The Hidden Challenge

Deafblindness is a unique disability arising from combined sight and hearing loss. It affects how people access information, communicate, navigate environments and participate in decision-making.

Many advocacy providers deliver excellent generic advocacy services. However, even the most skilled advocate may struggle to support a deafblind person effectively without specialist knowledge and appropriate communication skills.

An advocate cannot support someone to express their wishes if communication itself is a barrier.

The challenge is not simply one of accessibility. It is about ensuring that the person can genuinely participate in decisions that affect their lives.

What the Law Says

The Care Act 2014 places specific duties on local authorities in relation to deafblind people.

The statutory guidance recognises deafblindness as a distinct disability and requires authorities to ensure assessments are carried out by individuals with specific training and expertise in deafblindness.

The same principles should inform advocacy provision.

If a person cannot access information, communicate effectively or understand complex processes because of combined sensory loss, commissioners should consider whether generic advocacy alone is sufficient to meet their needs.

A deafblind person may require:

• Communication support tailored to their individual needs.
• Advocates who understand the impact of combined sight and hearing loss.
• Alternative formats and accessible information.
• Additional time to build effective communication relationships.
• Knowledge of specialist services and legal rights relating to sensory loss.

Without these adjustments, there is a risk that advocacy becomes a procedural exercise rather than a meaningful safeguard.

Deafblindness is not simply deafness plus blindness

One of the most common misconceptions in commissioning is the assumption that services specialising in either hearing loss or sight loss will automatically possess the knowledge and skills required to support people who are deafblind.

While these organisations often provide valuable support within their areas of expertise, deafblindness is recognised as a distinct disability in its own right.

At Hi-Vis UK, we often use a simple analogy to explain this.

Imagine deafness as the colour blue and blindness as the colour yellow. When you combine blue and yellow, you do not end up with something that is a little bit blue and a little bit yellow. You create green – an entirely new colour.

The same principle applies to deafblindness.

The impact of combined sight and hearing loss is not simply the sum of two separate sensory impairments. The interaction between the two creates unique barriers to communication, access to information, mobility, independence and participation in society.

For example, strategies that work effectively for a person with hearing loss may rely heavily on visual information. Equally, approaches used to support someone with sight loss may depend on their ability to hear verbal instructions, environmental cues or spoken information. When both senses are affected, entirely different approaches may be required.

This distinction is recognised within the Care Act 2014 statutory guidance, which identifies deafblindness as a unique disability and requires local authorities to ensure specialist expertise is available when assessing deafblind individuals.

The same principle should apply to advocacy services.

An advocate may be highly skilled in generic advocacy, visual impairment or hearing loss. However, without an understanding of the unique impact of combined sensory loss, there is a risk that communication barriers remain unrecognised and that the person’s ability to participate fully in decisions affecting their life is compromised.

For commissioners, this raises an important question: not simply whether advocacy services are available, but whether they have access to the specialist knowledge required to support people who are deafblind effectively across all advocacy situations

Why specialist advocacy matters

For many deafblind people, the consequences of ineffective advocacy can be significant.

Important decisions about care, housing, safeguarding, health care and mental capacity may proceed without the individual fully understanding what is happening or being able to influence outcomes.

This is particularly concerning where there are safeguarding concerns, mental capacity issues or significant life-changing decisions.

An advocate should be amplifying the person’s voice.

Without the right skills and support, that voice can remain unheard.

A commissioning opportunity

Commissioners have a key role to play in addressing this issue.

This does not necessarily mean commissioning entirely separate advocacy services. However, it does mean ensuring contracts recognise sensory loss and include requirements for specialist knowledge, training, referral pathways and access to expert support when required.

Questions commissioners may wish to consider include:

• How will advocates communicate effectively with deafblind people?
• What specialist training do advocacy providers receive?
• How will providers identify when specialist input is required?
• What arrangements exist with specialist sensory loss organisations?
• How will outcomes for deafblind people be monitored?

By asking these questions at commissioning stage, local authorities can help ensure advocacy services are genuinely inclusive.

Building workforce confidence

One of the challenges frequently identified by advocacy providers is a lack of confidence when supporting individuals with combined sight and hearing loss.

To address this, Hi-Vis UK has developed a new specialist training programme designed to increase understanding of deafblindness and equip advocacy professionals with the knowledge and practical skills needed to provide effective support.

The programme explores:

• Understanding deafblindness and its impact.
• Communication approaches and accessible information.
• Legal duties and rights.
• The role of advocacy in safeguarding and decision-making.
• Practical strategies for supporting deafblind individuals effectively.

The aim is simple: to ensure that deafblind people are not only offered advocacy, but are able to benefit from it in a meaningful and person-centred way.

Looking ahead

True inclusion is not achieved simply by making services available. It is achieved when people can access those services on an equal basis and have their voices heard.

As commissioners continue to review and redesign advocacy services, there is an opportunity to ensure deafblind people are not overlooked.

The question is not whether advocacy is available.

The question is whether it is accessible.

Co-production needs to happen where people are

One of the clearest messages from the week was that equitable co-production requires us to rethink where co-production happens. Too often, participation is designed around what works for organisations rather than the people they are trying to reach; participants highlighted the importance of going into communities, working through trusted local partners, and creating opportunities for involvement in places where people already feel comfortable.

This approach can help reach people who may not usually engage with formal consultations, create space for more open and honest conversations, and provide a better understanding of the issues that matter most to different communities.

Relationships are the foundation for meaningful co-production

Participants also highlighted the importance of building trusted relationships over a sustained period of time. Strong relationships create the confidence needed for people to share honest perspectives, challenge assumptions and work through difficult issues together.

There was also widespread recognition throughout Co-production Week that this can’t be built through one-off conversations; trust develops over time through consistency and honesty. The reflections suggested that it is helpful to start small and use early conversations to support mutual understanding.

Importantly, discussions highlighted that listening to understand, not respond, was essential to building the relationships needed to support equitable co-production. Genuine understanding requires curiosity and empathy—it means recognising the complexity of people’s lives, identities and experiences.

The importance of action and feedback

Participants repeatedly emphasised the importance of understanding what happens after people have shared their experiences and ideas.

People want to know how their contributions have influenced decisions, whether priorities have changed and what improvements have been made as a result. In other words, people want to know what happens to the information they share. Without this, involvement can feel transactional rather than collaborative.

This highlights the importance of creating clear feedback loops, capturing learning and demonstrating impact. It also means moving with purpose from conversation to implementation; co-production is most powerful when people can see a direct connection between their involvement and meaningful change.

This helps demonstrate the value of co-production to people who may not yet fully understand its impact, building confidence in co-production is a practical approach to improving services and informing decisions—and, therefore, encouraging wider involvement.

Accessibility is essential to participation

Co-production depends on people being able to participate as equal partners. Throughout the week, participants highlighted that information that is unclear, inaccessible or inconsistent acts as a barrier to this.

Good, equitable co-production is only possible if people understand their rights, the decisions being made and the options available to them. Providing clear and accessible information should, therefore, be a core component.

Recognising lived experience as expertise

A further lesson from the week was that equitable co-production depends on how we recognise and value lived experience. While many organisations now acknowledge the importance of lived experience, participants challenged us to think about what that recognition looks like in practice.

