TEDx Oldham: Jo Taylor from After Breast Cancer Diagnosis

Having “survived” primary breast cancer, Jo went on to be diagnosed with metastatic ‘stage 4’ cancer, which was detected in a number of sites on her body. She was never told the survival statistics but knew she had a median life expectancy of another two to three years.

Jo Taylor set up After Breast Cancer Diagnosis (ABCD)

But Jo had other plans, she wanted to live well for the sake of both her family and herself. She also knew that she wanted to support other women.

She knew that exercise made her feel better and she wanted to raise money for the Christie cancer hospital and loved leading 23 people in a 62 mile charity cycle ride between Manchester and Blackpool.

“Exercise really is a pill.”

Jo Taylor, After Breast Cancer Diagnosis

Jo wanted to help other women living with breast cancer and the harsh treatments associated with it. This led her to set up After Breast Cancer Diagnosis or ABCD as it’s known.

In between rounds of treatment, she started running retreats which challenged the women to be active and motivated through cycling, Nordic walking, running and yoga. In addition and the friendships developed by the women on the retreat flourished with small support groups.

Through her own experiences and research Jo has begun to gather evidence for the role of exercise in preventing secondary cancer, ‘prehab’ exercise in preparation for surgery and the mental health benefits of exercise for those being treated for and living with cancer.

Last year, having won Big Lottery funding, she ran retreats for 38 women in Saddleworth with another five retreats planned for 2019.

Jo has created a movement, just look at the hashtag #busylivingwithmets on Twitter. She tells the people that she helps “you will be lapping everyone on the couch”, it’s about making little changes that can have immediate and future benefits.

She urges healthcare professionals to encourage exercise and good nutrition for recovery from cancer and its treatments. “Exercise really is a pill” she says, both for mental and physical wellbeing.

Read my main TEDxOldham 2019 blog here.

TEDx Oldham 2019: The town that dares to be wise

I’ve been to several TEDx talks in the last few years and was tipped off that Oldham had its own offering a few weeks ago.

Reading through the list of speakers a few life stories spoke to me and I bagged myself a ticket (for what turned out to be a sell-out event).

Andy Hall (left) with the speakers for TEDx Oldham 2019

I can’t do all the speakers justice here so I’m going to pull out a few ideas which grabbed my interest from the content-packed day.

TEDx has superfans…

Diane Atkinson doing her bit for Ruth Major’s ‘1 piece of rubbish’ movement. Picture courtesy of @DianeAtkinson

As I arrived at TEDx Oldham at Oldham Central Library I was delighted to bump into Diane Atkinson, who I know through Manchester Girl Geeks, and her friend Wendy who are both active in the Women’s Institute.

They told me they went to every TEDx they could get to and were particularly impressed with TEDx Bollington in June, where our host for the day Andy Hall had shared his mental health and exercise story.

Speaker notes

Andy Hall

Andy is bursting with passion for Oldham, introducing the event with the words: “We love this town”.

Joking about his own recent TEDx talk he says that he found himself waking up talking to himself as he rehearsed his talk. He introduced the following two speakers before the main line-up.

“Let’s make Oldham the Shoreditch of the North.”

Andy Hall

Ruth Major

Ruth is on a mission to clean up rubbish, with the simple message that picking up #1pieceofrubbish is something that everyone can do. She challenged us to do just that over the lunch break (see the picture of Diane doing her bit above).

Samah Khalil

Samah is Oldham’s current @Youth_Mayor and spoke with passion both about the town she lives in and the potential of everybody to make a difference.

Jo Taylor

Having “survived” primary breast cancer, Jo went on to be diagnosed with metastatic ‘stage 4’ cancer, which was detected in a number of sites on her body. She was never told the survival statistics but knew she had a median life expectancy of another two to three years.

But Jo had other plans, she wanted to live well for the sake of both her family and herself. She also knew that she wanted to support other women.

