Commissioning self-advocacy as a basis for effective co-production

Partners in Care and Health convened a reference group of council commissioners to learn about the different ways self-advocacy is commissioned, across the country. Partners in Care and Health, with support from Learning Disability England, also convened a round table discussion involving self-advocates and council commissioners to explore the benefits of self-advocacy when it works well, what some of the barriers are and how to overcome these. Thanks are extended to Lewisham Speaking Up, People First Dorset, Sunderland People First and My Life, My Choice, Oxfordshire, who supported this event. The commissioners reference group involved commissioners from Staffordshire, Gateshead, Trafford, Cumberland, Milton Keynes, Bedford, Luton, Telford, Lewisham, Dorset, Sunderland and Central Bedfordshire.

This resource considers the benefits of self-advocacy and provides examples of how self-advocacy is funded by different councils in England, to support and encourage commissioners to collaborate with their citizens to develop local models of self-advocacy for people with a learning disability.

Different terms may be used such as peer advocacy, peer to peer support or self-advocacy. Some support groups also support people to advocate for themselves and their peers. In this resource, the term self-advocacy is used to cover all types of groups that support people to speak up or advocate for themselves and other people. Self-advocacy services are usually group services, with a facilitator or support worker. Unlike some types of advocacy, it is not a statutory requirement to have self-advocacy groups in every council area. Members of the group are usually supported to decide what subjects they wish to discuss and make representations about, so that the group is both person-centred and person-led, by the members of the group. In advocacy services, the support worker role includes making sure that each person has the opportunity to contribute, and that the group agrees some ground rules to ensure that the principles of the Advocacy Charter are adhered to.   

Experience

Self-advocates have told us that for them, self-advocacy is about:

• power and the belief that you can do it
• people doing things for themselves (not having others doing it for them)
• being more independent
• speaking up for themselves
• learning how to do things for themselves
• working together with your peers to make things happen
• speaking up together: get heard; not pushed from pillar to pillar
• claiming your rights
• getting your voice heard so you don’t get left out.

Self-advocates tell us that self-advocacy groups can:

• provide training to give skills and information, like travel training, so we can get anywhere
• create a “family” and be welcoming, so we can feel like we belong,
• go out in groups and enjoy ourselves, and do things we might not have without the others
• provide support in an accessible way
• build confidence
• giving people the power
• pay people and provide opportunities
• use people’s experience
• get money in to help us run the projects
• give us the power to find our own ways of doing things
• help us recognise things that are not right and to challenge things.

What does self-advocacy help people to do?

Self-advocates tell us that with support, they can:

• lead their own organisation, make decisions about how the charity’s money is spent, and what campaigns to set up or get involved with
• get involved in co-production and speak to the media.
• represent the charity and get recognition for that (like awards)
• join in things and have fun.
• share stories, including problems and successes.
• campaign to make things better for people
• help with research and quality checks
• get paid
• solve day to day problems, such as housing issues
• train people
• help with easy read.

Some people feel that local independent advocacy groups can sometimes retain their link to the local place better than national organisations.

The impact of self-advocacy on people who are involved

Some people take time to find their place in a new group, so some people may come along once and then it might be a while before they come along again. Self-advocates have described that when they first made their contributions to a discussion, they felt listened to by their peers, understood by them, and respected. This made them feel empowered. People who attend feel that others they meet at self-advocacy and speaking up groups understand where they are coming from as a person with a disability. They recognise that together they can come up with solutions to make things better, to improve things for people, including for future generations of people with disabilities. Some people might feel a bit shy at first, but over time people find they can get up and do things that they didn’t know they could do. They gradually get more confident and feel more able to talk about things including to groups of people.

Another benefit is that people start to make friends and can feel less lonely. Some described it as feeling a bit like a family. This can be a particular issue when people leave school or college and quite often stop seeing people they’ve been friendly with for some years. The grass roots nature of local self-advocacy groups means that people are looking out for each other, and start to notice if someone hasn’t been around for a while and take an interest in their wellbeing, getting in touch to see if they are OK.

