Co-Production……because it’s worth it! 

In our previous blog posts and on our website, we’ve talked in great detail about the how, the when, the who and the what of Co-producing with people with lived experience.  We’ve also shared our learning around the potential challenges, how to overcome them and how to be creative when co-producing.  In our final blog, we’ll look at what is probably the most important piece of the co-production jigsaw puzzle… the why. 


So, why is it better for a service to change from their established way of working to co-producing with service users?  

Firstly, it’s worth stating that the purpose of any service is to deliver that service to those who need it.  It should be accessible to everyone from any demographic.  In the context of our work, we are referring to housing, substance misuse, mental health, domestic abuse, and those related to prison release.  It can be difficult enough for someone to access any of these services even if they are experiencing a single complex need, and accessibility is a fundamental aspect of an effective service.  Service users are best placed to inform how the services aren’t accessible for them, either individually, or connectedly.  If they aren’t accessible for them, then the service hasn’t been designed for others in similar circumstances.  Working closely with the people who understand the needs of those falling through the cracks is the best way understand the service’s design flaws so the cracks can be filled.  They can tell you what needs to change and what they feel they needed from the service at that time in order to access the support on offer.  With every additional complex need, it becomes more difficult for someone to access a service on its terms.  Genuinely co-producing with people with lived experience of multiple and complex needs can help the service reach those in the most chaotic circumstances. 

If a service is co-produced from the start, it will be designed to be more efficient while making the best use of the resources available.  There will be fewer missed appointments due to improved accessibility, thus less wasted time and money while reaching more service users and increasing the chance of better outcomes. 

A service can be inaccessible even before attending an appointment.  The service’s reputation can help or hinder the staff who are offering support.  It may be that before someone walks through the front door and meets their support or key worker for the first time, they will have expectations that may be positive or negative based on word of mouth or service reputation.   If a service has been co-produced with those who use it, this will help to increase trust amongst the community it serves, leading to better relationships between workers and service users, and a greater chance for positive outcomes. 

Co-production can benefit service users not just by improving service provision.  Through the process of involvement, service users will be empowered with the opportunity to harness their experiences and direct them in a way that benefits others, providing purpose and a sense of belonging.  Furthermore, services who show trust and value in the co-production process can have a strong impact on the self-esteem, self-worth and confidence of the people taking part, while concurrently helping them to gain skills and experience.  This involvement can be a significant step in someone’s recovery journey.  It also represents a cultural shift in the way society views those with the most complex needs, paving the way for less stigmatising beliefs. 

There is a growing emphasis amongst funders to incorporate co-production into service design.   It is encouraged by procurement regulations and favoured by commissioners, so its value has been recognised.  Bids are likely to be seen more favourably when co-production is part of the service operation.  In these cases, it’s important that co-production is well understood so it can be implemented effectively. 

And finally, people have the right to be involved in their own care; professionals and service users working together to find the best path forward.  When someone is living in chaos, they may not feel they have much control over their own circumstances.  Working with someone in this way provides a sense of agency which can have positive knock-on effects in other areas of their life. 

Key Messages:

So, to summarise, co-producing with people with lived experience of multiple and complex needs is beneficial to the service and service user because: 

  • It is more efficient in the long run as the service will be set up to cater for the needs of all its users, with fewer wasted resources 
  • Outcomes will be better for service users and more sustainable 
  • Co-producing can lead to creative solutions to difficult, long-standing problems 
  • Involving people in their own care is the right thing to do and offers some control over their lives which may be lacking 
  • Service users gain skills and experience that can help prepare them for work 
  • Co-producing provides service users numerous psychological benefits such as a sense of belonging, purpose, and achievement, while building self-esteem, self-worth and confidence 

Below are some quotes from volunteers on co-producing pieces of work with Fulfilling Lives: 

“We had a voice, made me feel I’m not the only one who had experiences like I did at [service] as heard other people’s experiences doing this project, builds confidence. Not very often you have a voice. Hopefully speaking for people who don’t have a voice. We were trusted to do this – self-esteem, not being judged on our past” Service User Involvement Volunteer – FLSE 

 

“Possibility to have a voice. Feeling valid. Being given agency. It felt good to take difficult experiences and turn them into something productive and taking the chance to step into a more active role, after a long time of feeling powerless and hidden”  Service User Involvement Volunteer – FLSE 

— 

“Everybody should be part of decisions and making a change. Lived experience brings unique perspective, emotional intelligence. Can’t learn it from a textbook. Think that trying to heal and overcome hard times is a difficult and long journey but it also gives incredible insights into yourself and the world, for better and for worse. When the experiences of hard times collide with social services police and other systems, I think that insight and emotional intelligence is particularly valuable if not essential as a window into the client base”  Service User Involvement Volunteer – FLSE 

The only question that remains then is “When are you getting started?” 


