Written evidence submitted by Mencap and the Challenging Behaviour Foundation (MHB0078)

About CBF

The Challenging Behaviour Foundation is a charity which supports children, young people and adults with a severe learning disability and challenging behaviour and their families. The CBF exists to demonstrate that individuals with severe learning disabilities who are described as having challenging behaviour can enjoy ordinary life opportunities when their behaviour is properly understood and appropriately supported. For more information about the CBF go to our website:

https://www.challengingbehaviour.org.uk/

About Mencap

Our vision is for the UK to be the best place in the world for people with a learning disability to live happy and healthy lives. We do this by supporting the 1.5 million people with a learning disability in the UK and their families, improving health and care services as well as access to education and employment. We also directly support to over 4,000 people with a learning disability to live their lives the way they want. A learning disability is caused by the way the brain develops before, during or shortly after birth. It is always lifelong and affects intellectual and social development.

https://www.mencap.org.uk/

Our organisations have worked with families with lived experience of loved ones with a learning disability and/or autism being inappropriately detained in inpatient units since the abuse scandal at Winterbourne View in 2011. Evidence and insights from families and from lawyers working on these cases, including the CBF legal panel[1], have informed our joint submissions on Mental Health Act (MHA) reform, including to the Independent Review of the MHA, Reforming the MHA consultation and this response.

Summary and contents of response

Reforming the MHA is long overdue, and we welcome the Government’s intention to bring the legislation into the 21st century. We welcome the Bill’s intention to make it harder to detain people with a learning disability and/or autistic people (LD/A) inappropriately.

However, the success of the reforms depends on individuals being able to access the right support in the community when they need it. Solving the issue of inappropriate detention needs an urgent focus on improving and developing the right community support in local areas, and ensuring individuals get packages of care in the community that properly meet their needs. Just changing the MHA on its own, without a clear investment programme for community support will not work.

Introduction

It is well recognised that the MHA and its safeguards are not working effectively for people with a LD/A in inpatient units also known as Assessment and Treatment Units (ATUs), as 93% of people in these settings are detained under powers within the MHA. There are currently at least 1,970 people with LD/A in inpatient units, often far away from family (including 190 children)[2].

Once in these settings, average length of stay for people with LD/A currently in inpatient units continues to be 5 and a half years. During June 2022 alone there were 3,815 reported uses of restrictive interventions (such as physical and chemical restraint and being kept in isolation) used against people with LD/A with 905 of these against children[3]. The data on restrictive interventions is not complete and therefore the actual figure is likely to be higher.

The Joint Committee on Human Rights (JCHR) Inquiry into the detention of young people with LD/A has put a spotlight on the human rights breaches happening in these settings: “What was clear from their testimony…the detention of young people with learning disabilities and/or autism not only threatens their rights to private and family life [Article 8 European Convention on Human Rights] and their right to freedom from inhuman and degrading treatment [Article 3 ECHR] but also their right to liberty and security [Article 5 ECHR] and in some cases their right to life [Article 2 ECHR]”[4]. 

Action to develop the right community support is needed now, ahead of MHA reform

Government/ NHSE policy since 2012 has set out that the right community support should be developed for people with LD/A and the number of people with LD/A in inpatient mental health units must be reduced. But progress has been too slow. Commitments to date have not been met. The latest target set out in the NHS Long Term Plan (2019) is to reduce inpatient beds for people with LDA by 50% of 2015 levels by 2024[5]. In the many reports that have been written, including by the JCHR, Health and Social Care Committee (HSCC), Care Quality Commission (CQC), and Baroness Hollins’ thematic review of Independent, Care (Education) and Treatment Reviews (ICETRs)[6], there is agreement that the key action to address inappropriate detention is the development of the right community support.

There needs to be an urgent assessment of community provision for people with LD/A, what the gaps are, and necessary action taken to address these. The recent Building the Right Support (BTRS) Action plan points to MHA reform as a key way to build the right community support through new commissioning duties and a support/risk register. But urgent action is needed now to lay the foundation for effective MHA reform and get the right support in place to prevent inappropriate admissions and enable discharges. If this doesn’t happen in advance then what we are likely to see is:

-          a significant number of people with LD/A in units who don’t meet the new detention criteria once the new legislation comes in, and detention which is unlawful as well as inappropriate.

-          situations where people have been detained under Section 2 for 28 days and found not to have a mental health condition are discharged into the community needing significant support which is not there. This puts them at risk of crisis and re-admission.

-          people may be given questionable mental health diagnoses to try to justify detention under Section 3.

There is no question that MHA reform is needed as the current situation whereby people with LD/A can be detained under the MHA in mental health hospitals solely on the basis of having a learning disability or autism is discriminatory. We welcome that this has been recognised.

The need for the right community support is already urgent- as evident from the missed targets and slow progress to Transform Care and the human cost of this (see numerous reports and media cases). Upcoming MHA reform must focus minds to deliver on what has been long-promised.

