Positive Action for Change in Mental Health Services - Part 1

In November last year I attended this one day conference organised by PCCS Books in Nottingham. Two of the keynote speakers – Lucy Johnstone and Sami Timimi – had previously travelled to Powys to speak at a conference organised by our team in March 2014 - Finding Meaning in Psychosis: Early Intervention Services. This conference had highlighted the debate that challenges the validity of ‘mental illness’ diagnosis and raised questions about whether the idea of ‘mental illness’ is useful in driving innovation. However, due to leave I had been unable to attend. So, I was really keen to make the trip across country now to find out more about implementing innovative approaches to mental health distress. And the conference promised not just two but several inspirational speakers.

PCCS Books is an independent mental health publisher dedicated to the demedicalisation of distress, and person-centred, recovery-focused mental health services. The name developed out of a training organisation called ‘Person-Centred Couselling Services’, and at the conference (I think they organise one every couple of years) Director Heather Allan welcomed everyone and set the scene for the day:

“The case for demedicalising mental health services is well rehearsed. The research has been done, the conferences have been held and the intellectual argument all but won. Yet on a day-to-day basis, services continue to operate within the medicalised status quo. One of the aims of this conference will be to look at how we can implement realistic, practical changes in our mental health practice, education and lives, in order to continue the progression from rhetoric to reality.”

Due to limited space I can only touch briefly on the speakers’ presentations with a focus on their practical suggestions for bringing about change in working practice. (Full presentations are available here however).

Lucy Johnstone – Challenging, compromising or colluding? Some thoughts on trying to bring about change in mental health systems

Lucy made regular reference to her own personal situation working as a Consultant Clinical Psychologist at the Royal Glamorgan Hospital for Cwm Taf University Health Board in South Wales. This is the most socially deprived area in the whole of Wales, where 13% of the population are in contact with mental health services. It was a very medicalised service when Lucy arrived.

Lucy has since introduced an approach called “team formulation”. Regular meetings take place involving services in contact with an individual experiencing distress, within Community Mental Health teams, Assertive Outreach teams, rehab services and inpatient wards, to develop an in-depth understanding of that person’s particular difficulties. Staff will then work together to tailor any support to the needs of the individual rather than applying a one-size-fits-all approach. Using a case study of a 17 year old girl hearing hostile voices, Lucy contrasted the medical approach, which resulted in a diagnosis of psychosis/schizophrenia, to the way team formulation drew out the young woman’s story of abuse and bullying over a period of years. The latter approach acknowledges that responses such as hearing voices are survival strategies – “a normal reaction to abnormal circumstances.” 

In Cwm Taf team formulation has spread organically and not aroused much resistance. Lucy explained that her colleagues may not always agree with her approach but they take her stance on board, and some people are shifting away from using diagnostic approaches. The team formulation approach had led to “a change in thinking” and become “part of the culture as a word and a concept.”

“Instead of giving a diagnosis, we need to listen to people’s stories.”

Peter Beresford – From mental health to mad studies: making involvement real

Peter Beresford was introduced as the first “out” mental health service user to become a professor (Professor of Social Policy at Brunel University in London in fact). He spoke knowledgeably about the political background to current mental health service provision, noting politics’ powerful alliance with traditional psychiatry at the expense of those living with mental distress. He believes that “lived experience” is devalued by government, and rather than trying to influence politicians we would be better advised to take the initiative ourselves. Peter’s recommendations included:

• Resisting forced employment and impoverishment.
• Holding on to good participative practice.
• Listening to service users.
• Encouraging service user input in professional training, which has a real impact on service culture.
• Focusing on changing the future for mental health and service users by innovating, by developing our ideas for change and our practice.

Peter also spoke about the value of Mad Studies, and referenced the recent conference Making Sense of Mad Studies which my colleague Anne attended in early October.

“We have to be courageous and rigorous and stop hoping that powerful big voluntary organisations will speak for us.”

Look out for Part 2 of this conference report next week, when I feature the talks of keynote speakers Sami Timimi and Pete Sanders. You can also find out more about the Soteria Network and the British Association for Person-Centred Approach, along with other organisations who attended. Thanks for reading, and let us know your thoughts on these ideas and approaches in the comments box below.

