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In Control: set up by recipients of health and social care

This case study forms part of the What Good Looks Like report on people with a learning disability and autistic people. This co-produced report was commissioned from the Building the Right Support (BTRS) Advisory Group, as part of the wider action plan developed by the Building the Right Support Delivery Board. It has been supported by Partners in Care and Health.

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In Control started in 2003, and now operates across England. It was set up by people who were recipients of health and social care and then ran a project for the Department of Health and Social Care, with Mencap hosting. It originated because funding was being identified to sit alongside person-centred care but there used to be no choice and control for people about how money could be used better. Self-directed support sought to embrace self-determination and to help people avoid perverse incentives within the system including the crisis driven criteria, that often operates across many systems.

In Control has a broad scope and is very inclusive, but it does have three key areas of focus. They are to:

  • offer help to anyone who needs support of all age groups
  • help people live an ordinary life and will not support any action that results in institutional living
  • advance the education of the public; and seeks to ensure that people are included and that their human rights are upheld.

The challenge

Like other initiatives In Control has had to overcome barriers and it hasn’t always been easy. Self-directed support is counter-cultural in many ways, and it was seen by many as a new way of doing things. In short, it was different.

Fundamentally there is a notion that support and care is seen as a “service industry”. Reliance on block contracting or large scale “one size fits all” approaches makes it much more difficult to be truly person-centred. In effect, “people are treated like widgets” and commodification of people is sometimes evident.

To overcome this, they sought to find willing people to try to get people to reach for a deeper understanding of their aims, asking what is your wider mission? This has needed a shift in thinking and a shift in the way things get done.

Within the current system it is evident that supporting people really being “in control” means letting go of power and resources. However, trust is limited. There is little scrutiny of spend on a million pound block contracts, but someone getting £75 a week is heavily scrutinized and asked to account for every last penny!

They have reflected that what follows is a lack of creativity because “when trust is limited – creativity is limited.” The risk is that in operating like this we supply unsuitable services that create failure demand. It is costly in terms of cash and distress.

Another problem is that the existing models of care and support are very resilient. Historically, people know them and they are part of the social care furniture. However, the creative, little new providers aren’t resilient in their early days so it’s something we need to address.

For Building the Right Support that creates problems because if there’s a bed it will get filled. It’s a case of “Build it - they shall come!” They aim to overcome this through trying to educate people from the wider workforce to leaders. In Control builds on and enhances the national support offered through NHS England and is for those sites wanting to drive implementation further forward. We offer more individual and practical support on a local level.

For example, they could provide modular training, facilitate collaborative workshops geared towards each stage of implementation, help organisations set out a new pathway, or provide on-site dedicated support from our expert advisers who will attend meetings and events or act as 'critical friends or mediators'.

The solution

In Control really is there to offer long term support to those who need it. They realise that short term interventions are not always helpful and there to help people. Their work is not specifically linked to housing but they will support people with a need for technical advice. The aspects of their approach are:

  • They will always link people with those who can help and will try to provide advice of any kind. Whilst people may access other expertise In Control will stay alongside the person. They know who to ask and will also help people access solicitors too, if people need legal support
  • They manage to constantly stay involved with people and make sure that coproduction was central to how they work.
  • They aim to provide a platform of people, there to help. Sometimes it has meant they need to stay balanced, “on the fence”, to maintain key alliances and relationships which includes local councils and hospitals. They seek to challenge in a way that supports to organisations and builds networks.
  • They recognise that any future change has got to be done together, building on human connections, and understanding.
  • They have been deliberately active in shaping public policy and have sought to politically influence where this is needed. They speak with conviction to policy makers, and know that stories make a difference. "It helps to take issues requiring resolution from number 10 Any Street, to number 10 Downing Street."

Social Care Future

Advancing the education of the public is a key aim of In Control. Therefore they undertake activities like hosting Social Care Future, supporting the right social care reform. Their aim is also to reframe the narrative about social care and get the public to understand that the presented information does not always cover the whole picture, and that social care is much broader than supplying care to elderly people.

It’s about getting away from the picture of “wrinkly hands” to understanding more about rights and self-determination.

They utilise and support active research about how the public see social care working with people like Neil Crowther.

They are also mindful about the use of language, and words that help to get the vision adopted. Social Care Future’s vision is 

We all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us.”

They are working with Anna Severight and have launched an inquiry to guide the strategy of our movement and model the leadership of people with lived experience. They also have several other workstreams.

Be human initiative

Our dream is for all organisations to be more human.”

In Control is the host for the Be Human movement. It consists of a charter type set of principles of what they would like to expect from good public services and organisations.

Organisations then test these principles in various ways with their employees and/or customers/recipients of support. It is based on the view that when working in organisations, “Don’t blag people.” Be human and get back to people in a timely manner. They are now looking at who will sign up to this, and how they can support it effectively.

When the pandemic hit a lot of people needed support to access the right help. In Control offered informal and formal mediation to help individuals and organisations find resolution to growing areas of pressure or conflict. This support was provided as a type of pre legal action, avoiding litigation through facilitating compassionate and sensible conversations. Areas of focus that we supported were in things like application of the Care Act or charging.

Partners in Policymaking

Partners in Policymaking is an umbrella name for a suite of leadership training courses for disabled adults, parents and carers of disabled children, professionals and other service providers working in education, health, and leisure. It has grown over the past twenty years into further leadership courses and the development of a national network of people – champions who believe that all people should have the right to live the life they choose.

How is the new approach being sustained?

For the future there is a concern the reversal of self-directed support, due to resilience of changing the old ways of doing things, even though they don’t work well for people. However, In Control is hopeful for the Social Care Futures and the Be human initiatives.

More exemplars are needed so that positive influence and spread will happen, and people and families will keep sharing their experiences and knowledge. Bringing people into the movement through technology is helpful for the future, and people knowing their rights is always useful.

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