Supplementary written evidence submitted by the National Autistic Society (MHB0088)
What is your perspective on the Bill’s proposal to apply different provisions to people with learning disabilities or autism who are civil patients as opposed to those who come through the criminal justice pathway?
Answer:
We share concerns about the differentiation between criminal justice and civil provisions. It is important that the law does not result in a greater risk of criminalisation. There is also a great need for prisons and prison staff to also strive for better understanding of autism and how to cater to autistic needs.
However, it is also important not to overestimate the suitability of hospital for those that are detained via the criminal justice system. Options to challenge lengthy detentions are lacking once somebody is detained within a mental health hospital under Part III of the Mental Health Act, meaning that ongoing evidence to justify detention is no longer required. Ultimately this means that detentions can be imposed for far longer than prison sentences. This is a particular concern for cases in which hospital is not a better suited environment for an autistic person, for example if they do not have a co-occuring mental health condition and when there is no therapeutic benefit to their hospitalisation.
We would like to see a clear commitment to reducing those detained under Part III of the Act. Strengthening duties to provide community-based alternatives to detention would be beneficial to autistic people and reduce reliance on Part III of the MHA as well as decreasing the risk of autistic people and people with a learning disability encountering the criminal justice system. Surveys and interviews carried out by NAS have highlighted both lack of autism diagnosis and a lack of support from school and other services as contributing to autistic young people going on to offend or reoffend. Increased services are needed in areas including school exclusions, diagnosis waiting times and in liaison and diversion. Clause 2 of the draft Bill, New Section 125E sets out that ICBs and Local Authorities will also need to have regard to risk registers and the needs of the local ‘at risk’ population when carrying out their commissioning duties, we would recommend that these risk registers apply to the entire act including Part III.
Clause 30 of the draft Bill introduces a new form of supervised community detention for eligible patients detained under Part III of the act. We agree that community-based alternatives could potentially be a beneficial alternative to inpatient stays. It is important to clarify however, that this will be contingent on the level of community support that can be provided and those involved in this stage of care having sufficient understanding of autism. It also depends on conditions being established with a sufficient understanding of autism and learning disability as well as not being too onerous and impossible to comply with.
We would also like to reinforce our position regarding the urgency for the need to proceed with the reforms to the Mental Health Act. It is important that potential consequences of reforming the Act do not become reasons to sacrifice the much needed, progressive principle behind the reform. Reforming the Act should instead provide further impetus to use measures including the Government’s ‘Building the Right Support Action Plan’ and the NHS Long Term Plan to prevent the escalation of people’s needs. Waiting for wider reforms before addressing the inappropriate use of the MHA on autistic people and people with a learning disability will result in continued and avoidable human rights violations.
Assessment and treatment
Is the 28-day assessment period under Section 2 appropriate for mental health professionals to assess people with learning disabilities and autism?
Answer:
A 28-day assessment period under Section 2 for autistic people and people with a learning disability that may or may not have a co-occuring mental health condition, could be necessary for an assessment of needs in emergency situations. We also think that the preservation of this as an option strengthens the argument for removing the ability to detain an autistic person or person with a learning disability under section 3 of the Act if a mental health need that can be therapeutically treated is not established. The 28-day period should be sufficient to evaluate whether there is a justifiable reason to continue the detention. We do not believe that any extension of this period would be proportionate and could lead to longer unjustified detention by stealth.
When considering whether the use of Section 2 is appropriate, it is important to consider the fact that high numbers of autistic people do suffer from poor mental health. Our 2019 Mental Health Survey found that 94% of autistic adults reported experiencing anxiety and 83% reported experiencing depression.[1] We therefore, recommend adding language to the Clause 3 detention criteria amendments to clarify that when an autistic person is detained using s.3 of the MHA, this should be because they fulfil the detention criteria on account of their mental health condition alone. This should help to prevent autistic people, that do have a co-occurring mental health disorder but are not eligible for detention based on that mental health disorder alone, moving from section 2 to section 3 at the end of the assessment period.
We would also recommend that the principle of therapeutic benefit is duly considered during this assessment period. A thorough examination of whether therapeutically beneficial treatment can be provided should also prevent the problem of diagnostic overshadowing. For example, for many autistic people also diagnosed with a mental health condition it is reasonable and likely that any potential for treatment to be therapeutically beneficial is undermined and rendered impossible within an inpatient setting. This would mean that any additional diagnoses that are preexisting or assigned during the 28-day period would not be sufficient alone to justify ongoing detention. This should safeguard against additional mental health diagnoses for example emotionally unstable personality disorder, being assigned to autistic patients in order to justify detention.
