Involving people with lived experience in strategic decision-making

The context

This topic is important because local authorities and public bodies across the four UK nations are trying to involve people with lived experience and carers, in commissioning and decision-making processes.

Involving people can help to create support provision that helps people to live their best lives. There are different ways to engage people with lived experience in decision-making processes such as peer research, co-design, inclusion in committees, working groups, or via consultation. Each of these approaches is characterised by different levels of involving people with lived experience.

IMPACT Factfile

Discussion materials

Before the first Network meeting, IMPACT carried out an evidence review of research, lived experience and practice knowledge on involving people with lived experience in strategic decision making in social care.

What is “lived experience”?

People with lived experience have a personal knowledge of an issue through “direct, first-hand involvement in everyday events rather than through representations constructed by other people” (Chandler and Munday, 2016). Here, we are specifically focusing on the lived experience of using a social care service.

Why does it matter to involve people with lived experience in decision making?

This topic is important because local authorities and public bodies across the four UK nations are trying to involve people with lived experience and carers in commissioning and decision-making processes. Involving people can help to create support provision that helps people to live their best lives.

There are different ways to engage people with lived experience in decision-making processes such as peer research, co-design, inclusion in committees, working groups, or via consultation. Each of these approaches is characterised by different levels of involving people with lived experiences.

What is co-production?

One approach to involving people with lived experience is co-production. It is distinct from other approaches because it requires a power shift in the decision process from being totally top-down to a more negotiating and bottom-up process.

Co-production can be particularly useful in the context of commissioning social care – that is how local authorities choose and implement social care in the community. For more information on commissioning specifically, check another network focused on ‘commissioning differently’.

What are the barriers to co-production?

Though there’s increasing interest in co-production, many barriers and bad practices still remain. For example, the involvement of people with lived experience can often just be a tokenistic exercise, rather than a real commitment to working together (Ayiwe et al., 2022; Beresford et al., 2023).

Other limitations include problems in power distribution, a lack of training to facilitate equal participation during meetings, and barriers to paying people with lived experience for their time.

Context across the four UK nations

The Care Act 2014 introduced the concept of co-production in social care across the four UK countries. However, the ways this is implemented is quite diverse across the UK on the basis of the governance framework and commissioning processes.

  • The importance of involving people in health and social care decision-making is acknowledged in the white paper ‘People at the Heart of Care’ (2021)
  • The Health and Care Act 2022 invites a more collaborative approach to commissioning
  • However, there are not national guidelines so each local authority is using a custom approach
  • The Social Services and Wellbeing Act 2014 provides a legal framework for transforming social services and a clear definition of co-production
  • There are national guidelines and a code of practice for co-production
  • Involving people with lived experience is facilitated nationally thanks to the human rights framework
  • Better integration of health and social care was co-produced and then integrated in legislation in 2016
  • People with lived experiences take part in the design and development of the National Care Service (NCS)
  • However, there are many inconsistencies with the application of co-production across the country
  • Health and social care have been fully integrated since the 1970s
  • Co-production in health and social care is one of the main goals of the Department of Health in Northern Ireland
  • The 2017 ‘Power to People’ review reiterated the importance of collaboration and service users’ involvement
  • However, government instability and disagreement on power sharing have resulted in limited policy changes
Discussion Materials (PDF)
Easy Read Discussion Materials (Word)

Network meetings

Networks are meeting across the UK, co-ordinated by:

In England:
Changes Plus
ARC UK
Northamptonshire Carers
Birmingham City Council
Camden Council
Disability Sheffield 

In Scotland:
Thera

In Northern Ireland:
Parent Action NI
DHCNI_Digital Health and Care Northern Ireland

In Wales:
Jo Clough

Key themes that emerged in the first Network meeting were:

1. Educating on co-production

  • Co-production is not understood well enough. There are discrepancies across people with lived experiences and professionals.
  • Different meanings are attached to co-production.
  • A precise and shared understanding is key.

2. Developing confidence and fighting stigma

People with lived experience need documentation and training to develop self-confidence. Participating in co-production can be challenging if people with lived experience don’t value their own opinions and expertise.

Additionally, the stigma surrounding people’s needs must be addressed. For example, it is unacceptable that people who stim feel judged when taking part in discussions. This is important because there is a risk that the same people will take part in co-production.

