Written evidence submitted by Embracing Complexity (DEL0090)
Embracing Complexity is a coalition of 53 organisations working together to co-ordinate campaigning and research for people with neurodevelopmental conditions (NDCs). The coalition is led by Autistica, the UK’s autism research charity. Our first two reports, published in May and October 2019, are available at www.embracingcomplexity.org.uk. We estimate that around 1 in 10 people have a neurodevelopmental condition,[i],[ii] including but not limited to autism, learning disability, dyslexia, dyspraxia, ADHD and Tourette syndrome. Research shows that people with NDCs already experience significant health inequalities; these are likely to be exacerbated as a result of the COVID-19 pandemic, which poses particular challenges for this group at a time when existing support systems have been curtailed.
People with various NDCs are already more prone to a range of health conditions; [iii],[iv] sadly, people with some NDCs often die years before their neurotypical peers.[v],[vi] When people with NDCs do become ill, they may have difficulty in booking appointments, navigating healthcare environments and understanding and being understood by health professionals.[vii],[viii],[ix],[x] While the move to remote appointments has made accessing healthcare much easier for some people with NDCs, others find telephone or video calls very difficult, while physical changes may be harder for professionals to spot themselves when the patient struggles to explicitly communicate them. Some may struggle to communicate with professionals wearing personal protective equipment (PPE) which restricts their ability to gauge facial expressions or use sign language. Similarly, new guidance on the Mental Capacity Act in light of COVID-19[xi] highlights the likelihood of changes to care and treatment for people without the relevant mental capacity to consent; Deprivation of Liberty Safeguards assessors are advised not to visit care settings unless this is essential. Services should consider how to offer a range of formats for appointments in future – online, over the telephone and, where safe and necessary, in person – to ensure that people with NDCs can access healthcare in a way that meets their needs. Reasonable adjustments should still be sought, implemented and monitored wherever possible.
In addition, people with NDCs and their families are also at greater risk of developing mental health difficulties.[xii],[xiii],[xiv] Many people with NDCs struggle with anxiety, managing uncertainty[xv] and social isolation, and the COVID-19 outbreak and resulting lockdown are exacerbating these challenges. People with some NDCs, such as Rett syndrome, and their families will be required to isolate completely for 12 weeks, which will have a particularly significant impact on mental health and family relationships. People with NDCs already struggled to access suitable mental health services before the pandemic;[xvi] a return to pre-coronavirus service levels will not be enough to meet rising demand.
At the same time as the anticipated rise in mental health difficulties, the Coronavirus Act allows for relaxation of the Mental Health Act[xvii] - when enacted, one doctor will be able to approve sectioning rather than the usual two, the appeals system will be effectively suspended, and time limits on mental health detention may be extended. People with NDCs, particularly autistic people and people with learning disabilities, are already disproportionately represented in inpatient units;[xviii] these are often unsuitable for their needs, preventing recovery and resulting in many remaining in inpatient units long-term. These changes to the Mental Health Act may exacerbate the problem, with more people with NDCs being sectioned for longer. The changes should be monitored closely and should not be kept in place for longer than necessary.
It is crucial to ensure that children with NDCs are adequately supported through their return to school; many children with NDCs experience acute anxiety in school settings and it is likely they will find it significantly harder to return to school than the average pupil. Relaxation of guidance around exclusions could lead to even higher rates of exclusion among pupils with NDCs than pre-coronavirus – this should be closely monitored and appropriate action taken to prevent discriminatory exclusions.
Many of our members are particularly concerned about the easements to the Care Act,[xix] now in force in some areas. Under these easements, local authorities who become unable to comply with the Care Act will not have to carry out the detailed assessments, financial assessments or preparation of care and support plans usually required. This could mean some people with NDCs who are newly seeking support – at a time when support needs are likely to increase due to the other pressures of COVID-19 – may be less likely to have their needs met. Meanwhile, duties to meet eligible care and support needs may be replaced with a power to meet needs, allowing local authorities to prioritise the “most pressing needs” over others. This could result in people with NDCs receiving less support at a time when they need it most, and also comes at a time when specialist charities are being forced to cut back on their own services due to a drastic loss of income. In some cases, reduction in access to carers will leave elderly parents – who are themselves vulnerable – caring for their adult children with no support. The Government should closely monitor the impact of these easements and ensure they are not in place for any longer than necessary.
