For decades the system, or more accurately local strategic direction, has been putting or threatening to place people in secure settings.
Usually this is about options, risks or perceived risks. The act of placing someone in a secure setting is an admission of failure to listen to the aspirations of the person and their family and friends. It is a failure to develop and offer great support within community.
The impact on the person, their family and community is negative, frequently catastrophic and always traumatic.
More than 2,000 people with learning disabilities and/or autism are in inpatient units in England, according to NHS figures.
Segregation by design
Government initiatives that have started with a belief that it is possible to improve segregated services have tended to be abject failures. You cannot retrofit human rights and an individual-centred approach into spaces and systems designed to separate and control.
Breaking local beliefs and fears around procurement processes and having conversations about something that feels new can be hard
Frustrated with NHS England’s Transforming Care programme to move people from inpatient units and into homes in the community, around five years ago, the National Development Team for Inclusion (NDTi) went out to find local support organisations which seemed to be getting it right.
We wanted to understand what enabled people who needed to get out of or who were at risk of secure placements to thrive.
Finding what works
We connected with a handful of leaders who were developing services around the person, in their community and in a sustainable way that provided value for money.
Drawing in the Local Government Association, together with support providers Beyond Limits, C-Change and Positive Support for You, we formed the Small Supports Partnership.
As a partnership, we recognise small supports have several characteristics (see box, below).
We’re working with 11 local agencies at varying stages of development and, over the coming three years, we will be working with 20 more.
Eleanor Roosevelt said it best in 1958: “Where after all, do human rights begin? In small places close to home, so close and small that they cannot be seen on any maps of the world. Yet they are the world.”
Over the last couple of years, we have been working with local agencies to try to understand how small supports can be encouraged and sustained.
Nationally, many of the systems for planning and commissioning services are broken, hampering rather than generating creativity and innovation. However, what exists can be adapted to find and encourage new leaders, develop small organisations and offer the right funding.
Locally, this requires creativity and commitment from commissioners who will walk alongside people and their supports, political will and, above all, the trust of people and families.
The biggest difficulties have been finding and supporting people willing to able to step out of more traditional roles.
Breaking local beliefs and fears around procurement processes and having conversations about something that feels new can be hard. There are some small supports organisations celebrating their 20th birthday, so we know it can be done.
Michelle, who would rather not give her surname, is supported by Positive Support for You in Teesside. She is celebrating 10 years of renting her own home; she was previously in a long-stay hospital. Michelle is now looking forward to buying her own forever home.
She says: “I am a lot happier living in the community and having support so I can do the things I enjoy, like going for walks and shopping for things for my home.”
Bill Love is director of delivery and impact at the National Development Team for Inclusion
Expert input shifts the power dynamics and promotes choice
As project lead for one of the first NDTi small supports sites in Lancashire, my focus was on creating a space in which the team felt confident, safe and compassionate. This was because people were sharing challenging issues from a personal and professional angle, and were very vulnerable.
We created this by modelling language and behaviour in our virtual meetings and approach, and taking a slower pace. We were clear about language, for example using “individuals” and avoiding “service users” or “patients”; we wanted to use the language of citizenship.
The programme began in 2021 and sought out experts by experience to join it. Five experts with lived experience of being an inpatient in secure settings took part alongside four expert family carers. Importantly, the experts were paid in line with the NHS day rate if they chose. We employed a small supports friend, who supported the experts before, during and after the meetings.
The advantages of having the experts in the room contributing through what we called listening rounds – meetings where each person has the same amount of time to make a point or contribute ideas or questions – soon became clear. They kept us thinking about how to shift the power dynamics from being professional led to being person led.
It became apparent the experience of the experts leaving hospital was the opposite of person centred. The traditional tendering system meant people had very little if any choice of provider or home. It felt as if very little was planned with them at the centre of decisions.
We designed a new application process for providers, with the experts by experience deciding which of them would be recruited. The experts also designed information in easy read.
I like to think of our team of experts as the gold running through the project; their insights, illuminating the way to improve everything we did, were invaluable.
It is always worth taking the time to listen and build the safe culture needed for all to communicate with confidence in order to unlock this treasure. The project may take longer but, if you build in this expectation and understanding, everyone will benefit from the results. We all now understand why and how we could do better when commissioning support.
Three new support providers are now being matched with their first individual. If those individuals choose to work with that provider towards their hospital discharge, they will be officially matched and together will develop the support plan and the move to a new home.
Stephen Paul is one of the experts by experience who helped co-produce the project. He is also employed as a peer supporter for Lancashire and South Cumbria NHS Foundation Trust.
“I wanted to make sure potential providers were the right people, people who had experience of supporting people with learning disabilities and autistic people. I really enjoyed working on this important project because I got to interview family carers and professionals,” he says.
“My hope is that people will get out of hospital into the community. I want to see commissioners listening to people and offering choice to them, and small supports is one of those choices. I want people to get better support because they’ve chosen for themselves.”
Amanda Topps is an NDTi associate and project lead for Small Supports
- The first line of this piece was amended on 11 July 2023 to clarify that the small supports sites referred to is in Lancashire, not the Black Country as stated in an earlier edit of the article.