Author: Ian Harrison – Co-Production and Engagement Worker

Thanks to colleagues & volunteers at FLSE: 

Vikki Hensley – Co-Production and Engagement Worker

Aditi Bhonagiri – Co-Production and Engagement Worker

Kate Jones – Co-Production and Engagement Worker

Andree Ralph – Engagement and Co-Production Lead

Service User Involvement Team Volunteers

For further information about Fulfilling Lives work in this area, please contact:

ian.harrison@fbht.org.uk

For more information sign up to our newsletter:

https://bht.us6.list-manage.com/subscribe?u=b43e61c311da27ad5194daffe&id=148d2193de

Co-production: Definition is in the detail

“Co-production is a high level of such participation that involves sharing control with those using (or who have used) a service, and ensures they have equal influence over the design, delivery and commissioning of any service that affects them.”


The above quoted text is the official Fulfilling Lives definition of co-production in the context of working with people who have experience of multiple and complex needs, as shown on our website.  It isn’t dissimilar to other definitions which can be found by searching for the term online.  The idea is simple and speaks for itself, yet when considering working in this way, this definition and many others can become increasingly vague.  It is a way of working that can be applied to a wide variety of activities and projects within differing organisations.  These projects and organisations will have their own ethos, goals, values, management structure, rules, regulations, policies, guidelines, and other restrictions on flexibility that need to be considered when deciding to co-produce.  Furthermore, there isn’t one way to approach co-production.  The same task can be divided a multitude of different ways.  It is up to you (all) to decide on the best approach to meet your goals, while considering who you are working with, the skills and interests they possess, and the various regulations previously mentioned that may restrict choice and freedom.

At Fulfilling Lives, we aimed to co-produce from day one of the project being in operation.  As well as a systems change project, we are an experimental one.  We have learned about co-production along the way and evolved our practices accordingly to fit our purposes.  It is through trial and error, continuous reflective practice, regular analysis of how we operate, and regular feedback from those we are co-producing with that has helped us to see the challenges and nuances of the co-production process.  From this, we are better able to foresee potential sticking-points or areas of conflict that may emerge.

An example in practice:

As an example, consider co-producing in the following scenario:

Co-ordinated by a member of staff, a service user group decide to produce an information brochure to help others navigating social services’ childcare proceedings.

Questions or dilemmas that might arise during the process:

  • Are we being inclusive and accessible?
  • Do people feel confident and knowledgeable enough to meaningfully contribute?
  • Who has personal experience of childcare proceedings?
  • How might taking part impact service users? – discuss with them.  What emotional support might they need and is this available?
  • Have you asked service users what they will need to complete their task e.g. regular check-ins with their mentor? Do they feel they can reach out for help if they need it?
  • If someone wants to drop out, do they feel they can let us know so the work can be undertaken by someone else and completed before any deadlines?
  • Is there a member of staff who would need to authorise the content and design?
  • Are there branding guidelines that need to be followed?
  • Does anyone have design experience?
  • What is the division of workload?
  • Who can commit?
  • Do the group want to work on the whole brochure collectively, or would people prefer to own sections from start to finish?
  • Should people have specific roles based on personal experience and interests?
  • Should someone be responsible for ensuring the writing flows consistently throughout the final document?
  • If someone can’t make a session, are they happy for someone else or the group to take on their work?
  • Should people be appointed the power to override decisions based on their expertise or experience?
  • What if there is a conflict over content or design?
  • Does the final product have to be of professional quality?

This is not an exhaustive list of potential questions that may come up, but it serves to illustrate the intricacies of power sharing and the nature or working in a co-produced way.  Thinking about the questions and challenges that may arise has several benefits; firstly, it demystifies the unknown.  When you can visualise what’s up ahead, it’s less intimidating getting started.  Secondly, it will help avoid or manage potential conflict while minimising occasions when you may have to explain why a suggestion may not be possible.  Saying ‘no’ highlights a power difference, can result in people feeling rejected, and can shake trust in the relationship and faith in the process.  Like any members of staff, service users need as much clarity and transparency on their role and the work they are taking part in right from the start.

