Written evidence submitted by Jami (MHB0046)
Jami is a mental health charity; our mission is to enrich and saves lives impacted by mental illness and distress in the Jewish community.
We guide people through the challenging journey of navigating mental health services, providing emotional support and expert advice. We provide professional, person-centred treatment and support for young people and adults with mental health needs, as well as for their families and carers.
Through education and training we equip people with the skills and knowledge to be resilient, inclusive, and better able to support mental illness and distress, reduce stigma, and build mutually supporting relationships across the community.
This document has been drafted with input from peer support, occupational therapy, and social work at Jami from both our adult and children and young people’s services. It is based on our professional expertise and experience, drawing on case examples and views expressed to us by people using services.
- The need to ensure people with autism and learning disabilities receive appropriate care when experiencing a crisis is welcomed, however what is not clear is how the decision will be made regarding the co-morbidity of mental illness with autism and learning disability. The other concern is how will spaces where people are detained be designed with appropriate training for staff to work with people who have autism and learning difficulties? This is especially difficult in crisis as any change can have a negative impact on a person’s behaviour. The change of routine for someone with autism or the use of ‘jargon’ for someone with a learning difficulty are just a couple of examples. It is a scary time being in a place you do not know; with people you do not know, and this can increase the crisis even more.
- In consultation with parents who use our children and young person’s mental health service they speak clearly about the challenges of getting the right support for their children. 43% of the children and young people in our service have co-existing neurodiversity or a learning disability. These children tend to fall through the gaps in services.
- The changes to improve the Care and Treatment Reviews for people with autism and learning difficulties are a good step to preventing admission. However, in our experience, the services for autism and learning difficulties are stretched and overwhelmed, with people waiting a long time for assessment / diagnosis, threshold for community and therapeutic support is incredibly high.
- Thus, leading to this cohort struggling to manage their day to day lives which unfortunately means mental health crisis is more likely. What changes will be made to ensure that in the absence of hospital admission for this cohort there will be appropriate places for assessment, respite, treatment, and rehabilitation?
- We believe the reciprocal and intertwined relationship between autism, learning disability and mental health requires significant integration and resource. There needs to be greater focus on prevention. Early intervention and additional resources for this cohort will enable them to live more independently with less risk of crisis. There is a need to have wider access to diagnostic assessments and trained professionals.
- The changes to the level of risk that a patient must pose to be detained to ensure people can only be detained if they pose a risk of serious harm either to themselves or to others in principle should mean that there are less restrictive practices. However, there are several concerns. Firstly, we are aware of widespread coercive practice with ‘voluntary’ or ‘informal’ patients who although not legally detained are subject to restrictive practices. They have been either under the ‘threat’ of detention if non-compliant or due to staff shortages and other organisational / institutional practices their liberties and freedom of movement have been restricted. We would ask where in the bill will this be addressed?
- If detaining a young person is necessary, more thought needs to be given in the environment that they are put in. A general adolescent unit is not an appropriate place for someone with ASD in crisis, for example there may be too much sensory overload, coupled with a lack of expertise / training for staff.
- Additionally, the voluntary sector has seen an upwards trajectory of supporting people with complex mental health and social care needs, who are experiencing elevated levels of distress and who are in mental health crisis. This has been a direct consequence of reduction in NHS community mental health services and growing socio-economic inequalities. Current national health and social care policy calls to the voluntary sector to address community needs and calls for better integration across sectors. What it does not acknowledge is the voluntary sector is diverse and complex with diminishing funds further exacerbated by impact of cost-of-living crisis. Thus, creating a challenging environment.
- While less detention seems like a promising idea, what happens to those in crisis who do not meet the threshold, those who are not placing themselves or others in immediate danger but are desperately needing inpatient treatment and therapeutic intervention, so their crisis does not become harmful? There does not seem to be an effective route for this cohort to receive inpatient treatment or have somewhere ‘safe’ and ‘therapeutic’ to go, in our experience they are falling through the gaps.
