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Meet the team: Rewriting Psychosis

Also:

  • Martha Sneyd (previously a mental health service user, and now a Recovery Navigator)
  • James Robinson (Peer Support Worker, Second Step)
  • Dr Simon Downer (Consultant Psychiatrist, Avon and Wiltshire Mental Health NHS Partnership)
  • Dr Sarah Sullivan (Research Fellow, Centre for Academic Mental Health, UoB)
  • Dr Michelle Farr (Senior Research Associate, Ethnography team, CLAHRC West)

The challenge

“From the dual perspective of having been a patient and now working in mental health it’s clear that for many people, being in hospital is more traumatic than the experience of psychosis itself. This needs to change”.

Martha Sneyd, Co-lead for project

For people who have experienced symptoms of psychosis, negative hospital experiences can lead to stigma, isolation, loss of confidence and potentially rejection of services. Messages of hopelessness received from staff and unequal power dynamics can cause disempowerment, low self-esteem and resentment of the system.

We need to improve experiences of mental health in-patient wards for service users, their families and staff.

The idea

“Any crisis contains within it the seed for transformation. Psychosis is no different and we believe that peer support on inpatient wards could be a crucial first step in facilitating this process”.

Martha Sneyd, Co-project lead and Dr Michelle Farr, Co-project lead

study found that 61% of people with diagnoses of psychosis or schizophrenia were told by mental health providers that recovery was impossible. Peer supporters can provide positive role models, to show that recovery is possible after a mental health crisis. 

We want to co-design a peer support scheme on in-patient wards with service users, those close to them, staff and peer support workers. Through using appreciative inquiry techniques, we will build on people’s strengths, values and ideas, learning from examples of peer support in inpatient settings that people have shared with us, and exploring diverse, culturally sensitive understandings of psychosis symptoms.

Our conceptual framework stems from Martha’s current MSc in Transpersonal Psychology with the Alef Trust. Transpersonal psychology involves studying human transformation, and Martha’s learning in this, as well as lived experience of transformative recovery has informed the roots of the project. We will draw on post traumatic growth models that outline thriving and resilience as a potential outcome for crisis and explore how these concepts can be applied to the co-design of peer support, where space is created within wards for narrative, meaning and hope, so that breakdowns can become breakthroughs.

The plan

  • Use peer support literature (including Recovery Colleges) to help us design the support scheme.
  • Conduct telephone interviews with those who have developed similar schemes in other parts of the country.
  • Conduct telephone interviews with grassroots organisations (such as Emerging Proud) to gain their perspectives.
  • Building on this review and interviews we will use co-design methods to run six workshops involving service users, those close to them, peer workers, and mental health practitioners to develop peer support.
  • We will write a blog through the project to communicate to everyone involved how the process is evolving, and what we have learnt so far.

Details of the six workshops

  1. People who have experienced symptoms of psychosis and spent time in an inpatient ward will discuss what they would have appreciated from a peer support scheme whilst they were in hospital.
  2. Families and carers will provide their perspectives on priorities for peer support.
  3. Existing mental health peer support workers will discuss their experiences of providing peer support, and how potential peer workers strengths and interests could contribute to peer support work on wards.
  4. Potential in-patient wards at AWP NHS Trust where peer support could be developed will be identified. Staff will be invited to explore what works well on wards and how peer supporters could engage with people staying on wards.
  5. We will bring together attendees from the first 4 workshops to co-design peer support through two workshops.
  6. Further work will be done to complete the peer support design. We aim to apply to the NIHR Research for Patient Benefit to implement and evaluate the effectiveness of the peer support.

Progress

Our proposal has been inspired by a public involvement event Rewriting Psychosis – run by the Psychosis Health Integration Team. This event, attended by over 130 people, showed the film CrazyWise, a documentary about different cultures’ definitions and responses to psychosis. This proposal is one of the outcomes of the event discussions and develops Martha Sneyd’s ideas to co-design peer support in inpatient wards.

We have confirmed that no similar local work is underway. We will draw together learning from examples of peer support that people have shared with us, to generate ideas to establish peer support schemes in inpatient wards focusing specifically on psychosis. This work will be based on a post traumatic growth model, firstly that psychosis is a traumatic experience, and secondly that if successfully resolved can lead to greater levels of wellbeing. We hope that this can be of national, and possibly international relevance. We are connecting with similar initiatives and researchers around the country, to share learning and expertise. 

