NSUN 29th May 2018

NSUN Bulletin Tuesday 29 May 2018
National Survivor User Network NSUN, network for mental health
NSUN Bulletin Tuesday 29 May 2018
Table of Contents
Dear Viewpoint
Welcome to the 29 May edition of our weekly ebulletin that contains lots of updates, news and views.
Do email us if you have any news or information that you would like included in a future bulletin. Previous bulletins can be viewed here.
Donations to NSUN are gratefully received for this free service.
You can donate directly here.
We have a variety of ways you can support NSUN, including a few that will not cost you an extra penny, such as:
NSUN news 
Over the past few months people will have been receiving GDPR notices on a daily basis. We recently sent out a notice to all our members which you can read here
GDPR isn't just about consent, it's important that you understand how we communicate with you and hold and use your data. We tell you how we do this in our updated Privacy Policy.
Hopefully you'll be pleased to hear that if you are an existing member of NSUN you do not have to renew your consent to continue receiving communications from us as you provided consent when you signed up as a member. Also, you will be aware that you can cancel your membership and unsubscribe from our communications at any time. If you have any questions do please contact us at info@nsun.org.uk.
NSUN's future
Following the letter we sent to members and supporters last month we have had an overwhelming amount of support. We are pleased to say that due to some shorter term funding from Tudor Trust and Lankelly Chase we are able to continue to operate and look to building a more secure future. We will be providing further updates over the coming weeks.
We would like to take this opportunity to thank all of our members and supporters who continue to believe in the value of the network.
Reminder: Involvement Workers Group to meet
The Involvement Workers Group is for anyone with lived experience who has a role in supporting others with lived experience to influence organisations, e.g. to have an impact on organisational policies and strategies and the employment and training of staff.
Attendance at meetings is free of charge, but you will need to be able to cover your travel expenses and lunch, because there is no funding for the Group at the moment.
Date: Friday 01 June
Time: 11.45am - 3.45pm
Venue: Attend office, Kings Fund, 11-13 Cavendish Square, London W1G 0AN
If you are interested in joining the Group, please contact Dorothy Gould, the Group’s facilitator, for further information at gould.dorothy@gmail.com, or on 07565 399 422.
Selected blogs 
The publication of the Kindred Minds Manifesto inspired Rufus May to write this piece about whether we talk enough about race in mental health.
This blog explores issues encountered by peer researchers.
Equally Well: Major new initiative seeks to reduce physical health inequalities for people with mental health problems 
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A major new initiative to tackle one of the biggest health inequalities was launched last week by Centre for Mental Health, Kaleidoscope Health and Care and Rethink Mental Illness in collaboration with more than 20 professional organisations, charities and health service bodies across the country.
NSUN is one of the 20 founding member organisations of the Equally Well UK collaborative.
'Equally Well UK will bring together organisations with a part to play in reducing the 15-20 year life expectancy gap facing people with a severe mental illness in Britain today. Based on a similar scheme running in New Zealand, Equally Well UK brings together organisations involved in mental health and physical health in a common effort to reduce the health gap'.
Read more about Equally Well  and how to join the collaborative here.
Follow Equally Well UK on Twitter @EquallyWellUK
Mental health hospital discharge and human rights 
Hospital discharge and human rights A toolkit for practitioners.
When people are discharged from mental health hospitals, this can raise human rights issues including their right to liberty, their well-being and their autonomy/independence.
The British Institute of Human Rights and St Martins of Tours have run a project which aimed to build the knowledge and confidence of healthcare practitioners to use a human rights approach to hospital discharge to better support people discharged from hospital, and in turn to help prevent unnecessary admissions.
Launched as part of the project, this free to download toolkit explores a human rights approach and is based around three key issues: delayed discharge, premature discharge and discharge to an inappropriate setting. 
Papers needed fo a book on Open Dialogue and Psychosis 
Open Dialogue Brian Martindale and Nick Putman of Open Dialogue UK are co-editing a book on Open Dialogue and Psychosis for the ISPS book series (The International Society for Psychological and Social Approaches to Psychosis).

Whilst Open Dialogue is not an approach specialised to psychosis, the main research papers have focused on first episode psychosis and the outcomes have been very positive.

For this reason it feels prudent to collate this book focusing on the use of Open Dialogue with people/families affected by psychosis.

You can contribute with a paper of around 1500 words on any of the following themes:

1. First person accounts from clients/families who have engaged with an Open Dialogue service.
2. Accounts from Open Dialogue practitioners about their work with people experiencing psychosis.
(Please note the above two themes can be combined into one paper where there is an opportunity for both Open Dialogue practitioners and clients/families to co-author a paper).
3. Service developments related to Open Dialogue and psychosis.
4. Research on Open Dialogue and psychosis.