She knew that exercise made her feel better and she wanted to raise money for the Christie cancer hospital and loved leading 23 people in a charity cycle ride between Manchester and Blackpool.

“Exercise really is a pill.”

Jo Taylor, After Breast Cancer Diagnosis

Jo wanted to help other women living with breast cancer and the harsh treatments associated with it. This led her to set up After Breast Cancer Diagnosis or ABCD as it’s known.

Read more on Jo Taylor at TEDx Oldham 2019.

Sean Brown

A series of unusual events led Sean to setting up successful tech businesses in the UK in his twenties. He was always one to push himself out of his comfort zone and racked up a series of glamorous jobs in Australia and the Far East which included teaching the owners of yachts to dive.

A chance meeting with actress Kate Hudson made him realise that he could go for what he wanted in life and hoped to become a videographer. On returning to the UK for training he met his girlfriend Hannah and his priorities changed again.

Despite having set up his tech company Mercarto and forming a business partnership with Lawrence Smith CEO of UKFast, Sean says he’s always felt like an imposter and puts his success down to his daring attitude.

Heather Price

Heather, like Samah Khalil, sits on Oldham’s Youth Council. She can see that our climate and environment are in crisis and is passionate and vocal about what needs to be done.

Heather appeals to politicians to stop seeing ‘success’ in terms of money and look how we can preserve our natural resources.

“We can be the solution.”

Heather Price

Raam Shanker

Raam is an engineer with a background in mathematics. He thought maths was difficult and was taken by surprise by the complexity of the English language and culture when he left his home in Bangalore, India to start a masters degree in Sheffield.

He was surprised to face the phenomenon of queuing and illogical pronunciation of words and shared his MUM model for living, ‘Manage, Understand, Master’.

You can hear more from Raam, who is the director of engineering company Equitus on Twitter.

Hayley Lever

While our bodies and minds benefit from movement and activity, many modern jobs and lifestyles cause us to lead increasingly sedentary lives.

Brisk walking for thirty minutes a day is enough to helps us feel better and Hayley Lever is on a mission to get everyone moving more. This is an inclusive campaign which nudges people towards manageable movement.

“Movement needs to be designed back into life.”

Hayley Lever, lead GM Moving

Hayley has written about leading the ‘GM Moving’ campaign and her TEDx presentation and the #activesoles message.

Have a read of her personal blog where Hayley writes with passion about her role and reveals why Manchester’s mayor Andy Burnham announced that council staff they could wear trainers to work.

Rubbi Bhogal-Wood

While Rubbi relied on her specialist social media skills to run her businesses, she started to experience negative emotional effects of using social platforms.

Despite her businesses thriving, Rubbi felt anxious and overwhelmed when she felt there were not enough ‘likes’ being added to her pages.

It was only at this point that she began to educate herself on the mechanisms behind social media, the algorithms that were set up to make sure that we always came back for more by delivering a dopamine ‘hit’ each time our posts received a ‘like’ or comment.

Rubbi has a warning and a bit of advice:

1. Set the rules

2. Get as much human interaction as you can

Rubbi Bhogal-Wood

Henry C Blanchard

Having set up the Uganda Marathon to bring people and money into the country Henry realised that he was not a ‘superhero’.

Despite the millions of pounds he’d raised making a difference to the African nation, he realised he was possibly not the best person to run the project and handed it over to a Uganda colleague, Joshua.

Henry is honest about what he has learned from the experience and the charity he set up now has an all-Ugandan board of trustees. He gives others looking to fundraise or help others the following advice:

1. Ask yourself why you are trying to help these people

2. Ask others what they want

3. Work together

Henry C. Blanchard

Lisa Marie Gee

Photographer and artist Lisa Marie Gee says her life changed when she had a breakdown 16 years ago, getting involved with the Time To Change who she is now an ambassador for.

