Written Evidence submitted by Making Positive Moves (CMH0110)

Making Positive Moves summary

Our aims

'Transforming Care’ is a NHS England programme to support adults with an intellectual disability (ID) living in inpatient settings, such as assessment and treatment units, psychiatric/mental health hospitals and forensic units, to move into their own homes. There has been limited evaluation of Transforming Care from the perspectives of people with ID. In our ‘Making Positive Moves’ study, we wanted to find out what factors can support people to live in their own home and what may make it more difficult.

The Making Positive Moves (MPM) research seeks to explore first hand experiences of transition from inpatient to community living from the views of people with ID and Severe Mental Illness (SMI). Specific interest was paid to what enabled them to maintain their mental health whilst living in the community, to prevent readmission.

All the research participants had previously had an inpatient mental health admission under the mental health act. Since leaving hospital, most of the participants have been able to successfully manage their mental health through support from community mental health services, in addition to the support received from social care and support staff.

What did we do?

We interviewed 22 people with ID who had moved out of inpatient settings and had lived in their own home for at least six months. We then spoke to 17 of them again approximately one year later. For some people, a key support person of their choice also joined in some interviews.

A Grounded Theory approach was used to analyse the data and create a model about the findings. The following four key themes were identified from participants responses.

What did we find out?

The people we interviewed told us that their lives were better since leaving hospital and they would do anything to stay out of hospital. The model shows four key foundations that people need to build and maintain with their support team to enable them to live their best lives.

1. Feeling Safe in My Relationships e.g. feeling cared for, being listened to
2. Belonging and Keeping Busy e.g. having a routine, engaging in meaningful activities, sense of belonging in the community, right level of ‘busyness’ for each individual
3. Making my own choices e.g. making choices about their own lives, valuing support to make decisions
4. Feeling happy with who I am e.g. seeing themselves in a more positive light, other people reflecting on them positively

Care providers can best facilitate strong foundations by ensuring that people with ID are included in selecting their staff team, have a thorough transition into their new home as well as providing support staff with appropriate pay and training and reducing the use of bank workers. People’s foundations should be regularly reviewed to check for cracks and to ensure they continue to develop and strengthen, allowing the person to live their best life.

What does this tell us about providing high-quality care for adults with intellectual disabilities and severe mental illness, across community mental health and other support services?

The findings of the MPM research have highlighted the necessity for consistent, sustained, interagency support. The value of creating safety in people’s relationships cannot be under-estimated in providing a truly person-centred experience for those accessing community services. Through developing a rapport and understanding of the individual, we are able to move beyond medical or psychological approaches and consider the person holistically, to create personalised care plans tailored to individuals needs and preferences. Through bespoke, high-quality, joined-up care, barriers to and delays in receiving support can be minimised, resulting in improved outcomes for people with ID & SMI across all domains of life. These factors are demonstrated through each section of the model as outlined below.

1. Feeling Safe in My Relationships

Participants described the necessity of feeling known and understood by the people who are supporting them, as well as the importance of feeling listened to. This sense of safety underpinned the other foundations which support people with ID & SMI to live their best life in the community and helped to prevent future mental health hospital admissions. It was clear that inconsistencies in support resulted in decreased wellbeing as described by many of the participants. This highlights the importance of consistency for the development of secure relationships between people with ID & SMI and those providing support. This is in line with other research demonstrating the benefits of therapeutic relationships between care providers and family members (McCausland, Murphy, McCarron & McCallion, 2022) and within primary healthcare settings (Montag, Freeman & Scholtes, 2024).

2. Making my own choices

Participants described an increased sense of freedom and more decision-making opportunities following their transition out of hospital. This provided participants with a greater sense of control over their lives through regaining power to make everyday decisions. However, challenges were common where participants had been unable to develop therapeutic relationships with their staff teams. Participants described seeking guidance and scaffolding of decision making from support workers. Where this was achieved, participants were able to learn their limits through positive risk taking. This demonstrated the importance of care staff training and experience of person-centred approaches to broaden skills, enable choice and increase independence and agency.