A consistent message was that lived experience should be recognised as expertise and treated with the same respect as other forms of knowledge.

Importantly, recognition has to be practical and individual. Recognition will mean different things to different people and so it should be discussed and agreed with everyone.  People shouldn’t be left out of pocket for helping to improve services, put at risk of financial hardship or expected to revisit difficult experiences without appropriate support. For organisations, this means thinking about recognition from the outset. Considerations such as payment, expenses, accessibility, communication, preparation, emotional safety, support and feedback are essential.

As I reflect on the week as a whole, what was made clear is that equitable co-production is not defined by a single method, framework or activity. Rather, it is shaped by a series of choices about who is involved and how they are involved. Co-production Week reminded us that achieving care equity requires giving the same level of attention to equity within our engagement and decision-making processes as we give to the services we are seeking to improve.

I would encourage anyone interested in these discussions to watch the recordings of SCIE’s Co-production Week sessions. If you would like help to improve your co-production approach, please contact consultancy@scie.org.uk to hear more about how we can support you, and read our new case study of SCIE’s work with Bath and North Somerset in this area.

This matters because inequity in social care is rarely caused by one thing. People’s experiences are shaped by income, geography, age, ethnicity, gender, disability, health condition, digital access, informal support, local services and wider structural pressures. These factors interact and can compound over time.

Why we commissioned the research

The Care Equity Evidence Hub shows that the evidence base on inequity in social care is rich, but spread across many places. When evidence sits in separate silos, it can be harder to see how different barriers connect in people’s lives.

We wanted this research to help bring those issues together through lived experience. Thinks Insight & Strategy used a qualitative and participatory process, including expert input, lived experience engagement and co-creation with people drawing on care and unpaid carers across four local authority areas.

Co-production was not only a topic within the research but also a critical part of the process, through expert input, lived experience engagement, and collaborative development of the work.

Inequity is often experienced as work

One of the strongest messages from the research is that inequity is often experienced through the work people have to do to get support.

People described chasing, explaining, coordinating, proving need, and trying to make sense of unclear decisions. They spoke about uncertainty over who to contact, how eligibility works, where health support ends and social care begins or how to ask for more help when existing support is not enough.

People with more money, confidence, digital access, family advocacy, or professional knowledge may be better able to make the system work around them. People without those resources may be more likely to accept unsuitable support, rely on unpaid care, go without, or stop asking.

For me, this is one of the clearest insights from the research. It moves the conversation beyond unequal access alone. It shows inequity as an unequal burden of work.

People may live inequity without naming it

Another important finding is that people do not always use the language of policy or systems to describe what is happening to them. Most people will not say, “I am experiencing inequity.” They are more likely to say, “I do not know who to ask”, “I feel like a burden”, “I was made to feel difficult”, or “I stopped trying”.

Care inequity is often visible in the gap between what people need and what they feel able to ask for. It shows up in lowered expectations, guilt, repeated effort, reliance on family, and withdrawal from support. These experiences may be described in personal terms, but they point to wider patterns in how care is accessed, organised, and delivered.

That is why lived experience matters. These accounts show how wider patterns of unfairness become personal.

The research captures the experiences of people feeling misunderstood, talked down to, disbelieved, or left to chase support until they no longer had the energy to continue. These are not only individual stories. They show how system design affects trust and dignity, and whether people feel able to seek support when they need it.

Good care is relational

When people described good care, they often talked about relationships.

They valued being listened to. They valued continuity. They wanted professionals and carers who knew them, understood their circumstances and treated them as individuals. They wanted care that helped them maintain dignity and independence, not care that made them feel controlled or reduced to a task.

This is central to equity.

In his speech earlier this week, the Prime Minister described the problems created by the traditional ‘time and task’ commissioning and delivery model, where care provider companies are paid in rigid blocks of time (often 15-minutes) to deliver a specific list of care tasks, such as helping someone get washed and dressed. He said it can be a ‘recipe for quite significant chaos’ when someone’s needs are moderate or severe. The experiences captured in this research help explain this further: care cannot be genuinely person-centred when there is too little time to build trust, understand someone’s circumstances or respond when their needs change.

If someone has to explain their needs again and again, if their condition is not understood, if their cultural needs are missed, or if they cannot build trust with changing staff, then care becomes harder to access and harder to sustain.

Relational care is especially important for people with complex, fluctuating or poorly understood needs. It is also important for unpaid carers, who often become the person holding together information, relationships and decisions across services.

Continuity, trust and being known are not extras. They are part of fair care.

Choice and control are not equally available

Choice and control are core ideas in adult social care. But this research shows how unevenly they can be experienced.

A fair care system cannot rely on people being able to push hard enough, pay privately, or have a family member who can coordinate support. It needs to reduce the amount of work people have to do to get care, and increase people’s power to shape the care they receive.

Seeing the bigger picture

SCIE’s Rainbow Framework helps explain why these findings matter. It shows that care equity is shaped by interacting layers around the individual, including family and informal networks, community, services, systems and wider structural conditions.

The research brings those layers to life.

Geography shapes what support is available. Financial means shape people’s ability to pay for more flexible care. Ethnicity, language, faith and culture shape whether care feels person-centred. Age can shape whether people are talked down to or assumed to be coping. Gender can shape guilt and caring expectations. Invisible, fluctuating or poorly understood conditions can mean people have to re-prove need again and again.

The point is not that these factors act one at a time. They combine.

That is why the report’s strongest contribution may be its account of compounding inequity.

Why co-production matters

This research also points to the importance of co-production.

If inequity is partly about unequal power, then a fairer system must shift power towards people drawing on care and unpaid carers.

That is why care equity was the core theme for SCIE’s Co-production Week this year. Across the week, we asked who gets care, and whether care is fair.

These questions matter because fairness in adult social care means recognising the different barriers people face, reducing the work people have to do to get support, and shaping care with the people most affected.

At the individual level, care should be shaped with people, not simply delivered to them. At the service level, people’s experiences should shape information, access routes, assessments, and reviews. At the system level, people with lived experience need to influence what fairness means in practice.

For practitioners, local authorities, government and researchers, this research is a reminder that care equity is not a separate issue from co-production. If we want to understand who gets care, who misses out, and what makes care fair, we need to listen to people’s experiences and share power in how care is designed.

The Casey Commission’s “Big Conversation”, which gives everyone a chance to have their say on the future of adult social care, creates an opportunity to put these principles into practice. People drawing on care and unpaid carers should have real influence over that conversation, including how reform reduces unequal burdens, strengthens choice and protects dignity.

Want to learn more about care equity?

SCIE is working with local authorities and partners to help build understanding of care equity, strengthen local evidence use, and support practical approaches to fairer social care.

Local authorities interested in learning more about SCIE’s care equity work, the Care Equity Evidence Hub, or related support offers can contact us at insights@scie.org.uk.

The implications for social care and beyond

Enabling people to live good lives sits at the heart of the reforms. In practice, this will mean more risk being managed outside hospital settings and, in turn, increased demand on community services. Many areas have seen a gradual erosion of community capacity over the past fifteen years. Without renewed focus and investment in alternatives to hospital care, there is a risk that the ambition of the reforms will not be realised in practice.

