control of the app themselves.

7. Take national action. Local issues are important but there also needs to be national action. There should be more funding for schools and mental health services. There should be national research on the impact that wellbeing in families is having on young people’s mental health and emotional wellbeing. Parents and carers should be entitled to on¬¬e paid day off work a month, during which they can observe and bond with their children and set goals with teachers around mental health and emotional wellbeing and related progress. This could be achieved by increasing family involvement in school activities, not limiting it to family-teacher meetings.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 31 Part Three: Conclusion Conclusion: Impacts and next steps

The publication of MH:2K Birmingham’s findings and recommendations marks the finish of its six part methodology. A fitting end for this report is therefore to look both backwards and forwards – to consider what impact MH:2K has had to date, and what is likely to happen next.

All of the findings below are taken from the initial results of MH:2K’s independent evaluation. Unless otherwise specified, they show the findings from across the four local areas who ran MH:2K in 2017-18, rather than for Birmingham specifically. There is no indication at this stage that the results for Birmingham as an individual area deviate in any significant way from this overall picture.

Impact on decision-makers and researchers

MH:2K aims to produce recommendations that are useful to decision-makers and researchers. The initial evaluation results suggest that decision-makers and researchers see MH:2K as having achieved this aim:

• 92.8% of decision-makers and researchers who attended a Big Showcase event said that the recommendations are very useful;

• 98.5% agreed or strongly agreed that MH:2K would make a positive difference to mental health services in the local area;

• 98.5% agreed or strongly agreed that they would do something new or differently as a result of the project.

Usefulness of findings Not at all useful Not very Fairly useful Very useful Fairly / and recommendations useful very useful (138 respondents) 0% 0.7% 6.5% 92.8% 99.3%

“I think MH:2K will make a positive Strongly Disagree Agree Strongly agree Agree / difference to young people’s mental disagree strongly agree health services in Birmingham.” (134 respondents) 1.5% 0% 40.7% 57.8% 98.5%

“I will do something new or differently Strongly Disagree Agree Strongly agree Agree / as a result of the findings and disagree strongly agree recommendations from MH:2K.” (130 respondents) 0% 1.5% 43.1% 55.4% 98.5%

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 33 Decision-makers and researchers attending the Birmingham Big Showcase identified a wide range of specific actions to take forward or changes to their thinking. Examples include:

“One of my roles is to support the evaluation of CYP Mental Health Transformation Plan. I will use the recommendations as a guide and challenge to this evaluation.”

“Pursue a clearer definition of the capacity / skills needed in schools.”

“Discuss concerns about a lack of empathy from professionals with colleagues.”

“Think about how to have open discussions with young people and families about mental health to support whole family to understand.”

“Thinking how to ensure the services I commission can support transitions for young people moving out of the area e.g. universities.”

“I will take them back to the Institute of Mental Health the University of Birmingham and see how we can integrate them into research and practice.”

“I would like to use the young people’s recommendations as a springboard for discussions within our service about increasing the voice of young people who are adopted and the impact this can have on their wellbeing.”

Impact on Citizen Researchers

MH:2K is not just about influencing mental health decision-making and research. It also aims to provide a developing and empowering experience for the Citizen Researchers involved.

The initial evaluation results show significant self-reported impacts for the Citizen Researchers. 91% said that their knowledge of mental health issues had increased. 89% identified improvements to their presentation skills, 86% to their confidence and 82% to their feelings of wellbeing. 86% said that they now felt more optimistic about their future.

Status now, compared to before MH:2K…

Self-Reported Impacts Much A little About the A little Much Overall (based on 44 responses)* worse worse same better better better

Knowledge of mental health issues in general 0% 0% 9% 39% 52% 91%

Knowledge of young people’s mental health in 0% 0% 9% 23% 68% 91% my local area

Presentation skills 0% 0% 11% 32% 57% 89%

Listening skills 0% 0% 20% 25% 55% 80%

Confidence 0% 0% 14% 34% 52% 86%

Overall feeling of wellbeing** 0% 0% 16% 32% 50% 82%

Optimism about my future 0% 0% 14% 36% 50% 86%

*One additional response was excluded due to uncertainty over its accuracy **One Citizen Researcher didn’t answer this question

Evaluation interviews with individual Citizen Researchers suggested additional impacts. For example, some Citizen Researchers reported that MH:2K had made them want to work in the mental health sector or had reinforced their wish to do so. Others suggested it had helped them find employment.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 34 Impact on Roadshow participants

Roadshow participants only spent an hour (one Roadshow workshop) participating in

MH:2K. The content of the Roadshow workshops also varied, with some having a much more explicit focus on where to go for help than others.

