issue 38 | winter 2020 membership news · final assignment last year, she felt an overwhelming...

Issue 38 | Winter 2020

‘Diet culture and fat phobia are everywhere’Instagram star Megan Jayne Crabbe on body positivity

Men and mental healthHas anything really changed?

Overcoming phobiasMember Katie on living with fear

Antipsychotic medicationYou share your experiences

Membership News

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Issue 38 | Winter 2020Mind | Membership News

welcome

20 Katie shares her experience of needle phobia

This magazine is for and about members like you

Mind Membership News is published quarterly by Mind (registered charity number 219830) © Mind 2020. Unless otherwise stated all images are the copyright of Mind. Opinions stated are not necessarily those of Mind. While all effort is taken to avoid errors, Mind cannot be held responsible for the accuracy of statements made by contributors to this magazine.

Mind, 15-19 Broadway, Stratford, London, E15 4BQ. T 020 8519 2122 F 020 8522 1725 If you would like to update your personal details please contact the Membership Team at the address above or phone 0208 215 2243 or email [email protected]

Editor: Matt Kurton Designed by: Barney Haward Membership Manager: Sabrina Aziz Membership Officer: Kate Parks Head of Communications and Marketing: Annabel Davis Printed by: Resource Print

Renew your membershipRenew your membership online at mind.org.uk/renewal. Alternatively, call the Membership Team on 020 8215 2243

Become a member todayTo join a growing group of people who play a part in everything we do, please go to mind.org.uk/membership

There’s no doubt that the focus on mental health is growing, but is real change following? Starting on page 10, our latest research shows that men’s attitudes to mental health have been slowly shifting, while Rob from Sheffield Mind makes clear on page 8 how cuts to services are piling pressure on his work to improve housing and mental health. Your support as a Mind member is vital at this time, as we do everything we can to turn attention into meaningful action. Here’s to another year of pushing for progress together. Thank you so much for being with us, Paul Farmer CEO

Meet a member

Sharing a message of hopeJust four years ago, Mind member Georgia repeatedly tried to take her own life. Today, she’s just finished a degree and started her dream job – and she contacted Mind to spread the message that change is always possible.

03 Meet a Mind member Georgia’s graduation glee04 Fancy a very special stroll?

Introducing The Mind Walk06 Mind news

Media Awards and George Ezra07 Mental health news

1000s of appointments cancelled08 A day in the life

Meet Rob, housing project manager10 Four-page focus

Men and mental health14 Advice for staying well

Hoarding explained15 Advice to protect your rights

The law and hoarding16 Megan Jayne Crabbe What is body positivity?18 Local Minds, changing lives Prize-winning Mind Pembrokeshire20 Phobias in focus Member Katie on fearing needles22 Antipsychotics

Your experiences in depth24 Members' artwork More of your inspiring paintings

“I’ve seen other positive stories in the membership magazine and that’s what prompted me to get in touch,” Mind member Georgia explains. “I think my story proves that no matter what label you’ve got or what battles you face, if you try your damnedest, it’s not a write-off. You can achieve your goals.”

It was 2011 when Georgia signed up for a distance-learning Bachelor of Science degree with the Open University. She did so expecting only to start a few modules. “I was so ill I tried suicide multiple times,” she says. “I often felt: 'No way am I going to get through this week, never mind finish a degree.’”

Several years into her course, she was diagnosed with

borderline personality disorder (BPD), and while she says the diagnosis made sense, it left her reeling. “I was told: ‘This will always stay with you. You can recover but you’ll always have struggles’. It basically felt like a life sentence, like I have this now and this is who I am. It's as if I was broken.”

From degree to ideal jobIt’s no surprise, then, that when Georgia handed in her final assignment last year, she felt an overwhelming sense of achievement. “I bawled!” she laughs. “It was mega! I felt like: ‘Yes I have mental health issues. Yes I’ve had to fight tooth and nail. Yes, it’s taken me a bloody long time. But I did it.’”

She puts the turnaround down to finding the right combination of support: “friends who gave me the strength to keep going, some great counsellors, some exceptional crisis team workers and self care – like crafting, Netflix, music and gaming”. She also highlights the power of not giving up: “I had many moments where all I wanted to do was give into my head, and many times I did, but when those feelings eased off slightly, I kept fighting and putting one foot in front of the other until things slowly started to become easier”.

The good news didn’t stop when Georgia’s course ended. Having focused on mental health-related subjects, such as psychology and counselling, during her degree, she applied for her “dream job” as a support worker at a mental health rehabilitation unit – and got a call later the same day telling her she’d got the role.

“I was so ill at one stage that I was an inpatient myself,” she says. “Now here I am able to help others. So I’d like to send a message to everyone out there who is struggling: however bad things are right now, they will not stay that way forever. You will be happy again if you just keep fighting, and if you don’t feel like you have enough strength then borrow some from people around you. Whatever it takes, just don’t give up.”

We’d like to thank and congratulate Georgia for sharing her story. Want to tell us more about you? Then email [email protected]

22 Eleanor and other members on antispychotics

24 Check out a selection of your fantastic artwork

Georgia (right) collects her Open University degree in 2019

[email protected]

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Issue 38 | Winter 2020Mind | Membership NewsMind | Membership News

New for 2020: The Mind WalkFancy taking a trek through central London to put mental health on the map? Then join us for The Mind Walk. We’d love to see you there.

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On Saturday 4 April, hundreds of Mind members and supporters will cross the Thames at Lambeth Bridge, make their way along the north side of the river and cross back to Battersea Park before heading back for the finish line of The Mind Walk. When they do, they will have achieved something incredible.