The implications extend beyond social care. Housing, for example, will be critical to supporting recovery, yet sourcing appropriate, therapeutically informed accommodation remains a challenge. At the same time, providers may become more risk-averse due to concerns about placement breakdowns and insurance. Aligning housing with recovery-focused support will therefore be a key issue for local authorities.

Workforce pressures

Shifting more care into the community also has direct implications for the workforce. As risk and complexity increase outside hospital settings, the demand on professionals to assess, manage, and respond will grow accordingly.

The Approved Mental Health Professional workforce is already under strain, having stagnated in recent years, with councils reporting around a 25% shortfall in staffing required for a 24-hour service, according to Skills for Care recruitment and retention data. This creates a challenging starting point for implementing reform.

While the reforms aim to reduce detention rates, it would be wrong to assume this would reduce workload. A large proportion of AMHP work is focused on triaging requests for Mental Health Act assessments and considering less restrictive alternatives to detention. Managing greater levels of risk in the community may also increase the likelihood of burnout and moral injury – the psychological impact of making high-stakes decisions that may have serious consequences

There is also a wider workforce challenge. Staff across social care, housing and the voluntary sector will need the skills and confidence to operate within this updated framework. Supporting people with complex, intersecting needs in community settings requires not only training but strong supervision and organisational support.

Addressing inequalities

Reducing inequalities sits at the heart of the reforms, but turning this ambition into reality will require thoughtful planning and new approaches. Models such as multidisciplinary ‘team around me’ support, where different professionals share accountability, can offer more flexible, person-centred care. Without this, there is a real risk that people remain in the community without the right support, undermining recovery and trust.

Encouragingly, some local authorities are using the implementation period to co-produce services with communities, recognising that previous approaches have not always met diverse needs. Although further guidance will be set out in the codes of practice, it is this type of proactivity that will help local authorities create a more solid foundation for responding effectively to issues of inequality.

This is essential because people rarely present with a single, clearly defined need. Mental health problems are often intertwined with trauma, social disadvantage, substance use and other factors. Too often, individuals have fallen through gaps between services working in silos.

Investment pressures

There are other specific elements of the Act that will require investment.

• Advocacy services are moving to an opt-out system, meaning a significant increase in capacity and a continued focus on training and support for advocates.
• Tribunal frequency and scope will increase, reflecting a strengthened emphasis on individuals’ rights to review and challenge detention.
• Crisis and specialist services will need to respond to more people who do not meet the threshold for detention but still require timely support.
• The Deprivation of Liberty Safeguards (DoLS) process is changing following the recent Supreme Court ruling which will have some implication on situations where DoLS and MHA intersect.  

These reforms have been a long time in the making.  If we are to truly revolutionise the experiences of those with mental health needs, a fundamental shift in how systems work together will be key.

A system-wide approach – bringing together social care, health, housing, and the voluntary and community sector will be essential. This includes exploring mechanisms such as pooled budgets and shared commissioning to support joined-up decision making. Changes to ordinary residence rules demonstrates an encouraging step forward in promoting collaboration and decision making that can truly centre an individuals’ needs rather than their geography.

Providers, particularly in housing and the voluntary and community sector, consistently highlight the need for more responsive community mental health support when people reach crisis point. Ensuring that non-medical professional voices are recognised, valued and acted upon will be key to building a system that is both effective and trusted.

There is also an opportunity to strengthen accountability – agreeing what data matters, how responsibilities are shared, and how partners can work together across the whole pathway. The implementation period provides valuable time to do this in a way that builds momentum and enables meaningful change.

Trauma-informed approaches should underpin this work, not only in services but in communities themselves. Building understanding, reducing stigma and making a concerted effort to assist local communities in understanding how to support those experiencing distress, will help create environments where people can recover and feel supported.

Looking ahead

Ultimately, these reforms are about improving people’s lives through support that is timely, respectful, and tailored to individual needs. Success will be seen in fewer unnecessary detentions, smoother transitions between services, and people feeling more in control of their care and recovery.

Preparation will be critical. While national investment will be essential, local authorities also have an opportunity to lead a cultural shift towards strengths-based, rights-driven practice – supported by strong partnerships across care, health, and housing.

If that shift can be realised, the Act has the potential to create a system that is not only more effective, but more humane and responsive to the people it serves.

SCIE is working to promote approaches that are person-centred, led by peoples lived experience, and focused on their strengths. We are developing our offer to support organisations in their preparation, strategy, and making the cultural shifts needed for successful and meaningful implementation.

To hear more about our offer, sign up for our mailing list and tick mental health here or get in touch directly.

Core Cities UK is an alliance of 12 cities – Belfast, Birmingham, Bristol, Cardiff, Edinburgh, Glasgow, Leeds, Liverpool, Manchester, Newcastle, Nottingham and Sheffield. In recent months, the Directors of Adult Social Services (DASSs) of the English Core Cities have set up a new group to consider the particular challenges faced by councils in urban areas, and to ensure that national analysis of Adult Social Care considers the specificity of issues in cities and large towns.

The principles of being valued and recognised are fundamental to the work that this group produces.

Being recognised for who and what you are helps to build up a relationship of trust with strong elements of openness and transparency. If it concerns an ongoing relationship between a professional and their client, this should be the starting point. If you don’t have that, it can make it more difficult.

It is also important that our voices are heard in decision-making and that we feel listened to by health and care professionals.If this works well, we are more likely to engage with decisions and outcomes, such as a treatment plan, for example.

It also helps if professionals communicate in easier-to-understand language and don’t use jargon. Knowing your audience and what they have been through helps to make a stronger connection.

Sometimes, we might need someone else to be in the room with us, to give us the confidence to speak up for ourselves or simply to hear what is being said to us, so that we can go over it together afterwards, before giving our response. 

We need to educate those people who have never worked with us before. Often, they come with pre-conceived notions about what we are like, that bear little resemblance to who we actually are.

Being offered employment opportunities can show what we are capable of and boost our own self-confidence, as well as convince employers to employ others like us.

Society doesn’t help. Old attitudes are hard to shift. There needs to be more awareness about the hidden disabilities that many people live with. In particular, these can affect how we process information and therefore what kind of support we actually require.

In this way, the Sunflower Lanyard has had a positive impact on our ability to be able to travel safely and securely. We want to have our independence wherever possible, and being able to travel about more freely helps us to achieve this.

There is often talk about the slogan ‘Nothing about us without us’ originally from the Disabled People’s Movement in the UK.

In order to include us better, especially if discussions about certain things might be triggering, it is important to create a safe space for people to feel included even if they need to remove themselves for a time.

In an unfamiliar alien environment, when you are already anxious, you want someone to give you the time and space to get yourself together.

Young people with learning disabilities can learn from us too. Speaking up now provides them with role models who can inspire others into the future.

And in the end, the solutions that we arrive at with will be stronger for having been done with, and not to, the very group of people that we are trying to serve.

The SCIE FLYERS are a group of experienced self-advocates who draw on their own lived experiences to come up with ideas and solutions to everyday problems for people like ourselves.

We provide advice and training materials for service professionals and others.

