5. Theme 1 – A person- centred approach
Inspection, scrutiny, and regulation of social care support must fundamentally be about people. How inspection and regulation are operationalised and experienced should ensure not only the provision of safe and high-quality care and support but also that people are treated with respect, involved in decisions about their lives, and are fully informed about the support they can expect.
The Review heard from people who receive social care support, and who work in the sector, that they want a system of inspection, scrutiny, and regulation where the rights of people with lived and living experience are understood and upheld, strong professional relationships are built, there is meaningful and inclusive involvement in inspection processes, and information is clear and accessible to all.
Current systems of inspection, scrutiny, and regulation are complex and sometimes duplicative and that can make them challenging for people to navigate and to participate in. Recent reviews, including The Promise, ‘The Muir Review’, Putting Learners at the Centre: Towards a Future Vision for Scottish Education and the Independent Review of Adult Social Care in Scotland, have found that regulatory systems and inspection processes often do not pay enough attention to individuals’ experiences or the issues that matter most to them. IRASC sent a particularly strong message that there should be a requirement to demonstrate how human rights are understood and acted upon and this Review very much endorses that view:
… there is not meaningful joint inspection of health and social care support services … too much attention is paid to procedural and process issues and not enough to individuals’ experience of care and how social care connects people with their communities.
This Review recognises that a rights-based approach is built into some key social care legislation. For example, Self-Directed Support (SDS) is one of the main ways in which social care support is delivered in Scotland. The Social Care (Self- Directed Support) (Scotland) Act 2013 sets out that anyone who accesses social care support should be able to do so in a way that supports their human rights, dignity, and ability to take part in the life of their communities. However, despite progress being made in ensuring that services are inclusive, the evidence report Self Directed Support and Personal Outcomes by the Equality and Human Rights Commission Scotland, published in July 2022, states:
Self-Directed Support users who shared certain protected characteristics experienced inequality in accessing Self-Directed Support and being able to achieve their personal outcomes.
The affirmation of equality and human rights in the social care support sector should be intentional, evidential, and accountable. From the evidence considered by the Review, inspection, scrutiny, and regulation currently are more process-led than outcomes-led.
The Review heard that methodology and reporting does not sufficiently concentrate on what difference social care support services make to people’s lives. A human rights-based approach can help to address this.
The Review notes that the Scottish Government recognises and promotes the importance of taking a human rights-based approach across a range of public duties, including the provision of social care support. Scottish Government is currently consulting on a Human Rights Bill, which proposes incorporating, a range of economic, social, cultural and environmental rights into Scots law for the first time, within the limits of devolved competence. The Bill will seek to place duties on public bodies to first ensure these rights are central to everything they do, and after a period of implementation, to ensure they comply with the rights. Furthermore, the Bill will aim to ensure public bodies take account of the rights contained in treaties tackling discrimination against women, disabled people and people and groups who experience racism, and do so in a way that delivers the rights without discrimination. The Bill will also enable people to seek justice where their rights are not upheld – through improving access to justice.
PANEL principles & human rights
One of the key questions the Review considered was how to ensure that people with lived and living experience of care and support services are able to contribute to inspection, scrutiny, and regulation. In support of its commitment to a human rights-based approach, the Review adopted the PANEL (Participation, Accountability, Non-Discrimination and Equality, Empowerment and Legality) principles to ensure that feedback gathered throughout the Review was translated into responsive and person-centred recommendations.
PANEL principles are one way of understanding what a human rights-based approach means in practice:
- Participation: People should be involved in decisions that affect their rights.
- Accountability: There should be monitoring of how people's rights are being affected, as well as remedies when things go wrong.
- Non-discrimination: Nobody should be treated unfairly because of their age, gender, ethnicity, disability, religion or belief, sexual orientation or gender identity. People who face the biggest barriers to realising their rights should be prioritised when it comes to taking action.
- Empowerement: Everyone should understand their rights and be fully supported to take part in developing policy and practices which affect their lives.
- Legality: Approaches should be grounded in the legal rights that are set out in domestic and/or international law.
Throughout the engagement phase, individuals signalled their support for using PANEL principles in inspection, scrutiny, and regulation. The Review also heard that there is a need to ensure that there is a clearer understanding of what human rights are and how they can be fully embedded in organisational and inspection processes.
Person-centred & person- led
In line with the PANEL principles, the Review asked people what they felt person centred inspection, scrutiny, and regulation processes should look like.
Language is important and the Review recognises that terms like person-centred and person-led, although often used interchangeably, have slightly different meanings to people.
The Review’s understanding of these terms is:
- a ‘person-centred’ approach might be described as ensuring the person in receipt of social care support is at the centre of all that happens. It places people and their families/unpaid carers at the centre of decision making, treating them as experts in their own care and support needs, working alongside professionals to get the best outcome; and
- a ‘person-led’ approach might be described as a person and their families/ unpaid carers making their own decisions relating to their social care support. It involves empowering people to be able to lead on, and actively participate in decisions about their social care support, acknowledging they are the most important voice in the decision-making process.