As the current crisis stabilises, we must not overlook the lasting impact on people with NDCs in the years to come. For many, adapting to the changes of a “new normal” will be just as difficult as adapting to the changes of lockdown. Mental health problems already common amongst people with NDCs are likely to rise and worsen significantly, and we still know little about the potential lasting neurological effects of COVID-19. As the job market worsens, the existing high rates of unemployment amongst people with NDCs[xx] are also likely to rise, which again has a knock-on effect on mental and physical health[xxi] and will widen existing health inequalities. Again, this is exacerbated further by the impact of COVID-19 on the charity sector; some of our members, particularly those serving people with rare conditions, fear they may not survive the current crisis. People with NDCs often struggled to access what limited support existed before COVID-19; existing support will not be enough to cope with rising demand in the aftermath. Greater investment, research and involvement of people with NDCs, their families and carers in service design and decision-making will be crucial to ensuring people with NDCs are adequately supported and have the same opportunities as their peers in the future.
[i] Estimate based on Department for Education figures on pupils with special educational needs, January 2019. <bit.ly/2RFIIKf>
[ii] Gillberg C (2010) The ESSENCE in child psychiatry: Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations. Research in Developmental Disabilities 31(6), 1543-1551. <bit.ly/3esiV26>
[iii] The Learning Disability Mortality Review (LeDeR) Programme Annual Report 2018. University of Bristol. <bit.ly/2RER6JP>
[iv] Rydzewska E, et al. (2019) General health of adults with autism spectrum disorders – A whole country population cross-sectional study. Research in Autism Spectrum Disorders 60, 59-66. <bit.ly/2YAYWIJ>
[v] Yang Q, et al. (2002) Mortality associated with Down’s syndrome in the USA from 1983 to 1997: a population-based study. The Lancet 359(9311), 1019-1025. <bit.ly/2V8e2mW>
[vi] Hirvikoski T, et al. (2016) Premature mortality in autism spectrum disorder. British Journal of Psychiatry 207(5), 232-238. <bit.ly/2Wrp1Yk>
[vii] Building Happier, Healthier, Longer Lives: Briefings to improve autism policy and research. Autistica, 2019. <bit.ly/3eqcgFm>
[viii] Nicolaidis C, et al. (2015) “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism 19(7), 824-831. <bit.ly/2z4CRrx>
[ix] Embracing Complexity: Towards New Approaches for Supporting People with Neurodevelopmental Conditions. Embracing Complexity, 2019. <bit.ly/2XGUlVg>
[x] Lennox N & Kerr M (2007) Primary health care and people with an intellectual disability: the evidence base. Journal of Intellectual Disability Research 41(5) 365-372.
[xi] The Mental Capacity Act (2005) (MCA) and Deprivation of Liberty Safeguards (DoLS) During the Coronavirus (COVID-19) Pandemic. Department of Health and Social Care, 9 April 2020. <bit.ly/2RH6aXC>
[xii] Simonoff E, et al. (2008) Psychiatric Disorders in Children with Autism Spectrum Disorders: Prevalence, Comorbidity, and Associated Factors in a Population-Derived Sample. J Am Acad Child Adolesc Psychiatry 47(8), 921-929. <bit.ly/2VyZs7a>
[xiii] Lever A & Geurts H (2016) Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder. J Autism Dev Disord 46, 1916-1930. <bit.ly/3bh8V9U>
[xiv] Cooper S, et al. (2007) Mental ill-health in adults with intellectual disabilities: prevalence and associated factors. The British Journal of Psychiatry 190(1), 27-35. <bit.ly/2S588Bd>
[xv] Rodgers J, et al. (2017) Towards a Treatment for Intolerance of Uncertainty in Young People with Autism Spectrum Disorder: Development of the Coping with Uncertainty in Everyday Situation (CUES) Programme. J Autism Dev Disord 47(12), 3959-3966. <bit.ly/2yY6E4W>
[xvi] Camm-Crosbie L, et al. (2018) ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism. <bit.ly/2W2EZsJ>
[xvii] Coronavirus Act 2020, Schedule 8. <bit.ly/3bhuQhd>
[xviii] Tromans S, et al. (2018) The Prevalence of Autism Spectrum Disorders in Adult Psychiatric Inpatients: A Systematic Review. Clin Pract Epidemiol Ment Health 14, 177-187. <bit.ly/2Y3Yfrs>
[xix] Care Act easements: guidance for local authorities. Department of Health and Social Care, 1 April 2020. <bit.ly/3evHz1G>
[xx] The autism employment gap: Too Much Information in the workplace. National Autistic Society, 2016. <bit.ly/2QW7m78>
[xxi] Dorling D (2009) Unemployment and health. British Medical Journal 333:b829. <bit.ly/2VwA1mE>