Too many people with a learning disability remain locked away in inpatient units, often many miles from home. Some are subject to physical restraint, overmedication and being kept in isolation.
Despite often fighting for years to get them out, families are powerless against the system.
This is the greatest domestic human rights scandal of our time - where is the urgency to sort this out?
In the video, Claire talks about her son, Ben, who was detained in an Assessment and Treatment Unit for 18 months.
The Government has again failed to deliver on its promise to 'Transform Care' and the latest data from NHS England is evidence of that:
The Government must learn the lessons of the failures to date and do things differently.
The NHS' figures show that there at least 2,095 people with a learning disability and/or autism are currently in institutions. These people can be subjected to physical restraint and over-medication.
It's 8 years since the Winterbourne View scandal, so the Government has had more than enough time to get people back to their local communities, near their loved ones, where they belong.
If you want to know more about these figures please read our press release.
What is an inpatient unit?
Isabelle, whose son Matthew, was detained in an Assessment and Treatment Unit for 15 months, explains what an inpatient unit is.
What we want
We want to see people with a learning disability back home in their communities, living fulfilling lives close to their families and friends, with proper support in place for them in their local area.
This will require the Government, NHS and local authorities working together to provide the right support for people with a learning disability in their local communities.
The Government need to remove the red tape and funding barriers that are preventing so many people from returning home.
Social care reform needs to be prioritised, and NHS providers and local authorities must work together to reunite families, whilst developing and providing suitable care for people with a learning disability in their communities.
What you can do
Spread the word on social media
You can use #HumanToo and #SocialCareNeedsCashNow.
Frequently Asked Questions (FAQ)
We've created the following answers to some of your frequently asked questions. Take a look at the answers beneath each of the questions below.
What is an ATU and how does it differ from an inpatient unit, mental health hospital or institution?
ATU stands for Assessment and Treatment 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).
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. The deadline passed with more people in inpatient units than before the promise was made.
Since 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.
Do people with a learning disability need to be in inpatient units?
Most people with a learning disability and behaviour that challenges should never need to go into an inpatient units. They should be able to get the support they need in their community.
Individuals sometimes experience crisis situations that may require specialist interventions. At these times the following steps are needed:
- An assessment of the cause of the problem.
- A treatment plan to address the identified issues.
- Access to good support that is close to home.
It should rarely be necessary to admit a person to an inpatient unit.
It is important that people can get assessment and support before they reach crisis as this can help prevent them getting to this point in the first place, which is when they are most at risk of being admitted to an inpatient unit.
Why do people with a learning disability get 'stuck' in inpatient units?
Unnecessary admission to institutions is so concerning because people are known to be at an increased risk of abuse and neglect in these settings, and they can also easily get trapped there for many years.
People are often admitted in crisis situations and sectioned under the Mental Health Act.
People can deteriorate because the environment is not right for them and that can make their behaviour worse. This means it is harder to get them discharged as they continue to be seen as a risk to themselves or others.
There are also worrying perverse financial incentives in the system which add to this problem. Once people are sectioned they are funded by the health system, so local authorities might be reluctant to develop community support because they know that they only have very limited budgets to do so. Private inpatient hospitals may also be reluctant to discharge them as having a patient in a bed in a source of money.
Since the beginning of Transforming Care there has been no change in the average length of stay in institutions (over 5 years).
How many people with a learning disability are currently in inpatient units?
There has been little reduction in the number of people with a learning disability and/or autism in institutions since the beginning of the Transforming Care programme.
The latest figures, published in February 2019 show that there are currently 2,305 people with a learning disability and/or autism in these settings. There has also been little change in the number of admissions each month.
Since the beginning of the programme the number of children (under 18 years) in institutions has actually increased. This is extremely worrying.
What support is available for families who have a loved one 'stuck' in an inpatient unit?
We may be able to provide information, advice and support to family members who have a loved one stuck in institutions as well as supporting families to access legal support. This can be accessed on our website or through our helpline.
Mencap, the Challenging Behaviour Foundation and Respond have also produced a number of "Meeting the challenge" guides aimed at families and people with a learning disability to help them know their rights.