NSUN network for mental health is an independent, service-user-led charity that connects people with experience of mental health issues to give us a stronger voice in shaping policy and services.

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Share your experiences

This page offers a list of opportunities for you to share your lived experiences of mental ill health with researchers, survey designers, documentary makers and other people looking for real lived experiences to support their projects. If you are concerned about confidentiality, please do not hesitate to discuss setting up boundaries with the project leaders.

If you are interested in mental health conferences, certification training sessions or similar larger scale events, please visit this page.  If you are looking for jobs or volunteering opportunities, please take a look here.

Click on the bullet list item which interests you and you will be taken directly to a paragraph wich explains what the opportunity is about and provides you with contact details.

 

 

Bipolar case study - Leeds

Volition has received a request from NHS Leeds West Clinical Commissioning Group to help find  a case study to go with World Bipolar Day  taking place on 30 March.

The case study will need to be from Leeds and they will need to share with Volition how they have lived a successful life, even though they have bipolar disorder as the theme for this year is “More than a diagnosis”.

An example of what is being asked for a case study, here’s one that was done for Time to Talk Day (on 2 February)   when Volition asked Jonny Benjamin (mental health campaigner) to be their case study.

If you can help please contact natasha.noor@nhs.net at NHS Leeds West Clinical Commissioning Group or telephone: 0113 843 5470

 

CHAMPS survey for UK peer supporters

Checking Agreement on Mental Health Peer support (CHAMPS) study needs an hour of your time for this survey.

It is of great importance to know the views of mental health peer supporters so that future developments in the practice are based on this first hand experience.

The aim of the CHAMPS study is to check what most peer supporters believe to be important and helpful / unhelpful to them in carrying out the role. CHAMPS also aim to explore if there are relationships between experiences of providing peer support and the wellbeing of peer supporters.

To know more about the study and what's involved in the survey please visit this page

 

Have you ever been detained by police under Section 136 of the Mental Health Act?

In partnership with Mental Health Services the Metropolitan Police disability engagement and mental health team would like to examine people's experience of section 136 of the Mental Health Act with a view to improving services.

We would appreciate feedback from people who have been detained under section 136 of the Mental Health Act in order to ensure that we provide the best care possible for all service users. Questions are generic and therefore anonymous.

There are 23 questions in this survey https://londonvoice.org.uk/web/index.php/245551?lang=en

 

Qualitative study: patients and carers's experiences of creating and using online contents

  • Have you ever read online comments / posts by people sharing views and experiences of healthcare?
  • Have you posted or written online about your own experiences of healthcare?
  • Are you among people who have never used the web for this purpose? Do you have specific reasons? Would you consider using the web to discuss experiences of healthcare in the future?
  • Are you 18 or over?

Researcher Susan Kirkpatrick ( working in the Health Experiences Research Group in Oxford ) is hoping to interview a diverse maximum variation national sample of around 40-50 patients and carers who have used various methods and platforms to comment on their experiences of NHS services, or who have read other people’s comments.

If you'd like to know more about Susan's study and how to take part, please visit this page, which contains her contact details and a form to register.

 

Test digital products and get rewarded

Access2Digital are recruiting  people with mental health disabilities to test the accessibility of digital products and services. Testers always get paid for doing the testing. Testing2Digital have a wide range of testing opportunities in London and the UK.

So, how Access2Digital works?

 - Register your interest by phone, email or through the website: 07760 934 012 or 0208 133 1852 or contact@access2digital.com or www.access2digital.com
 - Become a tester Testing2Digital get in touch with potential testers and are asking a few questions. The goal of the testing is mostly to test the accessibility and usability of digital products or services. The testing can be done in a lab or from the comfort of the home.
 - Start Testing As soon as we find opportunities for our testers we get in touch with them and we are giving all the details about the testing (goal, date, time, venue,incentive...)
 - Complete testing The average testing time is 60 minutes
 - Get rewarded Testers get cash incentive or vouchers. Average between GBP50 and GBP80. It's tax free.

 

Call for participants: non suicidal self injury (nssi)

What helped and what hindered: A qualitative study into people’s experiences of interventions on their journey of ceasing non-suicidal self- Injury (NSSI).