Not only will they have completed a personal challenge – walking 10 kilometres past some of central London’s most famous landmarks – but they will have raised money, raised awareness and stood alongside others who share their determination to improve mental health.

It’s a fundraiser with a difference. It’s a challenge, but designed to be achievable. You can walk at whatever pace you prefer, because this isn’t a race to the finish line. It’s a chance for all of us to fly the flag for better mental health.

As Vicky Urquhart, our senior community fundraiser, explains: “The Mind Walk will help make sure mental health problems are seen and heard. We’re asking supporters to join a community and walk 10k proudly out in the open for better mental health. It’s about raising money for vital services like the Mind Infoline, but it’s also about the act of fundraising and encouraging people to be open about their relationship to mental health.”

Why John is walking with Mind“It was only recently that I started looking at my mental health and accepting that I do have issues with anxiety. I was aware of them before but dismissed them as something not to worry about.

Now, by taking part in The Mind Walk, I want to raise awareness of the help that is currently available and do what I can to improve things. It’ll be a great feeling on the day, knowing we will be making a difference and speaking to other people to see what they think and are doing about mental health.”

Top tips

• Download our resources to help you talk about The Mind Walk

• Ask friends and family to join you

• Plan some practice walks, slowly increasing the distance

• Set up a JustGiving page to make donations easy

• Enjoy the big day – and plan a celebration afterwards!

What you need to know

When: Saturday 4 April, 10am

Where: The start and finish is at Archbishop’s Park in Lambeth SE1 7LE

What: A 10km walk – friends, family, children and dogs welcome!

Fundraising goal: We’re asking everyone who takes part to aim to raise £100

Battersea Power Station

Houses of Parliament

Chelsea Bridge

Battersea Park

START/FINISHArchbishop’s Park Lambeth

The Mind Walk will help make sure mental health problems are seen and heard.Places are strictly limited and filling up fast, so don’t delay. Register for an unforgettable day out at The Mind Walk at mind.org.uk/themindwalk

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Behind the headlines Our take on the latest mental health storiesMind News You’re at the heart

of everything we do

And the winners are…

Mind members joined celebrities, filmmakers, journalists, DJs and podcasters in London’s Southbank Centre in November, to celebrate the best representations of mental health across the media at the 2019 Bupa Mind Media Awards. Thanks to all of you who helped to shortlist for the awards. This year’s winners were:

Digital Champion: Rosie Cappuccino, Talking about BPD

Documentary: Iraq: A State of Mind, BBC Arabic Documentaries

Drama: The Virtues, Warp Films for Channel 4

Entertainment: Lorraine’s Shine a Light campaign, ITV

Journalist: Marverine Cole, Black Girls Don’t Cry

Podcast: MQ Open Mind: How can we work together to prevent suicide

Publication: Veterans in Crisis, JPI Media Investigations

Radio: Mental Health Monday: Lost Childhood from Radio City Talk: Liverpool

Student journalist: Rosie Dowsing: Fathers on the Edge

News and current affairs: Channel 4 News

Soaps or Continual Series: The Archers

Lighten the Load Hero: Peter Martin

Speaking Out: David Harewood

Making a Difference: Sir Norman Lamb

EFL partnership wins gold

Our On Your Side partnership with the English Football League (EFL) has won the Gold Award for Sponsorship/Partnership of the Year at the Football Business Awards. The groundbreaking initiative beat off competition from

a shortlist that included projects from Barcelona, Leeds United, Norwich City and Tottenham Hotspur.

We’ve worked with the EFL since July 2018 to help improve the nation’s mental health and wellbeing through the power of football. The award was announced as we launched our ‘Have Your Mate’s Back’ campaign as part of the partnership, encouraging fans to look out for their friends and break through mental health stigma.

Find out more about all the work we’re doing with the EFL at mind.org.uk/EFL

What happened?We uncovered data that showed the NHS in England had cancelled 175,000 appointments in Child and Adolescent Mental Health Services in the past year – an annual increase of 25%.

What we said… “Despite mental health problems increasing among children and young people, many are simply not able to access support,” said Vicki Nash, our Head of Policy and Campaigns. “The NHS in England has promised £2.3bn a year for mental health, in part to improve children and young people’s mental health services. But political inertia means this plan is at risk, with a lack of investment in the NHS workforce and buildings.

“The UK government must ensure that the progress made over the last few years is not lost, in order to ensure that all young people get the right care, in the right place, at the right time.”

Thousands of young people’s appointments cancelled

For more on the latest stories, head to mind.org.uk/news

George Ezra raises £168,000 for Mind

Our new Mind Ambassador, chart-topping musician George Ezra, has raised an incredible £168,000 to support our work. He raised the money through bucket collections and merchandise sales at his UK tour – and by

arranging two special shows at the Royal Albert Hall, with all of the profits donated to Mind. We’d like to say a huge thank you to George for putting on the shows and to everyone who donated so generously throughout the tour.

People with mental health problems unaware of disability rights

What happened? Almost half of the 1,700 people who responded to a Mind survey were unaware that a mental health problem could be classed as a disability. As a result, they are missing out on important workplace rights and protections – such as the right not to be discriminated against and the right to have reasonable adjustments made by an employer.

What we said… “The Government must commit to clarifying the definition of a disability under The Equality Act to make sure staff with mental health problems have better access to rights and protections in work,” Vicki Nash said. “This will help to protect people from discrimination in the first place, and to challenge their workplace if they are discriminated against on the grounds of a health condition.”

