Written evidence submitted by Dimensions’ (MHB0061)
We welcome the exclusion of learning disability and autism from the definition of a mental disorder in section 3 of the draft bill. This is as an important step towards de-medicalising approaches to supporting people who have a learning disability and/or autism.
At the end of July 2020 there were still 1990 learning disability and /or autistic people who were inpatients. 1,115 (56%) had a total length of stay over 2 years. This is unacceptable and has a detrimental impact on the individuals, their families and means beds are potentially unavailable for people in crisis.
However, we believe that the aim of the reforms: 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.
We are concerned that unless this happens, individuals will fall through the net, their condition potentially deteriorating, with the possibility that they are detained or enter the criminal justice system (CJS).
As professionals we want to avoid detention that may wrongfully attribute their behaviour to their neurodivergence. There is also a risk that professionals may force a diagnosis on individuals to justify detention.
We are concerned that those who are no longer detained under the Mental Health Act 1983 are deprived of their liberty under the Mental Capacity Act 2005 (MCA) instead, under its ‘Deprivation of Liberty Safeguards’ (DoLS) or – in the future – the ‘Liberty Protection Safeguards’.
If a clinician deems it as being in a person’s best interests to be in hospital for whatever reason and if the person cannot consent to this, the MCA DoLS can be used to detain them.
The interface between the MHA and MCA is complex and those entangled within it will have an incredibly hard time understanding and exercising their rights. Accessible information must be available for people with learning disabilities and/or autistic people and their families, friends and support workers.
For those who are currently detained in hospital we are concerned about the effect of the requirement in section 2 that “serious harm may be caused to the health or the safety of another person, unless the person is detained”. This is a risk-averse strategy that focusses on negative behaviour rather than positive evidence that an individual is responding to treatment and can live with support in the community. We need to guard against caution that keeps people locked up. Particularly, when we know that the hospital environment often causes behaviours of distress.
We support a 28-day time-limit for transfers from prison to hospital for acutely ill prisoners (subject to an ‘exceptional circumstances’ let-out) and ending the temporary use of prison for those awaiting assessment or treatment. Shortening s.3 to 3 (from the current 6) months at the first instance, then 6 months, then 1 year at a time).
Greater access to independent mental health advocates (IMHA) and the introduction of duties on hospital managers and others to notify advocacy services about qualifying patients is a positive step forward.
We welcome the recommendation to place C(E)TRs on a statutory footing which requires decision makers to follow recommendations made by them.
The duty on ICBs to establish a register in their area of individuals with a learning disability and autistic people who are at risk of hospital admission, and to monitor their care and treatment requirements is a positive development, but only if used proactively to prevent admission & ensure good community support. This also requires flexible funding models to support fluctuating mental health issues. And another consideration is if people can only be on it with their consent where does that leave those without mental capacity?
It’s vital that communication methods such as Makaton sign language and training in autistic communication styles is implemented throughout the workforce to make these recommendations practical. It is also important to commission sensory integration trained occupational therapists with capacity to assess and recommend appropriate plans.
Successful implementation of the reforms is contingent on investment to ensure an expanded and fully trained mental health workforce is in place to deliver them. This is in addition to the numbers required to meet the NHS Long Term Plan commitments. Without the required investment, proposed changes to improve patient rights and safeguards, as well as the services they receive, will not be realised.
Commissioners must conduct in depth market engagement and research to understand community capacity / gaps to deliver specialist support and then reflect this realistically in procurement processes. Poor commissioning leads to inadequate service provision. The ICB should have oversight of the system and with CQC monitoring.
Within the Mental Health Act the nearest relative has been a problematic concept so a nominated person is likely to be beneficial as long as it isn’t used to silence family members who are deemed to be a nuisance. We need to ensure that the role of the nominated person is not abused if they can be overruled in some medical circumstances. More consideration is also needed to determine how the nominated person would work if a family member is still involved in the person’s support.
Supervised discharge would allow patients who no longer require hospital treatment, but can’t currently be released because they still pose a risk to the community, to be lawfully deprived of their liberty in the community to ensure necessary restrictions are in place to support their risk. This will be life changing for lots of people and allow a pathway out of hospital. What is the power of recall under this? If someone is detained under the criminal section of the act, is there an automatic entitlement to review? Otherwise, patients risk being called back into hospital at any time. We need to ensure that patients aren’t on supervised discharge for long periods of time and they have the opportunity to have their deprivation of liberty lifted. We are aware that clinicians are reluctant to be responsible for people in the community and this therefore needs closer scrutiny so that it is workable.
A right to statutory care and treatment plans for certain detained patients is a positive addition to the draft bill. We also welcome the reforms to part 4 of the MHA, which seek to regulate compulsory medical treatment. However, we are cautious that these aren’t used to reduce appropriate medical treatment to save money and time.
The additional safeguards for patients who refuse urgent ECT treatment are important but we would like to see an end to the use of all ECT altogether.
We are concerned that the Government has stated that full implementation of the reformed act won’t take place until 2030-2031 which is a very long timeframe given that far too many people are being detained and reform is urgently required.
Adequate funding, training, housing and collaborative working with NHS is essential for this to work. Pathways of support for people if they are heading into crisis will also need to be clear. Complex support packages require safe staffing levels which must be assessed on a needs basis and not to try and ‘fit in’ with an hourly rate set by commissioners.
We are concerned that this bill does not ensure that autistic young people have a right to sufficient community support to avert crises. Currently they don’t meet the threshold unless they also have a learning disability, and families can’t provide 24/7 support (for suicide risk for example.
16 September 2022