MHA reform should then strengthen the requirements to develop the right community support through new duties on commissioners, and these new duties will help ensure ongoing and long-term change (see later comments on how we would like to see these duties strengthened).

DHSC and NHSE need to be using the current levers at their disposal to get the right community support in place now including the right social care support, suitable housing[7] and community teams with the right expertise to help prevent admissions and discharge people. They also need to address the perverse funding incentives in the health and care system that lead to admission, and keep people stuck in units. People can end up in inpatient units due to unwillingness from the local authority (LA) to fund the community support needed. Currently, if the LA doesn’t provide the support needed, the person’s needs can escalate and they can end up in an inpatient unit funded by health. There is no incentive for the LA to fund the right support. The perverse incentives apply to admission as well as to discharge.

Data shows little change in admissions of people with LD/A to inpatient units each month[8]. Investment in preventative support/ early intervention and crisis support in the community is essential. The recent Red Quadrant funding flows report recognises this and recommends additional ring-fenced funding for proper investment in preventative support and early intervention.

Clause 1: Limiting the scope to detain people with a learning disability and/or autistic people under the Act

‘The White Paper proposes to reform the Act to be clearer that for the purposes of the Act, neither a learning disability or autism can be considered to be mental disorders warranting compulsory treatment under Section 3 of the Act. This is because learning disabilities and autism are conditions which cannot be removed through treatment, although some autistic people and people with learning disabilities may require treatment for mental illness.’ -MHA reform white paper consultation outcome.

We welcome this change. This is something we have been campaigning for with families as learning disability and autism are not mental health conditions, and people should not be detained in mental health hospitals just for having a learning disability or autism (and no mental health condition which requires a period of inpatient treatment). This change is needed for Human Rights and equality reasons.

In addition to ensuring the right community support in place, these are some key issues that need to be addressed to make sure the aims of MHA reform are realised:

Must guard against attempts to give people new MH labels for the purpose of justifying detention under section 3

Families, and many others, have raised serious concerns about the risk of people with LD/A facing an increase in diagnosis of MH conditions to justify detention under section 3 of MHA. It is reported anecdotally from those involved CETRs that this practice is already happening and becoming more widespread (Note: NHSE does not collect centralised data on the themes and issues coming out of CETRs).

This concern is particularly pertinent to private inpatient units where there is a clear financial incentive for the private provider to keep people in the unit. ‘The roots of private, specialist hospitals reside in business opportunism and profit driven priorities’[9].

The Bill should pre-emptively address this.

Ensuring DoLS/ Liberty Protection Safeguards (LPS) are not used as an alternative legal framework to detain people with a learning disability and/or autistic people in inpatient units.

The Government’s ‘Reforming the MHA: government response’ says that a number of consultation respondents raised concerns that changing the scope for section 3 could just result in a transfer of those people onto the Liberty Protection Safeguards. This is a concern but we think it can be easily addressed.

Clearly the intention is for the change in detention criteria for LDA to result in reductions in detention of people with LD/A. This intention is set out in the MHA reform white paper and Draft Bill impact assessment and is in line with the Government’s Transforming Care programme. Indeed, MHA reform has been referred to repeatedly as an important way to tackle inappropriate detentions of people with LD/autism in hospital.

We do not want individuals with LD/A to be detained in mental health hospitals unless they genuinely need a short period of MH inpatient care and where it would be therapeutic. The MHA is the legal framework for detention for mental health assessment or treatment and if people don’t need inpatient mental health assessment or treatment they should be supported in the community not detained in an inpatient unit.

The safeguards under Mental Capacity Act (MCA)/Deprivation of Liberty Safeguards (DoLS)/ Liberty Protection Safeguards (LPS) are recognised as not being as robust as those under MHA for detention for mental health assessment or treatment (which is the only reason why a person with LD/autism should be in a mental health hospital).

We support the Law Commission’s conclusion that ‘the Liberty Protection Safeguards should not apply to arrangements carried out in hospital for the purpose of assessing, or providing medical treatment for, mental disorder within the meaning it is given by the Mental Health Act.’[10]

We must make sure alternative legal frameworks are not used instead to enable inappropriate detention in inpatient units.

No change in the definition of ‘mental disorder’ for admission under Section 2 but there still needs to be a focus on preventing admission under Section 2

The removal of learning disability and autism from the definition of ‘mental disorder’ does not apply to admission for assessment under section 2 but it is important there is a strong focus on preventing inappropriate admission to an inpatient unit under section 2.

The Government’s MHA white paper consultation outcome said: ‘Under the proposals, people with a learning disability and autistic people could be detained under Section 2 of the Act when their behaviour is so distressed that there is considered to be a substantial risk of significant harm to self or others and there is a probable mental health cause to that behaviour that warrants investigation.’

‘They should only be detained after all alternatives have been considered. A Care (Education) and Treatment Review (CETR) is also expected to be conducted before a detention to provide evidence as part of any decision made.’