- We currently often hear the crisis teams and psychiatric liaisons explanation for a person not being admitted is that they are not ‘unwell enough’ or ‘they have capacity,’ despite being actively engaged in suicidal behaviour. How will this change ensure people who need a bed get one and that it is an appropriate environment? Will voluntary beds be more widely available, and can we ensure we do not leave it too late to deem someone at enough risk to get treatment?
- There is a great deal of concern about the High Intensity Network’s Serenity Integrated Mentoring (SIM) model. Service users are being told they ‘have capacity to end their life’ as a reason for not providing support or treatment, their distress is often being criminalised. Does the bill do enough to challenge these harmful practices?
- This calls for a major overhaul in community-based services to support people in crisis experiencing elevated levels of distress. The fear is the voluntary sector is and will continue to be holding far more risk and distress, without any contingency for people to receive support. This tension between charities like ours and our statutory partners causes further challenge.
- What happens to people who do not meet the enhanced criteria but are still at risk, in distress and without treatment will deteriorate?
- CTOs are highly criticized; our peer support team feel strongly this stretches existing coercive practices into the community. The onus on an individual complying with their CTO is at odds with the reality of people needing readmission due to socio-economic factors and a lack of community support.
- We do not feel the bill goes far enough to reduce this. Making it harder to place someone under a CTO will only go so far. What practices and measures will be put in place to support people with their mental health and ensure their social care needs are met to prevent crisis and potential for readmission?
- The criteria for therapeutic benefit of appropriate medical treatment needs careful consideration. Treatment and interventions for mental illness may involve medication, psychiatry, and psychology but it also involves peer support, occupational therapy, social work, access to housing and financial assistance and much more.
- Can we be assured that when the bill is discussing treatment the therapeutic benefits of all of these are considered? Can we also be assured that patient choice and autonomy will be considered to determine therapeutic benefit?
- Will additional resources be put in place to ensure this wide range of interventions grounded in evidenced based practice will be made available during hospital admissions to give those detained a better chance of recovery? Over the last 10 years this type of provision has diminished in hospitals and in community care.
- There is a concern that hospitals are increasingly becoming a place of safety with little therapeutic benefit, could this be open to being weaponised to prevent admission and treatment in an already overstretched service? Will community services have increased resources to provide interventions that are of therapeutic benefits as outlined above?
- With regards to ensuring faith and cultural needs are met and that these aspects of a person’s life are considered when planning support and treatment, we call for more emphasis in care planning to incorporate this. Listening to faith leaders, listening to groups that represent the diverse parts of different communities, additional training for staff are all important aspects.
- The Jewish community is diverse, with a complex interplay between faith and culture. There are some practical elements, such as being aware of dietary needs, rituals and observances over Shabbat and Jewish holy days for those who observe them. However, to really understand how a person’s faith or cultural needs can be met an individual and person-centred approach is required. Additionally, there needs to be an institutional context where these needs are welcomed, made accessible and there is resource to meet them.
- The shift to providing more choice and autonomy regarding medical treatment is welcome, however the concern is that even if the person had capacity when the advance decision was made, there are conditions that mean it can be overridden. Therefore, the power very much remains with the medical professionals, opposed to giving true autonomy and choice to patients. What will ensure those powers to override a person’s decision will not be misused?
- Clarity over ‘capacity’ and ‘competence’ will serve to ensure the wishes of young people who are not under the MCA but are deemed competent are considered.
- The addition of nominated person opposed to nearest relative acknowledges the diverse and complex family situations people may be in and takes away the assumption that a family member will act in a person’s best interests. We would urge however that the nominated persons are somehow vetted to prevent against any abuse of power. The bill refers to being able to terminate this position, but will there be any preventative measures? In our experience many people we work with are vulnerable to exploitation from people who they regard as friends. Conversely will there be safeguards to ensure the nominated person is fully aware of the responsibility of this role and the rights of the person they are supporting?
- There are many examples of coercive practices on patients classed as voluntary, we feel that this change will be vital in promoting more choice and autonomy and holding mental health service and professionals to account, thereby enhancing the quality and safety of the services.
- Our question is, what is the workforce strategy for ensuring enough advocates are trained and recruited? We are in the middle of a workforce crisis in health and social care. Will registered advocates in the voluntary sector be given the same ‘weight’ as those employed in statutory services or in services commissioned by statutory grants? There are many charities like ours, who have a growing advocacy service but are not in receipt of statutory funding or grants.
