Thousands sign our open letter to the Prime Minister
Published on 26 October 2023
Representatives and campaigners from the National Autistic Society and learning disability charity Mencap delivered an open letter signed by 18,234 people to 10 Downing Street today, calling on Rishi Sunak to urgently reform outdated mental health law.
The Government is running out of time to introduce its Mental Health Bill ahead of the next General Election, to ensure promised mental health reforms are made. We are calling for the Mental Health Bill to be included in the upcoming King’s Speech on 7 November 2023.
How many autistic people are currently stuck in mental health hospitals?
Assuring Transformation NHS Digital data published this month shows that in September 2023, 2,045 autistic people and people with learning disabilities are being held in inpatient mental health hospitals in England, of which 205 are children.
The Government promised to reduce the number of inpatients with a learning disability and/ or autistic people by 50% by March 2024. Latest analysis by Mencap shows that this commitment will not be achieved until 2029 at the earliest at the current pace of change.
Many of these people are stuck in these institutions without access to appropriate support, in environments that lead to avoidable physical and mental deterioration. They are often far away from their homes and loved ones, with the average length of stay being more than five years. Furthermore, many are also being subjected to overmedication, restraint, isolation and abuse in these settings.
The Government published its draft Mental Health Bill last year, which proposed vital changes to outdated laws that define autism and learning disabilities as mental health conditions, as well as introducing better protection for autistic people and people with learning disabilities. But now, there are concerns that the Government is planning to drop the bill which would mean breaking its manifesto promise to “… make it easier for people with learning disabilities and autism to be discharged from hospital and improve how they are treated in law.”
Currently, of more than 2,000 autistic people and people with a learning disability in mental health units, 92% are being detained under the Mental Health Act.1 The recent NHS Safe and Wellbeing Review found that more than half (57%) of autistic people and people with learning disabilities were in hospitals away from their homes and families, while 41% of people did not need to be in hospital and their needs could be met in the community. These statistics show the hidden scandal facing some of the more vulnerable people in our communities, whose needs are not being met.
The Care Quality Commission’s State of Care report published last week also highlights the inappropriate detention of people with a learning disability and autistic people: “Our recent Mental Health Act Reviews… show that autistic people and people with a learning disability continue to be in hospital inappropriately when they should be receiving care in the community.” [1]
What we’re calling for
The National Autistic Society and Mencap are calling on the Government to bring the Mental Health Act Bill in and make it law to ensure:
- Autistic people and people with learning disabilities cannot be detained in a mental health hospital under Section 3 of the Mental Health Act solely on the basis of having a learning disability or autism (without a co-occurring mental health condition).
- There is a strong duty to provide community services to autistic people and people with a learning disability to prevent them from reaching crisis point in the first place and ensure those in hospital can be discharged in a timely way.
- Recommendations from Care, Education and Treatment Review actions are made enforceable, so people can be discharged from hospitals sooner.
Leo Andrade joined the charities to hand in the open letters. Leo’s son Stephen, 28, who has a learning disability and is autistic, was detained under the Mental Health Act for over six years, against the wishes of his family. Leo is campaigning alongside Mencap and the National Autistic Society to ensure autistic people and people with learning disabilities can no longer be wrongly locked up.
Leo Andrade said: “It was very emotional handing in the petition today. For seven long years I fought to get my son Stephen released from mental health hospitals. Nothing will ever undo the years of horror my family have endured trying to get the appropriate support for my son in the community.
“Now, I’m appealing to the Prime Minster, as the leader of our country and as a father, to reform the Mental Health Act as a matter of urgency. We need to help shape the future of every child like mine with a learning disability and / or autism in this country who has been or is at risk of being inappropriately detained in mental health hospitals.
“Right now, I want to speak up for those who are not able to themselves – whether that’s people being wrongly detained in units or other families going through the same nightmare - who have been silenced or fear any step out of line could jeopardise their loved ones being released.
“I will keep campaigning alongside people with a learning disability and autistic people and their families until we see the law changed.”
Leo was joined by the National Autistic Society Young Ambassador and mental health advocate, Zaynab Yasin Sohawon.
Zaynab Yasin Sohawon said: “The current mental health act feels like a punishment for being autistic. It’s completely unacceptable to section someone just because they’re autistic but if this bill doesn’t pass into law, the crisis of autistic people being stuck in mental health hospitals will only continue.
“The average time autistic people spend in inpatient mental health units is five and a half years. That’s five and a half years in chaotic, overwhelming and constantly changing environments that are not built for autistic people.
“We need action to prevent autistic people becoming lost in the system like this. Changing this would be life-saving.”
Mel Merritt, Head of Policy and Campaigns at the National Autistic Society, said: “This is one of the greatest human rights crises of our generation – and it must end now. Autism is not a mental health condition and mental health hospitals are not the right place for the vast majority of autistic people. Yet we’ve seen countless harrowing examples of people being locked away in seclusion and subjected to abuse in these settings.
“The trauma caused to those who are wrongly detained in hospitals, scared and alone without the right support they need, is unimaginable – with a devastating and long-lasting impact on their physical and mental health.
“The Government must include the Mental Health Bill in the upcoming King’s Speech to urgently reform outdated mental health law so that autistic people get support in their homes and communities, with their families around them. This crisis cannot be allowed to continue.”
Paul Donnelly, Head of Campaigns and Activism at Mencap, said: “This petition should be a wake-up call for the Prime Minister. It shows overwhelming public support for the Government to urgently reform the Mental Health Act.
“The vital reform pledged in the Government's 2019 manifesto must not become yet another broken promise to people with a learning disability and autistic people and their families
“Families like Leo’s have been campaigning for too long for change. People must be able to get the right support in the community and not be inappropriately detained in mental health hospitals. Mental Health Act reform is a crucial part of making this happen. "
The Rt. Hon Robert Buckland KC MP, and Chair of the All-Party Parliamentary Groups on Learning Disability and Autism, has heard first-hand from his constituents about the anguish and trauma caused by loved ones being locked up in mental health units and is urging the government to act now.
The Rt. Hon Robert Buckland KC MP said: “Mental Health legislation is not fit for purpose and long overdue reform. I stand with families, people with a learning disability and autistic people, in calling for a new Mental Health Bill. It is time to stop the inappropriate detention of people with a learning disability and autistic people. I hope the Prime Minister hears our call and brings this Bill before Parliament as a matter of urgency."
Further information
Read our news story on the Joint Committee’s report on the Draft Mental Health Bill.
Read our news story on the Government’s Draft Mental Health Bill
Read Alexis’ story about being “locked inside” various mental health hospitals for three years.
Read our news story on the Government’s Building the Right Support Action Plan
Read our information, advice and guidance about autism and mental health.