Please complete the form on this page.

The editors would prefer to receive the papers by 8 June as they mean to complete the book by the end of June.
War on Welfare (WoW) campaign returns 
WoW campaign returns Four years ago, the WoW campaign got Parliament's attention with a petition, asking the government to carry out impact assessments of the cuts. This led to the first ever debate in the Commons on an agenda chosen by people living with disabilities.

Now campaigners are hoping to get cross-party support directly from the backbench business committee, in order to secure another debate, which would focus on ministers' refusal to calculate the impact of cuts on people who live with disabilities.

For more on the return of the WOW campaign please read dedicated articles on Disability News Service and My Disability Matters
Rethinking lived experience in mental health communities, research and practice 
Lived experience of distress Experience matters: Rethinking lived experience in mental health communities, research and practice will be a day of exciting discussions on the importance of our life experiences when considering mental health.

Date: 29 June 2018
Time: 09:30 - 18:30
Venue: Edric theatre, Student Centre, Borough Road, London SE1 0AA

You can attend if you are:
  • Someone with experience of mental distress
  • A supporter of people with experiences of mental distress (carers, friends, family members, mental health professionals, social workers)
  • An Academic, researcher or student
  • Someone with an interest in mental health
For a full programme and to book a place, please visit this page
At risk yet dismised:mental health people who are victims of crime 
at risk yet dismissed
'People with mental health problems are more likely to be victims of crime, feel the impact of being a victim of crime more acutely and are less likely to get the support they need.' say Mind and Victim Support, who have teamed up to organise the campaign 'at risk yet dismissed'.
The campaign has produced a report as well a guidance for:
  • Victims of crime
  • Police and PCCs
  • Lawyers and judges
  • Healthcare staff
  • MPs and councillors
You can find all these resources on this page.
Nominate for the Marsh Awards 
marsh awards The Marsh Awards recognise excellence in mental health peer support in England and Wales, and are run each year by The Marsh Christian Trust, Mind and Peerfest partner organisations.

Nominations are open for the 2018 Marsh Awards for Mental Health Peer Support.
If you're involved in a peer support group or project this is your opportunity to win £500 cash to support your work, plus unique opportunities throughout the year to attend workshops, networking events and peer action learning.

Learn more and nominate here.

Nominations close on 31 July.  
Help to redesign virtual reality (VR) environments 
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The McPin Foundation and The Helen Hamlyn Centre for Design, Royal College of Art, are looking for people to be involved in workshops and interviews, focussed on helping to redesign virtual reality (VR) environments, for use in a new therapy to help people with psychosis or paranoia. These workshops and interviews will start in August 2018. This work is part of a larger research project which will be investigating whether virtual reality technology can be used as a form of therapy for people with psychosis or paranoia. To read more about the study please click here
We are particularly looking for people to support this study who have (or had) experiences of psychosis. You do not need to have experience of virtual reality.
How to register your interest in the workshops and find out more:
Please contact Tillie Cryer by email (TillieCryer@mcpin.org) or phone (020 7922 7874) to register your interest in taking part in the workshops and interviews. Please also contact Tillie if you would like more information about the workshops and interviews.
Mental health in the news 
In the newsThe Guardian
The Independent
The Conversation
Contact Music
Dorset Echo
Huffington Post
June events - Reminders! 
Women's Mental Health Network launch
A  live music and poetry event, Turn Up the Volume, will launch the Women's Mental Health Network (WMHN).
Turn Up The Volume will be a display of brilliant female voices who all want to see a change in the mental health system.
Date: 08 June
Venue: Kennedy Hall in Cecil Sharp House in Camden. London
Tickets: £21.50
For more information about the event and a contact email to book a place, plese visit this page
Suffragette city summer solstice walk in London
sufragettesArtist Michelle Baharier invites you to walk though Suffragette City with her on 23 June staring at 11.45 pm meeting South side Tower Bridge, meeting  the Cook, Hannah Griggs or Wonder Woman - ending outside house’s of Parliament at Boudiccia’s sculpture
.....it will be a night of fun and frolics...playing games and telling stories Celebrating the hidden legacy’s of women who have made changes though their contributions  to societal transition.
23 June 2018, at 11.45 pm meeting South Side Tower Bridge at 42 bus stop.