As people gain a sense of belonging, they start to feel proud of what they’ve achieved together and this has a really positive impact on people’s wellbeing, both mental and physical wellbeing. It makes people feel good about themselves, and in turn believe in themselves and their ability to find solutions. It can therefore act in a preventive way because they may be able to solve issues for individuals without them needing more services. Help and support from the council commissioners means they can in turn help the council.

Having opportunities to take leadership roles, like chairing meetings means that self-advocates can gain skills they can use outside the self-advocacy group, for example, in meetings with representatives from the council, health and other organisations. This can give them opportunities to meet people they might not otherwise meet. In areas where there is a learning disability partnership board, self-advocates have been able to ensure they play a full part and represent the views of their peers.

Self-advocates told us that developing skills (as well as confidence) in public speaking can take some time and practice. The more you do, the more you learn and the better you get. They explained that learning is a really important part of self-advocacy and not just learning the skills to speak well. They explained that they had learned about new subjects as they helped others or campaigned on different issues. This meant that self-advocacy groups support personal learning, growth and development as individuals and this in turn results in fantastically involved and responsible citizens in the council area, which in turn helps commissioners.

Advocates told us that in their experience it works well when there are strong relationships, communication and trust. This means that self-advocates and commissioners can have open and honest conversations that are straightforward and respectful. This means that even if the conversations need to be difficult, they are recognised as important, and self-advocates are treated as equals with commissioners. For those self-advocacy groups that do have commissioning from the council, it was recognised that they were fortunate, as this is not the case in all council areas.

Where it works well, commissioners come along to self-advocacy or speaking-up group meetings to see, first hand, what they do, and how and why it works, and to join in the conversations with self-advocates. Self-advocates said it can be useful to have guidelines, in writing, about what is expected of both commissioners and self-advocates, so that people can check what is expected of each other, and check in from time to time to make sure they are still “on the same page”. People First Dorset also identified that it is important to have some continuity and handover when commissioners leave and are replaced.

In some areas, a self-advocacy group may be the only local group that is run and led by people with a learning disability. Commissioners who invest in the services appear to value the fact that they are paying to get the voice of people with a learning disability in a way that is managed and structured. Although it can take time to build the involvement, groups that have been in existence for some years now have good “reach”, and through groups, events, conferences and mailing lists can involve 300 – 400 hundred people a year, and get their voices and feedback to the local authority or health about what's going on. And it should be a two-way conversation, when commissioners and other representatives of the council or NHS engage with the groups on a personal level. Then they can get to know each other, actively listening to each other and respecting each other as equals.

Some of the self-advocacy groups have good evidence that for every £1 spent by council commissioners on their service to provide core funding, they are able to generate more funding from other sources. This represents good value for the council, with self-advocacy groups reporting that they have been able to triple the amount the council provides, in some cases bringing in money from grants or trust funds from outside the area.

When a council, the NHS or other organisation wants to do some co-production work to develop a service or a policy, self-advocacy groups can be invited to support the organisation with the work, on a project basis, supporting their members to take part and feed in their expert views. This can also generate additional funds for the self-advocacy group, meaning the core funding does not need to be too high. Recent research by the Henry Smith charity and Social Finance published in February 2025, showed that for every £1 invested in non-statutory advocacy, including self-advocacy, an estimated £12 was saved (£7 for the NHS and £5 for local authorities).

People First Dorset gave the example that some quite senior managers who had worked with them in an official capacity sometimes stayed involved, afterwards, in a voluntary capacity (a lead commissioner and a council chief executive), as they recognised and valued the relationships and the contribution that self-advocacy makes to the community. 

Self-advocates told us that it was important to have fun as well. Some of the topics dealt with are very serious and can feel quite difficult, so it is important to have times that are enjoyable and nurture people, so that people have positive experiences, as well as resolving issues.

Through the learning and development inherent in self-advocacy groups, you end up with fantastically involved, active citizens in your area which is helpful for councils. 

By investing in and working with self-advocacy groups, councils benefit, in turn, from self-advocacy as a foundation for their co-production work. In turn, the council area gains from having informed contribution to co-production, meaning that services and policies are more likely to be “right first time”, needing less adjustment and re-work, after they have started. 

