What is the issue?

A padlock

Over 2000 people with a learning disability or autistic people are being held in inpatient mental health hospitals in England.

It’s a human rights scandal that we want to stop.
 

People out in the community

Many people are locked up because there is a lack of the right community support, skilled social care , and suitable housing - not because of a mental health problem.

A man next to a list that says Missed targets with years with crosses next to them

Over the last 12 years, the government has promised to reduce the number of people with a learning disability and autistic people in inpatient mental health hospitals.

They have repeatedly missed their own deadlines, and the progress by government, the NHS and local authorities has been far too slow.

Image of a calendar with text reading Target won't be hit until at least 2028.

The latest commitment was to reduce the number of people with a learning disability and autistic people in inpatient units by 50% by March 2024.

We estimate the government will miss this target by at least 4 years.

Protesters holding up signs saying "Stop abuse" and "Is this Care?"

Thousands of families have been devastated due to this failure to act – and thousands more will continue to suffer if action isn’t taken urgently.

  Enough is enough – people should be able to live in homes, not hospitals.  

Help end the human rights scandal

We want the government to finally keep their promise to transform care for thousands of people with a learning disability and autistic people. Ask your MP to write to the Minister responsible and show you will not stand by and let this scandal continue.

Contact your MP now
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Current data shows:

At least 2030

People with a learning disability and/or autistic people locked in mental health hospitals

Over 5 Years Behind

We estimate the government won't hit their own targets to reduce the number of people held in mental health hospitals until July 2029

The Government will need to increase the rate

of inpatient reduction by over 10x per month

to meet its target

60%

of local areas* have not hit their March 2020** targets 

31%

of local areas are going in the wrong direction

NHS Digital Assuring Transformation data, December 2023 (published January 2023)

* By local areas we mean ‘Integrated Care Systems’. There are 42 Integrated Care Systems (ICSs) across the country. In each ICS area, NHS and councils and other organisations work together to meet the health and care needs of people in that area.  

** The March 2020 target was to reduce the number of people with a learning disability and autistic people in inpatient units by 35% overall. Local areas were given specific targets to meet this.

What is Mencap calling for?

A reform of the Mental Health Act 

People with a learning disability and autistic people can currently be sectioned under the Mental Health Act even if they don’t have a mental health condition. This is wrong as people can end up detained in a mental health hospital just because there is a lack of the right support in the community, not because they need inpatient mental health care. We are urging the government to bring in the Mental Health Bill and make it law . The changes need to be strong enough and brought in as soon as possible so inappropriate detentions of people with a learning disability and autistic people stop, and this human rights scandal cannot ever happen again.

Major improvements to the government’s action plan

The government’s latest action plan published in July 2022, Building the Right Support, is not fit for purpose. The government doesn’t set out what it will do differently this time, after so many failures before. It needs to show how it will ensure local areas have enough funding to build the right community support and what steps it will take when that support is not being provided for people with a learning disability or autistic people.

The right support in the community 

The government published a clear model in 2015 for the support and services that should be in place in all local areas. This includes social care providers with the right skills, suitable housing, and health and social care professionals in the community with the right expertise to help prevent and manage crisis situations. This has still not been delivered.

The devastating impact of government inaction on people and their families

Families whose loved ones are in inpatient units now or have been in the past, share their stories:

Leo and Stephen's story

Even though Stephen didn't have a mental health condition, he was sectioned for over six years.

In this video Stephens mother Leo tells of his shocking experiences, and her tireless campaign to set him free.

Divider with hand drawn padlocks in black

Campaigning for change

Hear the stories of families whose loved ones were held in mental health inpatient units to understand why things must change.

Pages from the Tea, Smiles and Empty promises casebook

Tea, smiles and empty promises

Families of some former patients at Winterbourne View came together to mark 10 years since the abuse scandal at the inpatient unit was uncovered, sharing their harrowing stories to highlight continuation of the scandal and the desperate need for change.

Answers to frequently asked questions

Why do people with a learning disability and autistic people end up in these hospitals?

A small number of people with a learning disability may have a mental health problem and benefit from a brief period of assessment and treatment in hospital. However, most people with a learning disability should be able to get the care and support they need in their community. Instead, they are being locked away in hospitals inappropriately due to a lack of community support and end up stuck there for years at a time. 

We know that people with a learning disability or autistic people may display ‘distressed’ behaviours, or behaviour that is challenging. These behaviours are a way of communicating their needs. They may be communicating that they are in pain, discomfort, or feeling anxious and frustrated. Sometimes these behaviours may include self-injury, or destructive behaviours. 

Without the right support, the person may reach a point of crisis and end up being sent to a mental health hospital even when they don’t have a mental health problem. 

For people with a learning disability and autistic people who display behaviour that challenges, the right approach is to provide support in the community. This includes a care package from care staff who have the right skills to support people who may display ‘distressed’ behaviour, a suitable environment (e.g for some people with sensory needs, noise can trigger behaviour), and support from health professionals such as learning disability nurses and psychologists. 

Mencap, the Challenging Behaviour Foundation and Respond has published several guides offering advice and support for families, and outlining what good community support looks like: https://www.mencap.org.uk/sites/default/files/2016-08/Meeting%20The%20Challenge%20guide%201.pdf 

Is a learning disability and a mental health problem the same thing? 

Learning disability is often confused with mental health problems, but they are entirely different. Learning disability is not a mental illness. 

Mental health problems can affect anyone at any time, and may be overcome with treatment, which is not true of learning disability. 

A learning disability is a reduced intellectual ability which affects someone for their whole life. It means that people might need support with everyday tasks such as shopping, cooking or travelling to new places. 

Autism is a lifelong developmental disability which affects how people communicate and interact with the world. 

