Dimensions Briefing on Mental Health Detention of People who have a Learning Disability and/or Autism

Here we share our detailed thoughts on the Mental Health Act white paper.

The Current System

• People who have a learning disability can be detained under the Mental Health Act (MHA) if:
  –  Their learning disability is associated with abnormally aggressive or seriously irresponsible conduct and,
  –  Under section 2:
  – They are suffering from a mental disorder (i.e. their learning disability associated with abnormally aggressive or seriously irresponsible conduct) of a nature or degree which warrants their detention in a hospital for assessment
  – There is a need to detain the person in the interests of their own health or safety or with a view to the protection of other persons
  – Under section 3:
  – They are suffering from mental disorder (i.e. their learning disability associated with abnormally aggressive or seriously irresponsible conduct) of a nature or degree which makes it appropriate for them to receive medical treatment in a hospital and,
  – It is necessary for the health or safety of the patient or for the protection of other persons that they should receive treatment and it cannot be provided unless the person is detained
• People who have autism can be detained under the MHA if:
  – Under section 2:
  – They are suffering from mental disorder (i.e. autism) of a nature or degree which warrants their detention in a hospital for assessment
  – There is a need to detain the person in the interests of their own health or safety or with a view to the protection of other persons
  – Under section 3:
  – suffering from mental disorder (i.e. autism) of a nature or degree which makes it appropriate for them to receive medical treatment in a hospital and,
  – It is necessary for the health or safety of the patient or for the protection of other persons that they should receive treatment and it cannot be provided unless the person is detained
• The current criteria for detention mean that people who display distressed behaviour can be detained in hospital. Distressed behaviour might include self-harm, hitting others, smashing or damaging the physical environment (often through self-harming behaviour).
• Dimensions believes that distressed behaviour is how people communicate when their needs are not being met properly.
• People who have a learning disability and/or autism and who display distressed behaviour will invariably need an intervention that seeks to understand the cause of that distress and offers support around it – this might include:
  – support from people who understand the person’s particular communication needs
  – support in adapted housing
  – support from a specially trained support team
• Dimensions underlines that both learning disability and autism are life-long conditions that are not and should not be considered susceptible to treatment. This means that, where a person has no co-occurring mental health need, it is very unlikely that detention in hospital will offer appropriate support for their distressed behaviour.
• Currently, both section 2 (detention for assessment) and section 3 (detention for treatment) can be applied to people who have a learning disability and/or autism when they meet the criteria above.
• The most recent NHS Digital data on inpatient care of people who have a learning disability and/or autism cites that 92% of people are detained subject to the MHA.(1)
• Dimensions believes that the current criteria for detention of people who have a learning disability and/or autism represent a medical approach to supporting people.
• The primary reason that people who have a learning disability and/or autism spend such long periods in inpatient care is that the underlying cause of their distressed behaviour is not addressed through hospital detention.
• Dimensions believes that community based support is the right model of support for people who have a learning disability and/or autism. Only once an appropriate community based support package is available will they get the right support to manage and reduce distressed behaviour, because the cause of their distress will be addressed.
• It is well established that inpatient services often struggle to meet the needs of people who have a learning disability and/or autism. A lack of training, staff consistency, reasonable adjustments and adaptations to hospital wards mean people’s distress often increases in inpatient care.
• This can create a cycle where people admitted to hospital display even more distressed behaviour, meaning they are considered an ongoing risk to themselves and/or others. This makes it difficult to discharge the person.
• The lack of appropriate treatment options in hospital also underlies the over use of medication, restraint, seclusion and other restrictive practices. Hospitals are trying to respond to a person’s distress with the wrong tools and this often means they can only contain the person’s distressed behaviour, rather than address and reduce it.
• Dimensions believes people who have a learning disability and/or autism are being failed by the current system of mental health detention.
  – It is too easy for people to be detained under section 2 and section 3 of the MHA – the lack of appropriate community based services to prevent people reaching crisis and to respond to people in a crisis means inpatient care is often seen as the only safe option for someone in distress.
  – Once detained, a person’s distress increases and the risk they pose increases, making it difficult for clinicians to feel comfortable in discharging the person.
  – The person will stay in hospital despite the fact that effective treatment is not available. Essentially, they are contained, rather than treated.
  – Lack of oversight and limited safeguards mean that discharge planning is often slow and there is limited accountability for lack of progress.