To date, the group has produced the ‘Am I Invisible’ and ‘Making Things More Equal’ films and written text for SCIE pieces of work between 2021 and 2025, forming part of the ‘Tackling inequalities’ project.

Sometimes the difference is shaped by where someone lives. Sometimes it is shaped by income, ethnicity, disability, age, gender, digital access, language, housing, family networks or how confident someone feels navigating the system. 

That is why care equity matters. 

Care equity means that no one should receive worse care, or miss out on care, because of who they are, where they live or the circumstances of their life. It means looking honestly at the gaps in access, experience and outcomes and doing something practical about them. 

The Care Equity Evidence Hub has been developed to help with that task. It brings together research, data, case studies and analysis on inequities in social care, which have importantly been reviewed by SCIE, so that people across the sector can better understand where unfairness shows up and what might help to address it. SCIE created the Hub as a resource to support policy, practice and service design by making evidence easier to find, understand and use.   

But evidence on its own is not enough. 

Evidence can show us patterns. It can tell us that people in different places, from different communities, or with different financial circumstances may have different experiences of care. It can help identify where systems are not working as they should. But evidence does not always tell us what it feels like to be on the receiving end of those systems. 

That is where co-production is essential. 

Co-production brings people who draw on care and support, unpaid carers, practitioners, researchers, commissioners and organisations into the work as partners. It recognises that lived experience is not a nice addition to the evidence base. It is part of the evidence base. 

When people with lived experience are involved, different questions get asked. 

Not just: what does the data say? 

But also: whose experience is missing? Who finds this system hardest to use? What assumptions are built into the way support is designed? What would make this evidence useful to people making decisions? What would make it useful to people living with the consequences of those decisions? 

That shift matters because inequity is not always obvious from a spreadsheet or a report. It can appear in the gap between having a service and being able to access it. It can appear when digital systems are introduced without proper alternatives. It can appear when transport, language, culture, cost or trust are treated as side issues rather than central parts of whether care works. 

Evidence tells us where to look. Co-production tells us what it means. 

This year’s theme is the right question at the right time. SCIE and the Co-production Steering Group has set out the week to explore how co-production can help achieve better equity in care, demonstrate its impact and improve people’s experience of co-production in social care.   

For us, that question leads to another. 

Who gets to shape care? 

If the answer is only professionals, organisations or institutions, then we will keep missing things.  

We will miss the quiet barriers. We will miss the people who have learned not to complain. We will miss the communities who have not been invited into the room. We will miss the difference between a service being available and a service being genuinely accessible. 

The future of care has to be shaped with the people who draw on it, care for others, work in it, commission it, research it and live with its consequences. 

The Care Equity Evidence Hub is one contribution to that future. Its value will grow if people use it, challenge it, add to it and share what they are learning. 

Because fair care does not happen by accident. 

It happens when we ask better questions, listen to different voices, and use evidence not just to understand the system, but to change it. 

Evidence tells us where to look.  

Co-production tells us what it means. 

Together, they can help us build care that is fairer, more consistent and more human. 

If you would like help to improve your co-production approach, please contact consultancy@scie.org.uk to hear more about how SCIE can support you.  

And view the Care Equity Evidence Hub. We need you to share feedback on the hub, suggest new evidence topics, identify gaps in the current evidence base, or provide examples of how evidence has been used to inform policy or practice. 

We kicked off Co-production Week with an inspiring session, ‘Co-production: The key to achieving care equity’, exploring how co-production can drive real change in care equity.

Tuesday’s session highlighted what inclusive co-production looks like in practice. The goal of which was to leave participants with fresh ideas and practical approaches, making their work more inclusive and impactful.

West Midlands ADASS hosted a session on Wednesday about its AI Playbook. Launched in January, the playbook is the result of a year-long collaboration between people with lived experience, unpaid carers, developers, local authorities and digital leads from across the region.

At a time when AI is advancing at an incredible pace, the AI Playbook has three key features:

• telling the story of AI, including addressing concerns and identifying calls to action
• demonstrating real-life examples of how people and councils are using AI
• introducing AI coaches.

The playbook aims to demystify AI, provide practical guidance, and spotlight the coaches, who are based on real people and their lived experiences.

During the workshop, we explored why developing the playbook was important, highlighting key stages in its development, and introducing the people on whom the coaches are based.

As we get towards the end of the week, we have an interactive workshop on ‘Towards Fair Care’. We will be exploring barriers and solutions through discussions and shared learning.

On the final day of Co-production Week 2026, ‘Valuing Lived Experience: From Good Intentions to Good Practice’ will tackle the realities of recognition, payment, and fairness in co-production.

Co-Production Week 2026 is a timely opportunity to reflect on what it truly means to value lived experience. People with experience of health conditions, caring responsibilities, disability, and social care bring knowledge and insight that cannot be learned from textbooks or training courses. Their perspectives help create better outcomes for everyone.

Many organisations recognise the importance of lived experience, but true co-production involves much more than simply asking for feedback. It means recognising lived experience as expertise and involving people as equal partners in shaping services, decisions, and outcomes.

Good practice means creating accessible opportunities for everyone to contribute, removing barriers to participation, and recognising the value of lived experience. It also means ensuring that people are appropriately compensated for the additional time, effort and expertise they bring to co-produced work. Above all, it requires building relationships based on respect, trust, and shared learning. These are key issues which SCIE explores in its research published last year, ‘Shaping change together: co-producing innovation in social care.’

When lived experience is genuinely valued, everyone benefits. Services become better informed, more responsive, and more inclusive, while people feel heard, respected, and empowered.

Care should not depend on where someone lives. Yet across England, the postcode lottery means that people with similar needs can experience vastly different levels of support, safety, and dignity. Achieving care equity is essential to ensure that access to high-quality care is determined by need rather than geography or circumstance, and to prevent inequalities from deepening for those who are already most at risk.

This Co-production Week, let us continue moving from good intentions to good practice by ensuring that lived experience is not only recognised but truly valued.

Visit the SCIE website to find out more about the activity going on during Co-production Week, and to stay up to date on all things Co-production Week, follow the conversation on social media using #CoProWeek2026.

Things changed with the onset of the global pandemic in 2020, which devastated so many lives and had a disproportionate impact on disabled people and care home residents. The annual festival went online (where it’s remained ever since) and the theme of that year’s week was ‘Co-production in a Changing World’. In the blog I produced on co-production in lockdown I wrote: 

“One of the consequences of the response from health and social care organisations to the emergence of COVID-19 has been to sideline ideas like co-production, to treat them as luxuries that can be explored at leisure once more important and pressing demands have been dealt with. This approach represents a form of paternalism that is diametrically opposed to the values that underpin co-production.” 

Our theme in 2021 was ‘Co-production Principles and Values’ and there was a focus on sharing learning from successful local initiatives. In 2022, we looked at the impact of co-production, considering the difference it makes to individuals, organisations and communities. Our focus in 2023 was co-production in the real world and we conducted a co-production survey which concluded that to fully realise the benefits of co-production we need to continue raising awareness, forge ahead with developing more inclusive practices and work with sector leaders to ensure that co-production is integral to all future policy making in social care.  In 2024, we considered the question of what is missing from co-production and in my blog that year I wrote: 

“From my perspective, what’s missing in co-production is a commitment to recognising it as an agent of change. Co-production should not be treated as a jargon word, or a more impressive sounding term for tokenistic involvement, or something to be paid lip service to while maintaining the status quo. Co-production practice should result in changes to relationships, behaviour and delivery that bring recognisable benefits to everyone. Otherwise, what’s the point?” 

