11 Mar

National Survivor User Network (NSUN) Bulletin – 4 March 2019

Welcome to the Monday 04 March 2019 edition of our weekly ebulletin, our first of the year. As usual it contains lots of news, views and updates.

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The Value of User Led Groups – 2019 campaign

Since launching our main campaign for 2019 more groups have closed.

Last week we reported that the Liverpool Mental Health Consortium was closing and this week you will read in one of our featured articles that Voices for All in Rochdale have announced that they will cease business 26 April 2019.

Although we’ve been reporting on the threats to user-led groups for some time and highlighting how competitive and inaccessible commissioning processes and changing charitable trust funding has contributed to the struggles, the news of these closures still come as a shock.

The language of co-production and community investment seem to be overlooking the value and role of user-led groups. Whilst we have recent policy documents state the importance of prevention, peer support and community alternatives we continue to hear about the struggles and closures facing user-led groups.

This is a crisis!

As we see more groups disappearing we will hear about the devastating effects on their communities. These closures mean that there is less peer support, reduced diversity in the sector and fewer alternatives to an ever stretched health and social care service.

The first stage of the campaign is to raise awareness of the current situation and to ask ALL NSUN member groups and organisations (not just user-led groups) to please help us in completing our survey here.

The reasons for the survey are twofold:

  1. We need to ensure our membership database is as up to date as possible with ALL organisation’s /group’s details (not just user-led groups)
  2. In part 2, we then need to gather stories from all user-led groups sharing with us your current experiences and concerns for the future. With your responses, we will create a social media campaign to raise awareness of the value of and challenges facing user-led groups.

Please complete our survey now here, or at the latest by Monday 25 March. If you have any difficulty with doing this, please let us know at info@nsun.org.uk or call us at 020 7820 8982.

You can read the recent article where NSUN and Shaping Our Lives warned that user-led organisations are continuing to close, putting the sector at real risk of extinction. Read the full article by John Pring (Disability News Service) here.

Thank you so much for your help in advance. It’s only by hearing what you have to say and gathering our members’ voices that we can put our collective voice forward to stand up and evidence why user-led groups are vital to our society and why they must not be allowed to die away.


A short video and the Soap Boxes from our Members’ Event in October 2018 is now available. You can also browse our Annual Report 2017-2018 here.

You can view the Principles of Peer Support Charter here.

Jobs and involvement opportunities – already shared

If there is still time to apply or get involved, you can find previously shared opportunities on this page.

Selected blogs

Roxanne’s story

Selected for Women’s History Month, this story was published to illustrate the work of WISH, the organisation giving a voice to women in mental health.

Seeing self-harm as an embodied social practice

A reflective blog by Amy Chandler, Chancellor’s Fellow in the School of Health in Social Science, University of Edinburgh. Her research draws on qualitative, narrative and arts-based approaches to explore meanings and practices of self-harm, suicide and drug and alcohol use, with a particular focus on embodiment.

Voices for All in Rochdale to close

Voices for All (formerly RBUF) sent out notice of closure last week.

As of Friday 26th April 2019, Voices for All will cease business due to a lack of continuation funding meaning that all their support services –  groups, counselling service and Forum, will all stop from this date.

Voices for All has been running since 2005 providing support for people in the community through social, therapeutic and peer support and invaluable connection to the wider community.

The news has been shocking for their members, along with CVS Rochdale closing last year this reduces valuable community support.

The NHS Long Term Plan talks about dissolving ‘the historic divide between primary and community health services’ and increasing investment in community health services.

Organisations such as Voices for All have played an important role in prevention and unnecessary admissions to hospitals, often being available to people 24/7 and providing essential alternatives based on what people have said directly helps them.

We hope that the years of building the support, relationships and partnerships are not all lost with the imminent closure and some of the voices of support can somehow prevent Voices for All disappearing completely.

If you would like to show your support then letters can be sent to the following:

hmr.ccg@nhs.net Chair of Rochdale CCG

sara.rowbotham@rochdale.gov.uk Deputy Leader and Cabinet Member for Health & Wellbeing

Wendy.Cocks@rochdale.gov.uk Assistant Health Portfolio Holder.

International Women’s Day event 7 March – East London

On March 7th, 2019, to coincide with International Women’s Day North East London NHS Foundation Trust and One Place East have planned a conference facilitating a conversation about women and girls’ mental health with a focus on Trauma and Trauma informed care.

Places still available!

Date: Thursday 7 March

Time: 10.00 – 16.00

Venue: Royal Free Hospital, Lecture Theatre 2, Pond St, Hampstead, London, NW3 2QG

The objective of the day is to come together as a collective to raise awareness of issues affecting women and girls. (This is a totally inclusive event, so to male supporters and survivors please do come along to participate in the dialogue).

