Long term conditions framework: consultation analysis

18. Question 16

How can the Scottish Government involve communities in preventing or slowing the progress of long term conditions?

The vast majority (80%) of respondents answered Question 16, and the main themes that emerged from these responses were:

• theme 1: increased investment for prevention and early intervention
• theme 2: co-design, co-production, and capacity building

Theme 1: Increased investment for prevention and early intervention

Many individual and organisation respondents identified increased investment for prevention and early intervention as a mechanism to involve communities in preventing or slowing the progress of long term conditions. The main points included that many respondents:

• called for increased investment in community resources and infrastructure to provide financial and other support to organisations working in this space to do more, as well as to harness the knowledge, experience and expertise that existed in communities. Funding challenges faced by third sector organisations were reiterated which has implications for organisations’ ability to increase the involvement of communities in preventing and slowing the progression of people with long term conditions. Respondents also highlighted recent closures of community facilities and the need for sustainable investment to protect local infrastructure to help ensure consistency and continuity of service provision
• highlighted the importance of tailored and inclusive awareness and education programmes to involve communities. This included public health campaigns to promote healthier lifestyle choices and behaviours, support a prevention and early intervention approach, communicate relevant legislation to the general public and raise awareness of the risk factors associated with long term conditions. Awareness and education were considered crucial across all stages of life – starting from a nursery and school setting to embed healthy and preventative behaviours from an early age
• called for greater investment in workforce development of community-based health professionals, for example community link workers, to allow expansion of their existing and valued services, such as social prescribing, to involve communities and reduce pressure and demand on primary care

A respondent quote to illustrate theme 1 is provided below.

“The erosion of community infrastructure (local halls, libraries, and meeting spaces), has significantly reduced opportunities for people to come together, share knowledge, and support one another. Peer support groups often struggle to find accessible and affordable venues. This lack of space contributes to social isolation and limits the potential for community-led innovation.” Scottish Association of Social Work

Theme 2: Co-design, co-production and capacity building

Many respondents, particularly organisations, emphasised the importance of the co-design and co-production of services as well as capacity building support to involve communities in preventing and slowing the progression of long term conditions. Points raised under theme 2 can be grouped as follows:

• co-design, co-production and participation
• community empowerment and capacity building

Co-design, co-production and participation

Many respondents emphasised the importance of adopting co-design and co-production of services as a key mechanism to involve communities in preventing and slowing the progression of long term conditions. These respondents highlighted the importance of meaningfully integrating the views, knowledge and expertise of people with lived experience of long term conditions (and organisations that support them) at all stages of service planning, design, delivery, monitoring and reporting. Building in monitoring and feedback loops from the outset was considered critical to ensure services remained responsive and accountable to people with long term conditions. They said there should be a ‘genuine’ commitment to collaboration where communities were treated as equal partners.

Some respondents pointed to existing mechanisms used by the Scottish Government to involve communities in the design and delivery of health and social care services, such as citizen, peer and group advocacy (for example, citizen panels), public social partnership models, and community-led health and social care models. Mixed views were provided on the effectiveness of these – some valued these models and considered them impactful for community involvement while others described them as ‘inadequate’ or ‘tokenistic’.

Respondents considered it important that diverse participation underpinned any co-design and co-production processes – to ensure that involvement extended beyond community leaders to reflect a diverse mix of people within marginalised and underrepresented groups (including intersectionality).

There were calls for the Scottish Government to further invest in the social infrastructure to enable this to happen. Suggestions included:

• the provision of incentives and remuneration for community involvement
• engaging and building strong relationships with community leaders to build trust and deliver effective outreach, particularly in communities and with population groups that may not engage with traditional healthcare services
• greater flexibility to improve access for communities to be involved – for example, community involvement or services in non-traditional settings and flexible meeting times

Respondents identified the range of benefits that could be derived from adopting a co-design and co-production approach to community involvement, including that:

• this would be consistent with a human rights based approach to participation
• services would be designed to meet the needs of people with long term conditions
• it could (re)build trust and stronger relationships between communities and the Scottish Government

A respondent quote to further illustrate the points raised above is provided below.

“There is a need for more participation of children and young people to be more effectively facilitated across health policy in Scotland – a citizen panel approach is unlikely to fulfil this.” Children and Young People's Commissioner Scotland

Community empowerment and capacity building

Many respondents, particularly organisations, identified a need for greater capacity building support to help empower/involve communities in preventing and slowing the progression of long term conditions. These respondents highlighted the important role of the wide range of organisations and partnerships that regularly undertook this type of activity – they were viewed as key enablers of community involvement which could be further built on and developed.

These respondents also highlighted the role of local community organisations and partnerships in providing safe and welcoming physical spaces (such as community centres) and resources for community involvement – this was seen as a simple and effective way to facilitate and build capacity within peer support networks, self-help groups and community led support – and which would be supported to become self-sustaining over time.

Peer support networks were considered particularly useful mechanisms for community involvement, including for reaching and engaging underserved communities and groups. There were again calls for sustainable investment to help these networks to grow and expand their reach and to enable organisations to train more peer educators with lived experience of long term conditions.