14 Jul

National Survivor User Network (NSUN) Bulletin – 14 July 2020

Welcome to the Tuesday 14th July 2020 edition of our weekly ebulletin – full of news, views, events and involvement opportunities.
Help and support
If at any time you need immediate support you can find out where to go, who to call, where to get information from here

Bulletin items
If you would like to send us an event, involvement opportunity, blog article or anything else to share with the wider network in the bulletin, please email us at info@nsun.org.uk.
You can view our previous NSUN weekly bulletins and subscribe to get them sent directly to your mailbox here.
This bulletin is FREE. You can join as a member here – it’s free for individuals and user-led groups. If you would like to make a donation to help support the continuation of this work you can do so here.
Please note: Sharing is not endorsing
Sometimes, we may feature items that you (and we) may not necessarily agree with but we feel it’s important to make our members aware of what is happening out there.

Our work
A great way to have a look at what’s been happening over the last year is to go to our News pageand visit the pages below.
Covid-19 links
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NSUN is a community of people and groups who come together to support each other.  We come together in many ways: physically, digitally through social media or through sharing information.
During these uncertain times, we will try and share with you what we can that is useful. In particular, we will think of ways of being together, when we can’t physically be together. And finally, we will continue our campaigning role, ensuring that policy and legislative changes are scrutinised and are rights based. 
Read more here:
NSUN Covid-19 fund *APPLICATIONS NOW CLOSED* including an update on the Fund so far 
Articles, blogs, vlogs and more
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We are always looking to feature members’ blogs and articles so please email us at info@nsun.org.uk if you would like to share yours.
in Matters of Engagement
by Outdoor Prescription
a TedX talk by NSUN member and survivor Lorna Collins
In Disability News Service 
By @lucywriter in Mad Covid

NSUN AGM 2019 report available
held in York
Article ImageThe full NSUN AGM 2019 York report is now available to download here.
As well as the details of our statutory business, the report features:
  • the transcript of an empassioned speech by Anne Beales, NSUN’s co-founder, which brought many members to tears;
  • notes on guest speakers including Alison Faulkner, Mark Brown, and Dominic Makuvachuma
  • links to all the videos of the ever popular soapboxes
Please take a look! 
Watch this space for info on the NSUN AGM 2020 soon…

DHSC Covid-19 VCSE partner update
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As a VCSE (Voluntary Community and Social Enterprise) partner of the Dept. of Health and Social Care’s (DHSC) Health and Wellbeing Alliance (HWA), NSUN now attends a fortnightly webinar where we are given updates on Covid-19. 
Covid-19 Health Inequalities Task and Finish Group
Meetings are continuing with HWA members being linked in to the Task & Finish group, its priorities and subsequent actions. There were strong concerns voiced this week about outreach and accessibility – to make sure that people who have been ‘abandoned’ and ‘forgotten’ are reached and looked after.
NHS Volunteer Responder scheme
If you or someone you know requires help with things like shopping, collection of prescriptions and the ‘check in and chat’ facility for those feeling lonely, you can now call the scheme directly on 0808 196 3646 (8am to 8pm). Currently you can’t self-refer online but this may change. For those who need help with transport e.g. to hospital appointments, you still have to be referred by the NHS, your local authority or via a local VCSE organisation. 
Please see the RVS website for more info and eligibility criteria. This list has been recently updated to confirm that if you are “vulnerable due to a mental health condition” you can access this service. 
Food for vulnerable people
Further conversations are taking place with Defra about access to priority supermarket deliveries (which are still oversubscribed) and a number of other commercial food box schemes they have collated in this guide.
We will update you on these items when we receive more news. In the meantime, if you have any questions you would like us to put to DHSC, please email us at info@nsun.org.uk

Food banks – find your local one and donate/help out
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Food banks are playing a very important part in ensuring people have enough food to eat in these challenging times.
If you are either in need of help yourself or would like to find out how you can help, find and contact your local food bank here:
Ways in which you can help include:
  • donate money
  • donate food
  • volunteer
  • become a business partner
Contact your local food bank to find out the best way you can help.