Making Sense of Mad Studies

by Anne Woods 

Participation Officer, PAVO mental health team

Illustration by Grietje Keller

I recently attended a two day conference at Durham University entitled Making Sense of Mad Studies organised by the North East Mad Studies Forum. Before attending, I wasn’t too sure about what to expect. Mad Studies wasn’t something that I had come across before and I felt slightly uneasy about using the word mad in this context, a theme that came up in the conference and on Twitter. 

The term Mad Studies has been credited to Richard Ingram, one of the speakers, who was inspired by the creation of Deaf Studies as an academic discipline distinct from Disability Studies and wondered whether the same could happen for madness. In his presentation he said that finding method in the madness was not as important as preserving the madness in the method! In other words, Mad Studies is a way of looking at the world that uses and benefits from a different perspective to life and need not only apply to academic research on mental health. The consensus from the conference seemed to be that Mad Studies was something done by people who identify themselves as mad and not something done to or about them.

Richard Ingram

A fuller definition is provided in the book, "Mad Matters" (2013) edited by Brenda LeFrancois (another conference speaker), Menzies and Reaume.

“An umbrella term that is used to embrace the body of knowledge that has emerged from psychiatric survivors, Mad-identified people, antipsychiatry academics and activists, critical psychiatrists, and radical therapists. This body of knowledge is wide-ranging and includes scholarship that is critical of the mental health system as well as radical and Mad activist scholarship. This field of study is informed by and generated by the perspectives of psychiatric survivors and Mad-identified researchers and academics.” 

Brenda LeFrancois

The conference included a wide range of speakers from different backgrounds: academics, some of whom identify as ‘mad’, early career researchers, activists, artists, people with lived experience of various types, sometimes presenters falling into several categories. Presenters shared some intimate and honest accounts of their own life experiences within the psychiatric system and how that had informed their work.

The agenda was jam-packed but some highlights for me included hearing about Mad Studies reading groups in Amsterdam from Grietje Keller. The groups give a space for reading and discussing critical texts that challenge the dominant medical psychiatric model and are mostly attended by people who have been users of mental health services. The groups are popular and give attendees a different perspective on their experiences.

There was discussion around ‘doing’ (teaching/ learning about) Mad Studies with a presentation from participants and tutors of a course at Queen Margaret University in Edinburgh for people with lived experience of mental ill health, and tutors of a course for approved mental health professionals (AMHPs) describing how important it is for professionals to be trained by people with experience of being on the receiving end. Dr Dina Poursanidou talked about the challenges that this throws up, including managing the emotional toll of using traumatic personal experiences as an education tool, something of particular relevance to PAVO’s mental health team in the participation work that we do. 

Brigit McWade from Lancaster University on Recovery

This theme was also picked up later by an action group called ‘Recovery in the Bin’. They have adopted 18 key principles, one of which is, “we refuse to tell our ‘stories’, in order to be validated … We believe being made to feel like you have to tell your ‘story’ to justify your experience is a form of disempowerment, under the guise of empowerment.” This is an issue that I am well aware of from personal experience. As a team, I think we recognise this and carefully balance our desire to use powerful personal stories to facilitate change against the emotional toll on the individual and their right to control how much and when they disclose.

The Recovery in the Bin presentation gave food for thought on the concept of recovery and the group’s contention that it has been appropriated by mainstream mental health services and is less focussed on what’s best for each individual and is more concerned with what’s best for a capitalist society, ie: getting people into employment and off benefits as quickly as possible. The group talk about the validity of remaining ‘unrecovered’ by this measure, finding ways to live with distress that does not necessarily neatly fit into a recovery star model, also recognising that some life experiences have to be tolerated rather than recovered from.

"You told me I'm my own worst enemy. So I got a restraining order against myself!"

The conference had a breadth of views and opinions and there were some challenging discussions, about racism in psychiatry and academia for example, as well as humorous moments such as why art made by service users can actually be good art. It introduced me to several views and topics that I hadn’t come into contact with before and had a good mix of people sharing their personal experience and academic theory. It will be interesting to see how the discipline develops and whether, in future, universities will have departments of Mad Studies and full-time degree courses or whether it becomes a movement developed by grass roots activists – or both!

