Written evidence submitted by The McPin Foundation (CMH0173)

Submission from The McPin Foundation, a mental health research charity that champions lived experience expertise in developing an evidence base to improve the mental health of people in communities everywhere.

The McPin Foundation believes research is done best when it involves people with relevant personal experience that relates to the research being carried out. We call this ‘lived experience’ and integrate this into our work.

We know that care for people with Severe Mental Illness (SMI) is fragmented. Many individuals are discharged to primary care and do not receive specialist mental health support. We have several studies, all with significant involvement of people with lived experience of SMI, aiming to understand why this is and provide practical steps to solve the problem. We use 18 here – in particular, PARTNERS and Community Mental Health Knowledge Exchange – as case studies.

Alongside these, we are involved in studies that are producing new and better treatments. Vital work, but they need a landscape that can accommodate innovation and new evidence. That is currently lacking, fuelling frustration with mental health science because, despite increased funding for research, we still do not have effective treatment at scale for SMI. In this submission we draw on work we are actively involved in and have referenced these studies specifically.

Executive summary

• We do know what good quality mental health care looks like - underpinned by a human rights framework, with emerging best practices over 20 years providing clear guidance - but UK institutions struggle to implement at scale what is required. Evidence from our research and others suggests there are significant barriers to putting in place recommendations at a systems level. These barriers are many, including: administrative; philosophical and value based; resource constraints; technical, such as IT systems and procurement processes; managerial/leadership challenges; workforce shortage; and lack of available therapies/services/supports. Demand for support is rising, but our mental health support systems are failing.

• Care for people with SMI is fragmented and many people fall through gaps, leading to poor outcomes including suicide and early death - there is a 20-year life expectancy gap for those diagnosed with SMI. A preventative strategy, including individual agency to self-care, is vital so that the wellbeing of people with SMI and their families are prioritised.

• Improvement in support and care for people with SMI requires a combination of things, underpinned by a holistic bio-psycho-social approach including: culture change in how systems are organised and led; movement away from ‘one-size-fits-all’ provision; addressing racism and inequalities built into mental health practices; cross-sector working and the integration of teams, including lived experience posts; breaking down of professional silos; involving carers and families appropriately; embracing transdiagnostic approaches; understanding the link between poverty and mental health; providing a compassionate welfare benefits system and nuanced understanding of the complexity of employment and mental health; and several other common themes.

• We must pause the rapid and unorganised cycle of reorganisation within our services. It fuels ‘moral injury’ and burnout in staff and prevents improved outcomes for people with SMI at scale. Systems need collaborative leadership practices that can make brave decisions to transform services locally, driven by place-based contexts and an overarching best practice evidence base that provides the building block components for good quality care. Local systems must decide how to implement evidenced-based practices for their populations.

What does high-quality care look like for adults with SMI and their families/carers?

High-quality care for people with SMI is not rocket science. We do know the key ingredients and have done for many years. For example, a recent model for child and adolescent provision, which we helped co-develop, is useful because, although not an SMI population, the building blocks are very similar and emphasise the need for a systems approach (Pryjmachuk et al 2024).

Our study with 12 women exploring decisions around medication choices when pregnant and managing SMI (Pinfold et al 2019) explained what the core ingredients of care need to be:

The current WHOLE-SMI study, funded by the NIHR and building upon PRIMROSE research led by UCL, has produced two infographics to explain what “high-quality care” looks like with a community stakeholder group we help to facilitate:

• The WHOLE-SMI project (research delivered in the northeast of England and North Cumbria) has worked with system leaders, practitioners, and people living with SMI to understand what is needed to enhance physical health and wellbeing for this population. Evidence-based physical health promotion services are still not widely available, meaning enduring health inequalities remain unaddressed.

• Physical health promotion services need to focus on promoting thriving and health-enhancing behaviours as opposed to solely monitoring and screening for risk prevention. De-medicalised terminology, proactive outreach, and flexible provision models will help with engagement.

Much of our work involves listening to people and learning from them as experts in their own care. Our storytelling project with 14 people living with psychosis recommended introducing storytelling into early intervention in psychosis services (see guide for practitioners). We heard about the following themes underlining how a person’s social and economic environment is intertwined with their mental health (My Story, Our Future report, 2020):

From the studies above and other research involving McPin, we suggest the key ingredients, as a solid starting point, are:

• Continuity of care. Although mostly disappeared, it includes the system providing continuity - if not from individual practitioners, then through digitised record-keeping. It promotes positive engagement, seen in EIP services (see EYE2 trial).
• Therapeutic alliances and building trust. Mental health is underpinned by relational practices with clinicians and practitioners (see PARTNERS2 programme).
• Shared decision-making that recognises the expertise that individuals have about their own needs and care preferences, covering medication choices, aftercare planning and when to access specific services such as employment support or a family education programme (see our work with KCL on advance choice documents).
• Choice of trauma-informed support and care so that more personalised provision is available with timely access to services and help when needed (including talking therapy) including in community settings (see our study on co-location).
• Good quality care planning at all stages, plus better communication and information sharing so that expectations can be managed and people with SMI are not let down or kept waiting in a void (see our work on carers and confidentiality from 2007).
• Physical health checks and follow-up care plans. Checks alone are not enough. People with SMI often need support to take action once conditions are identified, such as with the help of a peer support worker (see our work on peer support). There are also problems of diagnostic inequalities, known as ‘overshadowing’ (see our work with THIS Institute).
• Culturally tailored support that recognises the diversity of bio-psycho-social needs that people with SMI from across England and Wales present with, and how ‘one size fits all’ provision is not sufficient to meet those needs (see our work on COVID_19 and ethnic inequalities in access and quality of mental healthcare).
• Address underlying social determinants of mental health – poverty, discrimination, employment, education opportunities – because people with SMI have wellbeing needs requiring prevention and promotion strategies, which will also ultimately benefit everyone with poor mental health (see Framework developed with NIHR SPHR).
• Networks of support and self-care. Giving people with SMI agency to make decisions that support their own recovery, including supports outside of medical systems (see our work on personal wellbeing networks).
• Peer workers and peer leadership within all systems so that lived experience expertise is baked into community mental health care solutions across primary care, secondary care, voluntary sector and social care (see our reflection on peer support evaluations). Also work on epistemic injustice – how knowledge is valued and devalued by academia, policy makers and society (see our case study).
• Investment in well-supported workforces (skilled, supervised, trained, valued) to avoid moral injury, creating a compassionate healthcare system which benefits all (see below and our work on CMHF evaluation with University of Plymouth).

Case study 1: PARTNERS

We developed and piloted a primary care-based Collaborative Care model (PARTNERS) designed to improve quality of life for people with diagnoses of schizophrenia, bipolar or other psychosis, alongside academics at the Universities of Plymouth, Birmingham, Manchester, Exeter, LSE and Warwick.

Findings from the studies and recommendations for action complement existing initiatives by supporting systems to address the needs of those with SMI who move between primary and secondary care systems, so they do not fall into the ‘gap’. We were able to take the PARTNERS work and implement it in two NHS systems in a bid to embed and scale up this work.

We also looked at translation of findings to the new context of CMHF transformation work across Integrated Care Systems in England.

The PARTNERS model has several key components:

-          Person-centred, strengths-based approach with emphasis on collaboration between the service user and a Care Partner.

-          Proactive engagement and support.

-          Care Partners take a proactive, coordinating role to link service users to the right support. This means actively working across system boundaries linking with primary care, voluntary sector providers, social care and secondary mental health services.

All three elements are important for addressing both mental and physical health needs among people with SMI, underpinned by partnership and a strong therapeutic alliance, proactivity and outreach work.

Key insights gained from working across the community mental health system include:

• The kind of relationship and support valued by individuals with SMI is often not provided by specialist mental health or primary care teams
• Support for practitioners to deliver flexible person-centred coaching approaches is often not in place
• The importance of leaders across mental health, Voluntary Community and Social Enterprise (VCSEs) and primary care actively engaging in collaborative approaches to make their systems work better for people with SMI

“They’re [the Care Partner] more understanding about my illness. They’ve obviously read reports that I’ve suffered from what I’ve suffered, and it’s them giving me a little bit of hope, if you like, a little bit of belief that I can go out and accomplish a silly thing like getting a sausage roll and milk and tea and stuff like that. They give me that little push, it gives me that little bit of confidence that I so much need." Andrew, PARTNERS2 service user interview

Challenges included immature or weak links with general practices in newly transformed systems and a lack of proactive pathways into care for people with SMI, due to prioritisation of short interventions for people requesting support. There were also service re-organisations that prevented at-scale implementation.

Innovation in providing support for SMI must work across, and consider, three different levels of system complexity:

1. Service user-practitioner: Trust must be established, and a strong therapeutic alliance needs to be present. Lack of continuity of care is a threat.
2. Team: There needs to be a team culture that is supportive of new roles and open to different ways of delivering care.
3. System: This need to have a leadership culture that is supportive of change and innovation. New care programmes need committed champions in leadership roles who drive change in both values and practices. Alliances such as those forged in Somerset in Open Mind are a promising new model.

Challenges to innovation likely need to be carefully navigated at all three levels.

(For more info please see our briefing paper).

How could the service user journey be improved both within community mental health services and in accessing support provided by other services/agencies?

A key principle is that community services are underpinned by principles of compassion, social justice, human rights and addressing systemic inequalities that sustain poor mental health.

The journey will not only be through healthcare; community mental health services also consider employment, education and training, debt and financial health, social support and loneliness, meaningful activity, physical health, spirituality and faith, housing and more. This requires integrated systems, including the role played by the voluntary sector, to work with people with SMI to lead their own recovery.