We’ve made connections with the local provider of peer support in other settings who will be collaborators in the project. NIHR CLAHRC West will be project partners so that this work can contribute to research evidence, we can write a research article on the co-design of this type of peer support, and apply for further funds to evaluate the effectiveness of the peer support. The Chief Executive of Avon and Wiltshire Mental Health NHS Partnership, where this project will be based, is supportive of this idea, and sees co-production and peer support as vital within services. We have connected with colleagues at the Sussex Partnership NHS Foundation Trust about a related, but smaller scale project. We are in touch with Rethink to build links with family and carer networks. We have discussed the project with the Founding Director of The Alef Trust who suggested using appreciative inquiry techniques to build on people’s strengths and values in the peer support co-design. We’ve had support from professionals developing mental health strategies for our local Sustainability and Transformation Partnership, and Thrive Bristol (a City Council initiative to create a whole city approach to wellbeing).

Who benefits?

  • People with experience of psychosis: Peer support in mental health has been associated with improved quality of life, self-efficacy, trust and empowerment, as well as reduced hospital use.
  • Staff on wards: Additional support and exposure to people with experience of psychosis who are thriving outside of hospital settings.
  • Peer support workers: A carefully planned framework for supporting peer support workers on wards.
  • Q community: A ‘best practice’ model for peer support development which can be applied to other areas. We will share blogs, highlight to our local and other Q networks. We will also offer placement opportunities and visits for Q members to learn and contribute to the project. We also aim to generate additional interest from service users in becoming Q members.

How you can contribute

  • Sharing experience of peer support in hospital settings
  • Expressing appetite to implement a similar project
  • Promoting the work and generating enthusiasm among networks

Further information

Why diagram (DOCX, 37KB)

Reviewer feedback

This is a great project because…

There is a real commitment to co-design and collaboration in this project with co-leadership from someone who was previously a patient and now works in mental health. The team have already engaged widely with Q members and it was great to see the project design develop following those conversations and connections. The plans for sharing learning back to the Q community are well developed.

By the time of the event we encourage the project team to think more about…

Although connections into formal research are a strength for the project, we want to team to make sure there is sufficient focus on developing and delivering the intervention. We are also interested to hear more about their plans for sustainability beyond this funding.

Comments

  1. Hi Oliver - great that you can join us. Do make sure you register before, to get your personal log-in details for the call. (The link is on the event webpage).

    And please share with others who may find this interesting.

  2. Want to learn more about what Coproduction is - and isn't? Want help and advice with your own improvement project's co-production challenges?


    Do join next month's zoom video call with Q's Coproduction SIG and Coproduction expert Carol Munt.


    To register go here: https://q.health.org.uk/event/what-is-coproduction-and-how-can-you-make-it-work-for-your-improvement-project-with-carol-munt-zoom-call-14-sept-12-30pm/

    Bring your challenges!

    1. Should be a great opportunity to share - look forward to it!

  3. Updates coming soon to our project page, looking forward to meeting colleagues in September!

  4. Peer support is so important in being able to give people hope and the research aspect is particularly vital in ensuring that the project produces evidence on what does and doesn't work, for others to build on.

    We are looking at ED Mental health Frequent Attenders in our shortlisted bid and peer support for the service users is an important possible approach in this setting too.

    1. Thanks for this Fran, it's great to see your project. There has been some work on peer support in ED in Bristol too, focusing particularly on self-harm. If you'd like to hear more, please get in touch direct through oliver.watson@bristol.ac.uk

      Great to see the conversation about complementary work in London.

    2. Hi Fran - have you been in touch with Barnet, Enfield and Haringey Mental health NHS Trust? They're recently started a pilot of peer support with the liaison team at North Middlesex A&E and already have lots of learning.

  5. Thanks panel for shortlisting us! We are really excited. Appreciate your feedback - we will get to work on making our plans for developing and sustaining the intervention nice and clear.

  6. Thanks

    I found your video very helpful in understanding what you are trying to achieve.

    I am keen to support any project that gives people hope that they can recover from severe episodes of major mental health problems. I know from my own experience that peer stories of hope will have a greater impact than staff told stories, we often see this in secure services when a previous service user comes in to share their story of recovery. You raise an interesting point around staff...I wonder if we should do more to reconnect staff with people they have actually supported when very unwell as well as stories of such recovery. Staff culture is so crucial to providing the right environment for people to recover in.

    1. Thanks Helen - a really neat reflection and suggestion, thank you. Will take to our next project team meeting. We're building stronger links with staff in our local mental health trust by the day and are working hard to help design something that can work well for them and create the right environment.

  7. Great idea Olly. The way forward has to be greater awareness amongst friends and family as well as peer support to help people with their mental health. Really interesting model. Good luck!

    1. Thank you Hildegard!

  8. Thanks everyone who has been commenting on and improving our idea. Myself and colleagues really appreciate it.

    If anyone would like to add their name to 'supporter' list, then please do so at the top of the page.