There are wider benefits to the council of self-advocacy contributing to the local area. In addition to contributing to co-production projects, self-advocacy groups are able to take on projects to raise awareness among their peers to promote both physical and mental wellbeing. This has included awareness for both people with lived experience and their care and support staff about symptoms to look out for. Examples include the Be Cancer Aware and Be Screening Aware projects. They are also able to support empowerment through art, and provide drop-in sessions giving advice, guidance and signposting and a social safe place for people to come to, that in turn reduces social isolation. All of these examples contribute to the prevention of needs that may otherwise need to be met by social care or health services. 

Sunderland People first reminded us that people with a learning disability and autistic people face more health issues than non-disabled people. This may be due to things such as communication barriers, resulting in people not accessing the NHS at an early stage. Many issues are caused by lifestyle and by promoting healthy living and support for people to live successfully in the community, it can relieve the pressure on public services and public money.

There are also economic benefits to the area when self-advocates are able to get jobs. Some self-advocacy organisations, where they have enough funding, use a model where they employ their self-advocates. Others may attend speaking up groups or other events that are organised by the paid self-advocates. In other circumstances, people have been successful at getting jobs elsewhere. Self-advocates reported that people who are in employment usually lead more healthier lives and rely less on public services because of this. As they have more money, they are able to spend it in their local area, participating to the local economy. Self-advocacy groups can also use other community venues for some of their delivery, and this in turn can support another not-for-profit company in the local area.

Sunderland People First also gave examples of how self-advocacy groups can champion and provide accessible information so that people with a learning disability and autistic people can understand more complex documents and have a better understanding of their responsibilities and rights. They gave the example of an accessible version of a tenancy agreement, which cost very little to produce. Because of this being available, a tenant was able to understandthe need to keep money for rent each week, to look after his property and respect his neighbours. He is therefore able to pay his rent on time, is accepted by his neighbours and community, and has made friends there. This has resulted in him having a good quality of life and wellbeing. The tenancy agreement guide produced in consultation with Sunderland People First cost a total of £800. The housing organisation have over 8000 tenants across the North East. It is estimated that a minimum of 1% of their tenants have a learning disability, and the guide is being used regionally. It was estimated that the cost was approximately £1 per person. This was compared with the cost of re-accommodating a tenant who was unable to understand and carry out their responsibilities, fell into arrears with rent, and did not have a good relationship with their neighbours, which could be more than £12,000 for a single person.

A second example given was an easy read leaflet about the diabetes helpline. By having this information, a woman who becomes unwell with her diabetes over the weekend can ring the helpline and follow their instructions to test her blood sugar and to go to the pharmacist for over-the-counter medication, rather than going to the NHS Accident and Emergency service at the hospital. This is much less expensive, saving the NHS over £100. 

The main message from the examples given is that self-advocacy costs less than statutory services and investment in self-advocacy can save money for councils and the NHS.

Co-production, which self-advocates reminded us can be described as “nothing about us, without us”, leads to getting it right first time, whether it be communication, easy-read information, changes to services or new services, saving time and money.

And …. It’s just the right thing to do!

Self-advocacy groups recognise that there’s a lot they can do for commissioners. Involving self-advocacy organisations can help councils by supporting people to prepare for co-production meetings and events. They can help with preparing easy read materials and explaining subjects in advance, and helping self-advocates to discuss and think about subjects in advance of a meeting, so that self-advocates can come along to meetings and events, ready to represent the views and opinions of themselves and their peers.

My Life, My Choice from Oxfordshire had examples of the benefit of their local self-advocacy support to people who have been recently discharged from long-term hospital settings. The numbers may have been small, but they have benefitted from the support of other people to build their confidence living outside a hospital setting and have chosen to remain involved with self-advocacy, as they have found it very supportive.

