NSUN Bulletin 26th Sept 2016


NSUN news

Members Blogs

Relationship is everything - A punter's review - Nicky Hayward attended the ISPSUK CONFERENCE (7- 8th September 2016)

'I felt someone finally cared who I was beyond the diagnosis' - Nicky Hayward reflects on an arresting talk at ISPSUK CONFERENCE

Call for blogging contributors

Share experiences, suggestions and opinions with e-bulletin readers, website visitors and social media friends. To get an idea of the variety of topics and points of view, please visit our blogs section. To send a blog, please email the editor.

Are you a Londoner who has been detained under section 136 or attended A&E in a mental health crisis?

Are you willing to share your experience, in the strictest confidence, for this study?

NSUN AGM and members' event and Shaping Our Lives report launch

Over 100 people attended the NSUN AGM and members' event tin June.  This was also a joint event with Shaping Our Lives who launched the report From Mental Illness to a Social Model of Madness and Distress. The report, films and photos are here.


A fond farewell... but not goodbye!

After just over four years at NSUN, Naomi Good is moving on. Although we are incredibly sad we're also really pleased that she will be pursuing her joint passion - the arts and wellbeing. Naomi's role has spanned the breadth of NSUN's work, she has helped to strengthen our direct work with members, and introduced a range of creative approaches that have underpinned the development of innovative user-led projects and programmes such as the North East Creative Leadership Programme and the North West London 'Mad Alliance' programme. Naomi's commitment and generosity have been extraordinary and will be very much missed.  However, Naomi will still be in contact with NSUN so we look forward to working in collaboration in different ways.

We would like to extend both our sincere thanks and our very best wishes to Naomi and her future ventures. We can't quite say goodbye yet!

A note of huge thanks from Naomi – what sets NSUN apart

I feel very fortunate to have begun work for NSUN in 2012. Reflecting back now over 4 years later, the most sincere feelings are the hardest to express using words. Here goes: The experience has been truly transformative for me both personally and professionally. I have witnessed that transformation in countless others lives too.

In 2012, NSUN was a National network with just over 2000 members and today there are over 5,000 members and over 6,000 followers on twitter. That growth has been very therapeutic to be part of. As more and more people have joined the mission to improve the circumstances for people surviving vulnerability and distress, discussions have grown far richer and of course diverse in perspective. The challenges have been how to harness and continue to fuel the diversity of viewpoints whilst channeling them into a strong and powerful voice for a manifesto of change but NSUN knows that you can’t get a harmony when every one sings the same note!

What is so distinctive?  

NSUN continues to be the only England-wide organisation that is led by and for people with lived experience of emotional distress. I am very proud to be part of this movement rooted in activist history. NSUN celebrating its 10th year has recently been reviewing its future development and in the process reviewing the mission, vision and aims. I have also been lucky to be a part of that process. NSUN from my perspective can’t be simply seen as a network. Of course it is and a hugely powerful collective but I see NSUN as an increasingly connected and empowered community doing things differently and for themselves.  For me personally NSUN can be symbolised by a compass supporting people to find their direction and follow their own new routes. 

What sets NSUN apart from any other organisation is the culture of the ‘personal’. Jacqui Dillon asserted that ‘personal is political’ and that is exactly what NSUN lives and breathes, supporting you in finding synergy between your personal and public world. By amplifying the personal and acknowledging experiential knowledge, people do not stand alone, they are stood alongside with NSUN.

NSUN turns wounds in to wisdom, suffering into a survival mission, which helps to feed your soul as you meet others along your journey. NSUN inspires and encourages by modeling a culture of leadership focusing always on self-efficacy, self-advocacy, self-belief and strength. What I love most about it is the people doing it by and for themselves and the ways in which it always does it differently, uniquely. NSUN defiantly holds up a mirror to mental health support services to show how things can get better for all. It is truly unique.

Our lives are not more than a collection of stories and by being a part of NSUN, I have witnessed so many moving and powerful testimonies which has made my life all the richer and stronger.  Thank you NSUN and a special mention to Sarah Yiannoullou, the Managing Director who has been a special energy, such a great inspiration, a model of resilience and given me so much strength over the years. Thank you.