Despite the above, young people who participated in the Roadshow did report some impacts from their involvement in the project. These included increased awareness of where to go for help (60%) and more confidence to seek help (47%).

Impacts Knowledge about Greater awareness More confidence to New or improved Other (based on 872 mental health of where to go seek help skills responses) 59% 60% 47% 47% 11%

84% of Roadshow participants said that they had enjoyed taking part in the project.

Next steps in Birmingham

The MH:2K Birmingham Big Showcase was held on Wednesday 2 May 2018. In the few weeks since then members of MH:2K’s Local Advisory Panel have begun discussions about how to take forward MH:2K’s recommendations.

The early signs are positive. The Clinical Commissioning Group has made a commitment to take forward the recommendations through Birmingham’s Local Transformation Plan. They have also confirmed their intention to continue to involve young people as they do so.

Conclusion

MH:2K Birmingham has achieved the aims it set out to deliver. It has empowered 14-25 year olds to:

• Identify the mental health issues that they see as most important;

• Engage their peers in discussing and exploring these topics;

• Work with key local decision-makers and researchers to make recommendations for change.

In addition the project has had, and looks set to have, significant impacts. This is true of its effect on both participating young people, and on decision-makers and researchers.

MH:2K’s independent evaluator will return to Birmingham next year to see what has changed as a result of MH:2K’s recommendations. We look forward to seeing the progress that has been made.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 35 Appendix Appendix: Where to seek help with mental health problems

The tables on the next two pages list some of the services available to young people in Birmingham and nationally.

Drop-in services, helplines and online support

What’s it called? What is it? How to find it

Pause A city centre drop-in service in Birmingham, All the details about the drop-in sessions with sessions in Digbeth and Aston. are here: forwardthinkingbirmingham.org.uk/ They also have on-line self-help materials. services/13-pause

The self-help materials are here. It’s a really long link so we’ve shortened it to: bit.ly/2E6MXtu

The Mix Free confidential support for under 25s, Freephone including 1-2-1 online chat, a telephone themix.org.uk helpline, telephone counselling, webchat counselling and email advice.

Childline A free, private and confidential service for The free phone number is children and young people - online, on the 0800 1111 phone, anytime childline.org.uk

Papyrus A charity that aims to prevent young The free helpline number is 0800 068 4141 suicides. It has a helpline for young people or you can text 07786209697 at risk of suicide or for people worried papyrus-uk.org about a young person at risk of suicide called HOPELineUK.

Rise Above Helps 11-16 year olds build emotional riseabove.org.uk resilience by equipping them with knowledge and skills to deal with pressures they may face. It also provides an online platform through which young people can talk to their peers alongside professional support.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 37 Information hubs and self-help

What’s it called? What is it? How to find it

Childline As well as their support services, Childline childline.org.uk have lots of great information, advice, and self-help tools on their website too.

The Mix As well as their support services, they have themix.org.uk lots of information about different mental health issues on their website.

NHS Choices An information hub offering young people nhs.uk/conditions/stress-anxiety- advice and help on mental health problems depression/ including depression, anxiety and stress.

The Moodzone An information hub including: nhs.uk/conditions/stress-anxiety- depression/ • Tips and advice to boost mental health

• Self-help and treatments

• Other people’s stories

• What to do if you need urgent help now

Young Minds Lots of information for young people about youngminds.org.uk/find-help mental health and emotional wellbeing

Headspace Free app that helps you to learn meditation headspace.com and mindfulness. Useful for a variety of issues including stress, anxiety, focus and sleep.

MH:2K Birmingham – A Youth-Led Approach To Exploring Mental Health October 2018 38 For more information about MH:2K, please contact:

Sarah Allan, Head of Engagement, Involve [email protected]

@involveUK www.involve.org.uk

Rose Dowling, Director, Leaders Unlocked [email protected]

@leadersunlocked www.leaders-unlocked.org

Published October 2018.