However, people with a learning disability and autistic people may have a mental health problem as well. In these situations, they need the right mental health support like anyone else, and most people should be able to get the support they need in the community. 

If a learning disability and autism aren’t the same as mental health problems, then why are people being sectioned? 

People with a learning disability and autistic people can currently be sectioned under the Mental Health Act even if they don’t have a mental health problem. We believe this is wrong.

The Government has committed to changing the Mental Health Act and to improve how it works for people with a learning disability and autistic people. They published a Draft Mental Health Bill in 2022 with reforms that would remove the ability for professionals to detain someone purely because of their learning disability, or autism. But we are still waiting for the Mental Health Bill to be brought in and made law. The Government is running out of time to do this before the next election . This is why we are calling on the Prime Minister to bring in the Mental Health Bill and make it law as a matter of urgency.

Unfortunately, people can end up being inappropriately sectioned due to a lack of funding and available services in the community. Local authorities and social services have faced many years of cuts and it’s currently estimated there are 165,000 adult social care jobs vacant in England right now.

With the system under pressure and a lack of investment in either the social care workforce or appropriate community housing options, people are frequently becoming ‘stuck’ in these places with no other options.

When will the changes to the Mental Health Act be made?

The Government has committed to changing the Mental Health Act and to improve how it works for people with a learning disability and autistic people.

They published a Draft Mental Health Bill in 2022 with reforms that would remove the ability for professionals to detain someone purely because of their learning disability, or autism.

But we are still waiting for the Mental Health Bill to be brought in and made law. The Government is running out of time to do this before the next election. This is why we are calling on the Prime Minister to bring in the Mental Health Bill and make it law as a matter of urgency.

What is Mencap doing to address this situation? 

Mencap is working with a number of families who have loved ones either currently in inpatient units, or who have previously been held in one. The experiences of these families underpin all the campaigning work we do, from raising awareness of the issue to the public, to informing the Government about what needs to be done to make sure people with a learning disability and autistic people get the right support in the community.

We are campaigning with families and other organisations on many fronts, both behind the scenes and publicly, to hold the Government to account and ensure they work together with the NHS and local authorities to provide the right support for people with a learning disability in their local communities, not in institutions.

This includes briefing MPs about the issues and responding to consultations to influence policy and the law, including the Mental Health Act. Last year the government published a new ‘action plan’ to get people with a learning disability and autistic people out of mental health hospitals, and we and many others are working hard to ensure it is strengthened and to influence the plan’s delivery.

We also provide information, advice and legal casework support for people with a learning disability who are in inpatient units and their families.

What is a mental health hospital inpatient unit?

When we refer to “inpatient units” or “mental health hospitals” and “institutions” we are referring to the range of inpatient mental health provision in which people with a learning disability, Autism, or both, may be placed under section. This includes assessment and treatment units (ATUs).

Isabelle, whose son Matthew, was detained in an Assessment and Treatment Unit for 15 months, explains what an inpatient unit is in this video:

What is the Transforming Care programme?

The Transforming Care programme was the government’s response to the public outcry about the shocking abuse taking place at the Winterbourne View care home , revealed by BBC’s Panorama in 2011. 

After the exposure of Winterbourne View, the government committed to a programme of work aimed at supporting people to move out of units and back to their local communities. The government promised people in inpatient units would be supported to move back to their local communities by 1 June 2014. This simply didn't happen.. 

In 2015, NHS England has led a 3 year closure programme called ‘Building the right support’. NHS England promised that by May 2019: 

  • 35-50% of inpatient beds for people with a learning disability and/or Autism would be closed 
  • the right support would be developed in local communities for people with a learning disability and/or Autism and behaviour that challenges. 

NHS England published a 'service model' setting out the range of local support hat should be available in each area by March 2019. 

This target was missed and the government promised to close 35% of inpatient beds by March 2020. This was missed as well. 

The government has now committed to closing 50% of inpatient beds by March 2024. This target is in the NHS long term plan.

Why can’t families get their loved ones out of these places?

Most people with a learning disability or autistic people who are in mental health hospitals are detained under the Mental Health Act 1983.

At present, it can be too easy for people with a learning disability or autistic people to be sectioned under the Mental Health Act – they don’t even need to have an actual mental health problem – they can be sectioned simply for having ‘distressed’ or ‘challenging’ behaviours. When this happens, it can be very hard for families to challenge the system.

Once people are admitted, they can end up being stuck there for many years as the environment is wrong for their needs and leads to an escalation of ‘distressed’ behaviours. This can make it even harder for them to be allowed to move back into the community, as professionals will argue their behaviour is too challenging. This is a nightmare situation for families, who feel powerless against a system that has their loved one locked away.

The Government has committed to changing the Mental Health Act and to improve how it works for people with a learning disability and autistic people. We hope this step will help to ensure that individuals and families are properly included and listened to. However, the Government is running out of time to do this before the next election. That is why we are calling on the Prime Minister to bring in the Mental Health Bill and make it law as a matter of urgency.

I’m worried about a loved one who has a learning disability, what can I do? 

If you have any concerns about the wellbeing of your loved one, please contact Mencap’s Learning Disability Helpline. Our trained advisers can offer support and advice, or signpost to appropriate services who can help. 

As every individual case will be different, we want to make sure any advice is relevant to your case. You can visit our website which has lots of information and resources at https://www.mencap.org.uk/contact/contact_mencap_direct or contact our helpline on helpline@mencap.org.uk. You can also call 0808 808 1111 (10am to 3pm, Monday to Friday). 

You may also want to read our Meeting the Challenge guide around poor care and concerns about care practices: https://www.mencap.org.uk/sites/default/files/2016-08/Meeting%20The%20Challenge%20guide%205.pdf