- We urge for there to be a commitment to ensuring underrepresented and marginalised groups facing the highest levels of inequalities are more than represented in advocacy provision. This is an opportunity to ‘level up.’
- Will specialist provision of advocates for children and young people be made available?
- The removal of police stations as a place of safety is a crucial step, what alternative provisions will be made? Will the widespread practice of NHS crisis teams advising services to contact the police and ambulance services in the event of a mental health crisis also be stopped? Will they be able to respond in a timely way to manage risk? Will the damaging practice of the High Intensity Network’s Serenity Integrated Mentoring (SIM) and criminalising of distress also be stopped to align with this important move? Often these cases are people who have been failed by the system or who need long term therapeutic input that is not available.
- We would like to see an increase in peer respite centres for young people and adults with close partnerships with NHS trusts to ensure seamless and coordinated support to ensure people are able to access the right support at the right time. This enables distress and risk to be held in a safe and joined up way between sectors and allows for better movement between the two.
- We call for there to be more explicit resources to be made available for the voluntary sector. Many of these welcome changes will have an impact on an already under resourced sector. The current situation in mental health services is already having an increasing effect in terms of the complexity of support being needed in communities and the levels of distress and risk being held. National policy, and indeed this bill call for the voluntary sector to meet a growing amount of community mental health and social care needs.
- Additional commentary on how the implications of this bill will interact and impact on health and social care policy is needed. Meaningful consultation with people who use services and people working across sectors is welcomed.
Summary of recommendations
a) Appropriate spaces with trained staff for people in crisis who have autism and learning difficulties and in the absence of hospital admission appropriate resources for assessment, respite, treatment, and rehabilitation.
b) Greater focus on prevention and early intervention to enable people to live more independently with less risk of crisis.
c) Ceasing the coercive and restrictive practice that exists with ‘voluntary’ or ‘informal’ patients.
d) Better provision for those in crisis who do not meet the threshold for admission
e) Ensuring that people who need an admission get one in an appropriate environment
f) Call for a major overhaul in community-based services to support people in crisis experiencing elevated levels of distress and provision to ensure social care needs are met to prevent crisis
g) Ensuring that the therapeutic benefits of all treatments and interventions for mental illness, distress and trauma and considered, such as peer support, occupational therapy, social work, access to housing and financial assistance alongside medication, psychiatry, and psychology.
h) Make sure that patient choice and autonomy will be considered to determine therapeutic benefit of interventions.
i) Additional resources for community services to provide interventions that are of therapeutic benefit as outlined above (g & h).
j) Listen to faith leaders and groups that represent diverse parts of different communities, additional training for staff.
k) A person-centred, individual approach to understand how a person’s faith or cultural needs can be met. Additionally, there needs to be an institutional context where these needs are welcomed, made accessible and there is resource to meet them.
l) Ensure safeguards so that the power to override a person’s advance decision will not be misused.
m) Urge that nominated persons are vetted to prevent against any abuse of power and ensure they are fully aware of the responsibility of this role and the rights of the person they are supporting.
n) Robust workforce strategy for ensuring enough advocates are trained and recruited.
o) Consideration for registered advocates in the voluntary sector to be given the same ‘weight’ as those employed in statutory services or in services commissioned by statutory grants.
p) A commitment to ensuring underrepresented and marginalised groups facing the highest levels of inequalities are more than represented in advocacy provision.
q) Specialist provision of advocates for children and young people
r) Termination of the widespread practice of NHS crisis teams advising services to contact the police or ambulance in the event of a mental health crisis
s) For the ceasing of the damaging practice of the High Intensity Network’s Serenity Integrated Mentoring (SIM) and criminalising of distress
t) An increase in peer respite centres for young people and adults with close partnerships with NHS trusts
u) More resources to be made available for the voluntary sector.
v) Additional commentary on how the implications of this bill will interact and impact on health and social care policy.
w) Meaningful consultation with people who use services and people working across sectors is welcomed.
16 September 2022