The Proposed Reforms to the Mental Health Act

• The MHA White Paper proposes to:
  – Exclude people who have a learning disability and/or autism from detention under section 3 (detention for treatment), unless they have a co-occurring mental health need that can be treated in hospital care.
  – Permit people who have a learning disability and/or autism to be detained under section 2 (detention for assessment) only if there is a probable underlying mental health cause for their distressed behaviour.
• Broadly, Dimensions supports the proposed reforms to detention criteria. We believe this is a step in the right direction in terms of de-medicalising approaches to supporting people who have a learning disability and/or autism.
• We believe that the aim of the reforms, i.e. to reduce the overall use of inpatient care and the inappropriate detention of people who have a learning disability and/or autism, will only be met if proper investment in community services accompanies the legislative changes.

Criteria for detention under section 3 of the MHA (detention for treatment)

• We recommend that a strong causal connection between someone’s distressed behaviour and their co-occurring mental health need must be established in order to detain someone who has a learning disability and/or autism under section 3.
• It is not sufficient for someone to be detained under section 3 because of their distressed behaviour, if their distress arises from unmet support and communication needs and where their mental health need is only co-incidental.
• Clinicians making decision about detention should be informed about the person’s support – including communication support, housing arrangements, the number of support hours they receive and the support available to family (e.g. short breaks), before making a decision as to whether their distressed behaviour is a result of a mental health need that can only be treated in inpatient care.
• Clinicians should be under a duty to consult with the person; their nominated person; loved ones; and people involved in the person’s support. There should be an effort to seek a consensus on whether the person would benefit from treatment in hospital for their mental health need.
• We recognise that in some cases, it may be very difficult to determine whether it is someone’s support needs or mental health needs that are driving their distressed behaviour. There is no clinically agreed framework in relation to this. This puts people who cannot communicate verbally about their mental health at particular risk of detention under section 3.
• We recommend that any person who has a learning disability and/or autism must receive a multi-disciplinary review of their care and support before a decision to detain them under section 3 can occur.
• We recommend that the Code of Practice sets out an expectation on clinicians to review their practice and decision making regularly, alongside experts by experience. We believe it will be necessary to challenge risk-averse and overly medicalised approaches that will continue under the reformed system. Practice reviews involving the voice of people who have lived experience will help to drive a cultural shift around decision making.
• If someone does come to be detained under section 3, we underline that their distress may increase in an inpatient setting, where that setting cannot meet their needs. Their distressed behaviour will be a result of their unmet support and communication needs, not their mental health need.
• We recommend that the person who is detained, as well as their nominated person or an IMHA should be able to request an urgent review of their detention where there is evidence to suggest that the setting is not meeting the person’s support needs. Evidence of this might include the use of restrictive practices, including restraint and seclusion.
• We recommend that, where it is not possible for the person to be treated for their mental health need in another setting, the setting in which they are detained must be under a duty to take steps to meet their support needs arising from their learning disability and/or autism. This includes staff training, adjustments to ward policies and adjustments to the physical environment. Failure to meet this duty should form the basis of enforcement action from the regulator.

The application of the Deprivation of Liberty Safeguard (DoLS) under Mental Capacity Act 2005

• As people who do not have a co-occurring mental health need will be excluded from detention under section 3, a cohort of people currently detained or at risk of detention will be made ineligible for long-term detention under the MHA through the reforms.
• We are concerned that progress will be undermined because of the availability of DoLS (which will be replaced by the Liberty Protection Safeguards in 2022).
• This will affect people who lack capacity to make a decision about their care and treatment in hospital. We are concerned that people who display distressed behaviour and who are considered a risk will be detained in hospital under DoLS when section 3 isn’t available because they do not have a co-occurring mental health need.
• The safeguards around detention under DoLS are weaker than they are in relation to people detained under section 3, for example:
  – There is no access to automatic, periodic Tribunal appeals;
  – There is a maximum period of 3 years without review of the DoLS authorisation;
  – There is no right for the nearest relative (or reformed nominated person) to contest detention;
  – There is more limited clinical oversight as a Second Opinion Appointed Doctor is not required to review the person’s treatment.
• Additionally, the White Paper includes a proposal to give a statutory mandate for Care and Treatment Reviews (CTR) for patients detained under section 3, with accountability where actions arising from the CTR are not progressed and an expectation that the CTR is integrated in the person’s Care and Treatment Plan. Presently, it is not clear that someone detained under DoLS would have an equivalent right. We recommend that the mandatory CTR is extended to anyone detained in hospital under a DoLS authorisation.
• We also note the White Paper’s discussion of whether DoLS criteria might be extended to permit detention in hospital if the person is considered a risk to others, expanding the current criteria that the person is a risk to themselves.
• We recommend that the DoLS criteria are not extended. Such a change would represent a marked departure from the purpose of the Mental Capacity Act 2005, namely to protect the autonomy of individuals and to mandate decisions in their best interests when they do not have capacity to make those decisions for themselves. We also believe it would lead to more people who have a learning disability and/or autism being detained in hospital, where they lack capacity to make a decision about this.
• We support the intention behind proposed reforms to exclude people who do not have a co-occurring mental health need from detention for treatment under section 3. This could be undermined where the default position is to use DoLS as an alternative.
• Greater consideration of the interface between the MCA and the MHA is needed. The default position for people who have a learning disability and/or autism, with no co-occurring mental health need, should be that they are discharged into appropriate community support.

