National Survivor User Network
27 - 29 Vauxhall Grove
Vauxhall
London SW8 1SY

Phone: 0207 820 8982
Email: info@nsun.org.uk

Latest News

Mental health survivor network celebrates independence

NSUN, the National Survivor User Network, is now a fully independent, registered charity.

NSUN was launched in February 2007 with five years grant funding from Comic Relief and the Tudor Trust. Its aim is to support the development of service user/survivor led organisations and promote service user involvement in mental health service delivery and development.

However it has now completed the formal process to become a registered charitable company.

‘We are delighted that we are now a fully independent organisation. Together has given us invaluable practical support but it has been important to us to work towards full autonomy in our financial management as well as policy-making,’ said Tina Coldham, NSUN chair. ‘We are now looking forward to developing the many projects we have initiated in our first three years.’

It has established regional networks in the South East and North West and is seeking to set up similar networks in the other regions across England.

National projects currently in process include:

The Dancing to Our Own Tunes research and development project to explore models of partnership working between black and other mental health service user groups
A national survey of user involvement within forensic mental health settings, to be published shortly
A national peer support and development group for people working in service user involvement roles.

It is also leading a short-term project to develop service user involvement within the Department of Health’s National Mental Health Development Unit.

NSUN recently became a member of the Department of Health’s National Strategic Partnership Forum that aims to improve liaison between the voluntary and statutory health and social care sectors.

For its first three years, it has been hosted by the mental health charity Together: Working for Well-being.

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Shaping the Future of Care Green Paper and disability benefits

There is great concern that the Shaping the Future of Care Green Paper published by the DWP and the Department of Health on 14th July threatens the future of Attendance Allowance and Disability Living Allowance.

Benefits and Work (http://www.benefitsandwork.co.uk/home) refer to a report by the Institute for Social and Economic Research November 2008 that warned that taking DLA and AA from claimants and making it part of a ‘personal budget’ administered by social services will leave millions of people worse off and with less independence.

The green paper refers to cutting ‘disability benefits, for example Attendance Allowance’ but although Disability Living Allowance isn’t specifically mentioned many fear this will also be under threat.

The National Survivor User Network is contacting the Department of Health and Department of Work and Pensions to obtain clarity on the intention of the paper and future of disability benefits. We have provided a list of contacts for further information on the Green Paper, discussions and campaigns below. Currently we do not have the facility for a discussion board on the NSUN website as this is under development.

If you want to find out more about this issue, gather up to date information or view and/or join discussions please see some of the links below.

Department of Health

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_102338 (info)
http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_102339 (live consultation link)

DirectGov/Care and Support

http://careandsupport.direct.gov.uk/greenpaper/ (feedback & comments)
Respond to the green paper by taking part in the consultation process.
Contact form: http://careandsupport.direct.gov.uk/contact/
Email: careandsupport@dh.gsi.gov.uk
Write: Care and Support Team, Room 149, Richmond House, 79 Whitehall , London SW1A 2NS
http://www.facebook.com/pages/Care-and-Support/41838753841 (Facebook)

Benefits and Work

http://www.benefitsandwork.co.uk/disability-living-allowance-(dla)/dla-aa-cuts/dla-threat-faq (info & No More Benefits Cuts campaign)
http://www.benefitsandwork.co.uk/news/latest-news/1097-stop-press-charities-left-reeling-by-your-response

Disability Law Service

http://www.dls.org.uk/Advice/WelfareBenefits.html (info)

Equality and Diversity Forum

http://www.edf.org.uk/blog/?p=3827

RNIB

http://www.rnib.org.uk/xpedio/groups/public/documents/publicwebsite/public_dlafeb2009.hcsp (info & campaign)

• Download a draft campaign letter to send to your MP (Word) http://www.rnib.org.uk/xpedio/groups/public/documents/publicwebsite/public_dlamp2009.doc
• Download a draft campaign letter for sighted campaign supporters and sent to your MP
• Download a draft letter to sent to your local newspaper
• Find out if your MP has sign the EDM
• Find out who your MP is – visit the Parliament website
• Send your MP a fax – via FaxYourMP.com