The conference is on Storify on Twitter.

Mad Studies is on Twitter.

You can find more Mad Studies resources on a website run by Brigit McWade.

Comedy and Wellbeing - Havin’ A Laugh Project

by guest author, Owen Griffkin

Gein's Family Gift Shop

There’s an old saying which goes -  "Laughter is the best medicine." There’s also a joke, which is nearly as old, which retorts, "Unless you are diabetic, and then it’s insulin".

I was a stand-up comedian for a good while back in the last millennium, and now I produce a host of comedy nights in and around the Mid Wales area and I have to say that I wholeheartedly agree with this adage, having seen first hand the benefits of a ‘right good b%***y laugh’.

Anyone with any experience of mental health issues knows that laughter is a wonderful way to feel better as it decreases our stress hormones, produces endorphins and increases memory, alertness and learning.

It’s for this reason that I have been working with the Wyeside Arts Centre, the Arts Council of Wales, and the Garfield Weston Foundation on a pilot project right here in Powys to help build confidence, improve mental wellbeing and break down some of the stigma attached to mental health issues.

I had the idea after holding workshops for the recent DIY Futures project and again with Powys Mental Health Information Service. The workshops comprised of simple and quick word play and story-building exercises, which had the participants finding new ways to share experiences in a safe environment. These were a lot of fun and there was huge interest in a longer-term project.

Participants on Owen's Laughter Workshop
Individuals' Forum Day, Caersws, April 2015

Finally after consultation and planning the idea has finally come to fruition (hooray!) in the form of the ‘Havin’ A Laugh’ project and we will be running some taster workshops this October. This will lead on to the main part of the project in early 2016 which will consist of 4/5 more in-depth sessions.

The project will be led by James Meehan and Kiri Pritchard McLean, two of the team behind ‘Gein’s Family Giftshop’ - a deliciously dark sketch show group who have just had a mini-series produced on BBC Radio Wales, and appeared in an episode of the ‘Inside No.9' programme on BBC 2. They have been nominated for most of the major comedy awards over the last two years and we couldn’t ask for anyone better to be heading up this project.

The sessions will be suitable for anyone from any background, of any age and physical ability.

There won’t be any pressure to perform and the focus will be on looking at your stories in a new way, confidence building, and, most importantly, having a laugh and enjoying ourselves.

There will be an OPEN TASTER at Wyeside Arts Centre on Wednesday 14th October from 1:00 - 4:30pm which is open to all and is a great way to see what you can gain from the project.

For more information or to book a place please email owengriffkin@gmail.com

UPDATE!!

The Open Taster at Wyeside Arts Centre is no longer going ahead. However, there are three other Havin' A Laugh workshops taking place which are open to all:

Tuesday 13 October - 1 - 4pm & 5.30 - 8.30pm

The Wellbeing Centre, Mid Powys Mind, Llandrindod Wells

Thursday 15 October - 2 - 4pm

Wesley Church Centre, Hospital Road, Builth Wells

Five top sportsmen and women talk about mental health

It’s one of my favourite times of the year – Wimbledon fortnight! Sport plays such a big part in so many people’s lives, whether as participants or spectators or both. For me – well, playing tennis is definitely not one of my strengths – but I just love to watch or listen on the radio. You can’t help but admire the abilities of top sportsmen and women at the peak of their game.

But there is another side to sport, and particularly over the last few years we have become more aware of the impact that the pressures of playing at the top of your game can potentially have on your mental health. Organisations such as Mind have written on the subject. And it is summed up well by Liz Lockhart on Mentally Healthy:

"We see pictures of athletes enjoying a celebrity life-style, out on the town, mixing with the ‘beautiful people’ but we rarely stop to consider the downside to the pressure that comes with success. Players must feel dreadful ‘lows’ when they are not selected and a huge emptiness when they face retirement.

The message, which must reach the ears of sportsmen and women at all levels in their game, must surely be that they need to recognise when they are having difficulties. To seek help without fear if they feel the need for it, and to realise that their mental health is as paramount as their physical health. You can’t have one without the other."