Last year our theme was innovation through co-production, and we aimed to uncover new insights into how co-production fuels innovation in social care. The week was marked by a celebration of the life of John Evans, a long-term member and former chair of the Co-production Steering Group and a pioneer in the field of independent living. I had the privilege to know and work alongside John for many years, and I’ll be thinking of him as we start out on our exploration of care equity during Co-production Week 2026, a theme I am sure would be close to John’s heart. 

— Patrick Wood 

As I reflect on where we are today, I am struck by the fact that the case for co-production has never been stronger, yet the conditions in which we are trying to practise it have rarely been more challenging.  

Social care continues to face significant pressures – rising demand, workforce challenges, constrained resources and growing inequalities in access to support. In this context, there can be a temptation to see co-production as something that can wait until the system is less stretched.  

Our experience at SCIE, and the evidence we continue to gather, points to the opposite conclusion. Co-production is not an optional extra for better times; it is one of the most effective ways we have of ensuring that change is rooted in what matters most to people, delivers meaningful outcomes and builds trust in reform. 

That message came through clearly in our recent report, ‘Shaping change together: co-producing innovation in social care’, published following Co-production Week 2025. While many professionals felt collaboration was working well enough to drive change, people who draw on social care and their families told a different story, with many reporting that they still feel excluded from decision-making and reform efforts. At the same time, our wider work on innovation through co-production has highlighted how new ideas are strongest when they are developed with people rather than for them. 

As we look towards this year’s theme of care equity, the lesson is a simple but important one: reform is more likely to succeed when lived experience is present from the beginning, helping to shape priorities, challenge assumptions and ensure that change reaches those who have too often been overlooked. 

Looking ahead, I believe our challenge is not simply to do more co-production, but to deepen our commitment to genuine partnership. At SCIE, co-production remains central to our vision of improvement through evidence, partnership and shared leadership. As national conversations about the future of social care continue, including wider discussions about reform and the Casey Commission, we have an opportunity to build a bigger and more inclusive conversation about what good care looks like and who gets to shape it. That means moving beyond consultation towards shared power, ensuring that voices that have too often been overlooked are heard, valued and acted upon. If we can do that, co-production will continue to be not just a way of improving services, but a force for greater equity, inclusion and lasting change across the social care system. 

If you would like help to improve your co-production approach, please contact consultancy@scie.org.uk to hear more about how we can support you.  

— Gerard Crofton-Martin 

An open reflection: I haven’t always got the care I needed

I want to say this plainly, because I think plainness matters more than polish here. I have not always had really good care. Not because I didn’t ask for it, not because I didn’t try, and not because I didn’t deserve it. I haven’t always had it because of the inequality that exists, plain and simple.

When I think about what has actually got in the way over the years, it’s rarely one big dramatic moment. It’s an accumulation of smaller failures that, stacked together, become exhausting in a way that’s hard to explain to someone who hasn’t lived it.

It’s having to explain, again, that severe fatigue isn’t laziness, and watching a professional’s face change when they realise this is going to take longer than the appointment slot allows.

It’s being a racialised person, talking about my mental health and feeling the room shift, like I’ve confirmed something instead of shared something.

It’s being LGBT+ and not knowing, walking into a new service, whether I’ll need to come out again, explain myself again, or just quietly leave parts of myself at the door to get through the appointment.

It’s poverty, deciding things that should never be financial decisions — whether I could afford the bus fare to get to an assessment, whether I could afford to take the unpaid time off to attend it, whether I could afford to keep chasing a system that wasn’t designed with someone like me in mind.

None of these things, on their own, would necessarily stop someone from getting care. But together, they add up to a system where your postcode, your race, your bank balance, your identity and your health all quietly decide how much support you’re going to get, and how hard you’re going to have to fight for it. That is inequity. It has a cost, and I have paid it more times than I can count.

What good care actually looks like, when it works

There’s a set of “I” statements from Think Local Act Personal’s Making It Real framework that I come back to often, because they describe something so simple it almost feels radical to say out loud:

I can live the life I want and do the things that are important to me, as independently as possible.

I am treated with respect and dignity.

I feel safe and am supported to understand and manage any risks.

I am supported to manage my health in a way that makes sense to me.

I have people in my life who care about me — family, friends and people in my community.

I am valued for the contribution that I make to my community.

I have a place I can call home, not just a ‘bed’ or somewhere that provides me with care.

I live in a home which is accessible and designed so that I can be as independent as possible.

None of that asks for anything extraordinary. It’s just what a good life looks like. You can read the full framework on TLAP’s hub: Making It Real, Think Local Act Personal.

And yet for so many people, especially people who carry more than one of the identities I’ve described above, even these basics aren’t guaranteed.

Why I’m inviting you into this conversation

I’m not sharing this to make anyone feel guilty. I’m sharing it because I think real change only happens when the people who’ve been on the sharp end of a system are sat at the same table as the people who design it, and both groups are genuinely listened to.

That’s what co-production is supposed to be. Not a focus group. Not a box-ticking exercise where someone with lived experience gets fifteen minutes to share their story and then watches the room move on to the “real” agenda. Co-production is when people with lived experience help shape what happens next, properly, with power actually shared.

So that’s my invitation to you this week: come into these conversations properly. Bring your discomfort if you have it. Bring your questions. Bring the bits of your own experience you’ve never said out loud in a professional setting before. This week only matters if it changes what happens after it ends.

Where I’m seeing the evidence base catch up

One of the reasons I have hope is that the evidence is finally catching up with what people like me have been saying for years. SCIE’s Care Equity Evidence Hub brings together research and analysis on exactly this — how inequity shows up in who gets access to care, what that care actually looks like once you’re in the system, and what outcomes people end up with.

It’s organised so that practitioners, commissioners and policymakers can actually use it, rather than it sitting in academic papers that are hard to access, and it’s been reviewed by SCIE experts. That matters, because you can’t fix what you haven’t properly named, and for too long, inequity in social care has been treated as anecdote rather than evidence.

What I’m hopeful about is something simple: that we get to a place where more people get genuinely better outcomes from care, and that those outcomes stop being decided by your postcode, your ability, your race, your sexuality, your income, or how good you are at navigating a complicated system. Good care shouldn’t be a postcode lottery, or a reward for resilience. It should just be there.

My call to action

By the end of this week, I’d love for you to ask yourself one honest question: what is one thing you’re going to do differently because of what you heard?

Not a vague intention. One decision you’ll share. One barrier you’ll personally remove. One voice you’ll bring into a room it hasn’t been in before. One piece of evidence from the Care Equity Evidence Hub you’ll actually act on, not just read.

Conversations matter. But they’re not the destination. Action is.

I hope you’ll join us.

What did not follow 

Over the decade that followed, adult social care entered a period shaped by austerity, rising demand, workforce pressure, political instability and repeated disruption. The architecture of reform remained, but many of the conditions required to realise it weakened or disappeared. 

