Earlier this week, the House of Lords gathered to hear the second reading of the Mental Health Bill. Baroness Merron, who sponsored the Bill, said it will ensure that mental health care is “appropriate, compassionate and effective” and give patients greater control over their care.
Baroness Merron’s Bill proposes a series of reforms, including stronger protections for people with a learning disability and autistic people. There are currently more than 2,000 people with a learning disability or autism detained under the Mental Health Act (MHA), with an average length of stay of five years, and 355 people detained for more than 10 years.
Under the current legislation, people with a learning disability and autistic people can be detained under the MHA even if they do not have a mental health condition, leading to wholly inappropriate detentions. In addition, a lack of inpatient beds means people are often put in placements far away from their homes and loved ones. This can add to distress, leaving people at risk of abuse, seclusion, and physical and chemical restraint.
Inpatient care is also extremely expensive, with Mencap estimating it to cost as much as £534 million per year. Indeed, the charity says the government is currently wasting an “appalling” sum of money on the “wrong type” of care.
It is clear the outdated and archaic mental health system needs modernising. But will the new Mental Health Bill do enough to end the inappropriate detention of people with a learning disability and autism once and for all?
Many learning disability and autism charities have welcomed the Bill’s proposal to introduce a 28-day limit for which people with a learning disability and autism can be detained. However, this proposal comes with a caveat: the policy only applies to those who do not have a cooccurring mental health condition.
Some critics says this approach will therefore have a lessened impact on people with a learning disability and autistic people, as statistics show that 50% of this group of detained inpatients have other psychiatric diagnoses.
This point was raised in the second reading of the Mental Health Bill by Lord Touhig. He said: “Given that eight in 10 autistic people experience mental health issues, without the right safeguards, there must be concern that the new provisions could simply lead to a continuation of the current intolerable situation.”
He said there is therefore a danger of allowing a “critical gap” to form “between what happens at a policy and legislative level and what happens on the ground.”
“Without reckoning with this gap and setting up measures to ensure that what is said by government turns into real action on the ground, these reforms will not change the decades-long scandal of thousands of autistic people being detained inappropriately,” he said.
Lord Adebowale also warned that a 28-day period may not be long enough to complete a thorough assessment, given that people with a learning disability and autistic people often present in a complex manner.
Concerns were also raised about effective discharge processes. Baroness Keeley warned that currently, discharge planning is often delayed because those responsible see the needs involved as too complex or feel that there are no suitable care providers. To illustrate this, she highlighted two cases: a young autistic woman called Bethany, and Tony Hickmott, an autistic man with learning disabilities.
Bethany was kept in seclusion in St Andrew’s hospital, Northamptonshire, in a cell-like room where she was fed through a hatch in a metal door. Bethany was detained and held in seclusion despite an assessment that the hospital setting could not meet her needs and a recommendation that she should be moved to a community residential setting with high support. The lack of funding for support in the community was clearly a factor which prevented her discharge, despite the fact the move would have more than halved Bethany’s care costs.
Baroness Keeley raised Bethany’s case numerous times in the Commons, and she was at last discharged to live in the community. Fast forward seven years and her father talks about what a happy life his daughter now has, in her own property, with good support from a wonderful care team.
For Tony, the outcome has not been as positive. Up until 2022, Tony had spent 21 years in a secure assessment and treatment unit (ATU), despite meeting the criteria for discharge in 2013. Tony was prevented from moving back home with his family because a suitable community placement could not be found for him. After applying to the Court of Protection in 2019, Tony was eventually discharged from hospital to live in a specially renovated house with care from a brought-in provider.
However, Baroness Keeley says this did little to give Tony the freedom he and his parents have yearned for so long, as he is now effectively barricaded into his bedroom with care staff operating the house like a seclusion room. Tony is being held under deprivation of liberty safeguards and his parents are prohibited from taking him out into the community.
It is therefore clear that this new legislation is unlikely to have a meaningful impact unless community support is properly funded. Baroness Keeley says achieving a discharge destination for people currently detained could also be improved if mental health tribunals are given the power to compel a local authority or NHS body to find a discharge destination in the community or if the Court of Protection was used more to rule on discharge arrangements.
It is also currently unclear how long a patient must be discharged for before being readmitted to a hospital setting.
The lack of community support is something that cropped up repeatedly during the second reading of the Mental Health Bill. Indeed, Baroness Hollins emphasised that the Bill’s success hinges on “effective implementation, accountability and substantial investment in community services”.
While the Mental Health Bill includes new duties on health and care bodies to provide the community-based support and therapeutic approaches needed to prevent unnecessary detentions, Baroness Hollins says legislation alone will not provide better care: “The right people in the right place with the right skills are needed,” she said.
Baroness Hollins said without the right community support, early prevention measures, rapid response teams, crash pads and effective therapeutic interventions, there is a risk that autistic people and people with learning disabilities could be diverted into emergency services or the criminal justice system.
She also stressed the need for a new action plan to replace the Building the Right Support action plan, which has also been called for by Mencap, the National Autistic Society and several other charities.
“This is particularly urgent given that targets to reduce inpatient numbers of people with a learning disability and autistic people have been repeatedly missed over the last decade, and only one in five integrated care systems have currently met the March 2024 target for reduction of inpatient numbers,” she said.
Currently, section 117 of the Mental Health Act 1983 stipulates that some inpatients (those detained under section 3, 37,45A, 47 or 48) are entitled to free aftercare when they leave hospital. This aftercare provides support or services linked to mental health conditions and helps to reduce the risk of the person needing readmission to hospital. Under the new legislation, people detained under the Mental Capacity Act (MCA) or Deprivation of Liberty Safeguards (DoLS) will no longer be entitled to free aftercare to support them in the community after discharge.
Lord Scriven said that removing aftercare for people with learning disabilities and autism is “worrying”, and this must be looked into before the legislation is published. Baroness Hollins raised similar concerns and said social and health care should be integrated for all patients based on need, not the section they were detained under.
“For example, a financial crisis causing suicidal thoughts in a farmer might lead to a Section 2, when a social prescription might have been effective. After assessment, they will return to the same situation without appropriate support, such as legal or financial advice to resolve the crisis,” she said.
Such concerns have been raised by other disability charities, such as Inclusion London. Simone Aspis, campaign manager for Free Our People Now, said a lack of aftercare could lead many autistic people and people with learning disabilities to be on a continuous “merry-go-around of being in an out of hospital.”
To conclude the Mental Health Bill’s second reading, Baroness Merron said she will endeavour to respond to as many of the concerns raised as possible at the next Committee meeting.
She expressed gratitude to Members who raised “very important points” regarding learning disability and autism, and said she recognised that we need to improve care and support for the over 2,000 people who are currently detained, as well as anybody who may need support in the future.
“We know from the NHS’s safe and wellbeing reviews that four in 10 people who are detained in this group have needs which could have been met in the community with appropriate support. That is why we are going to be focusing on developing community services and improving the quality of care, which will happen alongside the Bill’s reforms,” she said.
She added that a package of measures for those with a learning disability and autistic people will be bought forward alongside ‘significant’ investment, but the exact timing of implementation of the reforms will depend on future funding. She added that she will continue to engage with expert stakeholders and those with lived experience, including parliamentarians, and to update the House as the Mental Health Bill progresses.