For all these reasons it has been an incredibly difficult decision to leave my current role with NSUN to follow my interests in the Arts and Health field. Many of you will know I have a background in Fine Art.  Although I am leaving I remain firmly connected to you huge community of inspiring people. 

I look forward to seeing NSUN continue to grow!


Previously shared information available online

Please visit our website to find members projects, involvement opportunities, jobs and events we shared in previous e-bulletins. This includes our guides to support involvement in reducing the use of restraint in mental health settings.


NSUN Member Campaign: Restraint on mental health wards featured on mainstream media

As NSUN member Suzie Billingham has been busy working on her campaign 'preventing restraint', the Victoria Derbyshire programme has learned that the number of people with mental health problems and learning difficulties who have been physically restrained has increased significantly in the last two years.

You can hear some of the stories shared on the programme. Please be aware that these could be triggering, especially if you have been through similar experiences yourself.

'Being restrained in hospital was terrifying' (Victoria Derbyshire programme)

Face down restraint continuing in the NHS (Victoria Derbyshire programme)

Face down restraint on mental health wards (written BBC article)

Restraint must be an absolute last resort (blog by Suzie Billingham)


Do you have experience of Community Treatment Orders (CTOs)?

Peter Yeung is writing an article for The Times newspaper about Community Treatment Orders. The angle is quite a critical assessment of CTOs - the most robust study, carried out at Oxford University, was very critical of them. Peter is looking to explore what do CTOs really offer? The Ministry of Justice says CTOs are used around 4000 times per year.

If you have any experience of being a service user of CTOs, Peter would be very interested in speaking to you. How did they affect your life? What did you like and dislike about them? 

If geographically and time plausible, Peter would like to speak to you in person, but it is also possible to speak via email and phone. This will give you a chance for you to speak about your experience, and potentially alter how CTOs are used in the future.

If you wish to register your interest for an interview, please contact Peter Yeung on 07753 175089 or email peter.yeung@thetimes.co.uk by Tuesday 27 Sept.


Important consultation  on proposed legislation changes which would impact mental health tribunals

At the moment appeals are heard by a three member Tribunal panel (a Judge, a psychiatrist and a specialist lay member). The proposal is to make the default position of using a judge sitting alone which will mean no or limited input from independent expertise into the deliberations. 

The proposal is buried in a current Ministry of Justice consultation on modernising the judiciary. 

Few people seem aware of this change in the law and there seems to have been no wider engagement on the proposals. In particular the impact on the rights of people detained under the Mental Health Act does not seem to have been considered in any significant way.

This is the link to the consultation. 


New Politics for Health - Moving Forward from the Ottawa Charter

Birmingham City University are leading on developing a new 'Birmingham Charter for Health' along the lines of the 1986 Ottawa Charter for Health Promotion, in partnership with the Politics of Health Group.

They would like to know your thoughts on what social policies and approaches would support people to have better health. There have been regional pre-events ahead of the final conference which takes place in November. In the meantime you can also add your views via an online survey here


Changes ahead for Rochdale based mental health organisation

Liz Anderson, Co-Chair of the Rochdale Boroughwide User Forum (RBUF)'s board of Directors, informs us that 'as of Thursday 6th October 2016, the RBUF offices will be closed permanently.'

RBUF will be holding their next forum on Wednesday 19th October (10:30 – 1:30), at St Andrew’s Church, Entwistle Road, Rochdale, Lancashire, OL16 2HZ.

At that time, the team will be letting everyone know about the exciting changes that will be happening at RBUF.


North East regional service users event

Newcastle 1st October

Mental Health North East (MHNE) are holding a regional event for service users interested in mental health campaigning on Saturday 1st October, at the Recovery College (Re Co Co), 5th Floor Broadacre House, Newcastle upon Tyne, between 10am and 2.30pm.

As well as being an excellent opportunity to meet up with some new and familiar faces active in mental health, the event help decide the future direction of MHNE's Service Users in Action project, hearing updates from people who have been involved over the past two years and looking at potential links to work taking place at the new Recovery College. MHNE will share the latest campaigning progress from various groups and look at the opportunities to further work together. Ideas for content and contributions are welcome.

Anyone who would like to attend should email Gareth Cooper - Project Co-ordinator at Mental Health North East. There will be a lunchtime buffet and reasonable travel expenses will be covered.