Funding pressures increasingly drove systems towards short-term crisis management. Prevention became harder to sustain. Workforce pressures intensified. Local variation widened. Public understanding of the system remained weak. And successive reform moments arrived and receded without a durable settlement. 

Looking back, I think we underestimated how difficult it would be to sustain alignment between policy ambition, operational reality and political attention over time. 

England has spent much of the last decade repeatedly rediscovering the same problems without sustaining the political and institutional conditions needed to address them. 

The greatest failure of the past decade has not been a lack of diagnosis, but the inability to sustain implementation. 

What reform taught me 

One of the lessons I have drawn from my nine years as Chair of SCIE is that social care reform succeeds or fails less through moments of announcement than through the slower work of translation, improvement and learning. 

Policy can establish direction. But systems only change when ideas are interpreted, adapted, tested and embedded in practice. 

That work is often less visible than legislation or funding announcements. It happens through guidance, standards, improvement support, evidence synthesis, leadership development and co-production. It depends on relationships across organisations and professions. It requires institutions capable of connecting national ambition with local realities. 

One example stays with me. 

As Care Minister, it was my decision to place responsibility for social care guidance and standards within NICE. At the time, this felt like the right institutional choice. NICE carried authority, permanence and statutory standing. The intention was to signal that social care deserved the same seriousness and infrastructure as health. 

In retrospect, I think I misunderstood something important. 

Social care improvement is not simply a technical standards problem. It depends much more heavily on translation into practice, co-production, implementation support and organisational learning across highly fragmented systems. 

NICE brought rigour and authority. But over time it became clear that the nature of social care required something different as well: institutions capable not only of defining evidence, but of helping systems apply it in practice. 

Ironically, much of that work continued to be undertaken by SCIE itself, including through guidance commissioned directly by government and broader improvement support across the sector. 

I have come to think that this reflected a deeper truth about social care reform. Systems do not improve through legislation, standards or structural change alone. They improve when there is sustained capacity to connect evidence, practice, leadership and lived experience over time. 

The missing infrastructure 

One of the weaknesses of adult social care reform has been the absence of sustained national improvement infrastructure — one that works with the whole complexity of the care system, across local places and communities, and with the multitude of care providers and their workforces. 

The NHS has developed institutions, however imperfect, that support evidence, improvement, leadership, data, guidance and implementation. Social care has never had equivalent infrastructure at the same scale or with the same stability. 

While I would not advocate replicating NHS infrastructure, that lack of investment matters. 

Without organisations capable of translating policy into practice, bringing evidence together, supporting improvement and grounding change in lived experience, reform remains dependent on short-term programmes, local capacity and brief periods of political attention. 

SCIE has often been asked to occupy this improvement role. 

Over the past decade it has supported implementation of the Care Act, developed guidance, advanced co-production, worked on safeguarding, contributed to standards, supported leadership and improvement, spread innovation and, more recently, created the Care Equity Evidence Hub. 

SCIE’s Covid-19 Hub demonstrated this role in practice, helping bridge the gap between national guidance and what people and organisations needed to do on the ground. 

The issue is not whether this work is needed. It plainly is. 

The question is whether it is recognised as essential infrastructure for achieving lasting reform, and whether our future care system provides sufficient investment to leverage this capacity to produce a care system the public will support and be proud of. 

Why institutions matter 

Some of the most important work in public systems is not about designing new policy, but about helping people make sense of complexity, learn from evidence and improve practice under pressure. 

That role can sometimes appear modest compared with the scale of the challenges facing the sector. But fragmented systems rarely improve through structural reform alone. They require institutions that help sustain coherence, learning and continuity over time. 

The recent development of SCIE’s Care Equity Evidence Hub reflects this wider challenge. One of the striking features of the current system is not the absence of evidence, but its fragmentation. We know a great deal about inequity in access, experience and outcomes. But evidence is often dispersed, inconsistently applied and weakly connected to decision-making. 

We are also better placed than in the past to understand what good care looks like, because we are increasingly able to capture evidence about people’s outcomes and experiences, not only service activity. 

The same could be said of reform more broadly. 

England has not lacked commissions, reviews or policy ideas on adult social care. Many of the central questions have been understood for years: how risk should be shared between individuals and the state; how to support a sustainable workforce; how to create greater consistency without losing responsiveness; how to shift towards prevention; how to support unpaid carers; and how to create clearer public understanding of what social care is for. 

The difficulty has been sustaining political and institutional alignment long enough to carry reform through. 

Reform without memory 

Too often, reform conversations begin as though history started yesterday. 

Institutional memory is lost. Previous learning is rediscovered rather than built upon. And implementation is treated as secondary to policy design. 

That matters because adult social care is not a system that can be reshaped quickly or centrally directed into coherence. It operates through a complex mix of local government, independent providers, unpaid carers, communities and public services, all working under different pressures and incentives. 

Reform in such systems is cumulative rather than instantaneous. It depends on sustained attention over time. 

The Casey moment — and a new political opening 

The Casey Commission now sits at the centre of a potentially much more consequential political moment. 

The possibility of Andy Burnham becoming Prime Minister gives the debate an unusual continuity. As Health Secretary in 2009 and 2010, he led work towards the creation of a National Care Service. His return to the issue creates the possibility that social care could move closer to the centre of government than it has for many years. 

That should be welcomed as a genuine opening. 

But the opportunity is not simply to revive a blueprint from 2010. It is to connect renewed political ambition with everything that has been learned since: the Care Act’s emphasis on wellbeing, prevention and rights; the importance of local government and a diverse provider sector; the centrality of the workforce and unpaid carers; stronger evidence about equity and outcomes; and a clearer understanding of the infrastructure required to turn reform into practice. 

Seen in that light, the Casey Commission could become more, not less, important. It could provide a bridge between renewed political ambition and a phased, credible and publicly legitimate programme of change: clarifying what a National Care Service is for, building consent around difficult choices and connecting structural reform with the conditions that determine people’s experience of care. 

There is now much wider recognition that the current arrangements are difficult for the public to understand and are often experienced as fragmented and unfair. The debate around a National Care Service reflects a legitimate desire for greater clarity, visibility and consistency. 

The context for reform is also changing. Workforce reform, the proposed Fair Pay Agreement, stronger expectations around standards, better data on outcomes and experience, and the growing role of lived experience all create fresh opportunities to think differently about what a future care system should achieve. 

But structure alone will not resolve the underlying conditions that shape people’s experience of care. 

Any future reform will still need to grapple with workforce capacity, provider sustainability, commissioning capability, uneven local resources and the wider care economy of families and unpaid carers that underpins the formal system. 

Nor will renewed political attention, however welcome, substitute for the patient work of implementation. 

The question is therefore not only what a future government or the Casey Commission might announce. It is whether political leadership, public consent, funding, sector capability and improvement infrastructure can be aligned long enough to make reform endure. 

That is where SCIE’s role matters. Not as an advocate for one institutional solution, but as a national improvement body for social care: independent, evidence-informed, grounded in practice and shaped by lived experience. 

Equity as the test 

It will also be necessary to confront more honestly the question of equity. This is partly why SCIE has made this the theme of this year’s Co-production Week, launching next Monday, 29 June. 