The focus of this research is to gain in depth understanding of your experiences of what assisted you and hindered you in stopping non-suicidal self-injury (NSSI). You will be asked some questions about your experiences and perceptions in a confidential interview that will last one hour. The interview can be done either face to face, by telephone or Skype.

This research is important as it has the potential to provide critical information regarding the type of treatment, intervention, and support which helped you in stopping non-suicidal self-injury (NSSI); with the aim of informing and supporting others.

If you are 18 yrs old or above, and this is something that you would like to volunteer and contribute towards please contact Lorna Robinson (counselling psychology postgraduate student in the Department of Health and Social Sciences, University of the West of England,Bristol. Supervised by Dr. Zoe Thomas, zoe2.thomas@uwe.ac.uk) If you are interested, please email: Lorna2.Robinson@live.uwe.ac.uk

 

Creative competitions open for entries

Poems, artwork and photography are to be created from the sentence: I feel better when I am....It’s FREE to enter and is open to all UK residents of any age…

  • you can submit up to 2 pieces of artwork/photography
  • you can also submit up to 2 poems
  • focused around wellbeing and what makes you feel better – enjoy creating!
  • A choice of two competitions: Leicestershire / UK wide

You have until noon on 10 February 2017. To take part, please visit the Rethink Your Mind participation page

 

Mental Health Act survey

The survey is designed to gather your views on the principles of the Mental Health Act and how people’s rights are currently protected, where this is working well and what could be changed and improved.

If you have experience of the Mental Health Act, this is your chance to be heard. Whether you have experience of mental illness, are a family member, carer or loved one, or a mental health professional, we’d love to hear from you.

Legislation texts available online: MHA 1983 and amendment 2007

Take part in the survey here.

 

Service user mentored research: do you hear voices and self harm?

Do you hear voices and self-harm? Now or in the past? If yes do consider being part of this is important research by a trainee who is being mentored by a service user with experience of self-harm and hearing voices ~ shared on Facebook by NSUN member Sarah Connor (thank you)

Find out more here.

 

Help British Gas improve the way they work

In 2015, British Gas teamed up with Mind to understand how customers who struggle with their mental health could be better supported. This piece of work brought to life the views and experiences of British Gas customers and really highlighted that more can be domne to support customers. Here are some of the outcomes from that insight: You said - British Gas did…

  •     British Gas advisers need to understand more about mental health   -   New training is being planned including videos of customers talking about their mental health and why and how they need extra support
  •     British Gas need to have the facility for a third party or nominee to talk on a customer’s behalf if they are unwell   -    British Gas have reviewed our internal Power of Attorney process so our people better know how to make sure you can have a third party talk to us on your behalf.

Most importantly, British Gas were made aware that our interactions and processes could be even stronger if they talked to mental health peers to help change the way we work   -   British Gas has teamed up with Mind once again to delve further into some key issues and themes that previous work has highlighted.

You can help with this work by answering an online survey. Included is an opportunity to participate in focus groups which will lead to creating videos.

If you are selected to take part in a focus group you will be paid £50 and reasonable travel expenses will be reimbursed.

 

Help PROMISE with their 'no' audit: how often do staff say no to patients and how profound is the resulting distress?

Have you ever spent time on an acute ward? If yes, could you help with the PROMISE project

PROMISE (PROactive Management of Integrated Services and Environments) began at the Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) with aim of reducing the use of restraint. The project, which is co-led by a psychiatrist and an Expert by Experience, has expanded considerably since its inception in 2013 but the vision to eliminate the use of force in mental health services remains the same. To help with this work researchers would be very grateful if anyone who has been an inpatient could spend 5 minutes completing this survey.

The aim of the survey is to understand the most common reasons that staff say ‘No’ to patients, as this can cause unnecessary distress and lead to a situation escalating. This is turn may result in the use of force which is why we are keen to understand the reasons that staff say most frequently say ‘No’.

 

Work Capability Assessment (WCA) and Traumatic Brain Injury (TBI)

Rebecca Potts and is carrying out this project as part of a Clinical Psychology Doctorate based at Lancaster University.
 