Hardship Fund for the Mentally ill during COVID-19
on gofundme
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“We are Jo Edge and Bethan Edwards, both survivors of mental illness and the psychiatric system. Jo is a doctor of medieval history, currently working at the John Rylands Library at the University of Manchester, beginning a stint as Women’s Rep on the National Executive Committee of the University and College Union in May 2020. Bethan is a Research OT employed by the NHS, and is also undertaking her PhD . She is professionally registered with the HCPC. Both Jo and Bethan are Welsh.
Money will only go to those who need it: folks who do not have access to other available funds from employers or through the government.
To apply for funds, please fill in this short online survey (also featured on the page below): https://www.surveymonkey.co.uk/r/73YNTCZ
To find out more, please click here.
You can read more about #MadCovidDiaries here or get in touch by email: madcovid@gmail.com.”

£585,000 of emergency funding for LGBTQ+ organisations and groups!
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“​LGBTQ+ organisations and groups across the UK will soon be able to apply for grants of up to £15,000 to support their vital role in supporting LGBTQ+ communities through the coronavirus pandemic and beyond.
METRO Charity in partnership with NAZ, Equality Network, The Rainbow Project, Umbrella Cymru, Yorkshire MESMAC and Birmingham LGBT, will be cascading the £585,000 fund from Comic Relief, raised from ‘The Big Night In’.

The partners will be convening grants panels in each nation – Scotland, Northern Ireland, Wales and England to ensure the maximum reach to grassroots community-led LGBTQ+ organisations across the UK. Organisations and groups with income under £100,000 will be able to apply for over 100 grants ranging from £500 to £15,000.

Register your interest in applying for a grant here” 
Find out more here

Addiction and Recovery Covid-19 Response Fund launched
Collective Voice
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“Collective Voice is delighted to launch the Addiction and Recovery Covid-19 Response Fund.
Voluntary, Community and Social Enterprise (VCSE) organisations have been at the forefront of supporting people during the COVID-19 crisis. The Response Fund will support additional or adapted drug and/or alcohol support necessitated by the crisis – for service users or family members already supported, or for those not yet accessing drug/alcohol treatment.
The government has made available £750m to support VCSE organisations during the COVID-19 crisis. The Addiction and Recovery Response Fund has £322,035 available and contains funds drawn from this package (held by the Department for Digital, Culture, Media and Sport) and supplemented by the Department of Health and Social Care.
Key dates
The fund was launched, Wednesday 8 July 2020.
The deadline for applications is 11:59pm on Wednesday 22 July 2020.
Successful applicants will be notified by Monday 10 August 2020.
Funds must be spent by 31 October 2020 but can be used to fund work dating back to 1 April 2020. “
Find out more and how to apply here

Black Mental Health LIVE event
A live virtual event for the Afro-Caribbean community
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“ADIRA, Sheffield Health and Social Care Trust & Flourish have worked together to put on this event to look at ways to engage with the BAME community to build better relationships- break down barriers, dispel any myths about mental health services and build positive relationships with this community.
We are hopeful that in doing this it will support people to come forward for help at an earlier point with their mental health problems so that they are able to enter into preventable treatments rather than at a point where they are very unwell and require for example hospital inpatient care.
We want to raise awareness of our mental health services, what’s available and how to access them.
We also want to learn more from the community about what they want from services and how we can better work together to provide the care and support that’s needed.”
When: Thursday 23rd July
Time: 7.15pm
Click here to find out more about this event and to watch LIVE.

Longer term impacts of Covid19 – seeking Disabled people for interviews
Shaping Our Lives
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“Shaping Our Lives has been awarded a grant from the National Lottery Community Fund Covid19 programme.
There will be two short surveys coming soon which we hope Disabled people will complete. We are also looking for Disabled people who would be interested in doing remote interviews. If you would be interested please contact Becki by email at becki@shapingourlives.org.uk or by mobile phone on 07956 424511.
The research will:
  • Investigate the longer term impacts of Covid19 emergency measures on Disabled people
  • Research the experiences of Deaf and Disabled People’s Organisations and other user-led groups during lock-down and beyond
  • Look at how Patient Participation Groups have been involved and impacted.
We hope to find out:
  • What Disabled people need to regain their confidence and independent living skills
  • Understand how remote meeting technology can increase and inhibit Disabled people’s ability to take part and get their voice heard
  • Find out if Deaf and Disabled people’s organisations and other user-led groups have been successful in getting funding and their capacity to offer services
  • Ask Patient Participation groups about their involvement during the pandemic and after.
Shaping Our Lives will be publishing three reports in November 2020 that will inform policy makers about the impacts and how to support Deaf and Disabled people’s Organisations and user-led groups in the future.”