Previous bad experience

Some commissioners may have had a bad experience in the past where self-advocates have not turned up to meetings. The self-advocacy groups consulted said that it is important to treat commissioners with respect and behave like you would want commissioners to behave. This includes following through on the arrangements, turning up when you say you will turn up, being prepared and professional when invited to a meeting, and delivering what has been paid for. This recognises that it is a two-way relationship and generates mutual respect and encourages self-advocates to be seen as equal participants. Self-advocates can communicate to commissioners about what is working well and what is not. Commissioners can be clear with self-advocates letting them know where and how they can help and when they can't.

Commissioners who have commissioned and engaged with self-advocacy also told us that ;it is very easy for commissioners to commission self-advocates to simply come and be a part of meetings or a part of project just so that they're sitting around the table. But that it is essential to actively involve self-advocates, and to support them to take a full and meaningful part. Real value can come from self-advocates being properly involved and supported to represent their views. As described by self-advocates, when it works well, both commissioners and self-advocates see it as a two-way relationship, where people turn up, are reliable, keep their side of the bargain, listen, treat people with respect and properly work together.

Lack of awareness

Lack of awareness can be an issue when new commissioners come into post. They may not understand the difference between statutory advocacy and non-statutory advocacy, including self-advocacy. If there is limited awareness of the benefits that self-advocacy can bring to the council and the area, it may be that it is seen as “nice to do”, but not affordable, when compared with statutory advocacy. Some councils may ask statutory advocacy services to provide self-advocacy groups, without realising that they are completely different approaches. If there are waiting lists for statutory advocacy services, there is a risk that the commissioned advocacy service provider may come under pressure to prioritise statutory advocacy over self-advocacy.

This lack of understanding and awareness may extend to elected councillors. It was felt that it was essential to have awareness-raising campaigns and resources that show the benefit of self-advocacy, both in terms of health and wellbeing for individuals, and also in terms of money saved for councils and other organisations. It is essential that elected members, as well as staff, are kept informed about self-advocacy work of people who live and vote in their area, so that they understand its importance.

Case studies and data gathered locally can give information on how self-advocacy has helped individuals and benefitted the local area. These in turn will help to redress the balance, improving understanding and awareness of the advantages of self-advocacy. This would support a change in approach so that councils see the justification of investing in, and commissioning, self-advocacy and recognise its preventative role, as well as seeing it as a basis for developing positive co-production of services in the area.

Whilst many councils see the importance of co-production, it is important to recognise the difference between co-production and self-advocacy. The drivers for each are different. Co-production initiatives are usually led by a statutory body that invites experts by experience to work with them on an issue, a policy or a service, that may need developing or revising. Council or NHS managers recognise the value of working with experts by experience to learn from that experience. Whilst self-advocates may gladly join in with the co-production, the topic being discussed is usually not selected by self-advocates. Self-advocacy groups on the other hand, are led by the self-advocates, and members set the agenda and choose which issues to focus on.

Self-advocates spoke of disability rights and the Equality Act 2010. They emphasised the fact that people with a learning disability are often disabled by society – that is by other people’s attitudes. Whilst they recognised their right to speak up, they also stressed that they may need support and reasonable adjustments to do this. If they do not get that support to learn the skills and confidence to speak up, then how do they do it? Without self-advocacy support, they are being denied that right. That can, in turn, lead to further inequalities, including access issues, employment issues and health inequalities, meaning they can be in a really disabling place. Self-advocates told us they believe in a rights-based approach to explaining why self-advocacy is essential and why councils should support self-advocacy groups to exist.

People not understanding the connection between co-production and self-advocacy

Whilst co-production and self-advocacy are distinct, they are connected. Many people who are active in co-production – using their lived experience to help councils and other organisations to design good services or develop policies that work well – tell us that they gained their confidence and skill from being involved in self-advocacy groups. Some people who champion co production at a regional or national level, say they wouldn’t be able to do what they do now, if it hadn’t have been for a nurturing self-advocacy group, where they felt welcome and encouraged to participate, at a time when they were less confident to do so. If self-advocacy is not supported in an area, there is a risk that fewer people will gain skills and confidence to speak up.