Rebecca would like to invite you to take part in her research project, which involves interviewing you about your experience of the Work Capability Assessment.

The Work Capability Assessment is a checklist introduced by the government to assess whether somebody is able to work, and therefore whether they should receive disability benefits.

This study aims to gather the views of people with Traumatic Brain Injury (TBI) on what it is like to take part in a Work Capability Assessment, whether that is completing the ESA-50 form or going on to attend a face to face assessment.

  • Do you have a diagnosis of Traumatic Brain Injury (TBI)?
  • Are you aged between 16 and 65?
  • Have you needed to claim Employment and Support Allowance following your brain injury?
  • Have you taken part in a Work Capability Assessment (WCA)?

If you are interested in taking part, please get in touch. Rebecca would be happy to provide more information or answer any questions you might have.

07908 613788 r.potts1@lancaster.ac.uk

 

Bipolar research: which outcomes matter to you?

* Do you have a current diagnosis of bipolar?

* Are you a family member or carer of someone with a diagnosis of bipolar?

Would you like to take part in a project to help shape how mental health research is carried out? Would you like to help make sure that future research involving people with bipolar investigate the things that matter most to you? Have your say!

A research team is carrying out work to establish which outcomes are most important when carrying out research on bipolar. The research involves asking groups of people to vote online for the most important factors to consider when evaluating community mental health support for people with bipolar. Everyone taking part needs to vote twice so you must to be able to commit to taking part in two online surveys over a period of 3 months. Each round of voting will take up to one hour to complete. There will be a prize draw for £75 worth of shopping vouchers.

Interested? Please do get in touch to find out more by emailing the team at partners2@contact.bham.ac.uk

 

Have your say about going completely smoke free

Two NHS Foundation Trusts which deliver mental health services in the North East went fully smoke free on the 9th March 2016. As part of this process they are evaluating the impact of this on both staff and service users/carers.

Teesside University has been chosen to carry out this work, which will take place over the next 12 months. Following this, an evaluation report will be made available to tell people about the results.

North East together would like to hear from members; or any other service users or carers who would be willing to be involved and to share their views and opinions around the smoke free initiatives, whether those are positive or if you have any concerns about the implementation of fully smoke free sites.

Smoke free Focus Groups/Interviews: The focus group would take around 1-2 hours. The location of the event along with start and finish times will be confirmed once we know how many people wish to attend. One-to-one interviews can also be arranged.

Expenses: Travel costs will be reimbursed by the university or the Trust to participants on completion of the appropriate form.

To be involved you must have been either:

  • An inpatient after 9th March 2016
  • A carer for an inpatient who received treatment after 9th March 2016
  • Be aware of the Trusts’ new fully smoke free policy

All discussions would be confidential.

A ‘Participant Information Sheet’ containing further details will be sent to anyone who expresses an interest in participating.

If you would like to express your interest in being involved, please contact:

Email Susan Jones - Teesside University  or call 01642 342984 or 07864781636

 

Paid consultation on what BME service users think research priorities should be

Kindred Minds would like to inform you of a paid opportunity for BME service users to influence the mental health research agenda. 

Interested in ensuring mental health research reflects the life experiences and priorities of BME mental health service users?

The Institute of Psychiatry is consulting with BME service users from Southwark and neighbouring London boroughs, to ensure their views inform its future research work priorities. These priorities could also be the kinds of social issues that Kindred Minds has often highlighted, like benefits, racism, lack of appropriate services and support and so forth.

The 1 1/2 hour consultation will be at Cambridge House in Southwark at 11am on Friday 4 November.

PARTICIPANTS NEED NOT HAVE ANY EXPERIENCE OF RESEARCH so please don't let this put you off. But a keen and vocal interest in influencing the research agenda as a BME service user is desired.

There will be an honorarium payment of £25 plus travel expenses within reason, and refreshments will also be provided.

Please contact Diana Rose for further information and to express interest in participating t: 0207 848 5066 e: diana.rose@kcl.ac.uk You can also view this opportunity on the NEW Kindred Minds Facebook page

 

Help raise the standard of nurse education across the country

Peter Bates, an Associate Fellow at the University of Nottingham's Intitute of Mental Health, is working in partnership with Ruth Auton from Health Education England (HEE) to create an online Guide for involving service users and carers in nurse education.