For both Clauses 1 and 6 of the draft Mental Health Bill to have the intended impact, health professionals will need training that enables them to evaluate the severity of co-occuring mental health conditions in autistic people and successfully differentiate between autism and symptoms of a mental health condition. The fact that autistic people and people with a learning disability both with and without additional mental health diagnoses are still eligible for detention under section 2 also reinforces the need to make sure that the sensory environment of mental health hospitals and the understanding and expertise of staff is sufficient for the needs of this group.
Are further changes necessary to ensure that people with learning disabilities or autism and a mental disorder that might warrant detention are given treatment that is suitable to their specific needs?
Answer:
Clause 6 of the draft Mental Health Bill sets out the requirement for treatment to be ‘appropriate.’ We are concerned this does not place enough emphasis on therapeutic benefit and recommend that ‘appropriate’ is altered to ‘therapeutically beneficial.’ The proposed reforms to the Mental Health Act mean that autistic people, with a co-occurring mental health condition experienced at a severity that warrants detention, are eligible for compulsory treatment. It is therefore, imperative that focus remains on making sure that detentions under these circumstances are able to provide therapeutic benefit. It is also crucial to make sure that the definition of ‘therapeutically beneficial’ takes into consideration the full hospital environment and the specific and negative implications of hospitalisation for autistic people. It is reasonable to suggest that for many autistic people, therapeutically beneficial treatment is not attainable within these settings. In these circumstances, the individual should be discharged and not detained unnecessarily.
It will also be necessary to consider whether treatment, that may be considered therapeutically beneficial for particular conditions, can be adapted to suit the needs of autistic people and people with a learning disability. We know that often adjustments will be needed to fulfil the communication and sensory needs of autistic people for example in the case of autistic people that do not communicate via speech. Our conversations with healthcare professionals have highlighted inconsistencies with training, meaning that often professionals lack experience with supporting autistic people’s mental health and can lack confidence with autistic clients.[2] Further research into the influence of an autism or learning disability diagnosis on the success of therapeutic interventions will help to improve understanding and confidence. Clear guidance will be needed.
As well as this, specialist autism training must be prioritised. The ‘Oliver McGowan mandatory training in learning disability and autism programme’ must be rolled out to all staff as promised and as quickly as possible. This is crucial for both community and inpatient services to be able to adequately tailor treatment to the needs of autistic people and provide staff with the skills and expertise required.
Safeguards
Will making Care (education) and Treatment Reviews a statutory requirement be enough to ensure they are effective?
Answer:
Placing C(E)TRs on a statutory footing within the MHA reforms has been posited as a way to speed up the discharge of detained autistic patients. It is something that our charity has called for for several years. However, we recommend that provisions around enforcing C(E)TRs are strengthened to be sure that these can perform effectively. As currently expressed, Clause 2 new section 125A places the right to access the C(E)TR process on a statutory footing, but does little to make sure that actions from the C(E)TR are enforced. New section 125C requires the patient’s responsible clinician, the responsible commissioner 9 and appropriate ICB must have ‘regard to’ recommendations resulting from C(E)TRs. We are concerned that the use of ‘regard to’ will not lead to following recommendations, as they can be easily dismissed. We suggest strengthening the duty with alternative language that suggests a duty to promptly fulfil recommendations from C(E)TRs unless a good reason not to can be demonstrated. This should also be reinforced and clarified in guidance.
We would also recommend that the maximum period between reviews is reduced in order to recognise the reality that needs and circumstances could drastically change within the current maximum time period and mean that inpatient stays are prolonged unnecessarily. We would suggest that a maximum period of 6 months in between reviews is enforced.
The draft Bill places a duty on ‘Integrated Care Boards’ (ICBs) to monitor individuals ‘at risk’ of detention. Will this help care services to intervene before detention?
Answer:
Trust within the mental health system will need to be rebuilt amongst autistic people and those with a learning disability after the years of abuse, overmedication, inappropriate restraint and seclusion disproportionately faced by this group. It will be important for the Government to be cognisant of this group’s reasonable mistrust of the system when setting out regulations for the registers. However, we feel that the draft Bill represents an opportunity for meaningful change and could be a catalyst for making sure that autistic people and those with a learning disability receive the right care at the right time. It has been over a decade since the scandal at Winterbourne View, making it all the more urgent that the MHA is reformed effectively. It will be imperative to build on existing dynamic risk registers, which have not had the desired impact, because of inconsistent use and a failure to proactively identify people at risk. Inclusion in the draft Bill is an important strengthening of this, but the Government will also need to issue clear guidance on implementation of the registers.
It is crucial that the identification of risk is met with the offer of further support and the use of risk registers should be applied in a way that fully considers the wishes of the individual. Being listed on a risk register should present an opportunity to highlight the most beneficial ways to prevent deterioration or crisis and the individual concerned should be fully involved in decision making, be given the opportunity to direct their own care and treatment and have their autonomy respected. It is imperative that risk registers are positioned and used as a tool for individuals to request care and support that will protect and improve their wellbeing rather than being used as a justification for surveillance or decreasing independence or decision-making capabilities.
