BBC Scotland’s recent Disclosure programme, Locked in the Hospital, highlighted a damning human rights scandal that has been unfolding on our doorstep for more than two decades.
In Scotland today, BBC Scotland has uncovered that 129 people who have a learning disability and/or autism have been in hospital for more than a year; 40 people for more than 10 years; and 15 people for more than 20 years.
Not because they are unwell, but because they cannot find the right support to live the life they choose, in the community they choose, close to the people they love.
Worse, since being in hospital and expressing how unhappy they are to be there, kept apart from their family and denied of the freedoms to do the things they enjoy, those individuals become labelled as people who are ‘too complex’ – when in fact their environment is what has caused this situation.
Enable Scotland’s member-led #MyOwnFrontDoor campaign highlighted this human rights abuse in January 2022.
Enable Scotland member, campaigner and an adult with a learning disability, John Feehan said: “I was shocked by what I watched. It was upsetting. But it wasn’t surprising.
“People with learning disabilities struggle to have their voices heard in everyday life, and that’s very clear from what I watched on the BBC report. This situation has gone on for far too long and that’s why I'm speaking up. I am challenging the Scottish Government to make changes, and to make them quickly.
“Nobody should be stuck in a hospital, and it makes me incredibly angry that this is happening in Scotland to this very day. People with all sorts of learning disabilities can end up stuck in the system and we see, more often than not, that this results in things getting worse for them, not better at all.
“When someone is unhappy where they are, it gets harder for them to communicate. Their behaviours change as they try to express emotions, to a point where they can be branded as “bad” or “difficult”. It's a vicious cycle and we need to stop it in its tracks. All behaviour is communication. It’s high time people actually listened.
“People who are under the care of a hospital should not be kept prisoner for months, years and especially not decades. It’s a scandal. Nobody should be forced to live away from their family and their community just for having support needs that are not being met – families are desperate to be reunited, so why are we standing in the way?
“Some think that people who have a learning disability are not able to live in local communities like everyone else. They think that that it is easier for them to be locked away in hospital, or to live with lots of other people who have a learning disability. That isn’t true.
"Many will end up in a facility that is not right for their needs because the correct support is not currently there. Anyone can live anywhere with the right support. We need to help those people right now.
“This human rights emergency must be addressed right now. The horrible stories shared in the BBC Disclosure programme needs to be the last time we see this. Get people home now.”
Jan Savage, director at Enable Scotland, condemns the pace in which the system is addressing this critical issue. she said: “This is completely unacceptable. It flies in the face of policy commitments since the seminal Same As You report in 2000, and is not consistent with Article 19 of the UN Convention on the Rights of Persons with Disabilities, which states that people who have a learning disability have the right to live independently and be included in the community.
“While progress has undoubtedly been made over the last 20 years, with the closure of long stay institutions from the late 1990s, there seems to be a final remaining barrier to fully ending inappropriate institutional placements which is proving stubbornly resistant to change.
“With over £4 billion of public money spent on adult social care in Scotland every year, via 1,000 registered social care providers across the country, we must ask ourselves - why? We know that better is possible.
“Indeed, at Enable we have demonstrated – through a balanced partnership of equals with individuals, the NHS and social care professionals across multiple disciplines – that it is possible to support a person out of long-term hospital placements into sustained community-based living where that person directs their own support, and thrives.
"We cannot allow the systemic response to the current post-pandemic pressures to be a defaulting to institutional 'solutions' for our citizens who have complex care and support requirements. We should be learning from, scaling and replicating human rights-driven, self-directed support solutions which have demonstrably worked. This approach must be made available as a right to people who have a learning disability to empower them to live the life they choose, in the community they choose, supported by the people they choose.
“The Scottish Government and COSLA’s commitment to “reduce” inappropriate long-term hospital stays by March 2024 is very welcome and coincides with plans to launch a National Care Service by 2026. The Scottish Government has also committed to introduce a new Learning Disability, Autism and Neurodiversity Bill in this Parliament, and this will be a monumental opportunity to enshrine the rights of people to not be subjected to long stays in hospital, and to be supported to access their rights to live in the community.
“But the human rights of people with a learning disability cannot be suspended indefinitely while we wait for new policy developments. The Scottish Government and Cosla have themselves set the deadline - we have until March 2024 to give all the people identified by the BBC Disclosure programme the keys to their own front door. The clock is ticking.
"Enable Scotland and its members eagerly await the day that every person in Scotland is credited with their basic human rights to live independently, in the community they choose, supported by the people they choose."
Join Enable’s #MyOwnFrontDoor campaign here.