This work follows a recommendation from the Lord Willis report on nurse education Raising the Bar, published 2015 and often referred to as the Shape of Caring Review. The aim is to have this Guide completed and available online at HEE by the end of March 2017.

Peter and Ruth plan to work in as co-productive a fashion as he can, so that you and others can suggest content and improvements as it goes along. The webpages are in the public domain and are being drafted in realtime, so you can see how it is developing from the start. At the beginning, the material is incomplete and perhaps of poor quality, but as people work together, it should rapidly improve and become a valuable resource, showcasing innovation and good practice from around England and perhaps beyond. Peter and Ruth would be delighted to include something from you.

So please click here to have a look at the draft webpages and then send Peter your suggestions for improvement, as well as example documents, case studies and other resources you would like to share. Please start with reading all the first webpage so you understand more about how it is shaping up, and then click on the blue hyperlinks and buttons to move around the site.

Please also share this invitation with others, and feel free to contact Peter Bates (Peter.Bates@ndti.org.uk) or Ruth Auton at HEE (r.auton@nhs.net) if there is anything you would like to discuss. Feedback is welcome from academics, service users and carers, clinicians, and anyone else with an interest in the field.

This is an opportunity to raise the standard of nurse education across the country and Peter and Ruth would be grateful for your support with this important project.

 

Free online disability and human rights course

The European Inter-University Centre for Human Rights and Democratisation is running a free online course on Disability as a Human Rights Issue – Global and National Perspectives.

It runs from 12 September to 24 October and aims to provide  participants with the knowledge and skills necessary to effectively approach disability from a human rights perspective. The course will take around five hours a week and includes online lectures, films and podcasts with weekly quizzes and discussions.

Full details are here: https://eiuc.org/education/global-campus-mooc.html

 

Coproduction and advocacy awards

SCIE is supporting  the co-production category in the National Co-production Awards. Pete Fleischmann will be judging the co-production category and SCIE would really like to encourage network members to nominate organisations and services that they know of, including their own, that have done good work in co-producing the design, delivery and evaluation of advocacy services. The closing date for nominations is 15 September 2016.

Full details are online here:

http://www.advocacyawards.co.uk/

Obviously you may also want to make nominations for the other categories, but please give particular thought to the co-production award.

 

Call for London based people with experience of being detained under section 136 and / or experience of attending A&E

  • Do you live in London?
  • Do you have experience of being held on a Section 136 for assessment?
  • Have you attended A & E in a mental crisis?

If so we would like to hear your views for an independent study commissioned by NHS England.
This research forms part of an on-going review of services for people who access mental health services in London.

Taking Part
Interviews, which can be held in person or over the telephone, will last approximately 30-45 minutes and all your comments will be treated in the strictest confidence.
Refreshments and travel expenses will be provided.

Payment
There is a payment of £30 to all participants.

Contact
If you are interested in sharing your experiences for this research study, please do not hesitate to get in touch
Telephone: 020 7820 8982 or Email: sarah.yiannoullou@nsun.org.uk

For information about Section 136, please see the Mental Health Act made law in 1983 and its 2007 Amendment

 

Share your story with MacMillan's Mental Health and Cancer Taskforce

Macmillan Cancer Support is gathering personal stories from people living with, or caring for someone with both mental health problems and cancer.

Cancer affects nearly 1 in 2 people during their lifetime, and mental health/emotional wellbeing problems affect 1 in 4 adults during any one year, so MacMillan believe there will be lots of people out there with this dual lived experience.