3. Belonging and Busy

Participants described the importance of feeling a sense of belonging, both through acceptance within their own home and the communities in which they engage. This was facilitated through access to activities of interest, providing opportunity for human connection. Many participants also aspired to secure paid employment in the future and undertook voluntary roles providing them with work experience. For participants that had few opportunities to gain this sense of belonging, there was a greater risk of placements breakdown and readmission.

4. Happy with who I am

Participants described the damaging impact that their time in hospital had on their sense of identity, self-worth and emotional wellbeing. Participants described how, through being able to develop relationships with others, make choices about the activities they participate in and engage with their communities in a way that they felt proud of, they were able to rebuild their sense of self. Many participants described being able to build a new, positive narrative about themselves, to replace the negative narrative which they had developed whilst living in hospital.

What did we learn from the families/carers of people with intellectual disabilities and severe mental illness?

Alongside the main MPM research we have also completed a smaller study with the families of individuals who would not be able to participate in the main project. This cohort is people with severe and profound learning disabilities (SPLD) and the project involved interviewing their families about the experiences of people with SPLD & SMI being in hospital. This research also identified the damaging impact of hospital admission and the need for safety in people’s relationships as a foundation for helping people to remain out of hospital. A key finding of this research highlights the importance of considering family/carer expertise when supporting individuals who lack capacity in making choices and through the process of making best interest decisions (Stock et al., 2024).

Despite the experiences of each participant being vastly different in nature, the significance of these 4 foundations remained the same. Those who demonstrated gaps in their support within these areas, also experienced more restrictions in their everyday lives and an increased risk of return to hospital.

What does this mean for mental health services, social care, the third sector and local government when working collaboratively to improve mental health outcomes?

Following conclusion of this research project, we have been working with the participants and other stakeholders to develop a toolkit to support the use of our model and monitoring of its ongoing implementation. The toolkit will encourage an interagency approach by recommending that the resources are used by the person and their support network. Some of the people that participated in developing this resource have already shared with us the positive impact that it has had in their own lives. We are monitoring the impact of this work through the use of an online questionnaire and co-production workshops.

The toolkit encourages support networks to take a person-centred approach through recognising the needs and goals of each individual and acknowledging that everybody’s best life looks different. It does this through treating the person with ID & SMI as experts in their own lives, listening to their wishes and preferences and treating them with dignity and respect even in instances of unwise choices. Continuity of care from all members of the support network including staff teams, social care and health professionals is recognised as fundamental to improving outcomes in health and wellbeing. In combination with information sharing across agencies, through multidisciplinary working with clear channels of communication, frequency of input is reduced, and the need for support from secondary services is minimised. This is often evident in learning disability services, through the utilisation of network meetings and joint appointments, and was fundamental in supporting people with ID & SMI when rebuilding their lives following discharge from hospital.

What does this reveal about the blockers and enablers to integrated person-centred community mental health care?

The findings show that many instances where there was a high level of staff turnover or the absence of a permanent staff team, this was accompanied by a lack of necessary skills and knowledge for supporting individuals with ID & SMI. This was compounded by challenges in recruitment and retention of care staff, often related to the diminished value placed on workers evident in low wages, a lack of career structure and opportunities for progression, and an absence of wellbeing support that is commonplace in caring roles. As consistency of staff was one of the most significant factors in enabling a sense of safety in relationships for the study participants, a significant increase in risk for placement breakdown and readmission was seen as the result of high staff turnover for the people with ID & SMI.

Other blockers experienced by many of the participants related to the time taken, and delays, in receiving suitable provisions. These delays were evident across all areas of care and support. Participants described challenges finding suitable accommodation, often related to current housing practices or limited housing options available within their locality. This resulted in extended hospital stays, or in some cases readmission, where the accommodation provided was incompatible with individual needs. Other delays were related to difficulties securing necessary funding for support and establishment of care teams, as well as acquisition of necessary equipment to enable someone to live in their own home. Access to transport or limited opportunities to engage with meaningful activities hindered many participants from being able to live fulfilling lives after leaving hospital. Some participants also experienced challenges in accessing timely healthcare appointments, resulting in a need for more intensive intervention, sometimes through readmission. This was exacerbated in cases where there was a breakdown in communication between agencies resulting in a lack of joined-up care.