Children with learning disabilities and autism failed in mental health hospitals

What happened?A damning report from The Joint Committee on Human Rights condemned the ‘horrific reality’ of the treatment of many young people with learning disabilities and autism in mental health hospitals. The committee found that treatment such as physical restraint and seclusion causes suffering and long-term damage, and called for an overhaul of inspections and changes to the Mental Health Act.

What we said…

Vicki Nash commented: “The fact that anyone could go into a place which is meant to be a place of safety to

receive care and support and be at risk of leaving more unwell is unforgiveable. We know people with mental health problems who are locked up in mental health hospitals also face this kind of treatment, often being restrained or given inappropriate medication.

“The new government must commit alongside the NHS to improving mental health wards, staffing and training for staff, as well as putting in place the recommendations made in last year’s Mental Health Act review, to better support people who find themselves in these settings.”

Vicki Nash, our Head of Policy and Campaigns

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Want to suggest a job in mental healthcare you’d like to know more about? Work in mental health and want to share your story? Email [email protected] and we’ll be in touch.

A day in the life

Rob Lawson, Housing and Accommodation Project Lead at Sheffield MindIn his role running Sheffield Mind’s Connect 3 housing service, Rob Lawson helps people with mental health problems to find a home and get the support to live well. He takes us through a typical day and explains why pressures on the mental health system are transforming his workload.

We were set up to provide a low level of mental health and tenancy support, but people are coming to us with far greater needs.

9amI arrive in the office and get my team of eight key workers together for our weekly meeting to discuss people who have recently been referred to our service. We run Connect 3 with South Yorkshire Housing Association. The service was set up to provide temporary accommodation for people with mental health problems, help people manage their own tenancies and support people in their own homes.

Recent cuts to social services and mental health services in particular have changed the work we do so much though. We’re finding that more and more people are being assessed for mental health and social care packages but not meeting the threshold for support – because the threshold is so high now – so they are coming though our door. We were set up to provide a low

level of mental health and tenancy support, but people are coming to us with far greater needs.

Our original remit was to help someone who, say, might have split up with his wife, lost his job and found himself in a one-bedroom flat. He’s struggling with depression and it’s his first time claiming benefits, so we help him navigate through the system to live independently and get his life back on track.

But honestly those people just aren’t getting through the door now. People are coming to us in crisis. This morning we discuss two new referrals who are both seriously ill and have been referred to us by court officers because the eviction process has started.

11amA key worker wants to update me on an individual she has been supporting. It’s a positive story. This man came to us three months ago after his benefits had been sanctioned. Our service has been swamped by people who have been thrown into poverty during the drive to Universal Credit; food banks are playing an essential role here.

This individual came to us in debt and he had basically shut the front door and pulled the quilt over his head. His anxiety and depression had grown, he was too anxious to answer the phone, and he had gone under the radar until his landlord tried to begin the eviction process.

He was referred to us and we put a support plan in place and then helped to put the brakes on, calling all of the gas suppliers and loan companies and mobile companies

that had been sending letters to him and asking them not to contact him. At that point we can become the conduit for any conversations. We put a plan in place for his payments and communicated that to the organisations he owes money to, as well as helping him maximise the benefits he is entitled to.

The support worker said the colour is literally back in this person's face. People have often lost all faith in services, but they immediately put trust in us. You can’t underestimate how valuable that can be.

12pmAnother member of staff returns to the office having visited an individual we have been supporting who has severe paranoia. She thinks he may pose a risk to himself. I contact our local safeguarding service who recommend calling 999 if it’s an immediate risk. I do that and 999 tell me to contact the mental health team. I contact them and get through to an answer machine. When they return my call, they tell me to call 999. It can be frustrating.

I’ve been hospitalised myself. I went through the trials and tribulations that somebody who’s ill just doesn’t need to go through.

Eventually the mental health team agree to send a mental health officer to check the person’s welfare. I go to the property too, to try and calm the situation down. I’ve been hospitalised

myself. I went through the trials and tribulations that somebody who’s ill just doesn’t need to go through. Several members of our team have lived experience of mental health problems, which I think gives us a good level of insight.

2pmBack in the office for the afternoon, I spend time meeting with several members of staff. Because of the nature of the work, you see very difficult things on a daily basis. It’s important for people to have the chance to offload and to feel reassured that they are doing all they can. We’re fortunate to have the luxury of a counsellor here at Sheffield Mind, and we tap into her support quite often.

4pmThe day finishes with a meeting with local commissioners. It’s important, I think, to make sure people know about the services and expertise we provide. We gather all the evidence we can of the difference we make. One person who comes to mind was in serious debt and drinking heavily, and his relationship with his landlord had totally broken down. Today he’s sober, he’s got a flat in a nice area and he’s a peer supporter in our service. That’s really powerful.

It’s not an easy role we play here, and we have to be realistic about what we can achieve in the current system. But the job can mean so much, and it’s fundamental to how I’ve been brought up to fight for people, so they can enjoy their rights and live their most comfortable life.

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Continues over

Four-page focus

Men and mental healthIt’s been a decade since Mind first started focusing on how men think about and respond to mental health differently to women, and we’ve recently published a new report looking at progress in that time. So have things changed for the better, and what still needs to happen to help men open up and get the right mental health support when they need it?

Back in 2009, Mind commissioned a piece of research to understand the differences between men’s and women’s mental health. We published our findings in a report called ‘Get It Off Your Chest’ – and the differences we found were stark.

