National Care Service: co-design of the draft NCS charter of rights and responsibilities

What we learned

Some of the main themes and views that we heard during the understanding and sense-making stages are outlined below.

1. We heard that the Charter should be accessible and as easy as possible for everybody to use. People should be able to easily see how it relates to them.

We heard from people that they wanted a short, simple and accessible document that is easy to use and access. For example, it should be available in places like GP surgeries, libraries, schools or included in any sort of National Care Service induction pack.

Other points around this included:

• technical information should be included in separate documents for people that want further detail
• the Charter must be in plain English and available in different languages and formats
• the Charter should be used to positively influence staff and societal views of supported people
• some people thought that the rights and expectations in the earlier drafts of the Charter do not always reflect people’s experience of support as it currently exists

How we have used this

This information helped us to create the draft Charter. The new draft of the Charter is in plain English and we will continue to develop the Charter in the agreeing stage to make sure that it is as clear and simple as possible. We want to make the Charter available in many different formats and languages as well as different physical places and online, to make sure that everyone who needs it can access it.

2. People thought the Charter should be clear about who it is for and how it can be used.

People told us that they wanted a Charter that clearly described what the National Care Service is and what it does. They also said that it is important that the Charter is clear about what its purpose is and who it is for.

Other points around this included:

• the Charter should include a list of example services to help people understand if their support is covered by the Charter
• the Charter should emulate aspects of the Social Security Charter including the ‘This Charter was created by’ section
• the Charter should clarify the difference between rights and expectations
• the ‘Who is this Charter for?’ section should be as inclusive as possible and there should be a child-friendly version of the Charter
• rights should be clearly listed in one place to help people see what their rights are at a glance and emphasise the importance of their rights

How we have used this

We used this feedback to help us decide what information should be in the Charter and how we organise it. The new draft of the Charter includes all of these suggestions, and aims to be clearer about who it is for and how it can be used. It also includes a clearer list of rights near the start of the document. As decisions are made about which services will fall under the National Care Service, we will continue to develop the Charter to make sure that it is clear who it is for and how it can be used.

3. People said that the Charter must be inclusive and promote the dignity of supported people. It should introduce rights to equal opportunities set out in the Equality Act (2010).

People told us that the National Care Service should go further than simply treating people equally and should treat people with dignity, respect, warmth and compassion. The Charter should include examples to help people identify with the rights and expectations.

Other points around this included:

• groups that are not protected by the Equality Act also face inequality, discrimination and stigma. This includes rural and island communities, people with experience of trauma or of drug and alcohol use.
• good support is based on good relationships between supported people and support providers and is built on mutual respect
• staff, and organisations that represent them, sometimes share experience of being exposed to violent and aggressive behaviour. However, many said that these behaviours often stem from traumatic experiences, medical conditions or emotional stress
• some people raised concerns that some supported people may not be able to adhere to any responsibilities and that the inclusion of responsibilities in the Charter could be a barrier to much needed care and support
• staff sometimes feel undervalued and the Charter should recognise the highly skilled work they do by providing information on how supported people should work with them

How we have used this

We used this feedback to continue to make sure we have the right information covered in the draft Charter. The new draft includes more information on what we mean by equality, dignity and respect and how it applies to different groups, including those listed above. It also includes a new mutual respect section to reflect the views of people that said that good support is built on good relationships.

4. It was suggested that support networks are important in making sure that people’s rights are upheld and that they receive the care they need.

We heard that care support is essential to the realisation of the right to Independent Living in Article 19 of the UNCRPD^[1]. People also said that independent advocacy is very important and different types of advocacy can help in different situations.

Other points around this included:

• people told us that community is important to different people in different ways
• we heard that care homes are people’s homes and people must be able to have visitors, if they want, in the same way that they would if they were receiving care in a non-residential setting
• people said that support for people accessing care at home needs to respect the needs of other people in the home as well as the privacy of the supported person
• unpaid carers and young carers said that the Charter should explicitly state that it applies to them and should include reference to rights that are specific to them
• some people were unsure about what independent advocacy support was, and some called for a right to independent advocacy for everyone to be included^[2]
• people want the Charter to include information on how to access independent advocacy

How we have used this

We have used this feedback to make sure we continue to include the right information about support networks, community and access to independent advocacy. The new draft of the Charter sets out the importance of support networks and community for people accessing support and includes examples of what this might look like. It also includes more and clearer information on the topics that people asked for in co-design including independent advocacy and rights for carers.

5. We heard that many people want to be more involved in decisions on their care support and some don’t feel they have enough control.

People spoke about care being done to them rather than with them and how they want to work in partnership with people providing care. We also heard that social care assessments can be intimidating and the Charter should provide information to make the process less so.

Other points around this included:

• staff told us that they are sometimes legally obligated to limit the choices of some people, for example where people pose a danger to themselves or others
• the Charter should include information on supported decision making and explanations of what guardianship and power of attorney are
• many people do not always get the information they need to make the best choices about their care
• sometimes information is not accessible and it must be provided in a way that people can understand
• people want to know more about how their information will be used and processed by the National Care Service and its support providers, and how they can request personal information held about them

How we have used this

We used this information to continue to make sure the Charter is providing the right type of information and advice to people. The new draft of the Charter reflects this information including rights to be involved in decisions. It sets out what is meant by power of attorney and guardship and includes information on supported decision making. It also includes details on how people should expect to receive information in an accessible way.

6. People told us they often don’t know how to complain or who to go to if things go wrong, and they are sometimes scared to make a complaint for fear of repercussions.

We heard that often people want to give positive feedback, as well as complaints but don’t know how. They want the Charter to include clear instructions, including a visual diagram to help them understand the process.

Other points around this include:

• some people thought the Charter should set out the option to apply for judicial review in some circumstances where domestic legal rights are not upheld
• some, however, expressed concern that judicial review can be complex, time consuming and costly making it an inaccessible route to recourse for many

How we have used this

We have used this to inform how we present information and guidance about making complaints or other types of feedback. The suggestions people made for this section have been shared with colleagues working to co-design complaints and redress for the National Care Service. Once this has been developed further, these recommendations will help to make up the information included in this section in the final version of the Charter.

Further findings from different stages of the Charter co-design have been published on the Scottish Government website:

• findings from the understanding stage of Charter co-design – How we are embedding human rights into the National Care Service
• findings from the first round of sense-making stage of charter co-design – An update on how we are designing the Charter of Rights and Responsibilities
• findings from the 2023 NCS Regional Forums – Realising rights and responsibilities: Summary of findings from regional forums
• findings from the Health Improvement Scotland ‘Gathering Views’ exercise – Gathering views on the draft National Care Service charter of rights and responsibilities | HIS Engage