National Data Guardian launches public consultation about the Caldicott Principles and Caldicott Guardians
Article Image“We want to hear views on revisions to the seven existing Caldicott Principles, a proposed eighth principle, and the role of Caldicott Guardians.
The Caldicott Principles
The Caldicott Principles were developed in 1997 as a result of a review chaired by Dame Fiona of how patient information was handled across the NHS. They have since become widely used across health and social care to help ensure that confidential information is protected and used when appropriate.
The NDG now proposes to add an eighth Caldicott Principle to the seven in use to emphasise the importance of there being no surprises for patients and service users with regard to how their confidential health and care data is used.
The consultation will be open for an extended period of two months until Thursday 3 September to allow organisations and individuals supporting the fight against COVID-19 more time to respond. “
Read more and find out how to take part in the consultation here

LISTEN: Thoughts on the future of community-informed approaches to mental health
The Common Ground podcast
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“In 2016, it was estimated that 75% of people in the UK may not get the help that they need for mental health problems and that staggeringly, people who identified as Asian/Asian British were 14% less likely than average to be in contact with mental health services. 
My guest this week Shuranjeet Singh knows this all too well. As a result of his own experiences of mental ill-health during his University years, Shuranjeet was compelled to found the not-for-profit Taraki, a word meaning to progress to an improved or more developed state of being, in 2017, which specifically caters and advocates for culturally appropriate mental health support to those within the Punjabi community.
Join us as we discuss everything from localised health solutions to the role of faith and faith institutions in breaking the taboo around mental wellbeing.”
Taraki is one of NSUN’s Covid-19 Fund grantees. Click here to listen to the podcast with Shuranjeet.

Greater Manchester Disabled People’s Panel (GMDPP) survey report now out
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“The Greater Manchester Disabled People’s Panel (GMDPP) created a survey to find out how disabled people in Greater Manchester were managing during the Covid 19 pandemic. The Panel is unique, no other city region has managed to establish one, it is made up of 14 disabled people’s organisations. We already knew a lot of the issues, but to help us to influence improvement of how services were responding we needed a wide evidence base the survey could provide. 936 people responded, making it one of the largest surveys by and for disabled people of the Pandemic. The Full, Summary, and Presentation report are attached.

Some key findings were:

  • 90% of respondents said that the pandemic has had a negative impact on their mental health.
  • 80% of respondents were not included in the official shielded group, yet 57% of those had support needs. For example many could not get online supermarket food delivery despite needing to shield.
  • 56% of respondents had experienced some difficulty sourcing Personal Protective Equipment (PPE).
  • 62% of respondents have experienced one or more health visit being stopped due to Covid-19.
  • Accessibility of the hubs was a problem, 46% found them inaccessible with deaf people being the worst excluded.
  • Disabled people are less satisfied with their care plans since the outbreak of Covid-19. Prior to the outbreak, 23% were dissatisfied, this dissatisfaction increased to 43% during the Pandemic.
  • 37% said that their housing was not accessible or only partially accessible.
  • 83% of disabled people were worried about how they would be treated in hospital because of attitudes to disability.
  • 47% found government advice unclear and many commented that the lack of a British Sign Language interpreter or conflicting language made official announcements inaccessible.
  • Digital exclusion was a problem, especially as a lot of the emergency response used digital platforms.
  • A third of disabled people believe that their local authority is not doing anything significant whilst 76% of disabled people are dissatisfied with the help provided by the government.
We have made 13 key recommendations for improving the problems we identified and are pleased that GM Mayor Andy Burnham and other regional leaders have shown a willingness to listen and engage with our issues. There is a lot of work to do to remove disabling barriers that have gotten worse over the last 10 years and were made worse again in the Pandemic. However we as disabled people and our organisations and communities will not stop until our rights to a fully inclusive society are realised.”
Go to the GMDPP website here to download the report.

