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

Life on the ward: the patient's voice

This week Rhydian Parry tells us about volunteering with Powys Patients’ Council at Bronllys Hospital in South Powys.

I have been a volunteer with Patients’ Council for about a year and a half. I have first-hand experience of what life on the ward is like, having been a patient at Bronllys several times over the past eleven years. I know how tough life can get on the inside and how big an impact seemingly trivial stuff can have. I’m lucky to be in a position where I can try and use my experience of being on that ward from the age of 17 to help others and ensure that the voice of the patients at Bronllys is heard and represented.

We had a very productive meeting last time on the 11 December. It gave us a huge amount of information to take forward and highlighted the importance of some issues that have been consistently coming up. Some are in the process of being dealt with at the appropriate levels such as the lack of activities on the ward. It is an issue we have been working closely with senior and ward managers for a while and are now at a stage where discussions are taking place with Brecon and District Mind (formerly Brecon & District Contact Association - “the Loft”) amongst others to provide structured activity on the ward, as well as some in the community.

The need for a quiet room is another prevalent issue which, sadly, still has not been sorted. We are currently waiting for the walls to be painted; this needs to be done before anything else in the room and is holding the whole project up. I just hope that work can begin soon.

Many people raised issues around the weekly case conferences. It was felt that these were already very intimidating and asking whether patients minded student doctors being there when arriving was too late. People found it very difficult to say 'no' face to face with the students. Having a tick box on the pro forma was suggested by a patient and passed on to the ward manager. She agreed that it was a good idea and will be adding one to the form straight away.

Concerns were also raised around a perceived neglect of patients’ physical health. These were passed on and I was informed that a ward-based doctor was due to start on 23rd December. This will hopefully alleviate the situation somewhat.

It's also important to recognise some of the actions that have been completed over the past year. Good examples of these are having a decent TV, wall mounted and working well making a big difference to the dayroom, and the Mobile Phone Policy. Patients had only very restricted access to their phones and it was a difficult issue to overcome. But, after a lot of hard work, we now have a new Mobile Phone Policy which does allow patients to have access to their phones.

I would also like to thank the staff on Felindre ward at Bronllys. Not only do we hear a lot of good things said at meetings (although people would love more staff!) we are made very welcome when we visit, ensuring we have the ideal room and we also have a healthy working relationship. Without effective co-operation positive action and changes would be very hard to come by.

Many thanks to Rhydian for his insight into the Patients’ Council operating out of Bronllys Hospital in the South of Powys. Patients’ Council aims to give a voice to Powys residents wherever they are offered acute in-patient mental health services - you can find out more, including meeting notes, on our website. And more good news - some of my colleagues are currently working to develop a similar arrangement to give a voice to patients in the North of Powys.

How important do you think it is for patients to have a voice?

The YAPS project @ Ponthafren Association

The YAPS Project, which is delivered by Ponthafren Association, offers peer support mentoring to young people (16 - 25 years old) who experience mental health issues, by helping to give them a voice of their own in the development of services. Here at Powys Mental Health we spoke to Zoe Greenslade, one of the volunteer mentors with the project.

Why did you decide to become part of the group?

I’m Zoe Hannah Greenslade, I am 18 years old and in early January I started volunteering at the Ponthafren Centre, in Newtown. Since then, my time here has been amazing – with no two days being the same. I was thrown straight in at the deep end and within days of being here I was asked whether I would be interested in joining the YAPS Project.

YAPS stands for ‘Young Adult Peer Support’ and I think it is a brilliant way of helping other young people to share their own experience on mental health. Peer Support isn’t as formal as counselling. We young mentors are providing this service to other young people because we care. All of the mentors are volunteers, meaning we don’t get paid to be a part of this project. We are dedicating our time to help and support other young people who may be suffering in silence, and thinking that they are alone.

Mentoring is a confidential and non-judgmental relationship, in which we provide a friendly face and support in order to help other young people feel happier. By meeting in a safe environment, both mentors and mentees can feel at ease, knowing anything they discuss will remain confidential. Previously, I have had several attempts at counselling, however in most cases I gave up attending my meetings. I always felt like the counsellor wasn’t really interested in helping me and was only talking to me because they were paid to do so. With YAPS, this isn’t the case as all mentors are volunteers with an interest in helping others and using their experiences to support their peers. I am really looking forward to being a mentor for so many reasons. Firstly, because I wish I had the opportunity to have a mentor for myself, when I most needed one. I wish I’d had someone who I felt actually wanted to listen to me, purely because they cared and wanted to help me get better.