3. Accountability and impact

There needs to be accountability mechanisms to make sure that co-designed and co-produced ideas are implemented and maintained.

Those in charge of decision-making should also be held accountable if they act as gatekeepers, for example, if people with lived experiences are discouraged from speaking. There cannot be accountability without mechanisms and people in place to measure the impact of co-production.

4. Tokenism and burnout

Many people with lived experience have been tokenised when taking part in decision-making. This means they are not given the power to make decisions when they take part.

As a result, they may lose faith, become tired, and experience distress or frustration. For example, regularly sending feedback about issues and never receiving acknowledgement is a regular problem that negatively affects people with lived experience.

5. Money

Having a say in how money is spent is a key part of co-production and involving people with lived experience in strategic decision-making about social care.

Money also matters because people with lived experience can benefit from being paid for their time – this must include planning to mitigate the impact on benefits.

6. Invisible disabilities

Invisible disabilities and neurodiversity can often face a lack of consideration in comparison to visible disabilities when it comes to co-production.

Key themes that emerged in the second Network meeting were:

Simplify strategic commissioning

People with lived experience are gatekept from strategic commissioning because it is too complex. The process must be simplified, made more flexible, open and responsive.

Beyond service users

Language is important, especially if it is patronising as a consequence. People with lived experience who take part in co-production or strategic decision-making are not just service users, and they don’t necessarily use services anymore than anyone else.

Reasonable adjustments

Perception and stigma around reasonable adjustments must be addressed. Often it is seen as awkward or causing trouble, and there is a lot of shame around self advocacy.

In addition, there is a need for an adequate setting and timeframe to formulate reasonable adjustments. For example, reasonable adjustments cannot be explained on the spot, or in a group setting. This is a barrier to involvement in strategic decision-making, specifically for neurodivergent people with lived experience.

Adequate funding

Funding cuts are a fundamental barrier to co-production and involvement. This means that change is needed locally, for example with regards to commissioning, but also nationally.

Central government must adequately resource social care otherwise, the impact of co-production and involvement will remain very limited.

Masking

People with lived experience are often congratulated or celebrated if they “mask” or hide their needs or complete tasks without asking for reasonable adjustments. Overpraising statements are disrespectful and should not be the norm.

Meeting needs holistically

People with lived experience have said that organisations working together to deliver social care lead to better outcomes.

An integrated and holistic approach results in better cooperation and communication between different organisations. They can’t simply exchange emails about the care they are responsible to deliver together. This means a better integration of health and social care.

Global minority

People with lived experience from minority groups face specific challenges. They are often left out of conversations and shut out of services due to the lack of interpreters.

Outreach often fails to actually attend and engage in their communities so they miss out on opportunities to take part in co-production or strategic decision-making.

Reaching crisis point

One other issue identified was how often needs are left unaddressed until crisis point is reached. This is also an issue affecting most vulnerable moments: for example hospital discharge is regularly mentioned in networks as an example of dysfunctional care.

Doing co-production close to home

Co-production and involvement in strategic decision-making is often organised in local authority buildings which may not be conveniently located or feel intimidating. Being able to organise in community buildings closer to home and have a choice in how to chair meetings is needed to improve co-production.

Caring relationships

People with lived experience should also be involved in decision-making and co-production to affect carers’ needs.

This is because everyone involved in caring relationships should have a voice.

Key themes that emerged in the third Network meeting were:

Independent advocacy

In the continuity of increasing self-confidence and skills, independent advocacy is key for people with lived experience to take part in key decision-making. For example, independent parent peer advocacy can support parent carers in accessing services they need and in formulating feedback.

Digital resources

Digital resources can be useful to support co-production. However, it’s important to recognise that co-production requires a great shift in power balance. This means that digital resources for training can be too limited as a format. For example, attending webinars is most likely insufficient to engage decision-makers in the shift required with co-production and to change attitudes.

In their fourth Network meeting, members finalised their action plans for what they want to see changed. Here are the concrete actions they hope to take:

  • Create a toolkit/guide for doing co-production about how to improve crisis management
  • Create a video to promote co-production values
  • Produce a short film about accountability
  • Produce a leaflet on hospital discharges including accessing services and advocacy
  • Better information about independent parent peer advocacy using short animations