Men were less likely to seek help from their GP when they felt low and half as likely to go to a counsellor. They were much more likely to react to difficult times by drinking alcohol, taking recreational drugs and getting angry. They were half as likely to talk to friends about problems. And men were more likely to think they could fight off feeling low, with young men the most likely group of all to tell a friend to ‘pull themselves together’.

The writers of that report highlighted how difficult it is to explain the reasons for these differences, because so little research had been done into men’s mental health.

But they did suggest that social pressure and upbringing could play a role, with boys encouraged to show traditional masculine values, like being tough and

keeping emotions hidden, while girls are expected to be sympathetic and good at talking. Big boys don’t cry, as the old saying goes.

The researchers also found that many men who had tried to get help felt that mental health services seemed more targeted at women. Men often found it easier, they suggested, to seek help through men’s groups, online information and anonymous support forums.

And the researchers also highlighted the additional pressures on gay men and men from black, Asian and minority ethnic (BAME) communities. Better training and more understanding were vital, they said, to meet people’s specific needs more effectively.

The report concluded with a range of recommendations to inspire progress, covering everything from male-specific mental health services to the need for employers to focus more on men’s mental distress. But a decade later, has the situation really improved? We recently repeated the research to find out.

Much greater change is neededSo what conclusions can we draw from the most recent study? For Vicki Ensor, our Senior Policy Advisor, there are some reasons for cautious optimism. “It does feel that there is a closing of the gap between the experiences of men and women in some areas,” she says, pointing to men’s increasing willingness to seek help as an example.

“But we also need to consider this study alongside other research that’s happened since our first report. Talking is a Lifeline, a recent Time To Change study, found that three-quarters of men wouldn’t feel able to tell friends if they had a mental health problem. And a recent inquiry at Parliament into men’s and boy’s mental health heard from children’s charities, prison charities, drug and alcohol

charities and homeless charities who all felt that the situation isn’t changing enough.”

And, as Vicki also points out, there is one statistic that hasn’t changed since 2009 – or indeed since the 1990s – but which stands out among all of the others. Three-quarters of people who take their own life in the UK are men.

The National Suicide Prevention Strategy includes a focus on preventing suicide in men, and we’re now calling on the government to set specific targets for reducing male suicide – and provide the resources to achieve them. Stopping suicide must be an urgent priority.

The new research shows progress in some areas but also plenty of reasons for concern. For instance, the number of men who regularly feel low has not only grown during this time – it’s grown at double the rate for women (with 50% of women saying they regularly felt low in 2009, compared with 53% in 2019).

And while men say they are now more likely to look for information about mental health, see their GP, talk to their family, talk to a friend, find a therapist and buy a self-help book than in 2009, more men also say that not knowing where to start is one of the main reasons they wouldn’t seek help. One in five men still feel that way.

When it comes to the pressures on men’s mental health, the new findings are also complex. Men, like women, are

currently less worried about job security and are also less worried about money than they were in 2009 (when the financial crisis had just hit). But new pressures are emerging, in particular related to social media and appearance.

When the first research was done, Twitter was only three years old and Instagram didn’t exist. Now, more than half of men – 58% - said social media has a negative impact on how they feel, and the number of men worried about their appearance has also grown. As one person involved in the research put it: “You’ve got all these social media platforms where, in a split second, you are completely judged on how you look, right? It makes you extremely aware of body image… and certainly affects your confidence.”

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A changing picture?

37% 23% 29% 31%2009

43% 35% 34% 28%2019

of men said they regularly feel worried or low

said they would see a doctor if they felt low

said they would talk to a friend

said embarrassment was one of the main reasons they wouldn’t seek help

Men and mental health: 2009 vs 2019

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Mind | Membership NewsMind | Membership News

Brian’s storyFive years ago, a friend died by suicide. His final letter described a dark place. I realised that I’d come to know that dark place all too well. I felt as if I was standing at a cliff edge.

Eventually I began to speak about my feelings. It was a lifeline. I learned mindfulness practices that have really helped, alongside better self-care.

Over the years, I grew out of the idea that we must keep quiet about our mental health and built my own circle of friends who cared about my mental wellbeing.

I became a lot more open about my feelings, which gave me a sense of empowerment and freedom.

It wasn’t until I took full responsibility for my own mental health that I started to notice a change in myself. I started to develop a positive outlook on life and found solace in getting back in shape, by regularly going to the gym and completing strenuous walks up Pen Y Fan. It was my escapism.

Brian shared his story as part of the Time to Change Wales ‘Talking is a Lifeline’ campaign, which encourages men to open up about their mental health struggles and ask others ‘Are you alright?’

How can we support men more?Last year’s Get It Off Your Chest research includes our latest recommendations for politicians, employers and mental health service providers. We want the government to commission a Men’s Mental Health Taskforce – to complement the existing women’s taskforce. The recent parliamentary inquiry came to a similar conclusion – calling for a National Men’s Health Strategy.

We also need more funding for awareness campaigns like Have Your Mate’s Back (see photo, right), more research and data collection to build our understanding of men’s needs, and more efforts to support and improve suicide prevention plans.

We need employers in industries with largely male workforces and high rates of mental health problems to promote wellbeing and put effective support in place.

And we need to make sure training for mental health professionals encourages staff to recognise and respond to the different challenges faced by men and women.