What has been the response to the meetings so far?

Once a month all of the mentors meet up at Ponthafren in a ‘focus group’ and discuss any issues or ideas we have regarding the YAPS Project. We are asked by the Project Coordinator for our views and input to all parts of the project from leaflet design, promoting the project and to the content of the mentor training. As the whole idea is still quite new to us, it is lovely being able to learn from one another, to be consulted and listened to and being able to put together loads of ideas that we believe will make the YAPS Project stand out and become a fantastic resource.

Who can join the group?

Anyone aged 16 - 25 who is interested in becoming a mentor.

The YAPS Project is looking for young people who can commit to becoming a mentor, there are no set hours - you may be able to give an hour or two a week or a month, either is fine. Once you are a mentor there will be training and a Disclosure and Barring Service (DBS) check then you will be paired with a mentee. If you are looking to become a mentor – or know anyone who may be interested – or for any other information regarding the YAPS Project, then contact Caroline Mercer (YAPS Co-ordinator) on 07792 346 519 or email yaps.project@ponthafren.org.uk

When is the next meeting?

20th February 4pm @ Ponthafren in Newtown.

What do you hope to achieve from being a mentor?

I want to be able to feel satisfied. Satisfied that I have:

• Made a difference to even one young person’s life, for the better.
• Put a smile on their face.
• Given them the confidence that there are still people who want to help and care for them.
• Reassure the mentee that, most importantly, they are not alone.

A big thank you to Zoe for telling us all about the YAPS Project and her involvement. YAPS is one of seven projects funded by the Big Lottery Fund as part of the One Powys Connecting Voices programme. You can read more about YAPS in the latest One Powys - Connecting Voices newsletter, or on the Ponthafren Association website.

Tell us what you think about mentoring. Is it a good idea? And can it help shape mental health services for the better?

Unconventional Wisdom: Shaping Services Together Conference, Powys, September 2013 - Adding To The Debate?

2013 Conference Theme: Shaping Mental Health Services Participation

In September 2013, Powys Association of Voluntary Organisations  (PAVO) were involved in running a conference in Powys, one of three events across Wales (you can access all three conference reports here).  The event was funded by Public Health Wales and supported by Welsh Government.  The theme was mental health participation.

PAVO lead on the Powys Stronger in Partnership Participation Network and we are a member of Mental Health Action Wales.  You can find out more about the activities we are involved in and the difference we think we are making here.

You can read a full report (12 pages) from the 2013 Shaping Services Together Conference, Powys, on our website here.  In this blog though I wanted to explain a bit about the ideas underpinning the conference planning in 2013.  I also want to tell you about another free conference that you are invited to on Friday 7th March 2014.
 

Learning From Previous Conferences ...

We first ran an event of this kind (i.e. national participation) in 2012, you can watch a video from this event here and read the conference report here.   Eleanor Longden spoke at this event and her talk continued the debate in Powys that challenges the conventional wisdom underpinning our mental health system.  A wisdom that is founded on the idea of "mental illness". You can read more about this debate in my previous blogs here and you can watch Eleanor talk on ted.com in this link.  

Eleanor Longden is joining us again on 7th March 2014, you can find out more about this here.

 

Thanks to people's willingness to get involved in the 2012 conference and to the feedback we received we were able to learn a lot from this event. 

We used this learning to help us to underpin the  2013 conference planning on two questions:

 

“Should mental health services be shaped by the question what happened to you rather than what’s wrong with you?”  

 

"If so, how can mental health participation influence such a fundamental change to our mainstream mental health services?"

 

As well as asking us to provide more opportunities to explore the de-medicalisation of distress, you also told us that future conferences should include:

"...time for exceptional and inspirational speakers that bring to the debate their own experience of mental distress"

 

... no pressure then! 
 

So A Big Thank You To Jacqui Dillon...

 

Given this we were absolutely delighted when Jacqui Dillon agreed to come to Powys and talk at this conference.  We think that she fitted the bill and luckily you don't have to take my word for it,  you can watch her full talk here.