In her recovery she picked up a camera and starting taking portraits which conveyed messages about getting better from mental health difficulties. What started with contributions from friends grew through word of mouth and the ‘Open Shutter’s project attracted some high profile subjects.

The first exhibition took place at Gallery Oldham in September 2018 and you can learn more about Lisa’s Open Shutters project on her website.

Doddz

Having being branded ‘dyslexic’ and then ‘very dyslexic’ in his school career Doddz has succeeded as a commercial street artist in the UK, going on to set up his own fashion brands.

He describes himself as a ‘wolf in sheep’s clothing’ and is clearly happy with the place his career has reached. He has some wisdom to impart:

1. Attitude matters – challenge the word ‘impossible’.

2. Self-belief – follow your passion.

3. Surround yourself with people better than you AND
try to be the hardest working person you know.

4. Don’t wait – what’s your goal with your limited time on earth?

Doddz

Marzia Babakarkhail

A judge and lawyer, Marzia fled from Afghanistan after being attacked for her political beliefs. She says, as an asylum seeker, she found her home in Oldham – a place she is clearly fond of.

Her career before arriving in the UK had been varied and included setting up a school in Pakistan for Afghan refugees. When she arrived here she had no English and took up classes as Oldham College.

She describes English as her ‘oxygen’ and has always been keen to promote educational opportunities for girls. She is a trustee for the charity City of Sanctuary which works to welcome refugees to the UK>

“Always stand against injustice – if not you, then who will?”

Marzia Babakarkhail

What I came away with…

Through all the speakers, regardless or age or background there were two common threads that came through:

  1. It’s never too late to learn or try something new.
  2. One small action or one conversation can make a change.

I quite enjoyed TEDx Oldham, there really is something to say for the local. Perhaps next year I’ll be speaking….

 

Beyond ‘box ticking’: MIF introduces the Lived Experience Movement

Picture courtesy of Manchester International Festival via Twitter

When you are different society does not cater to your needs, you do not have power and more than likely you don’t have access to the freedoms that those with power take for granted.

But things are changing. Diversity initiatives have invited people from a wider range of backgrounds into the institutions that make important decisions for all of us, about things like our health, wealth and the law.

Of course this is a good thing, but it is only a very tentative step in the right direction.

For real and meaningful changes to happen which genuinely make society a fairer place for all our citizens it is not good enough merely to employ people with lived experience of disadvantage.

The value of lived experience among the leadership of the organisations that shape our society needs to be recognised, championed and believed in.

As part of the Interdependence line-up at this year’s Manchester International Festival, a panel entitled ‘How do we reclaim our humanity?’, six extraordinary people described how their life experiences had led them to head up their own organisations.

Human rights lawyer and Clore Social Fellow Baljeet Sandhu headed up the cast of ‘New Constellations’ – the bright stars who are leading a new era creating new services and opportunities for the unheard.

Baljeet founded Migrant and Refugee Children’s Legal Unit based in London and was its director from 2012 until 2019. She is one of the UK’s top experts on children’s rights in relation to asylum and immigration law. 

Paula Harriott is a mum, grandmother and part of the senior management team at the Prison Reform Trust, she is open about having faced a long custodial sentence herself and believes that more needs to be done to meet the needs of the one in ten people in the UK who have a criminal record.

Sunny Dhadley talked about his own experience of addiction to heroin and cocaine. He explains how he developed a peer-led treatment model after he found post-detox support failed to adequately support those in recovery. (More on this in his excellent TEDxWolverhampton talk).

Farzana Khan is a youth worker from Tower Hamlets, one of London’s poorest and most culturally diverse boroughs. She started working with young people when she was 14 and created inclusive arts products.

She found that institutions didn’t meet her needs or those of other people who were the brown or black, or those with LGBTQI identities, disabled people and those from a range of disadvantaged backgrounds.

Farzana set up Healing Justice London to address the need to ensure that health and wellbeing can be a focus for every person, and that the distress of loss and trauma are shared, acknowledged with individuals and communities given the chance to repair themselves.