As we meet with politicians and policymakers in the coming years, we’ll be raising all of these issues and keeping the pressure on for real change. The pace of progress – as in so many areas of mental health – is currently nowhere near where it needs to be. But, with vision, investment and commitment, we can help men and women to open up with greater confidence, knowing that the specific support they need exists and will help them through tough times.

Mind’s work with menWe’re here to make sure everyone with a mental health problem gets support and respect, and our work includes many projects tailored particularly for men. For example:

Our groundbreaking partnership with the English Football League (EFL), which is helping us transform understanding and awareness of mental health among football fans.

Our work with young black men, which last year included the launch of a new programme working with young black men aged 11-30 across local and national services.

Our Time to Change campaign, which we run with Rethink Mental Illness. One recent campaign from Time to Change encouraged men to ‘Ask Twice’ if they suspect friends are saying they are fine when they’re not.

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To keep up with all the latest Mind news, campaigns and research, visit mind.org.uk/news-campaigns

The Have Your Mate’s Back campaign raises awareness of mental health amongst football fans and clubs. Everyone in the football community is encouraged to wear their football shirt backwards to show their support for the campaign.

Mind | Membership News

mind.org.uk/news-campaigns

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Advice for staying well

Hoarding: what you can do

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Hoarding means acquiring or saving lots of things, regardless of their value.

If you hoard, you might:

• Have strong positive feelings whenever you get more items

• Feel upset or anxious at the thought of throwing or giving things away

• Find it hard to decide what to keep or get rid of.

You might hoard by itself or as part of another mental health problem. Hoarding can also be caused by some other types of conditions, for example dementia or brain injuries, which are diagnosed and treated differently to mental health problems.

You might find other people focus a

lot on the effects hoarding can have on your home or other physical spaces, and that they don't really understand how you feel.

What treatments could help?If you seek help for hoarding, your GP might refer you to a psychiatrist (or another mental health professional) for an assessment.

The main talking therapy used to treat hoarding is cognitive behavioural therapy (CBT). Together with your therapist, you might explore why it’s hard for you to get rid of things and learn skills to help you cope with difficult feelings.

You might be offered therapy in your home, which some people find helpful.

How can I help myself?Keeping a diary to record your moods and feelings could help you spot patterns in your hoarding behaviours and notice early signs of any issues.

You could also explore ways to relax that don’t involve acquiring or saving things – such as spending time in nature, watching a film or visiting a library or museum.

Joining a peer support group and connecting with other people who hoard can also be really helpful.

For more information on hoarding, visit mind.org.uk/hoarding

Advice to protect your rights

Hoarding: what the law saysIf you hoard, a number of different legal options could be used to intervene or offer support. Here’s what you need to know.

The Mental Health ActSection 135 of the Mental Health Act 2014 allows police to enter your home if they reasonably believe you have a mental health problem and are unable to look after yourself. Officers can then take you to a place of safety so a mental health assessment can take place.

Social care legislation If your hoarding leads your local council to believe either that you are,

or are at risk of, neglecting your own safety, then they may launch a safeguarding enquiry to see whether you need support or protection. If you do appear to need extra help, they may also assess your social care needs and have a duty to meet those needs if you are eligible for care.

Public health legislationCouncils have a range of powers under public health and environmental protection legislation. These can include serving an enforcement notice on you and - if the state of your home could be a hazard to health - even entering your home without permission to carry out work.

Court of Protection If you lack capacity to make decisions about your living arrangements, the Court of Protection could intervene. Through the court, an order could be granted to gain access to your home and carry out work. Your possessions could also be removed, if that is seen as being in your best interest.

Housing law for renters If you rent your home, hoarding may mean that you are in breach of your tenancy agreement. In that case, your landlord can apply to evict you. If that happens, a court may take your mental health into account in deciding whether to evict you.

Mind’s info team

Annie Crabtree Information Officer

* Texts are charged at your standard message rate.

Your questions answeredQ

A

How can I talk to my doctor about hoarding? I don’t want anyone to see photos of my home.

It’s common to feel unsure about asking for help with hoarding but a growing number of professionals are aware of the condition. They should help you take things at your own pace, rather than pressuring you to make changes faster than you want to.

Various online tools also exist to help you talk to your doctor, making it easier to start a conversation about how hoarding is affecting you.

One tool – Clutter Image Rating – helps you describe your hoarding without taking photos of your home. Instead, you look at pictures and choose which ones

most closely match your situation.

You might also find the Hoarding Ice Breaker form helpful. It’s another way to explain how hoarding is affecting you, and includes the Clutter Image Rating.

You can find links to these tools at mind.org.uk/hoarding – and a free Clutter Image Rating app is also available from some app stores.

Got an issue or question about mental health? To contact Mind’s Infoline, call 0300 123 3393, text 86463* or email [email protected]

Lines are open 9am-6pm Monday-Friday (except Bank Holidays)

Stephen Buckley Head of Information

Mind’s legal team

Stephen Heath Lawyer

Alice Livermore Lawyer

Your questions answeredQ

A

My sister has hoarded for some time and I am worried that the housing association is going to evict her from her flat. What’s the legal position?

If your sister’s hoarding means the condition of the property is deteriorating, or if she has breached any of the conditions of her tenancy, then the housing association could look to evict her.

However, social care law places obligations on local councils to co-operate with housing associations to protect people at risk of neglect – including people who hoard. This means your sister’s local council and housing association should have policies and procedures in place to help provide appropriate support for tenants who hoard, rather than

looking to evict them.

Your sister’s hoarding might amount to a disability under the Equality Act 2010.