“Jacqui Dillon is one of the most inspirational speakers I have ever met, thank you for enabling me to be part of today"

Jacqui Dillon is a writer, campaigner, international speaker and trainer.  She is the National Chair in England of the international Hearing Voices Network.  Her talk was entitled "The Personal is Political" and you can download the slides here. 

She began by sharing something of her own story, her experiences and her survival strategies.  Survival strategies such as self-harm, hearing voices, eating "disorder", creativity and resourcefulness.  Survival strategies that are often judged by mainstream wisdom as "symptoms" of "mental illness" rather than a natural and normal response to difficult life experiences.

She then shared her own experience of mental health services which she summarised against 6 themes:

• Pathologised:  "You are ill. Everything that you say and do will be seen as a consequence of your illness."
• Denial:  ‘It never happened’ or ‘It did happen but you will never recover’.
• Medication:  ‘You are resistant and the fact that you don’t want to take medication is evidence that you are ill’ .
• Dependency & Compliance: ‘You must accept the psychiatric diagnosis and medication and we will give you benefits and a bus pass’. 
• Disempowered: ‘You will never recover. You will always have this illness. You won’t be able to work’.
• Passive:  ‘You do not know what is best for you. We know what is best for you’. her own experience of mental distress

Then she talked about finding a new paradigm, which she broke down into 4 main areas:

• 
  Trauma & Recovery
• Understanding Dissociation
• Attachment Theory
• The Personal Is Political 

She shared some of the latest research findings around childhood adversity & psychosis, for example:

• People abused as children are 9.3 times more likely to develop "psychosis"; for those suffering the severest kinds of abuse, the risk rises to 48 times (Janssen et al., 2004).
• People who have endured three kinds of abuse (e.g., sexual, physical, bullying) are at 18-fold higher risk of psychosis, whereas those experiencing five types are 193 more likely to become psychotic (Shevlin et al., 2007).
• People with "psychosis" are three times more likely to have experienced childhood sexual abuse (CSA) than those with other diagnoses, and 15 times more likely to have been abused than non-patients (Bebbington et al., 2004).

She ended her talk by suggesting some answers to the question:  "What is to be done?".  Her ideas can be read in detail on the slides from her talk available here.

I highly recommend watching her talk (just over an hour).  So far over 1,000 people have viewed it and the feedback, not only from the conference but also from people who have watched her talk on youtube, has been incredibly positive.

 Further Information and Videos From Shaping Services Together 2013

Jo Mussen, Vice Chair of Powys Teaching Health Board and their Lead for Mental Health, Chaired the morning, as part of her conference introductions which included a thought provoking reading from the Robert Whitaker book,  Anatomy of an Epidemic.  The extract was entitled “A Modern Plague” and it can be read here

Sian Richards, Welsh Government Strategy Lead, National Mental Health Partnership Board, alongside other partnership members, and David Crepaz-Keay, Head of Empowerment and Social Inclusion, Mental Health Foundation, talked next presenting us with a presentation entitled “Together for Mental Health” that provided the latest information about: 

• The National Mental Health Partnership Board


•  Developing a National Forum for strategic participation in national and local mental health partnership boards 

You can listen to this in full (36 minutes) here.
 
Powys Youth Forum and Clwyd Theatr Cymru developed, planned, led and ran a participatory workshop on the theme: “Wisdom Across All Ages”.  This helped us to begin to explore participation for people of all ages.
 
You can find out more about the conference and read a full conference report (12 pages) here.

Unconventional Wisdom:  The Debate Continues 7th March 2014

Free Conference:  Wales Early Intervention Service Conference:  Finding Meaning in "Psychosis"?

Friday 7th March 2014.  The Pavilion, Llandrindod Wells Powys.  9.30 am for refreshments.  Finish 4.30 pm.   

 

Another chance to join us and find out more about the debate that challenges the conventional wisdom and to explore the question:  “Should mental health services be underpinned by the question what happened to you rather than the question what is wrong with you?”. 

 

Speakers Are:

 

Euan Hails - Clinical Lead Psychosis Services, Hywel Dda Health Board.  Bio to follow.  But to find out more about his work click here.