What Co-Production is NOT ….

Exploring questions around barriers and restrictions is one way of gaining clarity when co-producing.  Another, is to think about areas of uncertainty around what does and does not count as co-production: 

  • Co-production is not about individual agendas  
  • Co-production does not mean an equal share of the workload 
  • Co-production does not mean all group members need to commit an equal amount of time 
  • Co-production does not mean equal accountability and responsibility 
  • Co-production does not preclude the project group having a leader/manager/coordinator 
  • The co-production process in not free from rules and limitations 
  • Ideas and opinions shared when co-producing a piece of work does not mean they are all equally considered by default.  It is important to remember that there is a common goal as defined by the objective, and that ideas should be considered on their merit and relevance  
  • Co-production is not assuming everyone will want to be involved 
  • Co-production should not be tokenistic  
  • Co-production is not consultation 
  • Co-production does not mean an individual must be part of the process from start to finish 

Connecting all the pieces for your project ….

Through curiosity about the process and discussions with service users, over time you’ll gain a more complete picture of what co-production will look like in the project you are taking part in, like piecing together a jigsaw puzzle.  We would suggest starting with the vital things that need to be in place – how will you co-produce in a trauma-informed way that keeps people safe, enables them to make informed choices, work collaboratively, build on relationships of trust, and honour everyone’s voice? There may always be elements of unpredictability and uncertainty when compared to the standard role-based hierarchical management structure, and it is important to be transparent about these from the start, as far as possible, with everyone taking part.


Authors:

Ian Harrison, Engagement and Co-production Worker

Vikki, Engagement and Co-production Worker

For further information about Fulfilling Lives work in this area, please contact:

Andree.Ralph@sefulfillinglives.org.uk, Co-production and Engagement Lead:

For more information sign up to our newsletter:

https://bht.us6.list-manage.com/subscribe?u=b43e61c311da27ad5194daffe&id=148d2193de

Health Inequalities: Contributing to national and local consultations

Contributing to national and local consultations


For Fulfilling Lives South East (FLSE), engaging in formal consultations is a way of influencing systems change and connecting with key decision makers.

Engaging in consultations provides a way of informing and influencing the development and delivery of a project or programme, the commissioning or delivery of a service, or the development of a strategy or policy. Consultations offer the opportunity to engage with national Governmental agencies and public bodies, Local Authorities and Commissioners, in a dialogue to help them better understand your needs and opinions, which they will consider when developing policy and delivering services. Engagement in formal consultation provides one of the greatest opportunities for marginalised communities and voices to be heard in spaces which are not traditionally accessible.

The Kings’ Fund advocates that ‘people and communities using health and care services are best placed to understand what they need, what is working and what could be improved.’ Formal consultations provide an opportunity for those using services to have their say. 

The FLSE team has used opportunities to participate in consultations for this reason; to promote the voices, experiences and views of people with experiences of multiple and complex needs (MCN). In our work to tackle health inequalities, we participated in and contributed to the following four health-related consultations nationally and locally:

We have welcomed the opportunity to address and highlight inequalities for people experiencing MCN and feel that these consultations are symptomatic of a system that is ready for change and looking to listen to lived experiences. 

This blog contains an overview and summary of our responses, our messages and reflections on how the system can continue to improve. We also share our way of engaging with health-related consultations to encourage more agencies to engage in these opportunities as a way to champion the views of, and improvements for, the people they support.

Co-production and consultations

For all our responses to consultations, we have worked with the Service User and Engagement Team, volunteers and experts by experience, to build and shape our messages and recommendations. We think it incredibly important to represent our clients and amplify their voices when feeding into consultations and help tell their stories to demonstrate what impact (positive or negative) current local and national policies are having on their lives.