Macmillan’s Mental Health and Cancer Taskforce aims to better understand the needs and ideas for change of people affected by both cancer and mental health problems. The overall aims are to

  • Improve and innovate services, through input of and creative collaboration between experts by experience, Macmillan staff and health professionals
  • Build evidence of the need for better integration of mental and physical health care
  • Raise awareness and influence nationally on these issues

Interested? MacMillan are looking for people who:

  • have lived experience of mental health problems and cancer, either living with both themselves, or caring for/having cared for someone who has both themselves
  • are happy to share their story via telephone or email, with a view to improving things for others with mental health problems and cancer in the future
  • would be willing to share their story via interview or e-mail

Macmillan’s Mental Health and Cancer Taskforce started in Dec 2015 and held several engagement events for people affected by cancer and mental health problems. These events have given the researchers an idea of some of the problems faced by people with this dual lived experience. MacMillan have also brought together experts by experience with Macmillan staff and health professionals to co-design potential solutions to these problems. MacMillan are gathering people’s stories and have further events in the pipeline that you may be able to attend if you are interested in getting more involved.

To express interest in sharing your story with Macmillan’s Mental Health and Cancer Taskforce, or just to find out more, please email Maya

You can request to be added to the taskforce mailing list, so that you receive occasional updates as well as invitations to attend events or get involved in other ways.

MacMillan can reimburse expenses incurred through involvement, such as telephone bills (or the team can call you back) and travel (this can be booked and paid for in advance so you are not out of pocket).

 

Study into cognitive bias modification to help with paranoid thoughts

People invited to take part in a study into Cognitive Bias Modification to help with paranoid thoughts (CBM-pa)

This study, run by King’s College London and the McPin Foundation, examines whether a new approach called ‘Cognitive Bias Modification for paranoia’ (CBM-pa) helps people who feel they experience paranoid thoughts. CBM-pa encourages people to develop alternative ways of interpreting difficult thoughts and situations. There are no right and wrong answers in the CBM approach.

The researchers are looking for people…

  • aged between 18 and 65
  • who feel they have experienced paranoid thoughts that they find distressing, for the last month or longer
  • who haven’t had changes to their regular medication in the last three months
  • who speak English

What will happen if you decide to take part?

If you are eligible to take part in the study, you will be invited by a researcher to attend weekly sessions taking place at the Institute of Psychiatry, Psychology and Neuroscience in Camberwell (SE5) There will be six sessions and each will last about an hour and a half. The sessions would involve reading scenarios on a computer screen, completing missing words and answering questions about the scenario. There would also be follow-up assessments at one month and three months, by phone, internet or email. You would receive £10 per session or assessment (up to a total of £90), plus travel expenses of up to £10 per session. If you would like further information about the study, please see the study website http://bryonycrane.wixsite.com/cbm-pa.

The study has received ethical approval from the Health Research Authority (Ref: 16/LO/0071). If you are interested in taking part or have any further questions, please contact Thomas Kabir -  ThomasKabir@mcpin.org or 0207 922 7874. The organisers think of recruiting till the end of the year and thus have not given any specific deadline.

 

University of Manchester study: physical health care and mental health planning

Researchers at he University of Manchester are undertaking a research study exploring mental health service users and carers experiences of how well physical health concerns are incorporated into the mental health care planning process.

To be eligible, participants need to have had, or cared for someone who has had a UK mental health care plan. The research team is looking in particular at the quality of physical health information within the care plan as this was something that was raised as an issue for the service users and carers we work with. It is a fairly short survey which can be completed online here.

To obtain the survey in print, please contact Dr Helen Brooks 07552 007535 / 0161 306 7784 / Twitter: @Dr_HBrooks /email
If you wish to contact Dr Brooks by post: Dr Helen Brooks, Research Fellow, Division of Nursing, Midwifery and Social Work, Room 6.307|Jean McFarlane Building, University of Manchester, Oxford Road, Manchester M13 9PL

 

 

Road-test resources about Human Rights and mental health

The BIHR project Care and Support: A Human Rights Approach to Advocacy is working with six groups (including NSUN) to ensure people with mental health and capacity issues have increased control and autonomy over treatment decisions, and make sure they are treated with dignity and respect.

As part of the project, resources on human rights, mental health and mental capacity have been drafted. You can read pilot versions of the resources:

If you would like a hard copy of the resources, you can pick one up at one of BIHR's learning events for third sector workers, or email Jasmine Powell

The resources are still being tested and your feedback would be greatly appreciated. Please fill in the surveys once you have finished reading or email Helen Wildbore  with your thoughts.