At present, it is unclear what the Secretary of State’s guidance for risk registers will comprise. We recommend that the ICB risk register is broad in application and covers the entire Act to guarantee maximum benefit. A holistic view should be taken that recognises the impact of multiple factors including school exclusions and interactions with police. To gauge the usefulness of this exercise further clarity is also needed on exactly how the collected data will be used to reduce the risk of admission.
Clause 2, New Section 125E sets out that ICBs and Local Authorities will also need to have regard to risk registers and the needs of the local ‘at risk’ population when carrying out their commissioning duties. Again, we are concerned about the use of ‘regard to’ and recommend that this language is amended to require a duty for ICBs and Local Authorities to collaborate to meet the needs of the local ‘at risk’ population unless a good reason not to can be demonstrated. Prioritising this duty and commissioners’ roles in applying it will underpin the success of the MHA reform. It will also be far more cost effective than inappropriate and expensive inpatient admissions.
Advocacy
Are the draft Bill's proposals for expanded advocacy services enough to ensure that people with learning disabilities or autism are able to get their voices heard?
Answer:
Advocacy is being detrimentally impacted by a lack of funding, high case-loads and inconsistent understanding and training amongst individual advocates that work with autistic people and people with a learning disability. The high case-loads of individual advocates has a disproportionately detrimental impact on autistic people and people with a learning disability that often need additional time with an advocate. This can be as a result of communication needs and preferences or due to the complexity of the individual cases, difficulty with getting access to the patient and an unwillingness from institutions to facilitate contact, along with the fact that it may take longer to build rapport and trust particularly for those that have faced adverse experiences. We therefore recommend that alongside introducing the proposed ‘opt-out’ advocacy system that there should be national commissioning for advocates. This would allow for advocates to have a capped case load and for advocates working with autistic people and people with a learning disability to receive more specialist support and training.
We are aware that private healthcare providers frequently commission their own advocacy services rather than using local authorities to do this. This raises concerns about the quality and independence of such services which is a particular concern for autistic people that are more likely to be in a private placement. Again, we think that this could be addressed by national commissioning for advocates.
Our conversations with autistic people and their families have shown that the right to advocacy is not always clear to those in mental health hospitals. We therefore, support the change to ‘opt-out’ advocacy and suggest that this is extended to informal patients that are autistic and or/ have a learning disability.
Minority groups and women
The Independent review found that people from minority groups and women experience higher levels of detention. Is enough consideration given in the draft Bill to specific issues facing patients from these groups who also have learning disabilities or autism?
Answer:
NHS Assuring Transformation Data shows that at the end of August 2022 there were 1,970 autistic people and people with learning disabilities are in inpatient mental health hospitals in England. 5% of inpatients were Black, 3% were Asian and 3% were of Mixed ethnicity. There is insufficient evidence on the experiences of autistic people from ethnic minority communities including those of Black African and Caribbean heritage, but we know it can be even harder for autistic people in these communities to get the support they need across all areas of life, this includes access to diagnosis and so the percentage of Black autistic people and people with a learning disability that are in mental health hospitals is likely to be much higher. We believe more research is needed into the experiences of autistic people from ethnic minority communities, to identify and address the barriers to receiving appropriate care.
In 2015 women made up 24% of autistic people and people with a learning disability in mental health hospitals, this has since risen to 31%. Again, late diagnosis and diagnostic overshadowing means that this figure is likely to be far higher. Improved understanding and clear diagnostic pathways for people in inpatient settings that are suspected to be autistic must be established. As well as this, more research is needed to understand the current gaps in care for autistic girls and women that leave them more prone to reaching crisis.
An awareness and understanding of minority groups must be adequately considered when a patient held under s.2 of the MHA is being assessed. The minority groups mentioned are historically less well understood and less frequently diagnosed, making it imperative for mental health professionals to have sufficient specialist training needed to make an accurate diagnosis. The needs of these groups should also inform the bill via community commissioning provisions and the ICB risk register. Further specific indicators of risk for minority groups including Black people, women and girls should be included in the Secretary of State’s guidance regarding ICB risk registers. The risk factors and barriers faced by these groups should also be used to form the basis of an adequate supply of preventative care. It is also crucial that those from minority groups are able to access culturally appropriate advocacy, something which again national commissioning could help to address.
21 October 2022
[1] National Autistic Society working with Mind (2021), Good Practice Guide, p. 7.
[2] National Autistic Society working with Mind (2021), Good Practice Guide, pp. 14-17.