Rethink

http://www.rethink.org/how_we_can_help/news_and_media/press_releases/adult_green_paper_on.html (info & feedback)

Action For Blind People

http://www.actionforblindpeople.org.uk/news/dla-campaign-we-need-your-help,83,SNS.html (info & campaign)

Equality 2025

http://www.officefordisability.gov.uk/equality2025/default.asp (info)

Survivor History Group

A debate on disability living allowance is currently active on the Survivor History Group site http://studymore.org.uk/. (discussion) Anyone who wants to take part in the debate (or just listen to it) can.
To join the forum go to: http://groups.google.com/group/survivor-history/

Department for work and pensions

http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DisabilityLivingAllowance/index.htm (info)
http://www.dwp.gov.uk/about-dwp/public-bodies/dwp-sponsored-public-bodies/disability-living-allowance-advisory/
Email contact: ministers@dwp.gsi.gov.uk / enquiries@dwp.gsi.gov.uk (feedback)

BBC message boards

http://www.bbc.co.uk/ouch/messageboards/F2322273?thread=6842651 (discussion)

MIND

http://www.mind.org.uk/campaigns (info)

MIND DLA RESPONSE

We share your view that the DLA is an important benefit for people with mental health problems. Mind responded to the social care pre-green paper consultation in November 2008, and recommended very strongly to Government that the Disability Living Allowance and Attendance Allowance must be retained.

Our recommendation was based on consultation with our networks. Over three-quarters (78 per cent) of respondents disagreed with the proposal to scrap DLA, and only 13 per cent agreed. 66 per cent of respondents had received DLA or AA in the last two years, and felt that DLA provided financial support for the extra costs of living with a disability, which are distinct from care costs. In focus groups and individual correspondence with service users, the proposal to pool DLA was unanimously rejected, often vehemently.

In the social care green paper, Shaping the Future of Care Together, the Government has not proposed to scrap DLA, although it is asking people for their views on whether they should pool Attendance Allowance with social care money.
Mind will respond to the green paper in the Autumn, along with other disability charities, and we will be consulting with our networks of people with experience of mental distress who will inform our response.

Mind will be lobbying the Government to make sure a new National Care Service takes account of the needs of people with experience of mental distress. But you can also have your say directly, by getting involved in the Government's national 'Big Care Debate'. There will be a number of events taking place around the country, or you can take part online, on Facebook, or on Twitter.

If you would like to get involved in Mind's response to the consultation and be kept up to date with the work Mind is doing around this issue please sign up to our campaigning network, Mind in Action, by sending your postal address to action@mind.org.uk. You will also receive e-bulletins with calls to action and ways to support Mind's work. You can also become a member of Mind Link, our network of people with direct experience of mental distress, by emailing mindlink@mind.org.uk. More information about the campaign will be posted on our website shortly: www.mind.org.uk

A response from Mind on the Reform of the care and support system (Dec 2008) can be obtained from a.whitelock@mind.org.uk

Working with users and carers

The National Mental Health Development Unit (NMHDU) aims to involve users and carers in all its programme areas.

To help ensure that involvement is as effective and far-reaching as possible, the NMHDU has recently awarded a contract (following a tender process) to a consortium of user and carer organisations hosted through the National Survivor User Network (NSUN), to assess and promote involvement in all aspects of its work programmes.

The consortium, led by the National Survivor User Network, includes the Afiya Trust, Attend, Equalities National Council, Together, Mental Health Foundation and the Social Perspectives Network (SPN).

An early action is to undertake brief baseline assessments of the strengths, gaps and development potential for user and carer involvement across each of our programme areas in order to for the consortia to come to the NMHDU leadership team with recommendations to further strengthen this aspect of our work.

Further developments on this work will be posted here.

WHO European Project

The World Health Organisation European Project on service user and carer empowerment are collecting examples of good practice across the European region.
We would like to include UK examples on the list.
Please complete form and return to NSUN

For more information about the World Health Organisation (WHO) visit http://www.who.int/en/