Author Archives: Shaping Our Lives

About Shaping Our Lives

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Moving Up Programme – Supported Work Experience

This programme, run by Muscular Dystrophy UK, is open to Londoners aged 16 – 30 with any disability.

Participants will first do a placement in the Muscular Dystrophy offices in Southwark with a department they have an interest in. These internal placements can run from 1 week to 6 months depending on the individual. Following this, participants may go on to an external placement with one of Muscular Dystrophy’s partners which include 20Ten advertising and the Home Office.

Travel expenses and lunch up to £5 a day are covered as well as the cost of any equipment that is required to make participants fully comfortable and able to achieve their potential. It is truly a very supported work experience.
For further information please visit

Inclusion London – Developing and funding advice services – 10th September

About the event from Inclusion London:

We know that DDPOs face challenges in developing new services and in finding stable long term funding sources to continue or scale up existing successful services.

We are providing a series of events this year to bring DDPOs together to explore challenges and solutions, enable more effective relationships with potential funders, and ensure that follow up support we offer to individual organisations is designed to meet your needs.

Before each event we will be sending out a survey to understand what challenges you face in developing and funding services. These will be used to design the events and follow up support we offer to individual organisations.

Developing and funding Advice Services:

Date: 10 September 2019
Time: 9.30-1.00
Venue: 336 Brixton Road, London SW9 7AA

This event is for DDPOs who are currently providing advice services, or have a new advice service they are currently seeking to develop or fund. It will be particularly useful for staff or trustees who are involved in designing, developing or finding funding for services.

N.B. People signing up for the workshop will be expected to complete a survey about your organisation’s challenges and support needs in developing and funding advice services.

The workshop will be facilitated by Alex Hendra who has been providing business and finance development support to DDPOs for the last 6 years and has 17 years experience in leadership and senior management roles in the charity sector.
Book your place for the Inclusion London Event 

Invitation to shape the design, progress and findings from an NIHR research project about social care – deadline 6th September

  • Would you like to help the government and local councils improve how they gather information about users’ and carers’ experience of social care services?
  • Are you a user of adult social care services or do you provide help and support someone who needs additional help because of their age or disability?
  • Would you be able to offer up to 4 days of your time between September 2019 and February 2020 to contribute to the research?

Please read Adult Social Care Survey Review – Invitation to join additional information and contact if you would like to know more.

Film case studies about shared decision making.

Lily Sharma from the NHS is making film case studies about shared decision making. She is looking for seldom heard patients, particularly members of the BME community, to talk to her about their experiences of shared decision making. Please contact Lily – or if you or any of your members would be willing to have a filmed discussion.

More information from the Shared Decision Making Team below:

“Shared decision making (SDM) is part of NHS Long Term Plan’s commitment to make personalised care business as usual across the health and care system. The SDM team at NHS England and Improvement are looking to understand what SDM means to lay people. Did clinicians encourage you to ask questions? Was your voice heard? Were you given treatment options (including benefits, risks and alternatives to manage your condition? Was doing nothing discussed as an option? How important do you think it is for people to feel empowered to have these types of conversations and what can the system do to facilitate them?

If you are happy to share your experience and your views, we want to hear them. We are particularly interested to hear from the seldom heard people, particularly members of the BME community. We would like to talk with you on film, with your permission, so that we can share your thoughts with other people. The SDM team will come to you to hear from you, at a time to suit yourself and support you through the filming process. Please contact the team at if you wish to share your views and experience of SDM.”

Bristol Reclaiming Independent Living (BRIL) – Launch Event

Bristol Reclaiming Independent Living are holding their launch event on Monday 16th September.

They want to hear from other Disabled people, social workers, families and other organisations about the barriers Disabled people face in living independently in Bristol.

Aims of Group:

  • To share people’s concerns about Independent Living
  • To keep up-to-date with local and national policies
  • To challenge the local authority on behalf of people
  • To have a voice in national consultations
  • To break down barriers between different groups
  • To be united in one policy of Independent Living
  • To support one another

Flyer with further information about BRIL and the launch event


NSUN Chief Executive Officer – National Survivor User Network, closing date 20th September

NSUN Chief Executive Officer

The National Survivor User Network (NSUN) is a membership network led by people with lived experience of mental distress,  bringing together over 600 local groups and 3,900 individual members to communicate, support each other, share experiences, give voice to their views and experiences in spaces of power and change things.

From their website:

We are at an exciting stage of change and development, having finished a period of deep reflection and review. After 10 years in post Sarah Yiannoullou is standing down as Managing Director. During her tenure, NSUN has grown and is now recognised as an independent, authentic collective for the voices of lived experience. Founded on the principles of solidarity, equality, integrity and diversity, we aim to reflect the ‘convention challenging ambitions’ of our members.