 

University of Lancaster's REACT study

The REACT study, which is run by researchers at Lancaster University, compares the effectiveness of a Relatives Education and Coping Toolkit (REACT) with an online Resource Directory for reducing distress and increasing wellbeing in relatives or close friends of people with psychosis or bipolar disorder. Using volunteers, half the participants receive the REACT toolkit, and the other half receive a Resource Directory. If the toolkit is proven successful, it has the potential to be rolled out across the UK.

Accessed online, the toolkit contains lots of information on psychosis and bipolar disorder including people’s experiences of the illness, mental health services, and treatment. It also has strategies to manage common problems, highlighted by relatives taking part in the study. An online forum (REACT Group) allows participants to talk directly with others.

The Resource Directory lists details of how to access the full range of support currently available to relatives and friends of people with psychosis or bipolar disorder. It also includes web links to national mental health organisations and details of how to access support through NHS health services. This ensures you get access to the best support currently available.

The REACT Team are looking for more relatives or close friends of people with psychosis or bipolar disorder to take part in the study.

If you would like to know more or sign up, please visit reacttoolkit.co.uk.

 

The effects of the Prevent Agenda in the Health and Education sectors

Amrit Singh, a human rights lawyer at the Open Society Justice Initiative is researching (from a human rights perspective) the effects of Prevent in the health and education sectors with a view to producing a report/briefing papers on the subject that could be used to advocate for reform.

Specifically, she would like to examine how the statutory duty under Prevent is being applied in the health and education sectors, what kinds of training medical and education professionals are receiving, and how Prevent is being applied in practice, who is being referred and on what basis, and with what effect on the community.

She would like to interview health and education professionals as well as others with expertise on the subject or families directly affected by Prevent about their experiences of Prevent. She is happy to anonymize the interviews so the identities of the interviewees are not revealed in the report/briefing papers.

Please email Amrit to arrange to meet in person a a convenient time and place for an informal conversation about your experiences of Prevent.

 

MacMillan's 3rd Engagement Event for Mental Health and Cancer Taskforce

Have you had cancer and found that the experience impacted on your emotional and mental health? Or perhaps you had pre-existing mental health problems and then developed cancer as well? Have you cared for or supported someone who experienced both cancer and mental health problems?

MacMillan are holding a co-design and partnership event for people affected by both cancer and mental health problems to come together with Macmillan staff and healthcare professionals to better define the problems faced by people with this dual lived experience and to co-design solutions to these problems.

The event will be on Wednesday 20th July near Euston Station in London. Reasonable UK-wide travel can be booked for you In advance or reimbursed  afterwards. Where necessary, hotels can also be provided to allow people to come.

People with both cancer and mental health problems can face disadvantage, inequality and discrimination. Those involved with the MacMillan taskforce will help shape MacMillan's work nationally to improve outcomes for people with cancer. The organisation wants people affected by cancer and mental health problems to participate in and be central to the work of the taskforce.

The event will be structured and interactive, but led by the views and input of those attending. Lunch and refreshments will be provided free. The venue is fully accessible.

Where: 3mins walk from Euston Station, London, NW1

When: Wednesday 20th July, 10.00am – 4.00pm

Maximum number of places: 30 people

To express interest in participating, please email research.learning@macmillan.org.uk, telling the team a bit about yourself and why you would like to attend; if you are not online, please phone Anna on 020 7091 2056 to leave a message and MacMillan will call you back. You will be asked a bit about yourself and what your experience has been before you are offered a place, as MacMillan wants to ensure that they get a good mix of people in the room in terms of ethnicities, ages, gender, types of cancer and mental health problem, and the area you come from. If you are not available on the 20th July, or are not offered a place, there are other ways you can get involved in the taskforce, so do get in touch to register your interest.

 

McMillan's 2nd Engagement Event for Mental Health and Cancer Taskforce

Have you had cancer and found that the experience impacted on your emotional and mental health? Or perhaps you had pre-existing mental health problems and then developed cancer as well? Have you cared for someone who experienced both cancer and mental health problems?

McMillan are holding a second engagement event f