If that is the case and your sister was taken to court, the judge would take her health into account when considering whether to order her to be evicted. If the situation does get to that stage, she should definitely seek specialist legal advice.

Want to discuss a legal issue? Contact Mind’s Legal Line on 0300 466 6463 or email [email protected]

Lines are open 9am-6pm Monday-Friday (except Bank Holidays)

mind.org.uk/hoarding

mind.org.uk/hoarding

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Phot

o: X

XX

On becoming aware of differences at primary school…I was suddenly in an environment where I could look around me and I couldn’t see anyone who I felt looked like me – not only in size, but also as one of the only girls of colour at my school. In my head that became a sense of inferiority. It wasn’t just thinking: ̒ I’m different’. It was: ‘I’m different and I’m worse’.

On the impact of feeling inferior…I had that feeling of being different so felt I had to make up for it in other ways. I think that contributed to some positive aspects of my life going forward, but also was probably the bedrock of many of my mental health issues, like ongoing anxiety and quite a lot of my eating disorder.

On anorexia…I was completely consumed by it. I was diagnosed at 14 and spent ten months in and out of a child psychiatric unit. If I had to describe the day-to-day feeling, it’s almost like being underwater, all the time. You know that life is happening on the surface and everyone else’s lives are moving forwards and they’re engaging in things and caring about things, but you’re trapped under the water where all that matters is body and food and numbers every second of every day. You just cannot bring yourself to get up to the surface and take a breath.

On spending time in a psychiatric unit…The eating disorder treatment that I was put into really, really just focused on: ‘Just make her eat; just make her put on weight’. There was not much attention on mental health or exploring what the illness was or why I was being affected by it. I remember one member of staff who was wonderful at treating us like whole human beings and reminding us of who we are underneath… but overall I believe it was probably underfunded and just a very dark, grey, quite hopeless feeling place.

On recovery…Whenever people message me for advice on how to help loved ones with an eating disorder, I say it is so, so important to help them hold on to who they are outside of the disorder. Maybe that’s who they once were, what they used to love, if they have any goals for the future – whatever helps a person believe they are more than the eating disorder. That was definitely a huge help for me: having family in particular around me to remind me of who I was underneath.

On discovering body positivity on Instagram…I felt fear, just pure fear. Seeing for the first time probably in my life that someone could be completely happy in a body that wasn’t thin struck me with this deep fear of: ‘Oh

my gosh, maybe I have been living my entire life wrong, because what I’m doing – hating myself and dieting constantly – that clearly isn’t working, that hasn’t made me happy. Maybe this person is right and maybe I have to start unlearning everything I have ever known about weight and worth and beauty and happiness.’

On ‘unlearning’…Once you see it, you cannot unsee it. You realise that diet culture and fat phobia and body shaming are everywhere and so deeply embedded in our lives. We have to let go of the blame we hold against ourselves and our bodies and recognise that this is bigger than us.

On the meaning of body positivity…I would define body positivity as a movement that believes all bodies are worthy of respect: so all shapes, all sizes, all genders, all skin colours, all ages, all abilities. Absolutely all bodies are deserving of respect and I think nobody should feel that they have to go through their lives believing they are worth less because of anything about their body.

On being a role model…In the beginning I really felt like it was my responsibility to answer every comment, every message; I wanted to try and help everyone. But I realised after the first couple of years that it wasn’t positive for my mental health to keep pouring all my emotional energy into trying to save all these individual people. Actually the best thing I could do was to share my experience publically, share resources and direct people to them and hope they find that information themselves. If someone wants to heal, they do have to take those steps themselves.

On campaigning against fat phobia…I think first and foremost we need to change the way that fatness is spoken about in the press. We still have so many sensationalist headlines that reduce larger people to illness and disease and moral failing… We need to be seeing larger people who are happy, who are fulfilled and who are just living their lives. Even things down to accessibility need to change too… It’s alienating to know that society is literally not built for you. These things need to be recognised and then people in positions of power who can change them need to make them a priority.

On the value of Mind…I presented an award at the Mind Media Awards in November and being surrounded by all these people who were just talking about mental health as if there has never been a stigma about it was incredibly powerful. I think there are so many people within Mind that genuinely believe there is a possibility for the future to be different, and that is really important.

Megan’s book Body Positive Power is available now

As a teenager, Megan Jayne Crabbe became so unwell with anorexia that her parents were told she might not survive. But, after years of hating her body, a social media image of a body positivity campaigner made her question her whole perspective. Today, Megan is a figurehead for the ‘bodyposi’ movement – encouraging over a million followers on Instagram to care for their mental wellbeing by loving themselves for who they are.

What's on your mind... Megan Jayne Crabbe

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The power of local Minds

Working together to tackle psychosisLocal Minds in west Wales were among the winners at the NHS Cymru Awards in September, with the judges full of praise for their groundbreaking work linking up with the public sector to help young people who experience psychosis. Mind Pembrokeshire CEO Tracey Price explains what’s involved.

“With the IPS model, you work very, very intensively with each individual, for an unlimited period of time,” she says. “Together, you identify what the young person wants you to support them with, and you go out with every tool in your toolbox and every idea you’ve got to make that happen.”

The project focuses on helping young people aged 14 to 25 who have had a psychotic episode and feel ready for employment or education. Mind Pembrokeshire has employed three specialist employment support workers from other local Minds in west Wales as part of the project. They help young people with everything from job centre meetings to welfare benefit advice to mediation with employers and finding training courses.