 

Eleanor Longden - an award-winning postgraduate researcher with a specialist interest in psychosis, trauma, and dissociation. She is a three times TED speaker, a trustee of Intervoice: The International Network for Training, Education, and Research into Hearing Voices and Soteria Network UK, and has lectured and published internationally on promoting creative, person-centred approaches to understanding and recovering from psychosis.  More here.

 

Dr Lucy Johnstone - consultant clinical psychologist and the author of 'Users and abusers of psychiatry' (2nd edition Routledge 2000) and co-editor of 'Formulation in psychology and psychotherapy: making sense of people's problems' (2nd edition Routledge 2013) along with a number of other publications taking a critical perspective on mental health theory and practice.   More here

 

Dr Sami Timimi - Consultant Child and Adolescent Psychiatrist and Director of Medical Education in the National Health Service in Lincolnshire and a Visiting Professor of Child and Adolescent Psychiatry at the University of Lincoln, UK. He writes from a critical psychiatry perspective on topics relating to mental health and has published over a hundred articles and tens of chapters on many subjects including childhood, psychotherapy, behavioural disorders and cross-cultural psychiatry.  More here.

 

This conference is an opportunity to explore:

• how we understand and make sense of these “psychotic” experiences
• best practice in early intervention responses that help people and those close to them cope with these experiences, learn from them and thrive
• the interactions, treatments and ideas that make a positive difference to people’s lives and how we make sure that these are offered with openness and transparency
• interventions and treatments that early intervention services could deliver and how they might continue to develop

Interested in joining us?  To find out more about this conference and to get more detail about how to book, click here or contact the team on pamhinfo@pavo.org.uk, telephone 01686 628 300.

 



The BIG talk about mental health

I think I might have mentioned before that my partner Graham Brand works for the Big Lottery Fund (aka BIG) based in Newtown. Well, today one of the projects funded by the BLF - Time to Change Wales  - had a major day of campaigning around the stigma associated with mental distress.

"24 hours in which to start conversations about mental health, raise awareness and share the message that mental illness is nothing to be ashamed of, neither is talking about it. Sometimes it's the little things we do that make a big difference - like having a chat over a cuppa, sending a text or inviting someone out. And on Time to Talk Day we’re encouraging people to do just that. In fact, we're hoping to spark a million conversations, and we want your help to do that."

The day is called Time to Talk, and if I'm quick I might actually finish posting this blog before midnight on 6 February! There certainly has been a lot of talk about mental health today, both in the more traditional media and social media (check out these giant cups!). Tweets have been pouring in, telling us what people in organisations - large and small - have been talking about.

Whilst we have engaged in a bit of a debate on this blog around the approach taken by the Time to Change project the campaign goes on, of course! We would still like to challenge the underpinning theme of the campaign, that 1 in 4 people experience mental distress. We still strongly believe that any one of us could experience emotional trauma at any time - who knows what lies around the corner for any of us? We don't like the word "illness" either, preferring to use that of "distress"... but these arguments are out there for all to see. So today I will just highlight what happened in Newtown, and hundreds of other workplaces across the UK, and... in the end... readers have to make up their own minds. 

In the Newtown Big Lottery Fund office staff set up a Pledge Wall for Time to Change Day, and Lisa Powell sent through some photographs and a couple of paragraphs describing how they approached the day:

Today was Time to Talk day which is backed by Gofal, MIND Cymru and Hafal, and in the BIG office in Newtown we supported this campaign to get 1,000,000 conversations going about mental health throughout the UK and hopefully help put an end to the stigma surrounding mental health.

We had a pledge wall in the kitchen so people could make pledges about things they could do to be more aware of mental health, or conversations they could have with friends or anyone they know who suffers from a mental health illness. Basically anything that can be done to support the issues surrounding mental health. There were tea and biscuits too so people could sit and have a chat about their experiences or their exposure to this subject. There were leaflets about how to start conversations about mental health and facts and myths about it too. There were also posters put up around the office to remind people but also with facts and statistics on them about the amount of people who are affected by this.

Time to Talk had a big social media campaign, and backing from the Health Minister and celebrities who have been diagnosed with mental disorders. As well as having big and small organisations plus anyone who wants to talk about this subject, then we can all end the stigma surrounding this illness that affects 1 in 4 people.

"I pledge to continue to listen." One of the pledges on the Big Lottery Fund Pledge Wall.

Did you listen to anyone talk about their mental health today?