Where participants shared positive experiences, there were common factors enabling integrated person-centred mental health care. Participants spoke of the authentic relationships shared with support staff, and respect shown towards the person with ID & SMI to make choices. This was evident in personalised, person-centred care plans, which consider the needs, preferences and goals of the individual. These authentic relationships provided confidence for the person with ID & SMI to ask for support without fear of judgement and enabled early intervention where necessary. They also made it possible for staff to provide the right level of support, meeting each person where they were at and being responsive to changing levels of need across the lifespan.

Furthermore, provisions to support the wellbeing of care staff provided additional enablers to ensuring high quality care. Through regular team meetings and reflective spaces, staff were able to seek guidance from, and share best practice with, one-another. This resulted in increased staff wellbeing as well as improved care for people in receipt of support.

The provision of high-quality, up-to-date training for support staff and professionals enabled those supporting people with ID & SMI to be able to adapt their approaches in response to the needs of each individual. In combination with multiagency working, drawing on the expertise of each profession, networks were able to ensure that correct provisions were put in place efficiently to support people with ID & SMI to be able to live their best lives in their own homes.

How can this information be used in practice to support people with Intellectual Disabilities and Severe Mental Illness?

MPM provides a summary of experiences of good/innovative care for people with ID & SMI. The model provides an example of good practice, and our research shows the real-life impact that having strong foundations can have in preventing readmission.

Following completion of the research we have developed a short animation to illustrate the research and its findings in an accessible format (Making Positive Moves, 2024). We have also been hosting co-production workshops with people with lived experience of being in hospital and their support networks, to share the model and explore how this would be most useful in supporting people with ID & SMI. Through the workshops we have been developing a toolkit to support people to use the MPM model to check in about their foundations and to identify any cracks which might need addressing to reduce the risk of placement breakdown/ readmission into hospital.

Some of the people attending the workshops reported to us that they had started to use the model in their own lives, and it had led to important changes to how they were supported. One person talked about how the conversations about safety in their relationships had led to positive changes in their care and support and increased the likelihood that they would be able to feel more confident and comfortable in their home.

Both the research and the workshops also highlighted the barriers that many networks face when supporting people with ID & SMI. Without addressing the blockers mentioned above, there will continue to be limitations to the support accessible to people with ID & SMI. It was clear that wider systemic change is needed for people with ID & SMI to be able to live their best lives.

References

Kajaria-Montag, H., Freeman, M., & Scholtes, S. (2024). Continuity of Care Increases Physician Productivity in Primary Care. Management Science, 70(11), 7943–7960. https://doi.org/10.1287/mnsc.2021.02015

Making Positive Moves. (2024, April 24). Making Positive Moves Animation Video The Research Findings [Video]. YouTube. https://www.youtube.com/watch?si=bBwc2Af9AH6JiZ6b&v=Oy_bJreYte8&feature=youtu.be

McCausland, D., Murphy, E., McCarron, M., & McCallion, P. (2022). The potential for person-centred planning to support the community participation of adults with an intellectual disability. Journal of Intellectual Disabilities, 26(3), 603–623. https://doi.org/10.1177/17446295211022125

Stock, M., Mulholland, M., Cooper, V., Head, A., Prowse, S., Wellsted, D., Mengoni, S. E., Rhodes, L., & Ellis‐Caird, H. (2024). ‘The whole thing is beyond stress’: Family perspectives on the experience of hospitalisation through to discharge for individuals with severe learning disabilities and complex needs. British Journal of Learning Disabilities, 52(4), 633–643. https://doi.org/10.1111/bld.12595

February 2025