Part of what makes IPS stand out is the way it brings different organisations together. Through this approach, the NHS early intervention psychosis team provides healthcare and occupational therapy, the DWP offers benefit guidance and support, and Mind offers specialist education and employment support. It’s the kind of collaborative approach that can have a profound effect – particularly against a background of cuts to many mental health services.

“The outcomes have been amazing,” Tracey says. “We’ve had young people enter into further education, we’ve had others go through the UCAS process to get into university, we’ve had others who have entered and remained in employment. Often the young people we work with are furthest away from the employment

You and your local MindLocal Minds offer a huge variety of groups, mental health support and activities. They are always delighted to hear from Mind members, so whether you're interested in finding support, meeting like-minded people or volunteering, why not give them a call? Find your local Mind at mind.org.uk/local

market, but they have significant amounts to offer with the right support.”

Building on local knowledgePart of the service’s success is down to local Minds being “absolutely community based and community driven,” Tracey says. “Staff know every organisation within their patch: we already have lots and lots of links, which makes it easier to find the right opportunities for young people and build partnerships with different organisations and across different sectors.”

The project also helps young people overcome their fears. Psychosis often involves hallucinations and delusions, and many of the young people Tracey and her team work with are nervous about discussing their symptoms with the DWP or employers, for fear of losing benefits or facing stigma at work. “We work to cut out those anxieties from the outset,” Tracey says, “by helping people have those conversations and openly exploring what’s possible for each individual.”

Understandably, Tracey talks with great pride about the young people in this part of Wales who are benefitting from a joined-up approach, but is quick to point out that this is just one example of the life-changing work that local Minds do across England and Wales every day. “It’s great to be an award-winning organisation, but for me we’ve always been award-winning,” she smiles. “I could give you any number of impact stories because our teams work so hard to make people’s lives better.”

Together you identify what support

the young person wants, then you use

every tool in your toolbox to make it

happen.

“We were absolutely staggered and amazed and really, really so pleased,” Tracey Price laughs, when she’s asked how it felt to win the prestigious NHS Cymru Award for ‘Working seamlessly across the public and third sector’. The prize was awarded for the Individual Placement and Support (IPS) project. It’s a joint effort

between local Minds in West Wales, the Hywel Dda NHS health board and the Department of Work and Pensions (DWP). And, as Tracey explains, it was set up to give young people the best chance of recovering and going on to thrive after a first experience of psychosis.

Jake's experience of IPSSince accessing the service, it’s helped me improve my social skills and I have found it very useful. We decided that doing voluntary work for a period of time before looking for paid employment may be the best starting point for me. While ultimately my long-term goal is to find paid work, I’ve realised I still need to do some work on some basic skills first to help make that a reality. I know when the time is right and I am ready, my employment specialist worker will work with me to help me look for the right paid job that suits my abilities. It is reassuring to know that that kind of support is there for me.

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Your experiences of…

PhobiasWhen does a fear become a mental health problem? Mind member Katie explains how her terror of needles took over her life, and we explore the truth about phobias.When I told people about my phobia of needles, they would often say: ‘Oh, I don’t like needles either’. But not liking them and having a phobia are completely different.

It got to the point where if I saw or heard something about needles, I would panic or even pass out. It could be a poster, or someone just mentioning them. I once passed out at a table when someone started talking about needles during a meal. I just could not cope with the thought of them. It started with medical needles but over the years developed into any type of needle.

I know it’s irrational. The phobia didn’t extend to needles if I was using them, for example. I really wanted piercings, so I did them myself, after taking a lot of time to read about how to do them properly and safely. It was the thought of needles with other people around that terrified me.

I risked my health because the phobia got so bad. I travelled to India without having any vaccinations and I avoided going to the GP for years because I was terrified of seeing a needle. I couldn’t go to pharmacies or hospitals either. I stopped being able to go out in public because I was thinking about it all the time.

It was only when I eventually started getting suitable help

for my mental health problems – including anxiety, depression and post-traumatic stress disorder – that my life started to improve. I told a therapist how bad my phobia actually was. Together, we worked on a plan involving desensitisation techniques, gradual exposure and EMDR [eye movement desensitisation and reprocessing].

I’m so proud to say I recently had my first blood test since I was a child. I won’t sugar coat it: it was still difficult and something I’d rather avoid, and I needed all of my coping techniques and calming medication to get through it. I was taught that powerful smells or tastes can stop your brain thinking about scary things, so I have very strong ginger sweets to suck on and I wear a necklace with scented oils in. Another one is remembering to breathe, because when you panic you stop breathing.

It’s lots of hard work, but I’ve been telling everyone about the blood test because I’m so proud. I’ve been to a dentist for the first time since I was a child too. These are huge achievements for me.

If anyone is reading this in a similar situation to mine, I just want to say you can learn to manage this. You have to be prepared to work hard, but it’s definitely worth it. Recovery is possible.

What is a phobia?It’s an extreme form of anxiety triggered by a particular situation or object, even when there is no danger. A fear becomes a phobia when:

• It is out of proportion to the danger

• It lasts more than six months

• It has a significant impact on your day-to-day life.

What types of phobia are there?Phobias can develop around any situation or object. They can roughly be categorised into two groups:

Specific phobias, with common ones including animals, the natural environment (such as heights or water), situations (such as flying or going to the dentist), body-based phobias (such as injections or blood) and sexual phobias.

Complex phobias, which tend to have a more disruptive or disabling impact. Two of the most common are social phobia and agoraphobia. If you have social phobia, you will feel a sense of intense fear in social situations, and will often try to avoid them. Agoraphobia involves feeling anxious about being in places or situations that it would be difficult or embarrassing to get out of.