This walk is supported by NSUN, Hoarding UK and Colin and Strawberry Jazz.
Help needed to publish the Kindred Minds Manifesto in print 
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The Kindred Minds BME Manifesto, called "A Call for Social Justice", is unique for being BME mental health service user led.
The Manifesto is of national relevance to BME communities and essential reading for people campaigning for social justice.
The Manifesto calls for changes in local, regional and national policy and practice, in order to improve the mental wellbeing and lives of BME mental health service users. The Manifesto addresses interlinked areas of disadvantage and racism in: mental health, policing, benefits, employment, education, housing and research and knowledge production
Whilst some funds were received to start the work, this was not intended to fund everything we needed to do. The next stage is to publish, print and widely promote the Manifesto which we are now fundraising for.
You can donate to the cause here.
Visit the Kindred Minds Manifesto Facebook page for updates.
NICE: Depression in adults: treatment and management - Second consultation 
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Stakeholder position statement is successful in its pressure for a second consultation.
NSUN was one of the signatories to a position statement wrote to David Haslam, Chair of the National Institute for Health and Care Excellence (NICE) November 2017, to formally request a second full stakeholder consultation of the next revision of the guideline on the Recognition and Management of Depression in Adults, prior to its formal publication.
Many stakeholders were extremely concerned about significant flaws in methodology, lack of transparency and several inconsistencies found in the draft document published in July 2017. Publishing the guideline in its present form may have a damaging impact on patient care and present serious ethical challenges to professionals delivering mental health care.
The concerns relate to numerous serious methodological flaws including the fact that NICE has used largely out-of-date data on service user experience, has failed to meet the Government’s requirements regarding the parity of esteem between mental and physical health (specifically in terms of long-term conditions), has used inadequate methods for working out whether a treatment is effective, has used statistical analyses that are associated with serious and unique risks, has ignored quality of life outcomes and has failed to group different forms of depression in ways that reflect best evidence and clinical expertise.
This process has raised concerns about how NICE develops guidelines.
NICE announcement
NICE has decided to run an exceptional second consultation on the guideline. This will start next Tuesday 15 May. The deadline for comments will be 5pm on 12 June.
The consultation documents will include revised versions of the short and long versions of the guideline and a table of all comments received in the first consultation, together with NICE’s responses. NICE is running this exceptional second consultation so that, before final publication, stakeholders can see how their previous comments have been dealt with and to provide an additional opportunity to comment. Responses to second round consultation comments will be published with the final guideline.
CQC engagement opportunities 
Case studies to support our State of Care publication and wider Deprivation of Liberty Safeguards (DoLS) work
The State of Care 16/17 publication outlined that we continue to see variation in the practical application of the Deprivation of Liberty Safeguards (DoLS). This year’s State of Care report is due to publish in October 2018 and is our annual assessment of health and social care in England. CQC want to engage people who have had experience of being under a DoLS (or their relatives/carers), to create person-centred case studies that can be used. 
They would like to interview people Monday-Friday, during the week of 04 to 08 June.
For more in-depth information please contact publicinsight@cqc.org.uk.
Mental Health Service User Reference Panel
CQC are recruiting to our Mental Health service user reference panel (MH SURP). The Service User Reference Panel is made up of people who are, or have been, detained under the Mental Health Act. Each member is encouraged to share their views on our work and advise us about how CQC can involve more members of the public.
Members of the panel are supported to take part as per the CQC public payments and reimbursement policyContact publicinsight@cqc.org.uk for an application form and further information
Deadline for applications 8 June.
GOV.UK news 
'Unethical' patient data sharing with Home Office to end
Government minister Margot James announced on 9 May that the Home Office would suspend its data sharing agreement with NHS Digital. The u-turn follows sustained pressure from charities, NHS doctors and the Commons  health and social care select committee. Data sharing will only now take place when a patient is suspected of a serious crimeYou can read the full news article here. (courtesy of Healthwatch Hackney)
Shaping the future of the community mental health services pathway & the Care Programme Approach
NHS England is looking to better understand what people, and underrepresented groups specifically, want from the process of care coordination and care planning – also taking into account the potential role of digital technology. This would inform our work around the future of the Care Programme Approach (CPA) and how it could be (co-) redesigned to improve community mental health care. You can complete the online survey here.
Public Health England: Campaign Resource Centre
Download or order resources, such as leaflets, posters, guides and resource packs for all campaigns. Find out more here.
Independent Review of the Mental Health Act - summary of work so far
Along with Easy Read and BSL versions of the interim report, this page offers a summary of the review's work so far.
Disclaimer: Not all material included in this newsletter are generated by NSUN. Where possible we try to share materials which reflect the diversity (geographical and other) of an entire national network. We welcome suggestions from you, so please email the editor info@nsun.org.uk
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