Some of those participating in the engagement events were of the view that a ‘person-centred’ approach can create a dynamic where social care professionals encircle an individual and their family, in some instances leading to the focus being on inter-professional issues, rather than the person and what matters to them. Others felt a ‘person-led’ approach is more empowering and was their preferred term to use.
The Review also heard that for some people there was a preference to see an approach in line with the Getting it Right for Every Child ‘GIRFEC practice model’ where the system comes together behind the person, with the individual taking the lead. The Review is aware of work underway by Scottish Government on developing Getting it Right for Everyone (GIRFE). This is an approach that focuses on individual care needs. Taking a GIRFE approach ensures that every person is empowered and involved in multi-disciplinary decision making and the support available to them.
Throughout this Review, reference is made to a person-centred approach (as illustrated below). The Review understands this to mean that people’s preferences, needs and values guide decisions, leading to care and support that is respectful of and responsive to them.
In the report by Why Research, it says:
Having people with lived experience involved in all aspects of inspection, scrutiny, and regulation will encourage good practice through its very nature. People with lived experience can create clear guidance on how to conduct inspections and encourage best practice.
The Review acknowledges that there are some circumstances where a person’s choices may be limited. For example, they may be living with dementia or a mental health issue that limits their decision-making capacity, they may be a young child or there may be matters relating to public safety. Nonetheless, the PANEL principles can still be applied to their involvement in the processes of inspection, scrutiny and regulation.
The Review recognises that all of the agencies involved in inspection, scrutiny, and regulation make efforts to take a human rights-based approach and involve people in their processes. For example, the Health and Social Care Standards, which were co-created and have a basis in human rights, underpin inspections by both the Care Inspectorate and Healthcare Improvement Scotland. The SSSC’s commitment to equality, diversity, inclusion, and human rights, is stated on their website.
Notwithstanding this, however, the Review heard consistently that people did not feel current processes were inclusive or based on human rights. A response from a representative body to the call for evidence stated:
Inspection and quality assurance have lost the focus on the child and place greater emphasis on good documentation than good practice.
The Review found that there is a gap between intention and what is often experienced, and the system needs to be re-balanced to focus on human rights as opposed to process. In order to address this, the following recommendation is made:
Recommendation 1 – It is recommended that inspection, scrutiny, and regulatory bodies consistently apply a human rights-based approach that places people at the centre of the process.
What to expect from inspection, scrutiny, and regulation
People expressed a range of views and suggestions regarding what works well in relation to inspection, scrutiny, and regulation and what could work better.
The Review heard that knowledgeable and skilled inspectors and regulators are valued by people and the importance of building good relationships was emphasised. Having consistent inspection approaches by staff was also highlighted as something people and services found beneficial but differing approaches to inspection by different agencies for the same services was deemed negative.
There was a range of views as to whether it was helpful to have advance notice of inspections taking place. Some felt an advantage of providing advance notice of an inspection is that it would allow people and their families/unpaid carers the opportunity to be more fully involved in the process and to ensure they are able to provide feedback in the way that works best for them. This was felt to be important if someone has a disability or requires translation services or other aids to communication. However, others felt an inspection without notice might provide a more candid impression of a service.
The Review recognises the value of both types of inspection. It is vitally important that both announced and unannounced inspections are retained and that an improved culture of openness and trust is fostered leading to better outcomes for individuals. To ensure that inspection, scrutiny, and regulation builds an improved culture ethos of trust and respect, in line with the PANEL principles, the Review recommends the following:
Recommendation 2 – It is recommended that matters of trust, respect, relationships, ethos and culture be placed at the heart of inspection, scrutiny, and regulation and should be reflected in reports.
Recommendation 3 – It is recommended that inspection, scrutiny, and regulatory bodies must set out clearly in their annual report how they have led and cultivated a culture of openness and trust.
Accessible and inclusive approaches
Throughout the Review a clear theme emerged about the importance of regulatory and inspection bodies involving people with lived and living experience and their families/unpaid carers in all aspects of inspection, scrutiny, and regulation. This includes the planning of inspection and regulatory activity as well as operational delivery. An open approach to involving people in decision making was emphasised, along with a focus on ensuring engagement is meaningful and accessible to all. Key to this was a need to see that participation in the inspection process could lead to positive action, change and improvement.
One illustrative comment from the call for evidence was:
The people who use our services (who responded to this consultation) were passionate about the need to be involved. They felt they should not only be involved at point of inspection but more generally in the making of rules which services are assessed against.
Each of the inspection and regulatory bodies currently involve people in the work they do. For example, in the Care Inspectorate Corporate Plan 2022 it states:
We will build upon our work to encourage and facilitate feedback from those experiencing care and their communities and review our methods of engagement to allow more to have their say.