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How can I help myself cope?There are various things you can try that might help, including:

• Talking to someone you trust

• Relaxation techniques

• Learning to manage panic attacks

• Joining a support group

• Using self-help resources

• Talking to your doctor about courses to help with specific phobias.

For more detailed information about phobias, head to mind.org.uk/phobias. We’d like to thank Katie for sharing her experience.

What are the treatments?Your GP might recommend talking treatments, such as cognitive behavioural therapy, exposure therapy or hypnotherapy. Three types of medication could also be helpful: antidepressants, tranquilisers and beta-blockers.

I risked my health because the phobia got so bad - travelling to India

without vaccinations and avoiding

doctors.

22 23


Treatment in focus

Antipsychotic medicationMembers Andrew, Eleanor, Faye and Paul discuss the benefits and pitfalls of antipsychotics.

23

In June 2018 I had a lot going on – I’d been promoted at work, I’d bought my first house – and my brain just couldn’t cope. I had a psychotic episode. I was being commanded by these voices. I tried to strangle my mum. I threw glass bowls at my boyfriend. I was too unsafe to be on my own at home.

I went to hospital and was given quetiapine, an antipsychotic. I really didn’t like it. It did help with the voices but it made me more depressed and I put on weight. Because of the depression I would work myself up into a state and the voices would come back.

After about three or four weeks in hospital, though, my medication was changed to a different antipsychotic – aripiprizole – and it helped a lot. It still increased my weight but the voices cleared straightaway. I take it with an antidepressant and they work really well together.

The reality is that the opinion of the word ‘psychotic’ needs to change. We’ve seen how much people’s reaction to the phrase ‘mental health’ has changed. Now the same needs to happen for psychotic.

What are antipsychotics? They are psychiatric drugs licensed to treat mental health problems with symptoms that include psychotic experiences. These include schizophrenia, schizoaffective disorder, some forms of bipolar disorder and severe depression.

How do they work? Antipsychotics don’t cure psychosis but can reduce and control symptoms including delusions, hallucinations, anxiety, serious agitation, incoherent speech, muddled thinking, confusion, violent or disruptive behaviour and mania.

Are there side effects? Medication helps some people but isn't right for others. Every antipsychotic has the potential to cause unwanted side effects. Not everyone will experience them, but many people do. You can find a full list of the most serious side effects, along with in-depth information about the different types of antipsychotics and how to take them safely at mind.org.uk/antipsychotics

We’d like to thank Eleanor, Paul, Faye and Andrew for sharing their experiences.

FayeI was given depot* antipsychotics in 1998 and had dreadful side effects. I was really sedated, my speech was slurred, my breath was smelly and I was so tired and lethargic. I was salivating and had this raging hunger so I gained weight. It was a miserable existence. I experienced a sort of deadness inside – a lack of spiritual life, a lack of feeling for others.

I now do Sahaja Yoga meditation, which is a lifeline. It wakes me inside.

The drugs did stop my active symptoms – they stopped me feeling that the world was coming to an end – but they just stopped everything dead. Two long years after I stopped taking them, I finally felt that life and feelings were returning.

I now take sulpiride antipsychotic tablets and find I can function a lot better. I also do Sahaja Yoga meditation, which is a lifeline. My GPs and mental health team know about this. It helps keep me stable. It wakes me inside.

*Depot injections are used to give slow-release, slow acting medication.

Andrew

I had a really difficult time a year ago and started hearing a male voice inside my head. It increased to the point that whenever I was having a conversation, I would hear the voice telling me: ‘They’re looking at you funny. Everybody hates you. They’re trying to kill you.’ It got to the point where all day, every day I was hearing the voice – even during my sleep. I was dreaming about it.

It was without doubt the darkest place I have ever been in. I began isolating myself from people. I didn’t trust anybody. I attempted suicide four times because it really felt that that was my only way out.

When my doctor first mentioned antipsychotics I was in turmoil, because psychotic is a word that has such negative associations connected to it. But the medication quietened the voice at first, and now it’s gone completely. The relief I felt was incredible. It was like taking your first breath after you’ve been underwater for a very long time. I wouldn’t have survived without the antipsychotic medication.

EleanorI’ve taken antipsychotic medication for in excess of 15 years for schizoaffective disorder. I wouldn’t consider this a cure in itself but it’s been vital in helping me sustain a better quality of life.

When you find the right one it helps keep you stable; the problem is that it can be a long, drawn out process to find the right one. It's a journey of trial and error, really, because doctors don't really know which one will work. Common side effects include weight gain and getting a very dry mouth.

But when I’ve stopped taking them, either because I’ve forgotten or chosen not to, I usually end up getting sectioned. I lose insight into my behaviour and have delusions that I’m being persecuted.

My last section was in November 2018. Since then I’ve been having the antipsychotics by injection, and it’s been so far, so good – I’ve had no major relapses since then.

Paul

I would rather live life on

antipsychotics than as a slave

to voices.

If I stop taking them, I usually end

up getting sectioned.

We need to change opinion

of the word ‘psychotic’.

I experienced a sort of

deadness.

mind.org.uk/antipsychotics

Take a bow, member artists!We love sharing your talents with the world, so a huge thank you to Clare, Gembobs and Hina for sending these wonderful works of art our way. For a chance to see your work featured in a future issue, send it to [email protected]

issue 38 | winter 2020 membership news · final assignment last year, she felt an overwhelming...

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