This is a social Trialogue event (please see the Eventbrite page for further details) to raise a different kind of awareness about women’s experiences that we hope will lead to a different kind of action.

Please see the venue and booking details here.

There are some free places available to those who can evidence that they are on a low income (on a first come first serve basis). Please contact  charmaine.harris1@nhs.net to book such tickets.

Women’s history month (01 to 31 March)

Discovering women’s history

Celebrating women’s achievements

Empowering women today

Please visit the dedicated websites, in the UK and in the US

Alternative Arts in East London celebrates Women’s History Month

Please also visit WinVisible, the website for women with visible and invisible disabilities, and WISH, a voice for women in mental health

Psychiatry: an abuse of human rights?

F.E.E.L. – Friends of East End Loonies are hosting an event about the recent Mental Health Act review presented in December 2018 and its disregards to the United Nations’ recommendations on the CRPD (Convention on the Rights of Persons with Disabilities)

Date: 22 March

Time: 07pm – 09pm

Venue: Kingsley Hall, 1 Powis Road, London E3 3HJ


  • Dorothy Gould, who led NSUN’s work on the Mental Health Act review. You can read NSUN’s breakdown of the MHA Review recommendations here.
  • Akiko Hart, from the English Hearing Voices Network, which proposed an alternative review
  • Liz Brosnan, survivor researcher

Entrance is free but there will be a collection to cover the costs.

Co-produced community general advocacy course

This course will only go ahead if enough learners book to attend.

The organisers are hoping to get enough expressions of interest to run this course again, following the success of a first instalment, which was co-produced with the help of NSUN and others.

  • co-produced by the people for the people
  • everyone welcome
  • free of charge
  • location: Richmond, London

The date considered in early July (tbc).

Aims to support learners to:

  • understand what Independent Advocacy is
  • understand how to use the principles which underpin good practice in advocacy
  • gain knowledge of the different models of advocacy.

To express interest, please contact:

Survivors of abuse research published

The National Commission on Domestic and Sexual Violence and Multiple Disadvantage, established by Agenda and AVA (Against Violence and Abuse), has published its final report Breaking Down the Barriers, which finds that survivors of abuse are being failed by the system meant to help them – with devastating consequences for them and their families.

The report found that time and again the signs of abuse are not picked up by professionals, and too often women are bounced around or even turned away from services.

Mothers are particularly let down, with the fear of losing their children preventing them from accessing help.

Chaired by Baroness Hilary Armstrong, the Commission brings together experts from sectors including health, law and violence against women and girls, and is funded by Lloyds Bank Foundation.

It’s now or never – legal aid for inquests

It is time to level the playing field at inquests. Bereaved families must be granted automatic non means tested funding for legal representation following state related deaths.

INQUEST, bereaved families and lawyers, are calling for:

  • Automatic non means tested legal aid funding to families for specialist legal representation immediately following a state related death to cover preparation and representation at the inquest and other legal processes.
  • Funding equivalent to that enjoyed by state bodies/public authorities and corporate bodies represented.

To sign the petition and read the briefing, please click here

Public involvement in research officer (McPin)

Type: Fixed-term

Duration: 2 years

Location: London Southwark

Salary FTE: £27,500

Hours: Full time (37.5 hours per week) but part-time working will be considered.

The post holder will help to develop and deliver McPin’s biomedical research strategy including a number of projects using virtual reality. Part of the role includes developing new and creative ways to meaningfully embed public advisory work in mental health research studies, using different models of involvement and engagement.

For more information and how to apply please click here

Guidance on co-producing a research project

Co-producing a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge.

This guidance explains the key principles and features of co-producing a research project and suggests ways to realise the principles and key features.

Finally, the guidance outlines some of the key challenges that will need addressing, in further work, to aid those intending to take the co-producing research route.

To download the PDF, please click here

Co-production lead (Camden CCG)

Employer:Camden Clinical Commissioning Group
Location:Euston Tower, LONDON
Salary:£27,628 to £35,530 pa inc of HCA

As a member of the integrated mental health & learning disabilities team, the co-production lead will play a key role in engaging with service users and carers and enabling them to be active in the organisational direction of Camden CCG.

The post holder will also support service users and carers to be active in the design and commissioning of services.

This is a vital role in the integrated mental health and learning disabilities team, reporting to a strategic commissioner in the team.

For more information and to apply, please visit this page

Creative writing and arts in Derby

Derby based Borderline Arts run these two groups:

Creative writing

Date: Friday 08 March
Time: 2pm – 4pm
Venue: Borderline Arts, 119 Osmaston Rd, Derby, DE1 2GD

The group offers a chance for like-minded people to gather in a safe environment, socialise and have fun, whilst gaining knowledge, experience, and confidence in using creative writing as a tool for escapism, self-expression, and practical application.