The plan outlines their 'Volunteer Programme' which offers opportunities for experienced volunteer inspectors to be involved in inspections. As well as this, volunteers make contributions to the wider work of the organisation. For instance, they co-design the CI’s strategic inspection methodologies and sit on the recruitment panels for interviews.
HIS have set up a Strategic Stakeholder Advisory Group to support their work. This group provides strategic advice for all the work they carry out across the organisation within the integration landscape. In order to provide such advice, the group have adopted a broad definition of any strategic issue that may be impacting on the achievement of the vision for health and social care integration, which is:
Ensuring better care and support for people where users of health and social care services can expect to be listened to, to be involved in deciding upon the care they receive and to be an active participant in how it is delivered. This will result in better outcomes for people, enabling them to enjoy better health and wellbeing within their homes and communities. (HIS website)
Our intention to take a people-led approach to the design of our services and to work collaboratively with anyone who has an interest in our work.
In acknowledging all of the above work, the Review heard that people did not feel they had the opportunity to be involved in the processes of inspection, scrutiny, and regulation, that often they did not understand how the process worked or what opportunities they had to share their views.
A similar finding was reported in the Scottish Mental Health Law Review - Final Report that despite a duty in the Public Services Reform (Scotland) Act 2010 to:
… secure continuous improvement in … the involvement of users of scrutinised services in the design and delivery of scrutiny functions’ (Section 112), the user voice in scrutiny appears weak.
The Review was made aware of one model which was felt to be worthy of further exploration namely Scottish Housing Regulator’s (SHR) system of appointing Tenant Advisors.
The SHR recruits tenants of Registered Social Landlords (RSLs) and Local Authorities as volunteers to participate in the regulation work of the SHR, there are 12 members appointed for a 3-year period. Tenant Advisors come from all walks of life, but are not employed by the SHR. This means that they are able to provide a unique and independent perspective on landlords, and the work of the SHR. Tenant Advisors are involved in various projects and may act as mystery shoppers, review publications, or gather views from other service users.
This collaborative and participative approach to regulation mirrors the person- centred focus people have told the Review they want to see embedded across inspection and scrutiny processes, as highlighted in the report by Why Research:
Having people with lived experience involved in all aspects of inspection, regulation, and scrutiny will encourage good practice through its very nature. People with lived experience can create clear guidance on how to conduct inspections and encourage best practice.
In order to address the gap in the involvement and equity of both people who use and work in social care support and linked services, the following recommendations are made:
Recommendation 4 – It is recommended that inspection, scrutiny, and regulatory bodies make appropriate arrangements to engage people with lived and living experience in co-designing engagement tools and developing the inspection and regulatory frameworks.
Recommendation 5 – It is recommended that a strengthened system be put in place for people to have a formal role as lay inspectors in the process of inspection, scrutiny, and regulation, including young people with care experience. An appropriate level of remuneration should be made available.
Communication and information
A number of approaches to communication and information sharing were highlighted to the Review in response to the question about how inspection and scrutiny processes could be more person-centred in how they communicate with people. It is evident that people want to be well informed about inspection processes and outcomes, with information that is easy to understand, available at the right time and in the right format. It is also clear that people really value inclusive conversations and the opportunity to build good relationships.
The Review acknowledges that the inspection and regulatory bodies do take steps to ensure accessibility of information. The Review found that overall, the accessibility of information and good communication around process was not always being achieved however, the Review is also aware there are attempts to assess the impact and quality of communication between staff and care home residents.
One suggestion from the call for evidence was:
Ensure inspectors are able to access a range of communication tools used by those with communication differences and difficulties or ensure that where appropriate/required supported individuals receive support from those who know their preferred communication style well throughout the inspection process. Listen to the voice of the team around the supported person as they are often the experts in translating methods of communication. Provide easy read information to providers and supported individuals on the purpose of inspection and how people can contribute to the process.
Other suggestions for how communication could be improved included:
- not underestimating the value of speaking ‘face-to-face’ and participating in other forms of engagement including citizen’s committees, focus groups and workshops;
- the use of pre-inspection reports, social media platforms, surveys and online tools while ensuring that alternative options and support are available to people who might need them; and
- improved and more accessible information about the rights of those who use care and support services and inspection outcomes and processes.
To ensure accessible information is available and good communication is achieved the following recommendation is made:
Recommendation 6 – It is recommended that inspection bodies’ approach to engagement must be flexible, inclusive and appropriate. This includes allowing sufficient time for responses to be made and making suitable arrangements for conversations to take place with individuals, family members and staff, ensuring consistency and accessible information is available.
To participate in the processes of inspection, scrutiny, and regulation some people in receipt of social care support may need additional assistance. This may be because they have needs that change their capacity, require specific support with communication or that families/unpaid carers have limitations on their own time or are feeling under pressure during what can be challenging situations. Advocacy being available to those that need it would support better involvement, to ensure this support is available when required, therefore the following recommendation is made:
Recommendation 7 – It is recommended that independent advocacy is available for people to help them to exercise their rights, and when necessary, to provide support to navigate complaints and any escalation processes.
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