It would be helpful for these intentions to be in the Bill. We do not want it to be an easy option to just detain a person with LD/A under section 2.

It is accepted it is rarely appropriate for someone with LD/A to be admitted to an inpatient unit.[11] It is very important that the right community services are developed, including on avoiding admission to an inpatient unit. Many people with LD/A will find it very distressing being in an inpatient environment which is unfamiliar. They may not understand why they are there, staff may not understand their way of communicating or how to meet their sensory need sand fundamentally people need personalised care which institutions are not set up to give. It is highly likely that someone will be very distressed because of this. We know inpatient admission can be hugely traumatic and a person can deteriorate whilst in an inpatient environment, their behaviour can worsen and they can also develop mental health issues – which can all result in the person getting stuck for long periods of time.

One family carer whose relative with a severe learning disability was sectioned (now living in the community) shared “Admitting someone for assessment under section 2 is fundamentally flawed as the environment makes it impossible to undertake an accurate assessment of needs. For our son, the environment was unfamiliar, contributed to sensory issues and multiplied existing problems. Behaviour escalation was almost inevitable, trauma was inevitable. Discharge seemed impossible once in this setting.”

We need a focus on developing the right support in the community including on avoiding admission to an inpatient unit. The community support needed is set out in the BTRS service model. There needs to be a strong focus on early intervention[12], support to prevent needs escalating and preventative planning to avoid inpatient admission. This includes:

• suitable housing and skilled social care providers
• proactive support rather than reactive support
• trained support workers supporting in the family home, suitable and flexible respite
• greater access to functional assessment and better awareness of triggers and upcoming risks in environment
• access to Occupational Therapy support to undertake sensory assessments, medication reviews on a regular basis, better access to psychology and psychological therapeutic approaches
• access to crisis team support 24/7 including hands on practical support
• more provision of alternative forms of ‘crisis’ support (e.g. flexible social care provision) which provides a safe, familiar, and appropriate environment as an alternative to admission.

As well as ensuring availability of the right support, there needs to a commitment to fund suitable packages of care in the community that are personalised and properly meet the person’s needs.

There must be an urgency to explore community options. It is essential that professionals involved in sectioning a person with LD/A are familiar with learning disability and autism pathways, informed about good practice and involve colleagues with the right expertise and family members in the discussion.

‘Mental health services should know what the community options are, the area should have a pathway, and everybody needs to know about it’ – family carer of a person with a learning disability

No proposal to change LDA detention criteria for Part 3

Government’s White Paper response: ‘In the White Paper, we proposed that changes to limit the scope to detain people with a learning disability or autistic people under the Act would only apply to civil patients. Our rationale for this position was to ensure that accused people and offenders whom the courts, or the Secretary of State for Justice, might currently divert to an inpatient setting are not forced into the criminal justice system, which is not able, or indeed intended, to cater for their needs.’

We understand the rationale for proposing that the change to the scope only applies to patients with LD/A under a civil section.

It is essential however, that there is also a strong policy focus on reducing numbers of people with LD/A detained under forensic sections. Key to this is ensuring there is the right support in the community to support people with LD/A who are at risk of, or who have come into contact, with the Criminal Justice System (CJS).

There are many individuals with LD/A who display behaviour that challenges who could easily fall into being detained under Part 3 if they are not given the right support in the community. We know from families we support that individuals with LD/A are sometimes criminalised when lack of appropriate support leads to an increase in behaviour that challenges (communication of unmet need) – e.g. see Kayleigh and Wendy’s story[13]. The CQC and others have also raised concerns about this happening in inpatient units.[14]

The BTRS model sets out what community support is needed to support people with LDA in the community, including specific support for those who are at risk of coming into contact, or who have come into contact, with the CJS. This includes: ‘When required, people should have access to specialist multidisciplinary health and social care support for people who have come into contact with or may be at risk of coming into contact with the criminal justice system (i.e. offering a community forensic function for people with a learning disability and/or autism) including the expertise to manage risks posed to others in the community.’ However, NHSE has not published information about the extent to which the support set out in the service model has been developed. From casework and NHS digital data on reduction in inpatients with LD/A, we know that national progress to Transform Care is slow and local progress is very patchy.

Concerns have been raised that if the right community support is not in place, then those who may previously have been in a unit under Part 2, but are now in the community as they don’t meet the new scope for detention under section 3, could end up in a unit under Part 3 instead (having hit the CJS). There is also a concern that more people may be criminalised in units in order to justify detention (as if they are under Part 3 the change in scope doesn’t apply).

As already stated, we support the change in scope for detention of people with LD/A under section 3, Part 2.

It is crucial there is a strong focus on developing the right community support for people with LD/A, including those who are at risk of, or who have come into contact with, the CJS. There must be close monitoring to ensure things improve for people with LD/A under Part 3 as well, and that there is reduction in the number of people with LD/A under Part 3.