We are looking for someone with exceptional leadership qualities, ambition, inspiration and visionary drive to take the organisation forward. This needs to be someone who can translate our strategic vision into both high-quality practical and fundable programmes and effective advocacy work. They will need to demonstrate an ability to inspire and motivate a team of staff and associates and a 4500-strong membership.

For the right candidate, this post will be both challenging and enormously rewarding, with the potential to develop and shape an already well-respected organisation into an even stronger force.

Further info, Job Description and an application form the NSUN CEO role

Policy and Communications Co-ordinator – Friends, Families and Travellers, closing date 21st August

The Friends, Families and Travellers organisation are recruiting for an experienced Policy and Communications Co-ordinator. The position is a short term, intensive role running until the end of March 2020.

Located in Central Brighton, just five minutes’ walk from the sea.

Particularly interested in receiving applications from members of Gypsy, Roma and Traveller communities.

Small Charities Leader – Lloyds Bank Foundation, closing date 6th September

Lloyds Bank Foundation for England and Wales is searching for a passionate, dynamic and experienced small charity leader to help transform and strengthen small charities and the future of the sector through a 12-month secondment role.

Webinar to find out more being held on 28th August.

Further details for the Small Charities Leaders role

Professionals & Practice Programme Manager – Age UK, closing date 26th August

The Age UK Health Influencing team is offering an exciting opportunity for an experienced Programme Manager to join their team.

The main purpose of this innovative role is to plan, develop and lead projects aimed at influencing health and social care professionals to change and improve their practice and delivery of care to older people.

The team also develop projects that provide self-care information and advice, for example: Malnutrition task force, flu jabs, sex and intimacy.

This role could be interesting to someone with experience of NHS or social care or who has an interest in improving care.

Based in London.

Closing date 26th August.

Further details for the Age UK Professionals & Practice Programme Manager position


F.E.E.L. – August newsletter

Dear Friends,

We wish to send massive congratulations to the Deaf men that just finished completing the Two Deaf Foots John O’Groats to Lands End walk across Britain.

Mark Hodgson started his journey from John O’ Groats on June 5 and was later joined by Daniel Dorney. The aim of their challenge was to raise awareness about the “mental health crisis” faced by the deaf community, following thesad news of a number of deaf people that took their lives across the country lately. What set the alarm was the passing of Daniel Webster earlier this year, when took his life after being denied access to direct BSL services by his local CCG

Donations of this latest foundrise will go to SignHealth and Deaf4Deaf charities, which provide services for Deaf/BSL users also remotely, via video-chat, with the hope to reach as many Deaf people in need of talking therapies and support

Deaf suicide survivor Richard D France asserted how the services received within the Deaf unit at Springfield Hospital, in South London, made a whole difference in his care and health improvement. He talks about his experience in a documentary released recently

Once again healthy and clear communication seems to be essential while offering help and support, rather than pills and forced treatments.

Specialised Deaf units also provide a healthy ratio between patients to nursing staff on wards, something that it’s generally missing in general/mainstream wards, where nurses often work 12-14hrs shifts (if not doing a double shift covering for staff shortage doing TWO straight shifts), while overloaded with bureaucratic duties.

Most of the mainstream services, conferences and events are not accessible to the Deaf community, creating massive gaps to the information that reach them.

It must be stressed that not all deaf people use sign language and deafness in se is not necessarily the cause of mental illness in the individuals.

It is important to carry on these conversations and strengthening the arguments, as change is happening, even if at a slow pace.

Concluding the topic with the You Have to be deaf to understand the deaf poem, written in 1971 by Willard J. Madsen, professor of journalism at Gallaudet University.


As always we look forward to see many of you for our monthly F.E.E.L. meeting which is taking place on

Monday the 19th August at LARC 6:30-8:30pm.

Also stay tuned for the forthcoming Art and Protest – Exhibition at the Bethlem Gallery, curated by Dolly Sen, opening next month.

Our FEEL banner with the Loonies Proverb will be exhibited there possibly encouraging the sprouting of more seeds.

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Call for Solutions – Ideas and suggestions for a better welfare benefits system

The Commission on Social Security led by Experts by Experience are gathering ideas and suggestions for a better social security system.
The deadline for submissions has now been extended until the end of August




Survivors’ Poetry Live at the Poetry Cafe

Thu 8 August, 7:30-10.30pm. Arrive 7pm to sign up (1.50 floorspots / 2.50 conc/ 3.50).