Here in Powys we have found that when people tell their stories it can be enormously helpful, both to those doing the telling and those listening or reading. So here are links to the stories of five top sportsmen and women who have talked openly about being touched by issues relating to their mental health. Their coping strategies can help all of us looking to improve our own mental health.

Frank Bruno – boxer

Frank is a former British professional boxer who competed for over thirteen years. He won 40 out of 45 bouts, including the World Boxing Council world heavyweight championship in 1995. He retired in 1996 after receiving a serious eye injury during a fight with Mike Tyson.

Rachel Bruno, Frank’s daughter, was 16 years old when her father was first sectioned, aged 41, in 2003. She and her father talk openly and honestly about the impact his mental distress has had on the family on the Time to Change website.

Frank also spoke in 2013 about how returning to boxing training was helping his mental health.

"If you can do some form of exercise, it clears your head, sets you up and paves the way for you….Try and go to yoga, try and do a bit of walking, a little bit of jogging, go to an aerobics club, go to a gym, go to a sauna or swim. Just think healthy and try and do healthy things. Sometimes it clears your head.”

Clarke Carlisle – footballer

Clarke played for a number of top clubs during his 16 year playing career including Queens Park Rangers and Burnley before retiring in 2013. He was also chairman of the Professional Footballers’ Association. In 2013 he presented the BBC’s Football’s Suicide Secret programme. 

"I still bear the scars from my battle with mental health. I kept my depression a secret from clubs and teammates for almost two decades and it almost cost me my life….. (Now) I want to do all I can to raise awareness of the importance of mental health - not only to break down the stigma and taboos but also to make sure people know where they can find support."

Clarke now talks about his experiences at conferences and events. In October he will speak about mental well being in the workplace, at a conference in Jersey organised in conjunction with MIND Jersey.

Clara Hughes – cyclist and speed skater

Clara has won medals at both the Winter and Summer Olympics for her home country of Canada. Then her life took a different turn when she began to feel depressed.

“I felt ashamed of how I looked and how I was. It was easier not be around people. I was really afraid and alone.”

She now fronts a national campaign called Let’s Talk, set up to spark a conversation about the realities of mental health and ending the stigma – covering issues just as relevant in the UK as in Canada. She describes how poor mental health impacted on her sport and what happened next in a TV interview.

“More than anything I have ever done in the Olympics this has affected people.”

Sir John Kirwan – rugby player

John played rugby union and rugby league for New Zealand for many years and is now a Rugby Union coach. But he received his knighthood in 2012 for services to mental health as well as rugby.

“One day I was happy go lucky JK … (then) the biggest fear for me was that I was never going to be well again…. " Now he says: "Hang on to hope, grab hold of it.”

Originally he saw seeking help as a weakness, and that he would be regarded as a failure. But then he reached out – he now recognises that depression is not a weakness, it is just something that happens.

John fronted a series of TV interviews in his native New Zealand to combat the stigma associated with depression.

John’s story also features on Whirlwind Stories, a website set up to help enable men to positively embrace their mental health through the sharing of stories.

You can watch a longer interview with John Kirwan at his home in Italy where he shares his strategies for living with depression.


Rebecca Marino – tennis player

Rebecca Marino played tennis professionally for Canada and took on the likes of Venus Williams at the 2010 US Open. A year later, in 2011, she was on the courts at Wimbledon. But she was due at another tournament in the UK when she first spoke to her coach about her depression.

“I was just sad and I couldn’t contain it.”

At first she found it hard to talk to her family and friends about her distress. But when she did, she realised: “Opening up to them was the best thing I’ve ever done.”

Rebecca was at the top of her game, number 38 in the world, and yet the saddest she had ever been. At the age of 22 she decided to retire from professional tennis and go to university instead. You can watch her TED talk about her experiences "Slipping Through the Cracks: Pro Athletes and Mental Health".

Rebecca wants to highlight that it’s OK to feel weak or sad and share your feelings. She feels people are slipping through the cracks, even though there are organisations to help people, she feels individuals are scared or do not know where to go for help. This is why she told her story.