Appropriate medical treatment: therapeutic benefit

We welcomed the proposal in the white paper to change the detention criteria so that detention must provide a therapeutic benefit to the individual.

We would like to see the words ‘therapeutic benefit’ specifically used, and defined, in the Bill. In the draft Bill these words are included on the contents page, and as part of the title of the section, but they are not specifically referred to within the actual clauses.

We also think it should be explicit in the Bill that the overall ‘detention’ in the unit must be of therapeutic benefit. At the moment there appears to be quite a narrow focus on ‘medical treatment’ being appropriate. The Government white paper says in delivering the core principle of therapeutic benefit ‘greater consideration must be given to whether, and if so how, detention and interventions provided under the act are or would be beneficial to a person's health and recovery’ – clearly recognising these are two different elements.

A particular medication may be considered clinically appropriate and yet the wider experience of detention for an individual with LD/A e.g. not having communication and sensory needs met, high use of restraint, not receiving personalised care, and the impact on the person of being in an unfamiliar place with unfamiliar people and separated from their loved ones, may be highly distressing and traumatic, and therefore overall it is unlikely to be of ‘therapeutic benefit’. To meet the criteria the detention must have a ‘net’ effect of being of ‘therapeutic benefit’.

It is recognised that for people with learning disabilities and autistic people admission to a unit is rarely appropriate (see MHA Code of Practice and Building the Right Support service model (2015)). The therapeutic benefit criteria should help translate this into legislation but it is important the term is properly included within the Bill and defined.

It needs to be clear that medical treatment and care must be in line with learning disability and autism policy and good practice, including relevant NICE guidelines. It should also be clear that inpatient settings should be designed and operate in line with CQC guidance e.g. Right Support, Right Care, Right Culture[16]. Large, isolated inpatient units are not appropriate. We would like the Bill, regulations and guidance help prevent the development of inappropriate units and/or the commissioning of inappropriate inpatient beds for people with LD/A.

As well as defining what ‘therapeutic benefit’ means for people with LD/A, it may be helpful to be clear, e.g. in the Code, the circumstances that are certainly not of therapeutic benefit e.g. where human rights breaches are taking place, where the person’s condition is deteriorating, where there is misuse of restrictive interventions. NHS Digital monthly Mental Health Service Data Set (MHSDS) data shows alarming levels of restrictive interventions, including physical and chemical restraint, are used against people with LD/A. Overmedication is also a well-recognised issue for people with a learning disability[17] and is not ‘therapeutic’. There are numerous examples of people being overmedicated in inpatient units and the short and long-term consequences of this, including the challenges of reducing or stopping these high doses of medication once they are discharged.

It must also be clear how and when therapeutic benefit will be reviewed. The Care and Treatment Plan (CTP) will help evidence as to whether care, treatment and detention is of therapeutic benefit. In addition to ongoing review that care, treatment and detention are of therapeutic benefit, Care and Treatment reviews will also provide an opportunity to consider this fully involving the individual and their family, and with an independent expert and clinician involved. They should specifically look at whether the treatment and the detention overall are of therapeutic benefit.

People under a forensic section

We welcome that ‘therapeutic benefit’ applies to patients under Part III sections. This is important to prevent forensic patients from being subjected to unbeneficial detention for overly lengthy periods of time. Ensuring that treatment and detention are of therapeutic benefit must help ensure a clear pathway for getting discharged. We are aware of cases where people under a forensic not only have no end date, but also have no clear steps for how they can get out. 30% of the 765 forensic patients with LD/A currently in inpatient units have been there for over 10 years (NHS Digital Assuring Transformation data)[18].

Assessment

With the right community support and community assessment services it should be rare for someone with LD/A to need to go into hospital for assessment. All alternatives need to be explored. Consideration should be given as to whether detention is likely to be of therapeutic benefit before detention under section 2. We have heard from a number of families who were told their loved one would only be in for a short assessment and they deteriorated once admitted as it was so traumatic for them and they ended up being moved on to a section 3 and detained for years. We would like the principle of therapeutic benefit to underpin all decisions relating to detention and assessment and treatment.

Once someone has been detained under Section 2 it is important the assessment is high quality and suitable for the needs of the person with appropriate reasonable adjustments made, including involvement of the person’s family and those who know them well to help ensure the person’s communication and sensory needs are understood and met. As the Government’s Reforming the MHA White Paper, Pg 82 says: ‘The assessment process under section 2 should seek to identify the driver of this behaviour, and whether a mental health condition, physical condition or response to environmental or life change, is the driver of this behaviour’. It is essential the right LD/autism specific expertise is involved. Assessment should be conducted in a safe environment and not under conditions which risk escalation of behaviour and deterioration of wellbeing. The assessment in the unit must meet the principle of therapeutic benefit.