Criteria for detention under section 2 of the MHA (detention for assessment)

• The proposed reforms envisage that people who have a learning disability and/or autism, who display distressed behaviour, can be detained under section 2 for assessment, up to a period no longer than 28 days.
• The White Paper sets out that detention for assessment under section 2 should only take place where there is a ‘probable mental health cause’ underlying the person’s distressed behaviour. We believe this is the right approach – again, moving away from a medicalised approach to supporting people who have a learning disability and/or autism.
• We are concerned that in limiting the scope for detention under section 2, without proper investment in alternative provision in the community, people who have a learning disability and/autism will be left without any provision in a time of crisis.
• One of the gravest risks in cases such as this will be the risk that the person ends up criminalised as a result of their distressed behaviour, where there is no additional support available to them.
• Our concerns relate particularly to people where it is known that their distressed behaviour is not related to an underlying mental health need, meaning they do not fall into the cohort of people provided for under a reformed section 2. Examples of people in these situations include people displaying distressed behaviour because:
  – The person has unmet needs with their physical health and wellbeing
  – The person is going through a period of transition, such as a move from home or from college
  – The person is going through a period of short-term disruption to their normal care and support arrangements – for example sickness of a family member, renovations to their home, or the departure of a well-liked support team member.
• It is right that people in circumstances such as these are not detained in hospital. It is critical that their needs are met through effective community support arrangements and services working with the person should have plans in place to manage these situations and should be able to draw on more intensive support services in the community where necessary.
• We also underline that, where the person’s distressed behaviour arises from unmet support needs, a 28 day period for assessment may not offer sufficient time to arrange adequate support for them – given the current lack of effective community support provision. Urgent investment is needed to remedy this.
• According to the most recent data, 50% of people detained in hospital were admitted from their usual place of residence, suggesting that a majority of people are not having their support needs met in the community and are ending up in crisis as a result.(2)
• We are concerned that individuals detained for assessment and who are then deemed ineligible for detention for treatment will have to be discharged back into support arrangements that do not meet their needs (excepting those who may be detained under DoLS, as set out above). This will make future crises very likely and may lead to people bouncing back and forth between ineffective community support arrangements and short-term detention as a way of managing, or perhaps more accurately, containing, their distressed behaviour.
• We also note that this is more likely to lead to the use of psychotropic medication as a means of managing the person’s distressed behaviour in the community, compensating for the lack of adequate support.
• Public Health England estimates that 30,000-35,000 people who have a learning disability and/or autism are currently prescribed psychotropic medication that they do not need.(3) Over-medication has serious health impacts and is one of the multitude of reasons that people who have a learning disability die, on average, 25 years younger than their counterparts in the general population.(4)
• We recommend that the Code of Practice embeds the Stopping Over-Medication of People with a Learning Disability, Autism or Both (STOMP) initiative.
• The White Paper proposes that someone detained under section 2 should have a Care and Treatment Plan developed within 7 days of their detention and approved by the Clinical Director within 14 days. We support the introduction of statutory Care and Treatment Plans, but emphasise that they differ in scope and purpose from a multi-disciplinary review of the person’s care and support in the community.
• We note that current best practice outlines that anyone who has a learning disability and autism admitted to inpatient care should have a CTR before admission, to inform their care once admitted and, ideally, identify options that would prevent admission altogether. Yet 61% of people currently detained did not have a CTR before admission.(5)
• We recommend that any person who has a learning disability and/or autism detained for assessment under section 2 must also receive a multi-disciplinary review of their care within the 28 period of their detention, which informs their Care and Treatment Plan and focuses on their discharge into appropriate community based support.
• We emphasise that the White Paper acknowledges that the needs of people who have a learning disability and/or autism, with no co-occurring mental health need, should not be managed through a system of mental health detention. It is imperative that adequate resources are made available to support people effectively in the community and that accountability is instilled within the system so that people are not left without adequate support having been rightly excluded from inpatient provision.