Each session is about 2 hours long with a 10 minute break in between. These free sessions will include games, exercises, discussion, lecture, group work, clips, and written excerpts.

For more information please visit this page


Date: 29 March
Time: 2pm – 4pm
Venue: Borderline Arts,119 Osmaston Rd, Derby, DE1 2G

This is a free bi-monthly group for individuals with Borderline Personality Disorder (BPD) to come together and engage in creative activities, with a focus on exploring, expressing and celebrating the positive aspects of ourselves and our lives.

For more information please visit this page

Help research into effects of the Welfare Reform Act (2016)

Has the Welfare Reform and Work Act (2016) impacted you or your family?

The All Party Parliamentary Group for Health in All Policies has opened a follow up inquiry on the impact of  Welfare Reform and Work Act (2016) on Children and Disabled Adults and is calling for evidence.

For instance have you experienced the impact of issues such as:

  • Removing the work-related activity support component in Employment and Support Allowance
  • The reduction of the benefit cap (to £23,000 in London, £20,000 the rest of the UK)
  • The ‘freeze’ in the value of certain benefits for 4 years
  • Limiting support (from child tax credit or the child element of Universal Credit) to 2 children
  • Changes in conditionality for responsible carers under Universal Credit
  • Replacing current mortgage interest support to loans for mortgage interest payments
  • Reducing social rents by 1% pa over 4 years following the Act

You can submit evidence in two ways:

Please send your submissions by 08 March

More information about the inquiry is available in the ‘invitation for submissions’ document which is available to download (hosted by DPAC’s website)

Bury Involvement Group seeks trustee

BIG in Mental Health is a charity formed and led by people with lived experience of mental distress; we provide peer support groups for people seeking support for their mental health.

The charity is now looking to appoint a high calibre trustee to join their board and add the vital capacity and expertise needed to deliver on our mission to grow to be the leading peer service in the Northwest.

Trustees will need to demonstrate passionate enthusiasm for culture, a collegiate working style and a strong appreciation of the charity’s mission.

The charity is especially looking for experience in the following areas:

  • Legal Expertise
  • Marketing / Digital Marketing / PR / Communication Expertise
  • Property
  • Business Development
  • Finance
  • Fundraising
  • IT / Systems

The role: As a member of the board of trustees you will have the opportunity to make a real difference to people’s lives by helping overall governance, development and monitoring of their strategic goals, and supporting the team and volunteers in the delivery of their programme. You will take a leading role in working with management and board colleagues to implement our business plan.

Time Requirements: The Board meets for up to 3 hours, the first Wednesday of every month 1 – 3.30 pm. Board members will also be required to spend time replying to emails and reading required documents (i.e. draft policies) in-between meetings. There may also be occasions when the Board Member may be asked to be available as a sounding board for management.

Duration of the role: Board terms are 3 years, with a potential for a second three year term.

If you like the prospect of a challenge and can bring fresh excitement and passion to the future vision of the charity, please e-mail your CV and supporting statement in a word format to Frances Halligan, Chair of the Board of Trustees at: franceshalligan@buryinvolvementgroup.org

For more information, or a confidential discussion, please call Frances Halligan on 07743522456.

Deadline for applications: 11 March

Interview dates: 22 March / 29 March


Sacred Space Weekend Retreat for Mental Health Workers with Lived Experience

Breathing Space in the Norfolk Broads specifically for Mental Health Workers with Lived Experience.

Are you a Mental Health Professional with Lived Experience of mental distress?

Do you feel alone in navigating the challenges of your position?
Would you like some ‘time out’ to focus on YOU?

Join Katie and an intimate group of fellow ‘Experiencers’ to share in a safely held space together.

This retreat will offer sharing circles, resources, relaxation and replenishment in the lovely natural surroundings at Breathing Space in Norfolk.  “Time spent connecting is time well spent.”

Dates: Friday 14th to Sunday 16st June 2019

Prices: Limited spaces; Shared Room: £249, Single Room £299, Fully inclusive of all meals

Email Katie at: mendthegap@hotmail.com

Find out more about our outstanding retreat venue in the beautiful Norfolk Broads here.

Call for information on intersectional stigma in mental health

Many HEAR members work with clients with mental health support needs. User and community led projects can help overcome the intersectional discrimination and stigma that disproportionately impacts on some Londoners’ mental wellbeing.

Right to Thrive and Thrive LDN are Mayor of London, NHS, London Councils supported projects to “help better understand how discrimination… affects a person’s mental health and well-being”.

HEAR members were concerned that Thrive LDN’s methods of delivery (largely online) excluded and stigmatised those it sought to represent.To begin to address these concerns Thrive LDN has commissioned HEAR to produce supplementary research based on our members’ expertise.

