In 2023, IMPACT ran a Network to bring together people across the four UK nations to discuss how to support people with learning disabilities/autistic people to leave long-stay hospitals. Each Local Network drew on their own personal experience and practice knowledge regarding the issue, and made local action plans on the basis of their Network’s membership and local needs and priorities.
However, those who took part in the Network also agreed that this topic is one that needs greater public awareness and action at a national policy level, and therefore wanted to work together on this.
Bild facilitated the creation of a video inspired by three main themes, or core values, that came out during the Networks’ meetings:
- Co-production
- Equality and Human Rights
- ‘Homes not Hospitals’
Co-production
One of the main shared values across the Networks was the importance of co-production. All Networks agreed on making sure that the voices of people with lived experience is heard and included.
For this reason, the creation of the film was led by people with lived experience of long-stay hospitals, either through their own admission or admission of people they care for. It includes the stories of people with a learning disability and autistic people, and their carers across the four UK nations.
“It has been an honour to meet and share insights on the inappropriate detention of people in our community. As I witnessed people’s testimonies, I felt deeply sad that each person’s experience shared a common theme – that of missed opportunities. However within our collective despair are our shared hope and optimism that with the right support and investment things can change”
The video has been facilitated and directed by Alexis Quinn – Manager of The Restraint Reduction Network and a person with lived experience.
Equality and human rights
During the IMPACT project, the Networks highlighted continual human rights violations in long-stay hospital settings experienced by autistic people and people with learning disabilities. Therefore, the Networks decided that a priority of the collective action was to share the negative consequences of ‘risk management culture’ in institutional settings, alongside the missed opportunities, human rights breaches and unmet needs of those in these settings.
The film has captured, in a very powerful way, the human impact that these have on individuals detained in inpatient settings and their families.
“You’re talking about right to liberty, right to family life, right to autonomy, you’re taking so much away from people when you absolutely don’t need to. By taking those rights away, you not only deprive them of their legal rights, but you are making their life worse and worsening their chances of getting out of hospital.”
Julie Newcombe (video participant)
‘Homes not hospitals’
The Network also highlighted ‘stories of hope’. There are a range of good practices across the four UK nations to avoid hospitalisation and to support people with learning disabilities/autistic people to have a good quality life in the community.
The film is focussed on the prevention of admission. While it highlights the missed opportunities to provide the right support for people with learning disabilities and autistic people, its main aim was to showcase alternative ways to work in the community to demonstrate that a different way is possible.
Webinar and Wider Launch
We are very excited to invite you to attend the launch of the video during the webinar ‘Homes not hospitals: the impact of missed opportunities’, which will be on Monday 14 October, 12:30 – 2:00 pm via Zoom.
The focus of the webinar is the idea at the core of the video, which is ‘homes not hospitals’. The event has the following aims:
- To raise awareness of an issue that is largely invisible
- To highlight how people’s human rights have been breached
- To provide ideas on what can be done to prevent people with learning disabilities and autistic people being ‘stuck’ in long-stay hospitals, and what can be done to prevent admission to hospital in the first instance
The panel will be composed of Alexis Quinn, who facilitated the video, Professor Jon Glasby and Professor Robin Miller, University of Birmingham, Sanchita Hosali, British Institute of Human Rights, William – a person with lived experience and participant in the video, Alastair Minty – In Control Scotland and New Routes home and one of the IMPACT network coordinators.
Case studies
I have been through the system, from having a crisis and being in hospital to a range of living situations, from very restrictive, all the way up to having my own tenancy and hiring my own staff.
In hospital there was a lack of privacy and everyone was expected to be the same, it didn’t help me deal with the problems I was facing. In other places there were also so many rules that made it clear you were a risk to be managed (Pinpoint alarms and curfews for everyone).
As I got supported by different organisations and in different places, I started to notice the effect on my life of being listened to more and having more choices. You can get used to not having rights and when a new organisation came in looking at that it made me see things could be a lot different, not just a little. Even then, not everything goes well, and the most important thing is how good the staff that work with you are.
Having people that listen to me and help me do what matters to me is not just about paid support. Most of my life is volunteering and getting involved in things to help others. If the way people viewed me hadn’t changed, with people trusting me to do different things that matter to me, I could have been back in hospital if I had another crisis. Rules and restrictions didn’t keep me safe, real purpose and connections did.
William (video participant)
What saddens me is the lack of accountability and denial of any harm or wrongdoing.
Over the past seven years I have had to witness my son be traumatised over and over again. When I question or disagree, complain, raise concerns, I am met with the door being slammed, flat denials, hostility and seen as the problem. I also know Gordon has suffered as a consequence of this.
There is an overall attitude from the powers that be – “he is in the best place and receiving good care and treatment”. Even when there is clear, overwhelming evidence that this is absolutely not the case. Far from it in fact.
It seems to be that it is acceptable to let people suffer long term and have years of their lives stolen from them.
Well it is not acceptable and is a national scandal. There is a better way of doing things. I always wonder how Gordon’s life would have turned out if that better way had happened for him?
I have not seen or spoken to my son for over 4 years now, but still, all he wants is to come home to his family and live his life happily. Just like many others trapped in institutions.
All so brave and enduring so much, but clinging on to the hope that it will happen.
Ruth Hughes (video participant)
We know better than this, and have done for decades. The system too often still expects people to get less anxious and meet standards in terms of their behaviour before moving on from a high stress environment that doesn’t meet their needs or Human Rights.
There have been many reports indicating the scale of the problem and the need for a shift. This film tells the story of the unnecessary suffering that results when people have to fit the system, rather than the other way round. It also shows it doesn’t have to be like this. There are stories of lives changed through relationships, trust and flexibility. If this film doesn’t fill you with a sense of urgency for the need to shift power, to ensure accountability to the person and those around them then it is likely you are reaching for the bag of excuses as to why it is not practical or possible within the system we have.
Many of us have heard the same for years, and then gone out and proven that change is possible, even within a flawed system. The fact that in 2024 there is still a lack of large-scale shift to stop control, restrictions and restraint being used instead of flexing around what the person needs is a national scandal, we must do better.
Alastair Minty (video participant)