Systemic Issues Preventing a Reduction in Mental Health Detention of People who have a Learning Disability and/or Autism

• Presently, once someone has been detained for treatment in inpatient care, there are considerable delays to discharging the person. The average total length of detention for someone who has a learning disability and/or autism is currently 2047 days – over 5 years.(6)
• We believe this stems largely from the lack of appropriate provision, particularly in housing, as well as lack of accountability when people are detained in hospital for lengthy periods.
• We assert that the person who is detained, their loved ones and the people who are or would be involved in their community care are not sufficiently involved in discharge planning. This means the right solutions for that person are not properly identified and they are more likely to be discharged into circumstances that increase the likelihood of readmission, as their needs are still not met.
• We are aware that risk averse attitudes, particularly amongst clinicians, often mean that people are discharged into settings that replicate the environment and restrictions of inpatient care. This is not acceptable – it limits the independence, choice and control people have in their lives.
• We assert that the profit motive has the potential to be a factor in some decision making around discharge. We are concerned that the current white paper does not sufficiently consider this issue.

Discharge planning

• The White Paper proposes to put CTRs on a mandatory footing, increasing accountability for Responsible Clinicians where actions agreed in the review are not progressed. We fully support this proposal.
• In our experience, discharge planning works most effectively when the community provider is involved early on in the process, giving them the opportunity to learn about the person’s support needs and develop an appropriate support package.
• Often, successful discharge planning will rely on meaningful involvement of a multi-disciplinary community team; transparency and good communication between the inpatient team, the community team and the provider.
• We underline that CTRs should also involve people who have lived experience, who can advocate and inform decisions. We see this as invaluable to ensuring that risk averse attitudes are challenged and that there is not an over-reliance on more restrictive community based models of care.
• We support proposals to integrate the CTR into the person’s statutory Care and Treatment Plan. The White Paper proposes that anyone detained under section 3 should have a Care and Treatment Plan developed within 7 days of the detention and approved within 14 days and that this should then be treated as a live document.
• We note that the Care and Treatment Plan will focus predominantly on how the person will be cared for whilst detained, this is important and the proposed rights around access to and involvement in the planning process are welcomed. Such a plan remains distinct from the purpose of the CTR, which is focussed on planning for the discharge of the person from hospital.
• In our experience, limited discharge planning is carried out in the first 6 months of someone’s detention under section 3, causing a rush to prepare in advance of their first Tribunal review. We recommend that anyone who has a learning disability and/or autism detained under section 3 should have a CTR within 1 month of their detention, with a maximum period of 3 months between CTRs after that.
• We highlight that there has been a lack of ambition for people who have a learning disability and/or autism and a cautiousness around discharging people into community support, such as supported living, where people can be active citizens and visible members of their community. This should be the goal at which discharge planning is aimed.
• There are many providers of community based services for people who have more complex behavioural support needs that are less restrictive, but they are not currently the preferred option for discharge in many instances. We believe there is a lack of awareness of these forms of services and even when they are known, they are overlooked due to risk aversion.
• Transforming Care Partnerships and Building the Right Support are intended to ensure that the right community based options are developed and known about. We are concerned that these initiatives are not as effective as they should be in terms of ensuring consideration of support options where people can live as active citizens, with independence, choice and control.