The Poetry Cafe, 22 Betterton St, Covent Garden WC2H 9BX.

Guest artists Jeanetter Ju-Pierre. MC Dave Russell. Facebook: Survivor’s Poetry Gigs



1960s and 70s Underground Press, 
by UCL Institute of Advanced Studies

Tue, 13 August 12:30 – 14:15 pm, IAS Common Ground, South Wing, Wilkins Building, UCL, Gower Street, LONDON WC1E 6BT




‘Picnics are a Health Outcome’, a Mental Health Resistance Network pic-nic

Wed 14 August, Hyde Park

MHRN are challenging NHS England to remove the statement in their NHS long term plan that cites work as a health outcome for mental health treatments.

Everyone is welcome to join the pic-nic & performances in Hyde Park (flyers attached)



Spirituality & Recovery Peer Support Group

*Last Wednesday of the month 2pm – 4pm  (optional mindfulness: 1.30pm-2pm)
The Canvas Cafe 42 Hanbury St, London E1 5JL. Enquiries:

2nd Friday of the month 3pm – 4.30pm (optional mindfulness: 2.30pm-3pm)
St John’s Church, Broadway, Stratford, London E15 1NG Enquiries:




Wednesday 4th September, 2pm – 5pm, Mind in Camden, Barnes House 9-15 Camden Rd, NW1 9LQ
Please let us know if you will be attending, and encourage your group members to attend

It is a meeting for group members, and anyone interested, as well as facilitators.




11 September 2019 – 2 February 2020, TATE BRITAIN, Millbank, London SW1P 4RG

Art & Protest: What’s there to be mad about?

7th September – 8th November, Bethlem Gallery, Bethlem Royal Hospital, Monks Orchard Road, Beckenham, Kent, BR3 3BX

Open 10am – 5pm Wednesday – Friday. Including first and last Saturdays of the month.




‘Putting Power into Participation’ focus group

Friday 20th September, 11am to 3pm, Voluntary Action Islington, 200a Pentonville Road, London N1 9JP

Shaping Our Lives and the University of Essex are looking for people with lived experience of using services to take part in a focus group in London on Friday 20th September. They want to find out about how involvement and participation can lead to direct policy change. This workshop will explore ways in which service users might be enabled to directly challenge policy decisions that affect them. The emphasis will be on identifying processes in and around participative democracy.

Refreshments and a light lunch is provided. Travel and support: Reasonable travel and support costs will be funded. There is an involvement payment of £25 for those people who wish to accept it. Contact Becki Meakin on 07956 424511 or at


Engaging with Voices, by Balanced Minds, £10 – £25

Thu, 26 September, 10:00 – 16:00, Golders Green Friends Meeting House, 17 North Square, London NW11 7AD



I is for Insult: questioning “Borderline Personality Disorder”, With Rachel Rowan Olive

27th September 2019, 10.30 – 17.00, Cardboard Citizens, Cardboard Citizens, 77A Greenfield Road, Whitechapel, London E1 1EJ



Mental Health Crisis Summit

Sat, 28 September 10:00 – 17:00, Royal Free Campus, UCL Medical School, Rowland Hill St, Hampstead, London NW3 2PF





You can pre-order your copy of the new Drop The Disorder book
Find out about their upcoming events in different towns and cities around the UK




7th British Congress on Medicine and Spirituality, by BUSS – British Union of Spiritist Societies

9 + 10 November 10am-5:30pm, Rudolf Steiner House, 35 Park Road, W1 6XT London


The British Institute of Human Rights (BIHR) online tool

Released recently for people with mental health or mental capacity issues: It gives tips on how to identify whether an issue you have with your care or treatment is a human rights issue. It provides suggestions on how to use a human rights approach to overcome these challenges




Matthew Leahy death public inquiry



Callout for people in self-employed, zero hours or gig jobs. Share your experiences of being on Universal Credit

If you are in a self employed, zero hour or gig economy job and you are claiming Universal Credit, DPAC are interested to know your experiences of claiming UC while self employed. Is it working OK? Or not? Please email and share your experience.




Free Our People Now – Institutions are No Solution  fundraiser



Reparations For An Oppressive Psychiatric System




How can the Power Threat Meaning Framework be applied to experiences perceived to be transcendent/ transformative, or spiritual, and how could it be used to support this?

Fri, 17 January 2020, 10:00 – 17:00, Conway Hall, 25 Red Lion Square, London WC1R 4RL



F.E.E.L. – Friends of East End Loonies

FEEL meets the third Monday of each month 6.30 – 8.30 pm

LARC 62 Fieldgate Street, Whitechapel, London  E1 1ES