Jane Cordell has an incredible career portfolio as a musician, educationalist and diplomat among other roles. In 2010 she was denied a position on the basis of the cost of reasonable adjustments in relation to her hearing loss.

She believes the world is missing out on the talents, skills and experiences of many people because of kind of treatment that she has faced in relation to her disability. (There’s lots more about Jane on her website gettingequal.com).

Peter Atherton grew up in the care system and became involved in crime during adolescence resulting in a custodial sentence.

With little to aspire to, his impulsive behaviour led to drug addiction and poor mental health and his chances of finding paid work faded.

In his thirties, he realised that he could use his experiences to help others. He volunteered before working in the public sector. However, he started to feel that his presence there was token and was frustrated.

Wanting to do more than ‘tick a box’, Peter set up Community Led Initiatives with another former addict. The peer-led organisation helps people to move on from difficult and traumatic experiences such as addiction, time in prison or homelessness.

It’s time for Lived Experience to make a difference

While ‘service users’, ‘clients’, ‘claimants’ and other outsiders are starting to get their voices heard in the development of state provision, having a place at the table is not enough.

So let’s not tick boxes, let’s turn the tables themselves.

There’s enough room for us all to bring our lived experience, share it and help each other to heal from the trauma, loss and alienation we have faced and build services that meaningfully involve those they most impact.

Unfiltered Talks: mental health out in the open

Meaningful connections in a digital age

Unfiltered Talks is a series of events founded by Amazing Minds, WeAreASSIF and 0161Marketing ‘in an attempt to Empower, Inspire and Improve direct and indirect sufferers of mental health issues‘.

The Unfiltered Talks banner declares ‘Empower, Inspire, Improve’, and the line up of panellists delivers on this message, but gave so much more.

This event has a distinctive flavour – an openness and honesty that many speaking line ups don’t often allow space for.

Beth Wilshaw from mental health startup WeAreASSIF artfully mixed direct questions from audience members with those submitted through online platform slido.com (this also allows anonymous questions).

The speakers

Each guest took a few minutes to tell their story, each speaking honestly about their lived experiences of mental distress, as well relating this to the suffering of friends and family and wider society.

Emilia Kolbjørnsen – Manchester Girl

AKA @itsAmeliaKoko, Emilia who is a marketing specialist, spoke about her difficult and disjointed childhood growing up in different countries and struggling to find her place in the world.

From her teenage years depression and anxiety followed her around as she moved from one country to another.

Working hard and playing hard took their toll and Emilia took stock of her support network with a ‘friends cleanse’. She says:

Diet is so much more than what you’re eating. It’s what you’re seeing and experiencing, including the people around you.

It was at this point she connected with women’s friendship network Manchester Girl where she now volunteers as community manager.

While Emilia urges others to watch their ‘mental hygiene’ with social media, she’s also keen to point out the abundance of opportunities our online connections can bring in terms of friendship and community.

You can hear Emilia speaking to Bilal Jogi in the latest edition of the Amazing Minds podcast.

Bilal Jogi – Amazing Minds

Bilal (@iambilaljogi) talked with welcome openness about his history of panic attacks and anxiety. He’s researched a wide range of drug-free approaches to managing his condition, including vitamin and mineral supplements which he feels have helped him a lot.

It’s taken time for Bilal to find the things that help his anxiety and he’s put much time and effort into understanding the thought processes that underpin his panic attacks.

He warns others not to use online advice to self-diagnose by searching for answers online:

People want quick answers – it’s a huge problem because people google symptoms, but we’re vulnerable. Don’t do it. Be careful what you read and listen to.

Omar Latif

Omar is about to launch WeAreASSIF a new platform which empowers people to manage their own mental wellbeing by engaging with artificial intelligence (AI) tools and innovative approaches to content delivery.