Safe Space Solihull

Safe Space is a parent-run support group offering help for parents in the Solihull and South Birmingham area. The group's aim is to provide a ‘Safe Space’ for parents and carers to meet up and chat, get support, laugh, cry and make new friends. The members's children have a range of conditions and additional needs. These might be autism/aspergers, sensory difficulties, SEND, ADHD and everything in between! There are guest speakers at some meetings, otherwise members simply share experiences on issues which concern all such as school, form filling, family issues etc. The group is very friendly and ever-growing.

There are fabulous refreshments of home made cakes and of course tea and coffee. You're invited to come along and join in! Dads, granddads etc. are welcome too.

The group meets twice a month: once on a Thursday evening at 7.30pm at the Family Renewal Centre, Vulcan Road, Solihull B91 2JY and once on a Tuesday morning at 9.30am at Shirley Heath Children’s Centre, Coombe Road, Shirley, Solihull B90 3DS.

Contact safe Space for more information: Emma Bowden 07931 968 133 and Gina Whitehouse 07807 141 815.
If you are on Facebook, you can also get in touch with Safe Space on their page.


Partner wanted to work on an experts by experience course

Experts by Experience are looking for a funder / professional partner to work with their CEO on a course at The King’s Fund.

'Leading collaboratively with patients and communities' is a leadership development programme.

To know more about this, please read the blog by Experts by Experience and the page by the King's Fund organisers.


Exhibition: Bedlam, the asylum and beyond

Today asylums have largely been consigned to history but mental illness is more prevalent than ever, as our culture teems with therapeutic possibilities: from prescription medications and clinical treatment to complementary medicines, online support, and spiritual and creative practices. Against this background, the exhibition interrogates the original ideal that the asylum represented – a place of refuge, sanctuary and care – and asks whether and how it could be reclaimed.

Taking Bethlem Royal Hospital as a starting point, ‘Bedlam: the asylum and beyond’ juxtaposes historical material and medical records with individual testimonies and works by artists such as David Beales, Richard Dadd, Dora García, Eva Kotátková, Madlove: A Designer Asylum, Shana Moulton, Erica Scourti, Javier Téllez and Adolf Wölfli, whose works reflect or reimagine the institution, as both a physical and a virtual space.

Wellcome Collection, 183 Euston Road, London NW1 2BE, 15 September 2016 - 15 January 2017, admission is free.

Please visit the dedicated webpage for more information and advice for visiting during busy times. 


'Shrink Radio' conversations curated by Re:Create Psychiatry

Re:Create Psychiatry, a service-user-led exploratory platform based at the Dragon Café, brings together people with lived experience of mental ill-health and medical professionals to stimulate dialogue and collaboration.

The team hopes you can join them at Wellcome Collection (183 Euston Rd, London NW1 2BE) on Thurs 29 September at 7 pm for the first of two conversations exploring issues in the contemporary mental health system.

The topic for this discussion is 'Psychiatrists and Their Patients: an ethos of doing with, a practice of doing to?'

This is a free event, no booking required just turn up on the evening.


Charlotte Mew plaque unveiling and life celebration

The Survivors History Group will be gathering on 22 October at 12pm for an informal meeting in The Quaker Centre Café, Friends House, 173 Euston Road, NW1 2BJ London - opposite Euston Station. 
The group are thinking of drinking coffee and talk about poet and mental health survivor Charlotte Mew on the site where some of her favourite trees once grew, then walking to her childhood home in 30 Doughty Street via her adult home in Gordon Street and the ancient plane trees in Corams Fields.

The Marchmont Association cordially invites the Survivors History Group to attend the 
unveiling of a commemorative blue plaque  outside Charlotte's birth place and former home (1869-1890) at 30 Doughty Street, London, WC1N 2AA. This will take place at 2pm.

If you are interested in being part of the small  group representing the Survivors History Group at the post-unveiling reception (places limited), please get in touch with Andrew Roberts by email.