We have set out more what high quality assessment should involve in the section on CTPs. The Bill and regulations are an opportunity to be clear that everything in the CTP about the person’s assessment, treatment and detention should be of therapeutic benefit. The regulations should spell out what is required.

We agree with the inclusion of ‘therapeutic benefit’ as a measure against which treatment and detention have to be justified, but there needs to be clarity of definition and measurement if it is to be an effective safeguard. We think it is important there are regs about what therapeutic benefit means, how it is evidenced, how often it is measured. This should reflect up-to-date guidelines on supporting individuals with learning disabilities and autistic people (e.g. The BTRS service model 2015[19], NICE guidelines on learning disabilities and behaviour that challenges[20]). And that it is recognised that it is rarely appropriate for someone with LD/A to be in an inpatient unit (see Pg 209, MHA Code of Practice and Pg 27, BTRS service model 2015). Any measure of therapeutic benefit should lead with this fact and acknowledge that ward environment and lack of person-centred support and other factors mentioned can negate therapeutic benefit, and a risk/benefit assessment must be made accordingly.

Those who have known the individual longest (such as, family members) are often excluded from the assessment process in units. The importance of listening to the expertise of those who know the person well cannot be overstated in understanding someone’s needs and usual presentation.

People with a learning disability: Community support – Commissioning & market shaping duties

It is important that the ‘adequate supply of community services’ reflects the full range of support set out in the BTRS service model 2015[21] (the community support needed was also set out in the Mansell Reports 1993, 2007). There needs to be a strong focus on early intervention, support to prevent needs escalating and preventative planning to avoid inpatient admission. This includes:

• suitable housing and skilled social care providers
• proactive support rather than reactive support
• trained support workers supporting in the family home, suitable and flexible respite
• greater access to functional assessment and better awareness of triggers and upcoming risks in environment
• access to OT support to undertake sensory assessments, medication reviews on a regular basis, better access to psychology and psychological therapeutic approaches
• access to crisis team support 24/7 including hands on practical support
• more provision of alternative forms of ‘crisis’ support (e.g. flexible social care provision) which provides a safe, familiar, and appropriate environment as an alternative to admission.

Recently money has been made available to help facilitate discharge of people with learning disabilities and autistic people from inpatient units - the Community Discharge Grant[22]. But there has been little transparency about how this has been calculated to ensure the right community support is in place, including suitable housing, or how it is accessed. People continue to be admitted, so they will continue to need to be discharged - will this discharge fund be ongoing? We need adequate funding to ensure the preventative support is in place to avoid admission.

We welcome the proposal in the white paper to introduce new duties on LA and CCG (now Integrated Care Boards) commissioners to ensure an adequate supply of community services specifically for people with LD/A.

Currently there are no costs set out for these new duties in the Draft Bill Impact assessment. It says ‘These costs are challenging to quantify and are not included in this IA as there are existing programmes in place to expand community services. We do not currently know whether the new duties in the MHA will cost more than the resources provided through the NHS LTP, hence why this is not quantified here…’

The Government’s new BTRS Action plan[23] was recently published without a strategic analysis of what is needed to deliver the aims of Transforming Care and the finance required to deliver it. This highlights the urgent need for the Government to do a proper assessment of costs to support people with LD/A who display behaviour that challenges in the community, a gap-analysis of support and services in place in local areas across the country against the BTRS service model, and investment needed to address the gaps. This is an essential step in ensuring the development of robust community support.

A number of reports, including the Government’s Reforming the MHA: government response[24], have highlighted the need to improve reporting on spend on services. For example, Baroness Hollins’ Thematic review of IC(E)TRs recommended: ‘DHSC should require commissioning bodies to provide assurance that the right value-led services are in place for this group. There should also be a requirement for commissioners to report spend more transparently to increase their accountability’[25].

The Government’s Funding flows report said: ‘There has been limited regional or national oversight of expenditure and investment of either councils or NHS system spend on Building the right support’. ‘TCPs have reported Building the Right Support performance information, but this did not include financial information…’. ‘There is no national mechanism for measuring the extent to which the TCPs and councils have invested in the range of preventative and crisis support services as set out within the Building the Right Support service framework’[26]. With no such measure, the NHS LTP plan can’t evaluate its success either.

These issues should be address as a matter of urgency as they are key to ensuring progress in developing the right support can be monitored, and appropriate action taken. This Bill provides an opportunity to strengthen a requirement to report on spend. It should also include a requirement for reporting that the new duties on commissioners are being followed and that the right community support and services are in place.

Ensuring adequate community services for people with LD/A is essential. What is proposed in the draft Bill is weaker than what was in the white paper. The white paper proposed duties on local commissioners to ensure ‘adequate supply’ of community services for people with LD/A. The Government response said 87% of respondents strongly agreed with the proposal. Why has it been weakened? The Government said they would undertake a formal new burdens assessment to establish implications for local Government – was this done? We are concerned that ‘seeking to ensure’ is not a strong enough duty to guarantee appropriate personalised support is available to individuals in the community.