Councils in areas where self-advocacy groups thrive are able to call on those groups to develop co-production approaches for all their new services and policies. It is important that self-advocacy is understood as a basis for co-production. Once this is understood, commissioners and those developing new services and policies can plan for how self-advocacy groups can contribute to the co-production of new developments.

When a service is being reviewed, for example, commissioners can talk to the people that currently use it, to get their views about what works well and what does not. But if commissioners also go to a self-advocacy group to ask their views, they benefit from the views of people with a wider range of experience than only those who currently use the service in question. Self-advocacy groups have also had ongoing help and support to understand how to engage fully in those kinds of processes and commissioners then benefit from the added value of the skills and experience that the self-advocacy group has to offer. That, in turn, can improve what you are able to gain from the co-production process. Also, by involving self-advocacy groups involved in co-production, it raises the profile of the self-advocacy groups, keeps the council in touch with their local self-advocacy groups and vice versa, and builds the relationship between the council and the self-advocates.

Lack of representativeness

Another barrier that was identifiedcould be that commissioners may worry that self-advocacy groups may not be fully representative of the people in their area that they want to consult. Self-advocacy groups recognise that this is something that they need to give a lot of thought to. It is important for self-advocacy groups to keep thinking about who they are talking to and how they are getting new people involved. A lack of representativeness can also be due to financial constraints, as it requires sufficient time and resources to do this well, particularly in rural areas. Self-advocates recognise that some services have barriers and reported that it is important to ensure self-advocacy should be available for all ages and all people with protected characteristics, as described in the Equality Act 2010. It is essential that both commissioners and self-advocacy organisations strive to ensure that people from global majority communities are represented and have their voices heard. Councils and other organisations that wish to consult experts by experience can involve a range of groups and individuals to ensure a wider range of representation, where this is pertinent to their local population.

Lack of existing self-advocacy in an area

Another barrier that has been identified is that where self-advocacy groups exist, with support, it is possible to provide evidence of the benefits of self-advocacy. But where there is no self-advocacy group it is really difficult to gather and collate evidence and data of the benefits and savings that can be provided. This means that where councils are already committed to commissioning self-advocacy, the barrier to continued investment may be less than the barriers to starting up self-advocacy groups in areas that do not have any. So, it may be necessary for self-advocacy groups to provide intelligence to areas outside their own, or to contribute to regional or national work to help to break down such barriers to ensure more of an even spread of access to self-advocacy groups. Commissioners may need to work across their region or engage with national work to consider how to show the value of self-advocacy to their own council and how self-advocacy can support the council’s co-production, whether this is in relation to design and procurement of new services, development of new policies or links to its overall priorities.

The recent Henry Smith charity and Social Finance research published in February 2025, makes four key recommendations to strengthen non-statutory advocacy provision for autistic people and people with learning disabilities:

• Enhance policy leadership
• Create dedicated funding
• Build sector collaboration
• Improve integration with employment and health

Some councils ask an existing organisation to support the development of peer support and self-advocacy group. This might be an organisation that is commissioned to provide other types of advocacy. It is important to note that where the development of a new self-advocacy group is supported in this way, the principles and ground rules need to be very clear. It should aim to be, and work towards being, led by self-advocates. There are risks associated with having a self-advocacy group run within a service that is commissioned to provide statutory services. The non-statutory self-advocacy group needs to have its own distinct structure and support, or it can risk being less of a priority than statutory advocacy services, for the commissioner and providers. In such situations there should be clear criteria agreed for monitoring the growth and effectiveness of the self-advocacy work.

The emergence of Social Value

Many councils now have social value clauses built into their commissioning contracts. As part of its contracts, commissioners are encouraging all providers to evidence (measure and report on) the social value they bring to the place. Many encourage the use of the national Themes Outcomes and Measures (TOMS) framework. The LGA has also published guidance on the TOMS system. This guidance proposes five themes, one of which is:

“Creating Healthier, Safer and More ResilientCommunities: To build stronger and deeper relationships with the voluntary and socialenterprise sectors whilst continuing to engage and empower citizens.”