Research paper: Women with bipolar disorder and pregancy

Service user Researcher Clare Dolman has published her study on ‘Women with bipolar disorder and pregnancy: factors influencing their decision-making’. It’s a qualitative study which involved Clare interviewing 21 women with bipolar who were considering pregnancy, already pregnant or had recently given birth, to find out how they went about making difficult decisions about medication and treatment options. To supplement the data from the in-depth interviews, Clare also gathered the views of a further 50 women with bipolar by posting questions on the internet forum of the charity Bipolar UK.

“As a woman with bipolar who has faced these decisions myself, I believe I was able to get a richer picture of the most important issues for women with bipolar thinking about pregnancy. The results demonstrate very powerfully that there are wide disparities in the standard of perinatal mental healthcare women receive, and highlight how stigma and fear are two of the most significant factors affecting women’s decision-making.”

This study is part of a PhD that Clare is working towards at the Institute of Psychiatry, Psychology and Neuroscience at King’s College London.

The paper is Open Access so you can read it in full here


Metropolitan Police seek critical friends

The Metropolitan Police Mental Health Team have organised a meeting of partners, independent advisors, carers and people who access mental health services to assist in increasing the competence and capabilities of the MPS in all matter of its mental health delivery service.

Last week, the link was faulty. We apologise for this technical problem. Please use the one included within this page on our website.


Lambeth residents to march on the Council

A local campaigner contacted NSUN saying that a number of residents have decided to organise a peaceful demonstration to call upon Lambeth Council:

  • To become financially transparent and democratic. 
  • To become accountable to its residents
  • To put the interests of residents before the interests of private companies. 

One of the campaign organisers told us: 'With regard to mental health specifically I think we can safely say the effect of these policies impacts disproportionately on users of the mental health system. I am a service user living on an estate designated for demolition, it has been an extremely difficult time for not just myself but other vulnerable residents on Cressingham. In addition I am aware the Look Ahead, the council funded service, have made significant cuts to service delivery.I have been I touch with them and  SHARP and MIND.

The campaign is supported by the housing campaigns, unite the union, save Lambeth libraries, save Brixton arches, momentum, BARAC, and a number of other groups'

The campaigners are asking residents to mrch peacefully on 8 October from 12 noon to 3pm starting at Windrush Square and finishing at Clapham Common.

If you are a Lambeth resident interested in knowing more about the campaign or in joining in the demonstration, please read the group's page on Facebook.


NSUN members offered free places and discounts 

1.Three free places on 'Psychosis and Schizophrenia in Adults' conference

The event: Psychosis & Schizophrenia in Adults conference on Friday 30 September 2016 in London

Quote ref: hcuk00nsun when booking online or emailing jayne@hc-uk.org.uk

2. 20 % discount on any other HCUK mental health themed event

The offers concerns events listed here. The 20% discount is available by quoting ref: HCUK20NSUN  when booking.(*Cannot be used in conjunction with any other offer.  Full T&Cs available upon request.)


Have you had, or care for someone with, cancer and experience of mental ill health? Share your story!

Macmillan Cancer Support is working to gather personal stories from people living with, or caring for someone with both mental health problems and cancer.

Cancer affects nearly 1 in 2 people during their lifetime, and mental health/emotional wellbeing problems affect 1 in 4 adults during any one year, so there will be lots of people out there with this dual lived experience.

Macmillan’s Mental Health and Cancer Taskforce aims to better understand the needs and ideas for change of people affected by both cancer and mental health problems. The overall aims are to

  • Improve and innovate services, through input of and creative collaboration between experts by experience, Macmillan staff and health professionals
  • Build evidence of the need for better integration of mental and physical health care
  • Raise awareness and influence nationally on these issues

Interested? MacMillan are looking for people who

  • have lived experience of mental health problems and cancer, either living with both themselves, or caring for/having cared for someone who has both themselves
  • are happy to share their story via telephone or email, with a view to improving things for others with mental health problems and cancer in the future
  • would be willing to share their story via interview or e-mail

For more information and a contact email please take a look here


Take part in the Department of Health website survey

The DoH would like your views on their website and how you use the content they publish. 

New policy paper: dementia nursing, vision and strategy

Sets out the role and responsibilities for nurses providing care and support for people with dementia.

Consultation outcome: pricing of branded health service medicines

The Department of Health received 51 formal responses from a variety of organisations including the pharmaceutical industry, patient groups, NHS organisations and charities.