Louise Patmore, Programme Lead Participation Mental Health Collaborative with Sussex Health and Care Partnership, who we have closely worked with says that

Co production is so important in the transformation and development of our services in health. For many years we have had a “doing to” way of working and people have not been able to have effective choice or control over their health care. It is recognised that health seems to have a very specific problem about providing patient needs versus organisational want, be that financial saving or accommodating new services. Co production enables – or should – enable us to be able to hear from those that actively use services and its impact. We need to be open hearted and minded to the voice of people, especially those that have specific needs. Society is always judged on the way it treats the less able. We need to be able to think differently and using coproduction to be able to shine a light on our issues, become more transparent about them and work together in a diverse way to find solutions can only help to improve our services and provide better, more efficient ways of supporting people and reducing pressures on the system and making sure that people get the right type of treatment at the right time. It will help us with efficiency and economy but only if we truly coproduce and share power.

The people who participate benefit from inclusivity and services are known to become better the more involvement there is. It helps us to grow a listening culture and a more empathic culture that also supports staff wellbeing.’’

Similar sentiments have been expressed by Ian Harrison, our Coproduction and Engagement worker:

Co-producing consultations with people with lived experience is a must.  Our review of the Mental Health Act would not have been as in depth or as targeted without the contribution of one our volunteers.  The breadth of knowledge from their personal experience and their past work with people of this cohort surpassed our own by a large margin in particular areas.  Without their expertise and detailed knowledge of specific parts of the system and its effects on those it is designed to help, valuable information during a pivotal moment could have been lost, and the opportunity to affect change in a key area would have been missed.

1. The Mental Health Act- review

Since our submissions and previous blog post, the government responded to the Mental Health Act (MHA) review and we are happy to see an acknowledgement that the MHA doesn’t always work for patients, their families and carers. Our full blog to comment on the government’s next steps can be found here. We welcome the new guiding principles of choice and autonomy, least restriction, therapeutic benefit and the person as an individual in the Mental Health Act Review as the focus is now shifting to a more person-centred approach. 

However, we are uncertain how the proposed changes in the MHA can lead to increased funding into services and equity in place-based mental health care provisions and hope the Government can clarify this during 2022. 

2. The East Sussex Mental Health Inpatient Consultation

The FLSE team was keen to participate as we know that over 75% of FLSE clients have a self-identified disability, of which 84% had a mental health problem. We contributed extensively to the East Sussex Mental Health Inpatient-consultation and our suggestions and recommendations have been incorporated into the future service design plans for a new inpatient facility that will be built in Bexhill by 2024.

After multiple consultations and workshops throughout 2021 with the East Sussex Mental Health Inpatient Consultation team, we had representation from volunteers and experts by experience, the full report has been published.

In best practice public consultation, understanding the potential impacts of proposed changes to public services on vulnerable individuals and groups is vital. While every effort is made to reach out to these groups during consultation and engagement, there are often challenges and barriers to hearing first-hand feedback; this is perhaps particularly the case for those with multiple complex needs who may be experiencing crises or difficult personal circumstances.

In this context, the support and input of organisations like Fulfilling Lives South-East are invaluable; in a recent consultation around inpatient mental health services, the FLSE team took the time to take part in an interview with Opinion Research Services (ORS) researchers and a workshop for stakeholder organisations, and to prepare and submit a detailed response for inclusion in the final feedback report. The combination of professional expertise and lived experience that FLSE were able to bring to bear meant that the insights they provided via ORS contributed valuable evidence for conscientious consideration by senior leaders and decision makers in the NHS.

Charlie Wilson, ORS Senior Researcher and Public Consultation Lead, sharing his reflections on the impact of the FLSE engagement with the consultation.

3. The Women’s Health Strategy

Throughout 2021, there was a call for evidence to inform a new national Women’s Health Strategy. This call for evidence has now closed and the government has published its Vision for the Strategy in late December 2021.
The Vision document identifies six key areas of improvement: 

  • Menstrual health and gynaecological conditions
  • Fertility, pregnancy, pregnancy loss and postnatal support
  • The menopause
  • Healthy ageing and long-term conditions
  • Mental Health
  • The health impact of violence against women and girls

The full Strategy will be published in spring 2022 but in the meantime, we have written a letter to Maria Caulfield MP to share our reflections and recommendations to improve the health of women with MCN for, namely:

  • Women experiencing MCN are underrepresented in consultations;
  • We are concerned that women experiencing MCN have not been named as a separate category in the strategy;
  • We would like to see training on trauma informed approaches and a less siloed approach between physical and mental health throughout the NHS, adult social care and the third sector.