SURVEY: Share your experiences of diagnosis and treatment for Depersonalisation-Derealisation
Unreal & UCL
Article Image“The Department of Psychiatry at University College London in collaboration with Unreal is asking individuals with symptoms of Depersonalisation-Derealisation Disorder to take part in a survey.
There are many anecdotal reports of difficulties in getting a diagnosis and accessing treatment, but there is no published research to evaluate these experiences. This survey will be valuable in helping us understanding the specific barriers that people with Depersonalisation-Derealisation Disorder might have met. We hope you can share your experience so that we can help improve this process in the future.
This survey is open to UK residents and will close on Saturday 8th August
If you are interested in taking part, please click here.”
Go to this survey page on Unreal’s website here

Building Liberatory Public Health Systems
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About this Event 
“RE:CREATE Psychiatry have commissioned Healing Justice London to deliver a three-part online workshop series for people of colour who use mental health services, work in mental health services, or both, exploring how we can build liberatory public health systems.
Using a combination of creative discussion and embodied practice, these sessions will offer a safe space to share stories and experiences of oppression, trauma and mental health difficulties, and explore pathways to healing.
Throughout the programme we’ll explore the intersections between racism, mental and physical health and collectively reimagine the public health system.
Once registered you’ll receive an access link to join the sessions, which will be facilitated over Zoom.”
Find out more and register for these free workshops here

Challenge and Change – NEW FUND for young activists
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“Challenge and Change is a fund dedicated to supporting the limitless energy of young people affected by injustices who are working tirelessly across England to create positive change. We see you. We know that you are creators of change and active citizens for the public good. We also recognise that you need investment and support to take forward your ambitions for a positive future.
If you’re 18-25 years old, working at the hard edge of injustice and have radical ideas, dreams, visions, and imaginations for a just and fair world for all, we want to invest in you and your work and offer a package of mentoring and network support to help take your work to the next level.
Applications open now until 11.59pm on 27th July 2020
This fund was co-created by a group of partners: Young Advisers – Daze Aghaji, Chloe Deakin, Jovan Nepaul – the Blagrave Trust and the Centre for Knowledge Equity.”
Find out more here

ENIL Launches Independent Living Survey
European Network on Independent Living
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“The European Network on Independent Living is launching its first Independent Living Survey, with the aim of getting a better picture of access to Independent Living in Europe. Responses will be analysed and published in December 2020.
The Independent Living Survey should be completed by disabled people, DPOs or NGOs familiar with access to Independent Living and/or provision of Personal Assistance (PA), ideally by or in close consultation with PA users.
Please complete the survey no later than July 15th.
Find out more and how to complete the survey here

WEBINAR: Getting Race Equality Rights Right
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Hari Sewell
“Seminar for leaders who are seeking ideas and guidance on advancing race equality in their organisations.” 
When: Wed 22 July 2020, 17:00 British Summer Time, via Zoom.
Book here

Jobs & Recruitment
Survivor/Lived Experience Involvement Consultant
 The Violence, Abuse and Mental Health Network (VAMHN) are currently recruiting for a Survivor/Lived Experience Involvement Consultant. The post holder will support the ongoing development of VAMHN’s lived experience involvement strategy and activities, including through the development and strengthening of links with local and national survivor/service user led organisations, and helping to coordinate and facilitate the VAMHN Lived Experience Advisory Group. For full details including job description, payment information and start dates please click here.
The deadline for applications is Friday 7th August 2020. 
HEAR is seeking new trustees to help us move forward as we grow as a network and an organisation: a new Chair of Trustees, a Treasurer, and other trustees with the skills and interests to support our work going forward.
Please initially contact the Network Coordinator: christine@hearequality.org.uk
for more information. Find out more about HEAR here
Underground Lights
Article ImageThe Underground Lights Board of Trustees meet at least four times a year and are responsible for the successful and legal running of the charity We’re a passionate and committed team – and we’re looking for people to help guide us towards success.
Find out more here

There are currently no face-to-face events. Please see listings above for virtual meetings.

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