Whilst the contribution to the social value of a place by all commissioned providers is to be applauded, there is a risk under this framework and theme that self-advocacy, by its very definition, is seen as providing social value and therefore does not need to be funded. Some councils have opted to invite statutory advocacy providers to deliver social value by supporting, promoting and delivering self-advocacy, without any separate funding for the self-advocacy part of the service. There is a risk that the distinct role of self-advocacy and the skills required to support self-advocacy, which are different from the skills required to provide statutory advocacy, may not be fully understood.

Others have recognised the distinct nature of self-advocacy to develop resilience and empower citizens, to develop confidence and skill as a first step to enable effective co-production. By providing an element of core-funding, councils have enabled self-advocacy groups to exist. Once in place they are able to apply for and attract additional funding to support ongoing development and growth.

Separate self-advocacy organisations are generally small, person-led, not-for-profit organisations, run by, and for, their members. If a self-advocacy group is supported as a small service within a much bigger organisation, there is a risk that the organisation is less likely to be a user-led organisation, and self-advocates are less likely to have an opportunity to be involved in the running of the organisation.

Commissioners from areas that are no longer commissioning self-advocacy because it is not a statutory requirement have suggested that statutory advocacy is being paid for because it has to be, but that the council cannot afford to pay for non-statutory advocacy. This does not recognise the savings that non-statutory self-advocacy can bring, as a preventative service, improving the mental and physical wellbeing of those that use self-advocacy services. In addition to evidencing savings to health and social care from non-statutory advocacy, The Henry Smith Charity and Social finance research report Independent advocacy for independent lives provides a Theory of Change diagram that describes both short and long-term beneficial outcomes for people who use non-statutory advocacy, supporting their resilience and reducing their dependence on statutory services. 

Limited commissioning budgets

The tight financial situation of councils, including adult social care, is the most commonly cited barrier to commissioning self-advocacy. It is clearly essential that senior managers give a steer on priorities for spend and commissioning and it is recognised that if non-statutory advocacy, including self-advocacy, is perceived as merely “nice to do”, and not mandatory, it is likely to be constrained by budgets. This in turn affects the capacity. If there is no funding for more staff hours, there may be waiting lists. It is likely that this will have a great impact on non-statutory advocacy.

A number of councils, whilst retaining statutory advocacy in line with legislative duties, have cancelled contracts for self-advocacy and other types of non-statutory advocacy. Evidence from self-advocacy groups and research suggests that this is a false economy, as self-advocacy groups are proven to be directly saving the council money by its preventative role, as well as being seen as the foundation for good co-production, which itself is seen as a support for the council to “get it right first time”, saving costs on necessary re-work. Most councils embrace the importance of co-production, even those that do not commission self-advocacy. Self-advocacy does not just bring benefits in adult social care, but can support solution-finding in relation to other council services and in other parts of people’s lives.

Sometimes we commission using ring-fenced funding, such as funding that has to be used for adults only, or young people only, but it is possible to combine funding depending on where it is coming from and what rules there are about how we spend it. This can include different council departments, the health service and other sources.

Self-advocacy groups also report that it takes some years to build strong self-advocacy organisations, and that long-term funding is preferable to single-year, time-limited funding, as it takes a lot of time and effort to get individual self-advocates and groups to a point where they are confident and skilled public speakers who are able to represent their peers to those in authority.

My Life, My Choice in Oxfordshire gave the example that they are now in a position to bring in six times the funding they receive from the council. They were not always able to do that. For many years they were reliant on the local authority for funding, but now the local authority and the local community is getting the benefit of that earlier investment, and the long-term commitment of over 25 years from the council.

Lewisham Speaking Up gave an example that if there is no money, councils may be able to help new groups with other support rather than money, such as offering office space, and helping the group to make connections to other groups and organisations.

The following examples show different models of how self-advocacy is commissioned and provided across England.