I had heard Omar speak before about the loss of a very close friend to suicide. This time expanded on the impact of this experience, readily expressing the negative effect these events had had on his mental health.

WeAreASSIF is at a very exciting point as the app prepares for launch later this year. Although social media is a vital part of product promotion, Omar worries about the effect it’s having on our minds:

It’s scary how the need for [social media] validation changes us. It can be a ‘bad garden path’ to poor mental health. These apps are keeping people hooked – delete and unfollow!

A very healthy evening

Unfiltered Talks had a very different feel to many evening speaking events. By keeping speaker introductions brief there was lots of time and space for questions and chat.

The size and intimacy of the venue were just right and comments from the audience were welcomed and responded to, the atmosphere was more friendly debate than straight content delivery from the speakers.

I certainly came away feeling uplifted and I’m very much looking forward to the next Unfiltered Talks event.

Photographs courtesy of Unfiltered Talks / Amazing Minds.

Mental Health Awareness Week 2019

I’ve not written a proper blog on here for a while but I’ve been involved with some pretty cool stuff during Mental Health Awareness Week, so I’m jotting down a few notes here.

Monday: Tech Manchester Wellness Festival

This was my first visit to UK Fast Campus for this event focusing on managing the stresses of leadership in the tech industry.

As well as talks on everything from resilience to personality profiling there were yoga and meditation sessions on offer.

The great selection of healthy snacks and drinks was very welcome, especially as many events neglect this aspect of attendee wellbeing.

Thank you Tech Manchester.

Wednesday: WP&P Podcast Recording

I’ve recently become part of an online community called WP&UP. It’s a charity which supports people who use WordPress for business, many of these people work independently without a broader professional support network.

As part of my Care Labels For Humans project research I’ve been looking at the features of a range of mental health and well-being apps and I was invited onto the WP&UP podcast Press Forward to talk about my findings.

I’ll post more when the podcast goes live.

Thursday: Access All Areas at the BBC

This event is the BBC’s contribution to Global Accessibility Awareness Day. When we think of accessibility, we tend to focus on differences in mobility and sensory experience.

Accessibility also has everything to do with mental health and meeting the needs of people who think, feel or communicate differently.

It was really positive day and I really enjoyed hearing how experts by experience are increasingly visible in the accessibility world. You can read, hear or watch event highlights on the BBC website.

Friday: Mental Health & Co-production

To round this busy week off, I went to a one day event at The Curve in Prestwich. This is the home of Greater Manchester Mental Health NHS Trust including a number of research teams.

There has been a genuine drive by the trust to put patients at the heart of research and service design by including ‘service users’ in these processes in a way that allows their knowledge and lived experience to be used to improve services. This is part of what’s called ‘co-production’.

It was interesting to hear from a number of researchers and their collaborators. I was particularly touched by the work done Dr Sophie Walker and a number of service users, represented by one of the group, Anton.

Patients were involved at every stage of the research which focused on early intervention for young people experiencing psychosis. Working creatively, and using visual arts, it was possible to authentically express the wishes of the participants.

I also demo-ed the virtual reality (VR) gameChange prototype which helps people with psychosis to reduce their anxiety about interactions outside the home by providing a scenarios such as getting on a bus or visiting a cafe.

You can read more about this research on the Psychosis Research Unit website.

Move over Care Labels…

I have neglected this blog.

But it’s OK. We’ve had a chat and we both agree that maybe having some time out was best for both of us. The blog has been most forgiving.

There are rules though.

  1. This blog will now be the home of reviews and comments about mood, mental health and wellbeing apps and related online and offline services.
  2. Care Labels For Humans now has to exist on its own website and mostly not be mentioned on here.
  3. Rules 1 and 2 can be broken.

With a renewed focus on the future of this blog I have selected just a few of my favourite entries to give a taste of what once was.

My hope is that by pruning back the old I will be leaving space for new shoots to grow.

Onwards!