Has sport played a role in your mental health journey? Let us know in the comments box below, or email: pamhinfo@pavo.org.uk

Music therapy - Olivia & Finding Frank

Olivia Bradbury is a musician and performer, who uses music as a therapeutic tool, who recently moved to Powys from London. She has considerable experience of working with people in mental distress. She tells us more about her past work, her play 'Finding Frank' which will be staged in Hay-on-Wye in June 2015, and her hopes for the future.

Olivia leading an orchestra

About me

I am a musician and creative facilitator working for the past few years mainly in mental health settings. This is where I am most interested in working and where I feel music is badly needed. Music workshops provide a way to connect with people who, for whatever reason, struggle with communicating their feelings. I have found that if patients and service users can find ways to speak through making music, they generally feel happier and consequently feel more motivated to take a positive, proactive approach to improving their mental health.

Olivia conducting the Crisis Choir

My workshops

My workshops provide environments in which participants feel supported to express what they want to express through the more abstract route of music/poetry/rhythm which may feel safer and more satisfying than communicating verbally. I provide starting points for participants’ ideas and frameworks in which their ideas can grow. This helps people not to  feel overwhelmed by the freedom of creativity. This careful balance of structure versus freedom is something that is tricky to get right and I have spent years trying to achieve this!

Too much freedom = overwhelmed, too much structure = stifled. I feel this is what is special about what I can offer and what is central to the nature of my workshops.

Olivia in 'Finding Frank'

My play

One of the places I have led workshops in London is Bethlem Royal Hospital. Here I met an elderly man who was suffering from severe anxiety and depression which was having a devastating effect on his communication skills, his memory, his relationships and his senses.

Over six months I saw him improve. It was the most rewarding experience of my career so far. I was so moved by what I saw in this man that I wrote a play about it -  'Finding Frank'. I had questioned whether making music did anything significant in the past, but this confirmed my belief that it most certainly did. This man was transformed! He used to get lost walking from the music room back to his ward, but not after the music work. He began communicating with his wife again and he was remembering how to play chord progressions on his guitar having initially described it to me like holding a foreign object - like an aubergine! He was cracking jokes, looking at me in the eye... I won’t say what else he achieved as I don’t want to ruin the story if you come to see the play.

When the funding cuts hit, I lost my work at Bethlem. Many who work in the arts have lost work over the last few years and it is only depriving thousands of people from a way of healing which is natural, sustainable and life enhancing. The play draws attention to this issue and my touring the piece is my way of building up awareness of the importance of music in treating mental health. 

Whilst making Finding Frank, I carried out many interviews of other people. I ran workshops with people who lived with mental health issues. I wanted to hear as many people's stories as possible - of their experiences of their minds and of their interactions with music. I learnt a great deal and felt very lucky to be able to gain this insight. I used audio clips of some of these interviews in the play (with their permission) and those that were featured came to see it and told me they were "proud to be part of a genuine piece" that talks "fearlessly and respectfully" about mental health. I felt very relieved that they approved! It was music that brought me close to all of these people. Music which is a bonding and unifying experience for any that get involved in it.

And now?

I have just moved to Powys after 11 years in London working in this field. I would love to continue my work here but need to find opportunities to do so. I know that organisations have an allowance for workshops but I know that funding is tight across the board. If you work for a hospital that would benefit from some musical activities and/or know of how I could source some funding to carry on with my work, I would love to hear from you!

For more information about what I have been up to and for contact details do have a look at my website.

Finding Frank is on at The Globe Theatre in Hay-on-Wye for three nights - 18, 19 and 20 June. Watch this YouTube video made for the production in London:

Dementia - who is blogging about it?

For the past couple of years we have greeted the New Year here on the blog with a round-up of some award winning mental health blogs. Some of these bloggers, such as Mental Health Cop, are well-known and have attracted large numbers of readers. The more niche the topic, often the more useful the information/comment provided by these blog authors.

This year, however, we have decided to focus on dementia blogs. With the growing success of dementia friendly communities around Powys, and an increasing awareness around dementia with schemes such as Dementia Friends, it seemed not just appropriate but high time!

So here are some of our favourite dementia blogs, written by people with dementia, those close to them, and others who are working to support them – whether in the statutory, voluntary or private sectors.