Integrated Advocacy contract approach: Staffordshire

Staffordshire commissions Asist Advocacy to provide a single integrated advocacy service covering all statutory advocacy for the area as well as support for co-production and self-advocacy. The provider is required to support the council to develop and enhance genuine co-production and self-advocacy with people with a range of disabilities and neurodivergence. In their area they have established a joint council and NHS Staffordshire Disability and Neurodiversity Partnership Board, which is co-chaired by an expert by experience, and a joint (shared with Stoke-on-Trent) Learning Disability and Autism Partnership Board. 

The co-production element of the contract requires the provider to support experts by experience to contribute to council processes and activities, including adapting information to ensure it is fully accessible to them. This element includes:

• the development of new council strategies
• monitoring of services
• wider co-production, engagement and consultation opportunities.

The provider employs advocacy facilitators to support experts by experience to prepare for and to participate in Board meetings, including support for the co-chair of the Staffordshire Disability and Neurodiversity Partnership Board, who is an expert by experience. They have also established and supported user sub-groups as part of the Boards’ work.

There is also a “collected stories” project, where individual experts by experience have the opportunity to tell their story to the Partnership Boards. These stories have been recorded and are on the website as video presentations.

The self-advocacy part of the contract is clearly separately identified. This distinguishes it from the statutory advocacy part of the contract and ensures it has its own identity.

The council has recently established and directly employed two new posts to lead on strategic engagement, and these will inform how the co-production work will evolve within health and care.

Commissioned and funded as an identified service: Trafford

Trafford’s Mission Impossible service is a peer and self-advocacy service. It is funded by Trafford Council and supported by Advocacy Focus, the organisation that provides statutory advocacy services in the area. There is a single paid member of staff who facilitates the Mission Impossible meetings and is employed by Advocacy Focus.

This group is free to join. It is open to any autistic people or people with a learning disability over the age of 18 living in Trafford. This group aims to support people to develop their confidence, knowledge and self-advocacy skills, whilst using their own life experiences to help others and develop the future of Trafford services. By being part of this group, people will influence and make change within the NHS and local authority services to create better experiences for everyone who uses them.

Advocacy services provide statutory advocacy services across a wider footprint that just Trafford. Mission Impossible is however a Trafford group, although members sometimes go to events outside Trafford to meet with self-advocates from other areas.

Community Grant approach: Lewisham

Lewisham Speaking Up is an independent charity for people with a learning disability. Rather than their core funding coming from Adult Social Care, it comes from the council’s corporate community grants programme. The community grant funds the People’s Parliament four times a year and provides core funding that enables the charity to exist and to have staff who can bid or more funding from other sources. 

The core grant supports:

• main infrastructure costs – salaries, IT, building costs, stationery, charity governance fee.
• submission of quarterly monitoring reports
• membership of the Stronger Communities Partnership Board. Attendance at community meetings, as required
• delivery of four ‘People’s Parliaments’ each year, which provide people with a learning disability in Lewisham with the opportunity to discuss key issues and concerns and to make recommendations to the wider system about how to address these concerns
• infrastructure and support for engagement in other pieces of community and commissioned work for the borough.

The charity is required to bid for the grant. In addition, they are usually awarded a small amount of funding from adult social care to do single-issue, case-based advocacy.

Lewisham set up a learning disability partnership board in 2024, with its own strategy, with a self-advocate co-chair and two lived experience representatives on the board, all supported by Lewisham Speaking Up. Additional funding has been agreed to enable this work to take place. The group is sometimes asked to take on additional co-production support work, which is funded on a project basis. There are six staff, all except the director are part-time. They employ a core staff team and they also have sessional staff and a board of Trustees. The organisation is run by people with a learning disability.

They offer an opportunity to support consultation and co-production work and to bring it together in one place for the Borough and the local health services. They work on a project basis to do work in their area to ensure the voices of people with a learning disability are heard. They also run smaller groups, a couple on a fortnightly basis, a zoom weekly session and a big monthly gathering. They have a core group of about 100 people who regularly come along. They find it is possible to generate additional income for individual projects, which can pay sessional staff, including those with a learning disability, to support specific projects.

Jointly (NHS and council) grant-funded as a standalone service: Dorset

The ICB and the council have a joint strategic grant agreement with People First Dorset to deliver the Speaking Up Project, which has been in place for a number of years.