The central test of reform is not whether structures appear coherent from the centre, but whether people experience care fairly in practice. Whether they can access support when they need it. Whether they are treated with dignity and respect. And whether care enables them to live well and participate in their communities. 

That is ultimately the promise contained within the Care Act’s wellbeing principle and, more recently, within Social Care Future’s powerful articulation of what social care should make possible: “gloriously ordinary lives”. 

Many of the stories I heard as Care Minister remain recognisable today: people struggling to navigate services, families carrying too much alone, and support arriving too late. What has changed is that we now have stronger language, better evidence and more developed practice around lived experience. What has not changed enough is the consistency with which those insights shape the system. 

I have become increasingly convinced that this is the right way to think about reform. Not primarily as a debate about organisational form, but as a question about the conditions required for people to live decent, connected and meaningful lives. 

The work ahead 

That requires policy. It requires funding. It requires political commitment. 

The possibility of renewed political leadership on social care should therefore be welcomed. It may create the clearest opening in many years to move from repeated diagnosis towards sustained reform. 

But the lesson of the last decade is that an opening is only the beginning. Progress will depend on whether political ambition is matched by a clear account of what reform is for, honest choices about funding and responsibility, credible sequencing, and institutions capable of supporting learning, improvement and implementation over time. 

After nine years as Chair of SCIE, I leave more convinced than ever that reform is possible. But I am also more aware that progress depends less on moments of declaration than on whether systems develop the capacity to learn, adapt and sustain change. 

Another lost decade will not be avoided by diagnosis alone. The opportunity now emerging should be seized. Its legacy will be determined not simply by the strength of political commitment, but by whether we build the capacity to turn reform into better lives — and to sustain it beyond any one political moment.

Paul Burstow is Chair of the Social Care Institute for Excellence (SCIE). He served as Minister of State for Care Services from 2010 to 2012 overseeing the drafting of the Care Act and was a Liberal Democrat MP from 1997 to 2015.

The uneven reality of care 

Adult social care is not experienced consistently. 

Access varies. The availability of support, the threshold for receiving it, and the speed at which it is provided differ across places and populations. 

Experience varies. The way people are treated, the extent to which they feel informed or in control, and the continuity of care they receive are not uniform. 

Outcomes vary. The extent to which care enables people to live well, maintain independence and participate in their communities differs significantly. 

These differences are not incidental. They follow recognisable patterns. 

They reflect how the system is organised and what it prioritises — including funding arrangements, workforce capacity, commissioning practices and the structure of the provider market. They are also shaped by wider factors such as geography, income, ethnicity, disability and the availability of local services. 

What is often described as variation is, in many cases, inequity: differences that are avoidable, and that arise from the way the system functions. Some inequities arise from uneven delivery. Others are rooted more deeply in structural barriers — including poverty, racism, ageism, disability discrimination and the way services are designed or funded. Reform therefore has to address both: the way care is delivered, and the conditions that shape who is able to access, influence and benefit from it. 

Why equity matters 

Equity in social care should be a clear aim of a future care service. It is about the absence of unfair and avoidable differences in: 

• access to care and support 

• experience of services 

• outcomes in people’s lives 

This reflects a broader understanding of care as something that supports people to live well, rather than simply something that meets minimum needs. 

It also connects directly to the principles set out in the Care Act — particularly wellbeing, personalisation and prevention — and to wider work across the sector to articulate what people should be able to expect from care and support in practice. 

The question for reform is therefore not only whether services are available, but whether they are: 

• accessible to those who need them 

• appropriate to people’s circumstances 

• and effective in improving people’s lives 

A focus on equity means reform can achieve the core principles articulated in the Care Act and advocated by people who draw on care and support. 

Evidence and the problem of fragmentation 

There is a substantial body of evidence on inequities in social care. 

It shows consistently that people’s experience of care is shaped by where they live, their economic circumstances, and their personal characteristics. Differences in access, quality and outcomes are widely recognised. 

At the same time, the system faces increasing demand, uneven distribution of resources and persistent pressures on workforce and provision. These pressures do not fall evenly. They tend to reinforce existing differences between places and populations. 

Yet this evidence has often been difficult to use in practice. 

It is dispersed across multiple sources. It is presented in different formats. It is not always accessible to those making decisions about policy, commissioning or service delivery. 

As a result, decisions are frequently made without a clear and shared view of what the evidence shows. 

This is not simply a gap in knowledge. It is a gap in how knowledge is organised, connected and applied. 

The contribution of the Care Equity Evidence Hub 

The Care Equity Evidence Hub, developed by SCIE, is intended to address this problem. 

It brings together research, data and practice evidence on inequities in social care into a single, accessible resource. It organises that evidence around areas where inequities are known to arise — including workforce, geography, financial arrangements and the experience of different groups. 

Its purpose is not simply to catalogue what is known.  It is to support the use of that knowledge in practice. 

This reflects a wider insight emerging from SCIE’s work: that improving care depends not only on generating evidence, but on making it usable — connecting it to decision-making and grounding it in the realities of delivery. 

It also reflects the importance of co-production. Understanding inequity requires attention not only to data, but to lived experience — how people navigate the system, where it works, and where it does not. 

Equity as a design and delivery question 

The existence of inequities raises a further question.  Are these differences the result of design or of delivery?  In practice, they are both. 

Design choices — about funding, entitlement and responsibility — shape how resources are distributed and who bears risk. 

Delivery conditions — including workforce capacity, commissioning capability and provider viability — shape how those resources are translated into care. 

The two are closely connected. 

A system that is coherent in design but weak in delivery will still produce uneven outcomes. A system that is well delivered in some places but not others will reinforce variation. 

Equity therefore depends on alignment. 

It requires that the principles set out in policy are matched by the conditions needed to realise them in practice. 

The limits of structure 

This brings the argument back to the question of structural reform. 

The case for a more clearly defined national framework, including the idea of a National Care Service, rests in part on the need to address fragmentation and create greater consistency. 

These are important objectives.  But equity does not follow automatically from structure. 

A more centralised or nationally defined system may clarify responsibilities and improve visibility. But unless it addresses the underlying conditions of delivery — workforce, funding, commissioning and provider sustainability — differences in access, experience and outcomes are likely to persist. 

The question is therefore not only how the system is organised, but how it operates in practice. 

From evidence to action 

The final challenge is one of application.  If inequities are known, and if evidence exists to explain them, why do they persist? 

Part of the answer lies in fragmentation — of evidence, of responsibility and of decision-making. 

Part lies in incentives — the way funding, performance measures and accountability structures shape behaviour. 

And part lies in capability — whether organisations and systems have the capacity to interpret evidence, learn from it and apply it in practice. 

Addressing inequity therefore requires more than identifying where differences exist. It requires: 

• clearer visibility of those differences and prioritising their resolution 

• stronger connections between evidence and decision-making 

• and sustained attention to how change is implemented 

Bringing it together 

The argument across this series has been that social care reform is not simply a matter of intent. It requires: 

• clarity about purpose 

• alignment in design 

• capability in delivery 

This article adds a further dimension. Reform must also be judged by its outcomes. Not in aggregate, but in the lives of the people who draw on care and support. 