Particular care needs to be given to:

• Understanding the person with SMI is the expert in their own care – and services should spend time and effort ensuring the individual (and their family/friends) are heard, understood, valued and treated with dignity and respect when creating treatment and aftercare plans.
• Following a public health model for SMI (as per CMHF) where no one is discharged but people move around a system getting timely and appropriate support from different agencies. Trusted assessments follow referrals so people with SMI do not have to keep being assessed and re-assessed (re-telling their story).
• Active waiting list management so people waiting for a service, referral or appointment are not left adrift and unsure of next steps. They have confidence that the system will deliver them a support and treatment package that helps their recovery.

We recently completed (June 2024) a small piece of work funded by NIHR Kent, Sussex and Surrey ARC working with young adult service users, supported by the CMHT programme. We carried out 28 interviews - eight people were interviewed three times and two people once each - to understand their journey through transformed care.

We have also mapped journeys through the CMHF. The first is what tends to happen and diagram 2 is an alternative:

We found that individual service user journeys cannot be discussed in isolation from system level practices. The reason people with SMI do not get joined up effective care is not because we don’t know what is needed, it is because the system cannot organise itself to provide the basics.

Has the Community Mental Health Framework been an effective tool for driving the delivery of more integrated, person-centred community mental health services? 

The CMHF laid out a clear set of ambitions to address gaps in care and create integrated place-based partnerships between voluntary, community and social enterprises and primary and specialist mental health care.

Bottom-up innovation in response to the CMHF has generated hope, as well as many new models and practices. What we have learnt more than anything is that changing the culture of large-scale systems is possible, but often slow. Moreover, it requires effective leadership, attention to detail for each new role or team, and a dedication to seeing both the system as a whole and how its different parts interact. Systems are complex, with multiple factors interacting.

Community mental health transformation is not a process that happens quickly – we believe it is likely to need 10 years of sustained effort. We observed evolving new practices being introduced alongside established structures and processes that are not necessarily disappearing.

Study 2: Community Mental Health Knowledge Exchange (CMHKE)

The CMHKE is a space to highlight the ways that the delivery of the CMHF is starting to drive innovation for addressing gaps in care and to generate integrated population- and place-based systems of community mental health care.

Foremost it aims to be a resource for those supporting sustained transformation in stretched systems. It was built based upon evaluations in six pilot sites from the Community Mental Health Transformation Framework 2019 roll-out, including a consortium of three pilot sites.

Some of the key ingredients appear to be:

• Collaborative leadership: As detailed above and including lived experience leadership roles.

• Culture change: This appears to be needed in relation to risk. Working needs to be flexible rather than driven by protocols, and led by needs as much as diagnosis or diagnostic thinking. Changes in use of language, promoted by leaders, also appears to be important.

• Investment in new posts: Resources are invested in new frontline staffing groups. This is not back-filling previous staffing positions but creating new capacity through new roles.

• System support for staff: Supervision is an essential part of the programme, including different partners sharing their support systems – cross-organization learning and collaboration.

• Learning system: Regular review and feedback needs to be built into ways of working. Understanding and acknowledging complexity, uncertainty, system stress (and distress) in a continually evolving system is critical. Reflective practice can be built into staff development, team ethos and quality improvement processes.

• Communication: Many people remain unclear about ‘transformation in practice’, but alongside these gaps are investments in events (learning sets, open days), videos and local newsletters to tell the story of all the efforts to integrate provision through the transformation investment. It is an important area and needs sustained prioritisation.

• Visible change programmes:  Within the layers of transformation, key task and finish groups can address local or national priorities such as work on inequalities, or around carer needs, culture change related to risk, and the phasing out of the Care Programme Approach. These can become mechanisms for openly addressing vital and complex areas of work where disagreements often surface on both philosophical and practical grounds.

As Richard Byng, Professor in Primary Care Research at University of Plymouth, said on the PARTNERS study:

“PARTNERS research has revealed that while the Community Mental Health Framework provided further resource to fulfil NHS Plan ambitions to ensure all individuals with SMI are provided with seamless, coordinated, person-centred care to improve wellbeing and address excess mortality, the steps for achieving this are, in most systems, not in place."

Finally, we would highlight - as we did in our report for the East London NHS Foundation Trust (see page 39 onwards) - that there are a series of contradictions in the CMHF linked to diagnosis, risk management and a public health versus specialist pathway model. Without addressing these, transformation will struggle. 

Overall recommendations:

• Fix our systems: Focus on provision of known evidence-based practices within continued implementation of the CMHF, including addressing inequalities in access and care, and tackling barriers in multiple systems to achieve a compassionate community mental health support system.
• Local integration: Transformation will take time, but local systems should be able to evolve and adapt to the needs of their populations, building alliances and new balanced systems of care across NHS, voluntary sector and social care.
• Embrace complexity: Living with SMI is far more than a health challenge, impacting social, cultural and economic areas of people’s lives – so holistic, person-centred, preventative approaches are vital.
• Experts by experience: Collaborative leadership includes coproduction and lived experience leadership positions.

February 2025