A duty on commissioners

• The White Paper proposes new duties on commissioning bodies. The first is a duty to ensure an adequate supply of community services and the second is a duty to monitor risk of crisis at an individual level. We welcome the introduction of both duties.
• We agree with the statement in the White Paper that a duty to ensure adequate provision will create funding implications. We contend that the current crisis in mental health detention is driven in part by under-funding of services and a wide spread lack of provision to meet the needs of people who display distressed behaviour. This includes intensive support services that people can access at time of more severe need.
• We emphasise that one of the most significant delays to discharging someone from hospital is the availability of appropriate housing. The most recent data cites a lack of suitable housing provision as a reason for delayed discharge for 44% of people.(7)
• In our experience, local housing stock has not been developed to ensure people who have behavioural support needs have access to their own homes within their community. This includes the ability to adapt homes so that they are safe for people to live in. Housing requirements include:
  – Detached housing, where the person might make a lot of noise or be sensitive to noise
  – Accessible buildings for people who have physical disabilities and mobility needs
  – Adaptations, such as securing or covering fixtures e.g. radiators, where the person experiencing distress might pull at exposed fixtures
  – Adaptations to ensure the sensory environment meets the person’s needs, including sound proofing and lighting adaptations
  – Adaptations that can keep the person safe when they are in distress, for example padding on walls, adapted doorways and reinforced windows
• In some areas, we have found it difficult to secure housing that can be adapted to meet the person’s needs at a rate that can be covered by housing benefit. The exempt rents system under the Local Housing Allowance cap should mean that housing rents are not a barrier to discharge planning. In our experience, the exempt rents system is not well understood by some housing benefit advisors and this can create delays alongside the overall shortage of housing stock.
• Some aspects of the planning process cannot proceed until housing is secured. For example, building a support team for the person often demands that the place of work is known before recruitment.
• We are concerned that, despite the Building the Right Support policy agenda, inappropriate settings are still being registered by the CQC to provide services to people coming out of inpatient care. These include large settings – for more than 6 people – that are located in isolated areas, removed from the local community. We believe greater scrutiny of these registrations is needed.
• We recommend that ring-fenced funding is made available to support the development of appropriate community based services and housing. This should privilege the development of supported living settings, where people have their own tenancies and are living within their community.
• Currently, it takes between 8 months and a year, on average, for Dimensions to prepare an appropriate support package for someone moving out of inpatient care. This lengthy period is often the result of delays securing housing. A duty on commissioners to ensure provision must address the current barriers, which will reduce the amount of time it takes to establish a package of support to meet the person’s needs.
• Finally, we welcome the duty to monitor risk of crisis at an individual level. However, this will be ineffective if there is no corresponding investment in service provision that can work intensively with people to prevent crisis. We recommend that government prioritises investment in these services, alongside ensuring the wider availability of appropriate support and housing so that fewer people end up in arrangements that are likely to lead to crisis. Intensive services should be available:
  – To support transition between children’s services and adult services
  – To support around periods of change and disruption to someone’s normal routine
  – To provide respite or short breaks services for families
  – To support someone’s mental health needs alongside their broader support and communication needs

Enhanced rights for the individual

• We support many of the proposals set out in the White Paper to enhance the rights of people detained under mental health laws. This includes:
  – The introduction of the 4 new guiding principles
  – The introduction of core principles in detention criteria, namely the need for therapeutic benefit and least restriction
  – The introduction of revised detention criteria so that a ‘substantial likelihood of significant harm’ must be demonstrated in order to detain someone under section 2 or section 3
  – The introduction of more frequent access to review by the Tribunal
  – The introduction of Advanced Choice Documents
  – The introduction of the Nominated Person, replacing the nearest relative
• We believe these measures will benefit people who have a learning disability and/or autism who meet the new criteria for detention. We also note that these are precisely the sort of safeguards that people under DoLS will not have access to if this becomes a default for those who are excluded from section 3 detention and who lack capacity.

To find out more about Dimensions and our work, please explore this website or contact our Public Affairs Manager, Andie Gbedemah: alexandra.gbedemah@dimensions-uk.org

 

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1. Reference Table 3, Learning Disability Services Monthly Statistics, December 2020, NHS Digital
2. Reference Table 12, Learning Disability Services Monthly Statistics, December 2020, NHS Digital
3. Stopping the Over Medication of People who have a Learning Disability, Autism or Both (STOMP), NHS England and Improvement
4. LeDeR 2019 Annual Report, Learning Disability Mortality Review, 2020, University of Bristol
5. Reference Table 12, Learning Disability Services Monthly Statistics, December 2020, NHS Digital
6. Reference Table 8, Learning Disability Services Monthly Statistics, December 2020, NHS Digital
7. Reference Table 6, Learning Disability Services Monthly Statistics, December 2020, NHS Digital