The question is not only whether the system is coherent. It is whether it works fairly. Whether people can access support when they need it. Whether they are treated with dignity and respect. And whether care enables them to live the lives they want to lead. 

The reality of delivery

Adult social care is not delivered by a single organisation, or even by a single part of the public sector. It is delivered through a network of relationships between:

• local authorities
• independent providers
• the workforce
• people who draw on care and their families

Each of these operates under different conditions, with different incentives and constraints.

This matters because reform is experienced through these relationships, not through policy statements. The way services are organised, the way decisions are made, and the way people interact with the system are shaped by these day-to-day dynamics.

This is also where people’s frustration is often felt most sharply. Too often social care is experienced as a set of service transactions, when what people value most is the quality of relationships, continuity, trust and support that enables them to live their lives.

The provider landscape illustrates the point. Social care is delivered by a large number of organisations, operating at different scales, with different business models and varying degrees of financial resilience. Some are large and established. Others are small and locally rooted. All operate within a context of constrained funding and uncertain demand.

Local authorities commission services, but do not directly control how provision is organised or how it responds to changing pressures. Providers, in turn, respond to a combination of funding levels, contractual arrangements, workforce availability and regulatory expectations.

The result is a system that is diverse and adaptive, but also difficult to steer in a consistent way.

The question of a National Care Service

Recent debate has returned to the idea of a National Care Service as a way of addressing fragmentation and bringing greater clarity to the system.

This reflects a central insight emerging from the Casey Commission: that adult social care lacks a clear sense of ownership, accountability and identity. Responsibilities are distributed across multiple organisations, with no single point of leadership. For those who rely on care, this can feel like a system in which no one part is fully in charge.

In that context, the case for a more clearly defined national framework is understandable. A National Care Service could offer:

• greater visibility and public understanding
• clearer lines of accountability
• a more consistent approach to standards and workforce

These are important objectives, and they speak directly to the concerns that have been raised about the current arrangements.

But structure alone does not resolve the underlying conditions that shape how care is delivered.

Even within a more nationally defined system, care would continue to be delivered through:

• a diverse provider landscape
• a workforce facing recruitment and retention pressures
• local systems operating under different constraints

The question is therefore not simply whether to create a National Care Service, but how any national framework would engage with these realities. Without alignment between workforce, funding, commissioning, standards and delivery — and without space for local and provider innovation — structural reform risks reproducing the same patterns in a different institutional form.

Workforce as the foundation

At the centre of this landscape is the workforce.

Social care depends on a large workforce working across a wide range of settings, often in roles that are both demanding and undervalued. Recruitment and retention have been persistent challenges over many years. Turnover remains high in parts of the sector, and vacancies continue to affect service availability. Training and skills development are also challenging within these circumstances.

These are not marginal issues. They shape what is possible in practice. Where workforce capacity is constrained:

• continuity of care is harder to maintain
• services may be reduced or withdrawn
• opportunities for improvement are limited

Workforce pressures also contribute to variation. Areas with more constrained labour markets, or with lower levels of funding, may struggle to recruit and retain staff. This in turn affects access, experience and outcomes.

Workforce conditions therefore sit at the centre of system performance. They are not separate from design. They are part of how the system functions. They are also crucial to raising standards of care and improving outcomes for people.

Commissioning and market shaping

Between policy intent and frontline delivery sits commissioning. Commissioning determines:

• how services are funded
• what outcomes are prioritised
• how providers are supported or constrained.

In principle, commissioning provides a mechanism for aligning resources with need and shaping the development of services over time.

In practice, commissioning operates under significant pressure. Funding constraints, short-term planning horizons and administrative demands can limit the ability to take a longer-term view. In some areas, commissioning capability has been reduced or stretched, making it harder to engage with providers in a strategic way. The emphasis on managing today’s demands limits the scope for investing in prevention and early intervention.

At the same time, commissioning operates within a mixed market. Providers must balance the expectations set through contracts with the realities of financial viability. Decisions about whether to enter or exit a market, invest in services, or develop new approaches to care are shaped by these conditions.

This creates a persistent tension:

• between shaping services around outcomes, especially those that matter most to people who draw on care and support
• sustaining a market that is able to deliver those outcomes.

Reform cannot be implemented without addressing this tension. It is not enough to define what good looks like. The system must also create the conditions in which it is possible to deliver better care.

SCIE’s analysis of our recent national research has demonstrated a strong link between effective neighbourhood‑based commissioning and lower overall commissioned service costs, while improving outcomes, choice and independence.  Therefore SCIE has launched a new commissioning product as part of our consultancy offer, designed to help reshape commissioning for better outcomes, stronger communities and long-term financial sustainability. Contact SCIE for more information about this.

Standards, guidance and learning

There is no shortage of knowledge about what good care looks like.

Over many years, work across the sector has developed a substantial body of standards, guidance and evidence. These describe effective practice, set expectations and provide a basis for improvement.

Work led by SCIE on national standards and guidance has demonstrated both what can be achieved in defining a clear account of good care, and the gap that often remains between that clarity and consistent delivery in practice.

The challenge is not defining good care. It is making it consistent. This depends on how knowledge is used in practice:

• whether guidance is accessible and relevant to front-line care
• whether organisations have the capacity to learn and adapt
• whether there is space for reflection and improvement

Standards can play an important role, but only if they are connected to practice. Where they are experienced as external requirements, disconnected from day-to-day realities, they risk becoming compliance exercises. Where they are embedded in practice, supported by leadership and capability, they can support meaningful improvement.

The difference lies not in the standards themselves, but in how they are used.

Leadership and culture

Reform is not delivered through structures alone. It depends on leadership.

Leadership in this context is distributed. It includes:

• system leaders working across organisational boundaries
• leaders within provider organisations
• managers responsible for frontline teams
• and those with lived experience shaping services and priorities

Leadership matters because it shapes how the system responds to pressure. It determines how:

• trade-offs are navigated
• priorities are set
• and change is sustained over time

It also shapes organisational culture — how people work together, how decisions are made, and how services respond to uncertainty.

Where leadership is strong, systems are more able to adapt, learn and improve. Where it is weak or fragmented, even well-designed reforms can struggle to take hold.

The role of co-production

A consistent finding from practice is that change is more effective when it is shaped with the people who draw on care.

Co-production is sometimes treated as an additional element of reform. In practice, it is a way of ensuring that services:

• reflect what matters to people
• are usable in everyday life
• and remain responsive over time.

For reform to improve people’s lives, it must be informed by their experience. It is not enough for the system to be coherent in design; it must enable personalised care in practice.  That it is why it is central to everything the Social Care Institute of Excellence does.

Bringing it together

These elements — workforce, commissioning, providers, standards and leadership — already exist.

They are not new. Nor are they marginal.

But they are not currently organised as a coherent whole. They are shaped by:

• funding constraints
• institutional boundaries
• differing and competing incentives
• and varying levels of capability

The challenge is not to create entirely new structures, but to align these elements so that they support a shared direction. Reform, in this sense, is not a single act. It is a process of:

• aligning incentives
• building capability
• and sustaining change over time

It requires attention not only to what the system is meant to do, but to how it behaves in practice — and whether that behaviour improves people’s lives.