As already mentioned above, the proposals in the draft Bill don’t tackle the perverse financial incentives that lead to admission, and keep people stuck in units. People can end up in inpatient units due to unwillingness to fund the community support needed.

We would like to see a strong requirement for health and social care to work together to meet the needs of people with LD/A, including the use of pooled budgets and other measures which will help tackle perverse funding incentives. There is an ongoing urgent need for social care reform and a long-term funding solution for social care.

People with a learning disability: Community support – support/ at risk register

The Government’s Reforming the Mental Health Act White paper: ‘this could involve local authorities and NHS commissioners working together to identify and monitor the support needs of individuals by way of a 'risk' or 'support' register, often described as a Dynamic Risk Stratification and Support register, including an 'at risk of admission' component.’[27]

The focus on prevention and early identification in the description of dynamic support registers set out in the BTRS service model is helpful, but it must be clear that identification must lead to the right support being commissioned, as well as to individuals on the register being able to get the right support at the right time.

See Pg 4‘: Local health and care services should develop a dynamic register based on sophisticated risk stratification of their local populations. This will enable local services to anticipate and meet the needs of those people with a learning disability and autistic people who display behaviour that challenges, or who are at risk of developing behaviour that challenges, ensuring local services plan appropriately and provide early interventions, including preventative support…Risk stratification should focus on prevention and early intervention with the aim of reducing the likelihood of behaviour that challenges by providing support at an early stage to proactively address these risk factors, including through early screening for children and young people suspected of having a learning disability or being autistic…’[28]

It is important the Bill reflects this intention of identifying people early on and ensuring early support for people with risk factors.

Further detail

Currently there is no incentive for LAs to identify the people at risk as it is likely to mean they will need to provide/fund support. We want LA and health professionals to be identifying people as early as possible and putting the right support in place to prevent individuals reaching crisis point or being unnecessarily admitted.

If the LA has identified that an individual could be at risk of admission, then it is important that they are then able to access extra funding (e.g. from a national pot) and that this should be a jointly funded multi-disciplinary approach. This would acknowledge that some people with learning disabilities and autistic people who have complex needs do require more specialist community packages that may be a bit more expensive than standard social care packages and they should be able to get this to properly meet their needs (and avoid admission to a unit down the line).

There is regional disparity about how the current dynamic support/ at risk registers (set out in NHSE BTRS policy) are managed and in certain areas there is a lack of direct communication with families. It does not seem that there is a standard application across the UK, and it is therefore not helping as many individuals and families to access community support as it could. At a recent consultation with families, a family carer said, “things have to get to a crisis before they actually do anything”. It is important there is consistency over criteria used, and for it to be clear what action being on the register should prompt. “We need to know that this means more than just having peoples’ names on a list” - Family carer

Clause 2 – People with a learning disability – Care (Education) and Treatment reviews (C(E)TRs)

We welcome the statutory footing that the Bill gives to CETRs. However, there are two key issues that the Bill must address

1. That CETR recommendations are not always followed
2. That CETRs are of varying quality

The draft Bill does not set out how the recommendations from CETRs will be enforced. It needs to be clear in the Bill how this will happen. It is also important that there are regulations (and public consultation on these) for CETRs to ensure they are high quality, which is essential if they are to be effective.

Tribunals

Tribunals are not working effectively as a mechanism for enabling people with LD/A to be discharged in a timely way. This is evidenced by the shockingly long lengths of stay people with LD/A are experiencing. As the Draft Bill’s explanatory notes say: ‘People with LD/A are often subject to lengthy detentions, which often do not provide therapeutic benefit’.

We know that, currently, once a person with LD/A is detained, the Tribunal will generally confirm this detention. Even if a person is ready for discharge or clearly not benefitting from detention, detention will be confirmed if those inputting into the Tribunal (Responsible Clinician, panel members) do not believe the person is ready for discharge and/or that appropriate community provision is in place.

Hopefully having statutory CETRs with findings and recommendations which feed into, and have to be considered by, the tribunal; the amended scope for detention of people with LD/A under section 3 and criteria ensuring detention is of therapeutic benefit will help make it easier for people with LD/A to be discharged (as long as the right community support is in place).

However, lack of expertise on the Tribunal about what good support looks like for people with LD/A who display behaviour that challenges (including what good community support looks like) is of concern. Increasing the frequency with which tribunals can be accessed are unlikely alone to make a difference. The families we support do not think this will improve outcomes for their relatives as the Tribunals lack the relevant expertise in LD/A. There needs to be a focus on expertise/quality of Tribunal decision-making in relation to people with LD/A, not just frequency of Tribunals.

To help ensure that Tribunals are effective for people with LD/A, the powers to challenge detention must be strongly linked to the powers to direct services in the community – see power to direct services below

To help ensure Tribunals are effective for people with LDA it is important people with LDA are able to access (opt-out) independent advocacy from IMHAs with the right skills and access skilled legal support – see advocacy section below.