4. B&H Mental Health Crisis House Service- survey

In August 2021 we contributed to the B&H Mental Health Crisis House Service survey organised by the Brighton & Hove Clinical Commissioning Group. This service aims to provide short-term intensive support and care (e.g. 7 days) to patients to avoid hospitalisation.

Following the survey, the Council has put together an ambitious specification and contract for the new Crisis House service and commissioners are now in the process of reviewing applications from the tender.

Looking through the service specification, we are happy to see Multiple and Complex Needs defined in a similar way to FLSE’s definition; as people who experience several problems at the same time, such as mental ill health, homelessness, drug and alcohol misuse, offending and family breakdown.

However, we noted that the new service will predominantly take referrals from the existing mental health trust services (SPFT). We would have liked to see the referral pathway to be widened beyond the SPFT Mental Health Urgent Care Services, with GPs and third sector organisations also being able to refer into the service. The service will have single rooms with en-suite bathrooms and we welcome this and included a recommendation on this as part of our feedback in August, However, we are concerned that there are no female only spaces required in the new specification. The Contract refers to specific patient cohorts who will be a priority for improving access to mental health crisis services, but MCN is not one of them.

On a positive note, there is a commitment for the service to provide support, which is Psychosocial and Trauma Informed, and includes a comprehensive training package for staff on trauma informed care and dual diagnosis. (p.22) We support these approaches as our work highlights how valuable this approach is to building trusting and supportive relationships with people who have MCN.

We are also pleased to see that it is part of the acceptance and inclusion criteria that people can access this service if they are ‘ready to engage with the Recovery Model and have consented to stay at the Service’ (page 17), so that people with a co-existing substance use and mental health needs aren’t excluded. And that the service will link patients with other statutory and voluntary sector services to support a patient’s health, substance misuse, mental health and social care.

Key messages for the healthcare system

Chief Medical Officer, Prof. Chris Whitty, is calling for a national strategy for public health as well as an increased investment in prevention and spending that supports population health to improve the health and wellbeing of coastal communities. The Kings Fund is also calling for a cross-governmental strategy to reduce health inequalities for people with MCN.

FLSE supports both of these national developments and calls locally for:

  1. MCN, or multiple disadvantage, to be named in local and national healthcare policies, strategies, and service contracts and paired with an expressed commitment to meeting the needs of this group. Due to the stark health inequalities faced by people with MCN, their needs must be factored into local Equalities Impact Assessments and given the same profile as other protected characteristics.
  2. Setting up a local review process to monitor deaths of people experiencing MCN and assess progress in improving health inequalities for this group.
  3. Offering choice to patients with MCN as crucial to increasing access to primary healthcare. We call for increased community-based primary care that enables engagement through walk-in clinics and drop-ins as well as healthcare professionals providing outreach into communities to build relationships and deliver care outside of traditional spaces. This can be enabled by scaling up existing good practices as suggested in the FLSE Bright Spots report.
  4. Integrating frailty scores as a routine clinical assessment tool with rapid access clinics to respond to these high frailty scores. This will enable the coordination of care for complex conditions for people with MCN.
  5.  A dedicated funding stream within Sussex’s new Integrated Care System to support the needs of people experiencing multiple disadvantage. This would be a vehicle to promote the commissioning of a cohesive, joined up healthcare response to meet the needs of this distinct group of people. 
  6.  Trauma-informed practice training to be delivered to all healthcare staff members to help improve communication with and service approaches for people experiencing MCN.

Reflections on the benefits and limitations of consultations

FLSE is aware that consultations provide an excellent opportunity for changing and influencing key decision makers. We have however noticed that the way they are being advertised for is inconsistent, irregular and at short notice. It can take the form of completing online questionnaires and surveys, and drafting reports in response to calls for evidence.

We understand that some organisations don’t have the resources or capacity to participate in the consultation process. Nevertheless, engagement in formal consultation provides one of the greatest opportunities for marginalised communities and voices to be heard in spaces which are not traditionally accessible.


Authors:

Michaela Rossmann, Systems Change Officer

For further information about Fulfilling Lives work in this area, please contact:

Michaela Rossmann, Systems Change Officer

michaela.rossmann@sefulfillinglives.org.uk

Rebecca Rieley, Systems Change Lead:

rebecca.rieley@sefulfillinglives.org.uk  

For more information sign up to our newsletter:

https://bht.us6.list-manage.com/subscribe?u=b43e61c311da27ad5194daffe&id=148d2193de