People First Dorset is a small charity led by people with a learning disability. Its core work is around meeting members’ needs. As well as the Speaking Up Project, it works on a few different projects including the Friendship Club, which it sees as underpinning everything it does. Members often start with the Friendship Club, where they develop social, independent skills and friendships in community settings. Speaking Up groups support people to develop an understanding of rights, and the skills to speak up. People may go on to set up Action Groups where individual or collective action is taken to address concerns.

There is a wide spectrum of needs and abilities. The organisation sees the importance of creating a safe space for people to say what they want and to feel free to speak up for themselves. They also recognise the importance of having fun even when they are discussing some quite serious topics. The friendships that are nurtured help to prevent or reduce loneliness.

The purpose of the grant and the Speaking Up project is to empower people with a learning disability to be independent, have their voices heard and to be included in community life. Through the Speaking Up Project, People First Dorset support Dorset Council and NHS Dorset to ensure the voices of local people with a learning disability are heard and are provided with opportunities to be meaningfully involved in the planning and development work that contributes to Dorset Council’s and NHS Dorset’s priorities being achieved. The grant also enables self-advocates to be members of strategic panels, such as a Health Action Group, Healthcare group and stakeholder advisory groups. The project is delivered through various methods, and the grant specification is reviewed by the three partners (Council, ICB and People First Dorset) to ensure it continues to reflect current needs and priorities. It is recognised that grant-funded charities, like contracted providers, have periods of uncertainty, when waiting to hear about future funding. By having the grant, it enables the charity to have the core staff group which in turn enables it to apply for funding from other sources, both within the county and from outside. People First Dorset employs one person with a learning disability for 7 hours per week, as part of the staff team. There is also the Management Committee of people with a learning disability which works alongside the trustees to oversee the direction of the charity.

Grant-funded: Sunderland

Sunderland Council provides a grant contribution towards the core costs of Sunderland People First to exist, so that they can apply for project-based funding to deliver other pieces of work. Sunderland People First is a Cooperative Community Interest company (CIC). This means that its Board of Directors are employees of the organisation, which includes people with a learning disability and autistic people. Prior to becoming a community interest company in 2013, the service had been run by the council since 1994. Sunderland Council’s funding originally fully covered the core costs. Due to growth of the company, this funding is now a partial contribution to the core costs. Sunderland People First bids for resources to do additional work such as cancer awareness and Oliver McGowan Tier 1 training. The company also earns money by selling its easy read services. The grant funding is agreed for 12 months at a time.

Sunderland People First is a Cooperative Community Interest company (CIC). This means that its Board of Directors are employees of the organisation, which includes people with a learning disability and autistic people. Prior to becoming a community interest company in 2013, the service had been run by the council since 1994. The Company offers opportunities, for paid and unpaid roles, for people with a learning disability and autistic people to become Advocates who take forward the work of Sunderland People First. People with a learning disability and autistic people who have lived experience, work on behalf of people with learning disability and autistic people to make positive and important changes.

Since Sunderland People First was established as an independent organisation, the council has provided them with grant funding to support sustainability of the organisation and to provide it with the financial stability to enable it to build capacity and grow so it could continue deliver on its important aims and objectives.

The council has continued to provide funding to Sunderland People First to enable them to continue to carry out its important and valuable work representing, championing and campaigning for the rights of people with a learning disability and autistic people. This aims to make sure that they are seen as equal citizens in society and that they have their voices heard so that people can have the best life, have equality of access to, and a positive experience of, services and that their rights are promoted and upheld. The company has recently moved to new premises, and is exploring new possibilities, including monthly drop-ins for friendship and socialising with refreshments, and a 6-week Empowerment through Art programme aimed at people awaiting an autism assessment.

Commissioners at the council receive a quarterly monitoring report and an annual report from Sunderland People First. The quarterly report covers:

• quality assurance aspects, for example, governance; staffing; complaints; safeguarding; insurance checks
• financial monitoring of how the grant has been spent and financial governance arrangements
• an overview of the key activities that have been carried out using the grant funding.