The white paper had a proposal to be able to challenge treatment decisions at the Tribunal but this is not in the Draft Bill. This is of concern – see challenging treatment section below.

Power to direct services for aftercare

The Draft Bill’s Explanatory Notes outlines that Tribunal’s will have a new power when it does not direct the discharge of a patient: ‘to be able to make a recommendation for the “responsible after-care body” to consider making plans for after-care services to be made available for a patient to facilitate a patient’s discharge at a future date.’ It says ‘the power for the MHT to reconvene under section 72(3)(b) to consider a patient’s case again if the recommendations have not been complied with will also apply to this new power. This will ensure that where necessary the MHT can challenge the responsible after-care bodies.’

This appears to be much weaker than the White Paper proposal on extending the role of the Tribunal to direct services in the community (as mentioned above). The White Paper proposed there should be an obligation in legislation on health and local authorities to take all reasonable steps to follow the tribunal’s direction, to provide an explanation to the tribunal if they are unable to do so, and be given a period of 5 weeks to take reasonable steps to deliver the tribunal’s direction.

Further information

We fully support extending the role of the Tribunal to direct services in the community. It is essential that challenging detention links directly to the power to ensure the timely development of community provision. However, due to the importance of these proposals, it must be ensured that these powers are robust and enforceable.

The Bill must ensure the directions are appropriate and specific for the individual case and there needs to be further detail around implementation to ensure it is effective. There needs to be reassurance that the directions will provide good outcomes for the individuals by ensuring that they have been agreed by all involved in the individual’s care including input from appropriate specialists. A proposal is needed which gives the Tribunal powers to direct a robust plan for delivery (for example as series of steps/ actions) over a suitable period of time with a regular review process in place. There is likely to be learning from how the Court of Protection makes directions and does follow-up/ case-management conferences re: development of packages of support for people with LD/A, that can be used by Tribunals.

There must be accountability for the delivery of directions.  It is recommended that this is supported by requiring LAs to name one individual/Officer as the point of contact responsible for liaison between the Tribunal and LA to prevent diffusion of responsibility. Families and their relatives should also be made aware of who this person is.

It has been suggested that there could be fines for exceeding timescales e.g. after X amount of time the cost of the inpatient bed will be passed on to the authorities who are responsible for providing the community support.

We would want to see tribunals given the power to review whether the assessment and care plan and discharge plan contain appropriate provision and whether the discharge plan is being pursued expeditiously, with a power to revise all aspects of the plans.

Aftercare

The Draft Bill aims to make it harder to detain people with LD/A inappropriately, which is welcome, but people must be able to get the right support in the community on discharge, otherwise the risk is there will be traumatic repeated admissions. This applies to all patients with LDA, including those who are discharged following assessment under section 2.

The Tribunal’s role in challenging treatment (and conditions of detention more broadly).

Effective routes for a person and their representatives to challenge decisions about treatment, care and the conditions (including access to fresh air, meaningful activity, use of restrictive interventions) are very important.

Further points

Family carers have told us that currently RCs have all the power, while Mental Health Tribunals and non-specialist SOADs are ‘rubber stamps’. Any additional powers given to Mental Health Tribunal judges to reconsider treatment decisions must ensure that judges have specific knowledge to match the patient whose treatment is being considered. It must be made clear to a judge whether or not a SOAD who has supported the decision under appeal has any LD/A expertise. Tribunal decisions must be informed by CETR recommendations and Tribunals must bring in relevant independent expertise where needed.

Currently it can be hard to challenge care, treatment and conditions for people with LD/A in inpatient units. Safeguarding referrals can be ineffective as safeguarding teams can view the concerns raised e.g. misuse of restrictive interventions as being a ‘care/clinical issue’ and say it is a specialist unit that is clinician-led.

The white paper focuses on the route of a SOAD and appeal to the Tribunal to challenge specific treatment. This sounds very much like it is only for ‘medication’ challenges. It is vital there is an effective route to challenge misuse of restrictive interventions as well as other aspects of the person’s care. In relation to medication challenges, unfortunately we know that SOADs are often not effective for people with learning disabilities and autistic people (See CQC’s Survey of medication for detained patients with a learning disability, 2016)[35]. There is currently no requirement for a SOAD to have the necessary LD/autism expertise and there are no proposals to address this. This is of concern as we know many people with learning disabilities and autistic people are overmedicated (see NHSE STOMP programme). We do not think SOADs will be an effective route for challenge in relation to decisions about patients with LDA.

When making decisions about treatment for people with LD/A, all those involved including Mental Health Tribunal judges must have learning disability and autism knowledge and training, and must be required to bring in independent expertise, including ensure input from those who know the person well, including family and relevant community professionals.

Advocacy

We welcome that the Draft Bill introduces opt-out independent advocacy for people detained under MHA.

There are currently lots of issues in relation to quality of independent advocacy for people with LD/A in inpatient units.