We hope you enjoy dipping into their blog pages, and if you know of others you would like to recommend just add a comment below. We would really like to hear from you.

1. Adventures with dementia

“My wife has dementia. She first attended a memory clinic in 2000, aged 52, and suffered a marked decline in the autumn of 2011. Since then there have been some improvements, despite the fact that she has now (after 12 years investigation) been diagnosed with Alzheimer's Disease.
We try to follow the advice of our Guru: 'Live a Good Life'. It's not easy but there doesn't seem to be any better advice around.
I found myself saying to a friend that I would find my wife's condition very interesting if I wasn't so involved. I've realised now that I do find it, and the issues it raises, interesting.”

This blog was started in 2011 and is packed full of useful information. The latest posts focus on A visit to the dentist, Paying GPs £55 for diagnosing dementia, and Disability Living Centres.

2. (Dementia just Ain’t) Sexy

“No photos of wizened hands here! Not a daily care blog or advice site, this is a place to share thoughts about the impact of dementia on those who live with it – who could be any of us.”

3. What I’d have done differently if I’d known my Mother had dementia

“I thought I didn’t know much about dementia until I read a research proposal on unusual experiences of people living with severe dementia – such as confusion, hallucinations and delusions. Suddenly an old and squeaky door opened and I found myself looking into a dark and scary room in broad daylight for the first time.”

A post on the Changing Minds, Changing Lives mental health and learning disability website that has provoked some interesting comments too.

4. Living in the shadow of Alzheimer’s

“This blog is about life with my husband who was diagnosed with Alzheimer's and Frontal Lobe Dementia in 2008. He was 64 at the time although now, knowing more about the disease, Alzheimer's was present many, many years ago, which is why early detection is so important. As you read the blog "Al" represents the way that Alzheimer's is invading our daily lives.”

Daily updates on living with Alzheimer’s from across the Atlantic, but so many of the day-to-day issues are relevant too here in Wales.

5. A dementia voice

“You can still live a life with dementia” is the strapline of this community of bloggers from across the UK, some of them living in remote parts of the Scottish Highlands. Several are members of the Scottish Dementia Working Group.

6. Dementia Journeys

“We aim to share dementia related news and information from around the world as well as sharing your Dementia Journey stories.”

Dipping into recent blog posts we find articles on Activities and stories to share with adults with dementia, Hospices and their ethos of care, and raising awareness of dementia with The Purple Angel – a new symbol emerging from Dementia Action Alliances in Devon.

7. Pippa Kelly

“I write every day about one thing or another, mostly about the elderly, their care and its funding, and about dementia, which stole my mum from her family in a drawn-out 10-year raid.”

Pippa originally wrote an article which appeared in a Sunday newspaper called Dementia: the longest, cruellest goodbye.

In 2014 she received an Older People in the Media Award from John Sargeant.

8. Young Dementia

This site has links to numerous blogs, some written by people with young onset dementia, and others written by the family members of those with this diagnosis.

So, that’s a lot of reading to dip into! We hope you find a blog that can help, inform, interest or inspire you – but if there are others out there you want to let us know about, please comment below.

And if you would like to write about your experience of dementia, especially if you are based in Powys or have a family member or friend who is, please get in touch.

White Rabbit Number Six: John Drake’s Mental Health Blog - 1

As the DIY Futures project comes to an end, the focus is on the stories in the book "It's the inside that matters," which have drawn some really positive feedback. But there are so many stories out there, and one book can never be long enough...  So when we heard about John Drake's experiences recently we invited him to write a guest post for the blog.  John soon came back to us with not one but three posts! Here is Part 1... with 2 & 3 due to follow shortly.

1: Down the Rabbit Hole

There is nothing so very remarkable about falling down that very deep well we call depression. What follows is just one man’s experience...

It was quite a relief when I was first diagnosed with depression. My initial reaction was: Thank God for that, I thought I was going mad! I was certainly getting fixated on some strange ideas and experiencing overwhelming feelings of dread which made it difficult to continue to work...and I loved my job.