    Thanks!

  9. Fab idea! I lead a Recovery College in our Trust and so have seen the power of peer support in people's mental health recovery.

    I wonder about the 'cultural warm-up' for this project on your wards, as the role of a peer support worker can be very lonely in amongst professionals who are still committed to traditional concepts of relationship and illness. In my experience, the peer support workers either become rejected but he system or assimilate, thus diluting the power of their role. So Im curious about how this potential culture clash can be managed and how the peer support workers will be supported.

    1. You've struck to the heart of it! Culture so important. Our psychiatrist lead has made us acutely aware of how crucial the 'cultural warm-up'  will be for the project to have any kind of success. That's why we've made sure to have a workshop with ward staff. We don't want this to be something done 'to' them.

      Giving a separate workshop for staff at the start (and then full involvement in the final two workshops), is one way that we are going to try and be sensitive to this. We'll explore the questions you pose collectively throughout the design process.

      We have started to identify which wards are likely to be most appropriate. Some early meetings are going to happen soon to build relationships.

      Hope that helps as a start - it will be an ongoing learning process. Really appreciate your interest.

  10. Hi Oliver,

    great to see you putting this forward. As others have mentioned  there are some great examples of peer support workers in inpatient settings out there. Check out Nottingham, who led the way and who have got some great advice about the wider organisational changes that need to be put in place to make this happen effectively.

    As Emma mentioned above the Recovery Colleges have also had a huge impact on this approach. In ten years they have spread across the U.K. and internationally. I think there are now over 65 and growing. Prof. Julie Repper via IMROC has just published a summary paper called 'Recovery Colleges 10 years on'. It's a synthesis of the original ideas that started the movement and what has happened since. It has all the academic references you were asking for in it.

    Many of the colleges link in with peer workers on inpatient wards in order to help promote a recovery based approach and to offer peer support by people with lived experience across the organisation. Peer workers on the ward help signpost to the Recovery Colleges so people have access to courses and peer support after they leave hospital. The two ways of working are hugely complimentary and the emerging data tells us that people attending Recovery Colleges appear to need less intensive inpatient stays after completing the course, so preventing or reducing the period of admission in the first place.

    Happy to share more if at all helpful.

    good luck

    best wishes

    Anna

    1. Hi Anna, wonderful to see your thoughts, thank you. Obviously some really useful work to build on. I've updated our bid to make clear that the literature review is going to cover Recovery Colleges too. We're following up some of the references as I type! Sure more questions will emerge and we really appreciate the offer of a continuing conversation! All the best

  11. Hi Oliver - I'm pleased you're developing the proposal and have been in touch with Melissa to explore collaboration. You might also want to include a conversation with Marissa Lambert, the peer training team lead at the Institute of Mental Health Nottingham. A conversation with her would help you think through the team readiness side of the project as well as training and implementation.

    1. Brilliant - thank you! Have added her to our contacts list

  12. This sounds like a great idea. It's not inpatient specific but some years ago I was involved with setting up the Recovery College at South West London & St George's MH Trust. The model there was one clinical and one peer trainer delivering sessions for patients (those who were inpatients could attend). They had a variety of courses such as Understanding Psychosis, Mindfulness and Computer Skills. The curriculum may have changed a lot over the years but service users rated it highly and all courses were co designed & delivered. I'm wondering if something with a less formal teaching approach on a ward would be beneficial.

    1. Thanks Emma - I'm afraid I haven't received a message. Perhaps you could email me - oliver.watson@bristol.ac.uk

      We really appreciate your help

    2. Hi - I hope you received the information that I sent to you via message as I had issues posting it on here. I see that someone else has also suggested some links to info for the college.

    3. Thanks Emma, that's really interesting to hear. Don't suppose you have any links to a write-up that you might be able to share? Thanks

  13. Hi, sounds like a great project - and good to see.  There are peer support workers on inpatient wards around the country (speak to people at Merseycare, Birmingham, Nottingham, CNWL, etc etc). There are also various research projects which have looked at peer support in the transitions around inpatients and crisis teams. Melissa Pyle at the Psychosis Research Unit in Manchester has also published on the potential impact of peer support on internalised stigma for people experiencing psychosis.

    1. Hello Karen

      Thanks again for this - wanted to let you know that we have now updated the bid to add time for telephone interviews with colleagues at some of the centres you mentioned. We're also making contact with Melissa Pyle, read some of her papers, and are exploring potential collaboration.

      Thanks for your feedback - has really helped improve what we are trying to do!

    2. Thanks Karen for your thoughts - exactly what we were hoping to see. Will be great to connect with these other schemes - shall look into them.

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