‘The local authority chose the advocate for our son. They didn’t have the right expertise, they wouldn’t work with us, and they weren’t culturally appropriate. They have an office in the hospital and have only met my son a handful of times.  My son had no voice. The clinicians only communicated with the advocate rather than with us, his family. Lots of advocates also don’t wish to talk with parents to understand their child a better way’ -Family Carer

Guidance

‘Secretary of State must publish guidance about care, (education), and treatment reviews, risk registers and providing community services for Part 8A of the MHA. Responsible clinicians, responsible commissioners, ICBs, and local authorities must also have regard to this guidance when exercising their functions under this part of the MHA’.

Care and Treatment Plans

We welcome a statutory requirement for people with LD/A to have a CTP and regulations about what it contains. It is important there is public consultation on the regulations for CTPs. Some important elements to include on the face of the Bill or in regulations:

Further detail

CTPs should be produced:

●       By Multi-Disciplinary Teams and those who know the individual well. Currently, CTPs are too inward (inpatient) looking, and are hospital-centred rather than person-centred.

●       In co-production with family carers. There are currently too many opportunities to exclude families from the development of CTPs

●       Before an individual is admitted to a unit: if the system is working as it should, individuals should have a CTP prior to admission (which includes crisis planning to prevent admission). Information about what is to be provided in the community can then be amended upon admission to adapt to what needs to be provided in the hospital/unit. Having a support/ risk register for people with LD/A (with a risk of admission element) is an opportunity for LAs and ICBs to work together to meet the person’s needs early on and help prevent escalation of needs and crisis situations. Collaborating to develop a CTP for the person in the community, could be one of the interventions at a certain point/ risk level, in the same way that a community CETR may be a suitable intervention at a particular point. 

●       In line with the principles of preventing admission and facilitating discharge

●       In collaboration between hospital-based and community-based clinicians, who should be working collaboratively to produce these plans. It is often noted that hospital-based clinicians may not have up-to-date knowledge of what can work for people with learning disabilities in community settings, while community-based clinicians should also be able to provide input into planning treatment provided in the unit.

CTPs should include:

●       Requirement to be implemented by all relevant professionals, including community professionals from the person’s home area, not just the RC

●       How care could be provided in the community. They should detail what circumstances in the community make treatment in an inpatient setting necessary and what bespoke services needed to be implemented by local authorities to ensure an individual can be supported in the community going forward

●       Crisis planning to prevent future admission for example, 24-hour support team; safe and familiar spaces that can be used during a crisis period to provide space and respite from home

●       What the person was like prior to admission

●       Reasonable adjustments that the person needs

●       Environment

●       Thorough detail, informed by someone who knows the individual well and has expertise on learning disabilities and/or autism on what is the least restrictive way in which care could be carried out, including measures to prevent an escalation in restrictive practices such as restraint, seclusion and medication

●       CTP should record the expectation and journey (and emphasise that detention is only a short-term option).

●       Communication and sensory needs

●       Advocacy arrangements

●       Other aspects of care including:

○        Contact with friends and family,

○        Fresh air,

○        Meaningful activity,

○        A person-centred skills-building programme based on the individual’s aspirations

○        Reasonable adjustments needed to ensure physical health needs are monitored and met. We see numerous cases where people who have learning disabilities and/or autism are not getting adequate support for physical health needs. Neglect of physical health needs in inpatient units can have very serious consequences - see Cawston Park SAR[37].

Meeting education needs must also be considered for children and young people. This should be detailed in comprehensive CETRs that respond to need and are followed, and include education alongside all the points listed above. For Children and young people with an EHC Plan this should include ensuring they receive the provision specified.  

Admission of people with learning disabilities and autistic people to an inpatient unit/mental health ward should be predicated on a ‘clinical contract’ between commissioners, originating clinical staff, and inpatient unit/providers - wherein a clear rationale for admission is communicated to the inpatient service. This ‘contract’ would detail the expected clinical outcomes for the person from admission, against which treatment provided would be judged. It should also include what community activity/ support needs to be taking place, with timescales, to enable successful discharge back to the community.

Admissions for assessment and treatment should be based on a clear, detailed and outcome-focused care and treatment plan. The plan should specify what issues require further assessment, what this would add to what is already known about the individual, why this assessment can only take place in a hospital setting and what added value this would be expected to bring to their overall pathway of care.

The contract should be reviewed regularly to assess whether treatment is found to be fulfilling the responsibilities set by the clinical contract (using assessment tools, clinical observation etc).

○        This should operate alongside more rigid and regular health monitoring which assesses whether key indicators and health needs are being met and whether medication side-effects may be impacting a person’s health.

Other

Suggestion:

Schedule 1 – remove ‘suffering’ from…a learning disability

A learning disability is a life-long impairment. It is outdated language to say someone is ‘suffering’ from a learning disability. This should be changed.

21 September 2022