The paper will be presented at the London Health Board, chaired by Mayor Sadiq Khan.

HEAR are looking for research, reports, case studies, quotes, data from you on the frontline, that are:

-examples of intersectional discrimination, exclusion and stigma impacting on mental wellbeing

-examples of projects that improve mental health and well-being in intersectional communities in London

-examples of structural discrimination excluding intersectional people from accessing services and opportunities to influence policy and commissioning (which impact on public health planning, preventative health care and early intervention)

-practical recommendations that once adopted will enable Thrive LDN to work more closely together with equalities VCS and user-led mental health organisations, including HEAR members, to improve mental wellbeing of intersectional communities

You will be fully referenced in the research and your papers (if appropriate) will be added to www.HEARequality.org.uk/equalities-and-human-rights-resources/

Please email Mhairi with research, reports, quotes or data for consideration and inclusion, or with any questions about “Expert by experience Londoners Said” (working title) by 14 March 2019.


In the news

Activists have told a UN committee how the UK government is failing to address the significant barriers and human rights violations faced by disabled women in accessing social security, justice, jobs and health services.

Department of Work and Pensions (DWP) staff to go on strike over Universal Credit

Meet my patients who’ve been left out of the mental health conversation, is part of the ‘Blood, sweat and tears’ features in the Guardian where healthcare professionals’ accounts of moments in their career that have been joyous, life-changing, difficult or just plain awful are published. Read their guidelines and get in touch by emailing sarah.johnson@theguardian.com if you have a submission.

The campaigning group Big Brother Watch (BBW) is investigating the use of commercial software to decide whether you are a fraud risk when you make a claim for universal credit (UC).

The Independent Case Examiner (ICE) has ordered the DWP to pay £10,000 in compensation to the family of a claimant who committed suicide after her ESA was wrongly stopped.

The proportion of Department for Work and Pensions (DWP) staff who say they have been victims of disability discrimination at work in the previous 12 months has risen by about 50 per cent in just four years, Civil Service figures have revealed

The government wants to increase the number of people who use personal health budgets (PHBs) to choose their own health and social care support from 40,000 to as many as 200,000 over the next five years.

Dates for your calendar

04 to 16 March in London (Battersea): Festival of Rest and Resistance – For more information, please visit this page

14 March internationally: Social Prescribing Day – To find out more about social prescribing and how to get involved, go to the SP website here.

15 March in London: Mental Capacity Action Day – Royal College of Nursing, 20 Cavendish Square, London, W1G 0RN.
If you’d like to attend, please get in touch with Maya Sooben, Mental Capacity Policy Department, Ministry of Justice. Tel – 0203 334 3127, Email –NMCF1@justice.gov.uk

21 March in London: Shaping Our Lives AGM – Voluntary Action Islington, 200a Pentonville Road, London, N1 JP. If you to attend please contact becki@shapingourlives.org.uk tel no.07956 424511

22 March in London: Rebalancing Power in Global Mental Health symposium – for more information please click here

01 April in London: Compassionate Mental Health event – Safe Spaces for Suffering & JoyBook now book now using this  Registration Form. Attendance costs range from £65 to £12. There are bursary places for people with personal experience. Please email ask@compassionatementalhealth.co.uk

03 April in Oxford: Relating to Voices Seminar (Free to attend) – For more information, such as speakers, and to book your place, please click here.

03 April in London: Delivery of the Long Term Plan event –

Charity sector tickets £140.00 + £28.00 VAT More information here

03 May in York: ‘A disorder for Everyone!‘ – book your place please click here

12 May internationally: Emerging Proud Day – Click here for more information

01 to 05 July in England: National Co-production Week – For more information please click here

GOV.UK news

Modernising the Mental Health Act: final report from the Independent Review

The final report sets out recommendations covering 4 principles that the review believes should underpin the reformed Act:

  • choice and autonomy – ensuring service users’ views and choices are respected
  • least restriction – ensuring the Act’s powers are used in the least restrictive way
  • therapeutic benefit – ensuring patients are supported to get better, so they can be discharged from the Act
  • people as individuals – ensuring patients are viewed and treated as rounded individuals

The report is avaialble in full format, easy-read, and as a summary on this page, which also offers key themes and supporting documents.

The DWP Office for Disability Issues is seeking people to join the new Regional Stakeholder Network

They are looking for Chairs and Members for 9 regional groups across England. Applications should be completed by 29th March 2019.

The Regional Stakeholder Network will bring the views of disabled people, local disability organisations, and organisations that represent disabled people closer to government. It will create face to face forums and provide a channel for people to share their views about policies and services that affect them.

The recruiters are seeking people that want to make a difference, either as a Chair to lead and drive the efforts of their group forward, or a Member to share their views and experiences to help government make improvements.

For more information and how to apply, please click here.

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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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