My GP referred me to a Community Psychiatric Nurse. He assessed me as suffering from mild to moderate depression and recommended a short course of anti-depressants. But I was very resistant to the idea because I had heard so much about the bad side effects... Fortunately the nurse was very sympathetic to my attitude and suggested I instead try St John’s Wort (a herbal alternative to pharmaceutical medicine). My GP was also supportive of this and said that I should treat it like any antidepressant and use it regularly for six months.

After three weeks I felt well enough to go back to work and in fact, with the aid of St John’s Wort, I managed my condition for the next seven years, throwing myself into my work with renewed dedication. I still suffered from occasional bouts of anxiety but I knew that I had to just keep going...

Until one day I couldn’t... It was as if an abyss had opened up and I was about to fall into it.

I rang the surgery but my GP wouldn’t be available for a couple of weeks! I knew I had to talk to someone straight away and fortunately one of the other doctors had a cancellation and was able to fit me in. She listened to me for what must have been quite a long time (once the dam broke, the flood was overwhelming), signed me off work and referred me to the counselling service that was attached to the surgery.

And now that I was in safe hands, I could let myself fall...

I was offered what I understand to be the standard counselling service through the NHS, which is six sessions of Cognitive Behavioural Therapy. Towards the end of this period I was offered an extension of three further sessions, which I was happy to accept. When I first began therapy, my counsellor assessed me as having moderate to severe depression. By the time I finished the course, I felt ready to return to work. Although our sessions were coming to an end, the counsellor assured me that if I ever needed to see him again I could get a new referral through the surgery.

Throughout these first few months of illness, I had felt very well supported both by my counsellor and by the GP. At her suggestion, I continued to be seen exclusively by the same doctor who had been available on that crucial day – and I think that this continuity of service was very important in my being able to cope with day-to-day living, without being hospitalised – which, along with being forced to take antidepressants other than St John’s Wort, was my biggest fear. Rightly or wrongly, I believed that pharmaceutical antidepressants would take away my mind and that, once in hospital, I would never come out again.

The CBT sessions had taught me how to cope with going to shops and facing the dreaded ‘how are you?’ question from well-meaning acquaintances, but going back to work was another matter. Even though I had met with my boss and we had agreed a back-to-work strategy, it all fell apart when a personal crisis caused everything to unravel – and I was back almost, but not quite, where I started – still down the rabbit hole but resting somewhat precariously on a ledge – no longer falling, but not yet able to climb out.

This time my GP was adamant that I should take stronger antidepressants – but I was equally adamant that I wouldn’t. To her credit, my doctor accepted my decision and continued to support me in other ways. I was referred back to the counselling service and, this time, I was told that I could book a session whenever I needed it, through the appointments desk. I assume this was offered to me as my counsellor believed that I wasn’t the type to abuse the privilege – and in fact I only took advantage of it a handful of times.

Throughout this time I felt that I was being supported in the way that was right for me by everyone concerned in my welfare – and for this I will always be grateful.

Meanwhile, however, I was still being signed off work. Then one day I got a bit of a shock when the finance officer informed me that my sick pay had run out and that I needed to contact the Job Centre about claiming long-term sickness benefit.

And that’s when my problems really started...

DIY Futures: the library tour

When’s the last time you stepped inside a Powys library?

I was at Welshpool Library last week for the launch in the library service of the DIY Futures book – It’s the inside that matters - which Jane wrote about in January…  And a whole group of us chatted, drank tea, munched on grapes and digestive biscuits… and generally had a good old chinwag about the book, the Light the Way (mental health action group) meeting later that afternoon, the benefits of volunteering, and how many of us had lost freezer contents to the power cuts of the previous week… 

Which was great.  But what we noticed was… how different it felt to library experiences of the past. No one said “Ssssh!! Be quiet, you’re not allowed to talk above the level of a whisper in here…”  No one told us to pack away the nibbles and clear out with our cups…  Instead we were made welcome to share the content and success of the book with other library-goers and staff in our own DIY way. 

Many of the beneficiaries of the DIY Futures 1:1 service, which came to an end in March 2013, were there. Two of them gave short readings from the book. The event was accompanied by an exhibition of artwork created especially for this unique publication:

"This artwork was produced through a series of visual poetry workshops run by Celf o Gwmpas using their artist in residence programme. The workshop leader was Sean Burn, an outsider artist with a growing international reputation. His work challenges the language of racism and “reclaims the language of lunacy”; emphasising the way in which the language of illness pathologises natural responses to the ups and downs of life and for some people extreme circumstances, such as abuse, violence and neglect.

These challenges to established thinking parallel the work of DIY and the book. Instead of starting with symptoms and diagnosis, set ways of being told by someone else – this is who you are – the work of DIY started with the person – who you are, what do you want to change and what support do you need." Jane Cooke, DIY Futures Project Manager

This event is one of three taking place in the county libraries as the DIY Futures project draws to a close at the end of March 2014. Colleagues were welcomed at Ystradgynlais Library last Thursday, and are looking forward to attending Brecon Library on Wednesday 26th February (with the added bonus of a trip to The Hours café to look at the artwork and eat cake). 

The Powys library service has welcomed the book into its collections enthusiastically, and we would like to thank the staff for their support in this and the book’s ongoing promotion.

If you would like to borrow the DIY Futures book, each Powys library now has a copy in its lending collection. If you prefer to read books on a digital device such as a laptop, tablet, ebook reader or smartphone, we are working on an ebook which we hope will be available soon.

Have you been to your library lately? Tell us what you think, and the sort of books you would like to see stocked on the shelves alongside It’s the inside that matters.

Chatting to library staff about the DIY Futures book It's the inside that matters

It's the inside that matters

by Jane Cooke, DIY Futures Project Manager

That’s a truth that many of us recognise – it’s not how we look but how we feel, what we feel strongly about, what hurts or has hurt us, what has shaped us, what brings us joy that matters. That is one of the essential messages of our beautiful book. We were struggling to find a title, going over many suggestions, some of us liked one, some another, but when one of the contributors to the book said, “After all it’s the inside that matters” we all realised immediately that this was the title we had been searching for.

The book launch at the DIY Futures Celebration October 2013

This is a book of thirteen accounts of life, whatever aspect of life that the contributor wanted to talk about.

We also ran, through Celf o Gwmpas, a series of ‘visual poetry’ workshops. Through these workshops, led by Sean Burn, an outsider artist with a growing international reputation, we achieved some moving work which, through layered and intriguing images reflects the experiences and feelings of the artist.

Jane promotes the book at the Powys Mental Health Alliance AGM 

How to get free copies of the book!

Thanks to the Big Lottery Fund, the books can be freely given away – but they do have a job to do – we want the books to help us challenge the stigma and discrimination that is so often faced by people who receive mental health services, willingly or not, and/or who experience emotional distress. Sometimes those negative and disturbing ideas about dangerousness, unpredictability, strangeness or other views are held internally about ourselves – none of us lives in a bubble isolated from media comments and sensationalised reporting. The stories show how life is, what has been experienced and endured, how circumstances and life affect us.

You or your group can receive free copies of the book – provided that you use it to help challenge the stigma experienced by people who use mental health services or who experience emotional distress. One way that you could do that is to invite people to meet together, look through the book and individually choose one story to read. And then discuss the stories and how you felt reading them. Then talk about what you might do as individuals or as a group to help challenge stigma.

Get in touch to say that you are interested and we will send you some books and some paperwork – nothing too demanding – we just need to know numbers of people taking part, some comments, quotes, reactions and any actions people or groups will be taking as a result. Actions can vary from talking to family and friends to thinking about the meaning and impact of using words like ‘nutter’ or ‘mental’, deciding to follow relevant blogs or twitter accounts, asking if where you work is a ‘mindful employer’, getting some leaflets for your workplace or club, church group etc. You might want to suggest getting a speaker to come and talk to your group or club, or seeing if, for example, your sporting association is tackling stigma in mental health. (Read this BBC blog about mental health and sport). There is plenty you can do and we can help with suggestions.

Contact us by emailing: jane.cooke@pavo.org.uk or pamhinfo@pavo.org.uk

Or by ringing 01597 822191 or 01686 628300 or...  leave a comment below. 

You can watch a video of the book launch here, and a video of Marion Aslan speaking at the same event here.